Part 38 - The Holiday...

“Happiness is living each day as if it were the last day of your vacation...”

Me & Jodie had been together for 7 months when we went away for a few days for our first little holiday together (along with Noah, of course). In fact, the day we went, 19th June, was 7 months to the day that we officially got together. That wasn’t planned, but sometimes fate has a way of helping things in your life happen at the right time.

My uncle owns a static caravan on a really nice site in Whitby. Other family members had stayed there previously & said how nice it was, but I never had...& I had been missing out. The site was really quiet, which was actually really nice. The scenery around it was typically picturesque as you would expect from the Yorkshire countryside – plenty of green fields, nature, local sights & landmarks. The itself was quite close to Whitby itself, & particularly the Abbey as you could see it really well from the road to the caravan site. I think we were probably closer than either of us had expected to be.

We had planned our few days away a little while in advance, but the closer it got the more anxious I had become. Not because I wasn’t looking forward to it, the opposite of that was true...I couldn’t wait. I was feeling anxious because it would be the first time since my stroke that I had been away from home for an extended period of time. I know it was only going to be for two nights, & I had been used to being away overnight with work for a long while previously, but this had me feeling a little bit out of my comfort zone & I would be lying if I said that it wasn’t worrying me.

Since the stroke, every time I plan to do something, no matter how small or what it is, I will always think “what if”, it has become second nature to me. I suppose it is a coping mechanism that kicks in that makes me go through every scenario in my head to make sure that I’m ok with something before actually doing it. It isn’t necessarily always a bad thing, but it can cause a bit of friction, & it did that with me & Jodie. I am very much like my dad in that I always try & just deal with things on my own, it’s just how I have always been, I’ve never been used to having someone there, as in a girlfriend, to talk to about things & deal with things with. I’m 36 years old, I’ve been used to doing things my way for so long, & it is hard for me to open up about some things to people, especially when it’s something that has stemmed from the stroke, which most things do these days.

In the days leading up to us going to Whitby, I had been feeling quite fatigued. I’ve struggled with fatigue since the very early days after the stroke, some days are great & the fatigue doesn’t really bother or affect me, even though it’s there. But some days are absolutely horrendous, even doing small things seem to take every bit of effort I have. Some days it is a struggle to force myself out of bed for work on a morning, & any stroke survivor who struggles with post stroke fatigue will tell you that is no exaggeration. But before Whitby I was feeling fatigued & tired & it worried me about going...& it did cause a few cross words between us.

I was worried that I wouldn’t be able to drive there or back (I start to feel tired after driving mid-to-longer distances) & with having Noah in the car with us it made me even more conscious of it. I was worried that I wouldn’t be able to do much when we were there because of the fatigue & tiredness I had been feeling. I was worried that I would spoil the first little holiday we’d had together because of the fatigue. And it was hard for me to admit this even to myself, never mind say it, & that’s what caused us to have that little falling out. Everything the stroke has thrown at me in 2 & a half years, I have dealt with on my own, yes family & friends have been there as support, but I have only ever told people what I have wanted to tell them, I have only let people in as much as I have wanted to. I don’t think people know just how hard it is for me to open up about how I am feeling, when the cause of how I am feeling is because of the stroke. I knew, in all likelihood, that nothing would happen to me while we were away, but that thought of “what if” is always there in the back of my mind, & it only takes one little trigger to make it come flying back to the front again, making me question anything & everything. That constant fear of what might happen is always going to be there, & I have accepted that & have learned to live with it. But now that I am in a relationship (a very happy one I want to point out), & there is a child who has maybe come to rely on me, I’m not just thinking about myself when I worry, or when I wonder “what if”, I am thinking way more about those two & how things would affect them than I am about myself. And that has been hard for me, because for nearly two years, I was on my own, & now I have two incredible people in my life & the thought that if anything happened to me while I was with them absolutely breaks my heart because I wouldn’t ever want them to have to see or experience that.

I’m getting better at opening up about things, I think (although Jodie is probably the best person to ask about that). It is hard & always will be, & I know that I have to maybe open up a bit more, but people also have to give me the space & time to do that. I want to be the best version of me that I possibly can, especially for Jodie Noah, but there are days where I don’t even feel like “me”, days when I don’t recognise myself, days when I just want to give up because I am tired of being tired & sick of fighting against my own body & my own mind.

But I want to end this post on a positive note – our first little holiday together was a success, it was absolutely amazing & I am so glad that we did it.

It was pouring down on our way there & when we first got there, but the weather changed quite quickly & it was really sunny for three days. We went into Whitby, went to the amusements, had ice creams (Noah dropped his on the floor), watched the boats on the water, went into Scarborough for the day, went to the Sealife Centre (highly recommend!), played on the beach, built sandcastles, paddled in the sea (Noah also crawled into & laid in it), had fish & chips. There is a nice quote that I want to end with, “the tans will fade but the memories will last forever”. And we definitely made memories that will last a lifetime.

Part 37 - Here we go again...

My weight is something that I have struggled with my whole life. I was always bigger as a kid, & throughout school, if there was any time that you fell out with anyone, or had disagreements; it would always be used as something to insult you, that was just the standard & only thing to resort to. It never really bothered or affected me, I grew up with a really good group of friends & we would always look out for each other.

After leaving school & starting work in April 2000, nothing really changed, I was still bigger &, to be honest, it didn’t really bother me too much most of the time, but sometimes it REALLY did. It never affected my ability to do my job or to make friends or do anything else, but it did make me feel quite self conscious when it came to going for nights out, especially when the majority of my friends & people I worked with were a lot slimmer than me. In my head, because they were skinnier, it automatically made them look better than me. Looking back I know now that it was silly to think like that, but hindsight is a great thing...& the reason I have explained all of this is because, recently, I got weighed for the first time in AGES, & it was a bit of a shock...

As anyone who has followed my journey on social media since having my stroke nearly 2 & a half years ago will know, I lost 3st 1lb in a little over 3 months. When I was taken into hospital on that Saturday night, one of the things they done was to weigh me, & I was 17st 2lb, the heaviest I had ever known myself to be. If I am honest, I still don’t know to this day what shocked me more, actually having the stroke or being so fat! I was mortified when the nurse wrote down my weight & told me what it was (in KG, I had to look up the conversion into stones & pounds on my phone a few days after). Maybe over the years I had been heavier, but I had never been weighed so I didn’t know it...I was blissfully ignorant should we say.

One thing the consultant told me while I was in hospital was that I needed to get my weight down to a healthier level as being so overweight played a big part in me having the stroke. It was a kind of domino effect, a build up of a lot of things over so long all coming together all at once. I knew I needed to lose weight but like so many other people, I always promised myself that I would do something but never got round to it. So after the stroke, & after hearing that from the consultant, I knew that I had to finally do something, & I did. I went to the GP after receiving some advice from someone & ended up back at the gym I used to be a member of on a 12 week referral program. It was a resounding success, with my physical & mental health becoming so much better, I felt fitter, stronger & healthier than at any other point in my whole life. And I finally lost weight...3st 1lb in total. I’d done it but, knowing what I know now, & even though it took absolutely every effort I had to do, that was the easier part. Fast forward over 2 years & I find myself needing to do the same thing all over again, however, not to the same extent.

A couple of weeks ago, for the first time in a long time, I got weighed. It wasn’t by choice; it was at my annual heart review appointment with a nurse at my GP surgery. After I’d been weighed she said that she was concerned with the increase, the first heart review I had in June 2017 was at the height of my weight loss & everything was great. Then in June 2018 I had gained 3lb over the preceding 12 months, which I could live with. After all, I had returned to work after being off for 8 months due to the stroke & it was always going to be more difficult to maintain what I had been able to do. Then at this year’s appointment it had all gone wrong. I felt sick when she told me the weight, I felt disgusted that I had allowed myself to fall so far after doing SO well for SO long. If I am completely honest, I could have cried I was that frustrated & angry with myself. But, since the stroke, I have tried to remain positive about things & not let things get on top of me, however, this did.

There have been some pretty big changes in my life over the last 12 months. I was made redundant from my job of nearly 8 years in July 2018. I wasn’t out of work for long, thankfully, & after a week I was back working at the company I had previously been at for over 10 years. It was like ‘going home’. However, after starting my ‘new’ job & after going to the gym regularly every week & watching what I was eating as best I could, for some reason I slowly stopped going to the gym & I didn’t go back for months, I also started eating things that, before, I wouldn’t have. I think I got content with where I was &, maybe, a bit complacent in thinking that, because I had already lost the weight, I wouldn’t end up in this situation again. I couldn’t have been more wrong...

Recently I have been suffering with post-stroke fatigue more & for longer than at any other time over the last 2 & a half years. Looking at it & being brutally honest with myself, it is no coincidence that having stopped going to the gym & being active & watching what I eat, that I have been really struggling with the fatigue. I know that the two things are linked, as strange as it is, being more active helps to ease the fatigue. But sometimes it is just so hard to drag myself to the gym or to do something even remotely active or strenuous because I feel so wiped out...for no apparent reason. I know there IS a reason, but it is so hard to explain it to anyone who hasn’t experienced it for themselves. Before the stroke I’d felt fatigued, but after the stroke I truly know the meaning of the word.

I have made the decision to push myself again, to go to the gym 2-3 times a week again, to eat much healthier again, and to be more active in general again. As a starting point, I am nowhere near where I was in 2017, I am in a much better place mentally & physically, but I know that there is still a lot to do & I am determined to do it all over again, whatever it takes. The fatigue can sometimes dictate how often & for how long I can go to the gym, but I am going to do this again. I am more determined now than I probably was then, because I have been there & done it once, so I know what is possible. I know that being at work full time will make it a little more difficult, but I am determined to do it again. I have to, because knowing the part being so heavy & so unfit & so inactive played in me having the stroke, the thought of going back to that place, or anywhere near it, & the thought of having another stroke one day absolutely terrifies me. It makes my blood run cold just thinking about it. I refuse to let it happen & will do absolutely anything it takes to get to where I want & need to be. I have set myself my own target & goal, & I am determined to not only hit it, but to absolutely smash it just like I did the first time!

Part 36 - The fatigue continues...

“The strongest have their moments of fatigue” – Friedrich Nietsche.

It’s been a little while since I spoke about my fatigue, but recently over the past few weeks, it seems to have stepped up a few levels in its intensity. Since my stroke it’s never not been there, it always has in some form & some days are better than others, just as with any side effects of my stroke. They’re always there, even if sometimes you can’t see them or feel them, when they want you to know they’re there they really let you know.

Post stroke fatigue is something that I have struggled with massively, & I have always been honest about it. In the beginning I would try to fight it, thinking that if I tried to push through it, it wouldn’t get the better of me, & for a very short time that worked. But then the more I fought back against it, the harder it hit back & it just ended up being a pointless, vicious circle of fatigue setting in > me fighting it > me feeling a little better > fatigue hitting back ten times as hard & writing me off for days at a time. It was a cycle that I had to break because I just couldn’t cope with feeling like that anymore.

Post stroke fatigue (or any other type of neuro fatigue) is something that is very hard to explain to people who have not experienced it for themselves. The majority of people when you mention the word fatigue automatically think ‘tired’, which part of it is, but it is SO much more than just tiredness. There is, in my opinion, still an ignorance around the subject, with a lot of people not really wanting to learn more about it & the way it affects us. Research has been & continues to be done, but much more is needed. I’ve been to see a GP about my fatigue before, a while ago now admittedly, but there was not really anything he could say, do or prescribe because there is so little understanding of the condition. On one hand it is very frustrating as a sufferer because I just want someone/something to help me, but on the other I also have sympathy with them because, as health care professionals, they want to be able to provide the best possible care to their patients & they are not always able to do that.

Recently my fatigue has been worse than it has for nearly a year & I don’t know why. Over time you kind of get to recognise triggers & causes, & you can usually react, stop doing whatever might be setting it off & try to ride out the storm that inevitably hits you. But it is not always possible to head it off as sometimes it hits without any warning at all, like the past few weeks.

At the end of April I had a week off work (well, technically 10 days with bank holidays), the first full week I’d had off since returning to work after my stroke. It was a planned week off & my girlfriend was also off that week & it was nice to spend the week together, including her little boy. Every day we were off we managed to do something & take the little one out places & it was a really nice week off, culminating in us going to Durham for the day & night for our birthdays (which I would recommend by the way, such a beautiful city & full of really nice restaurants & pubs/bars). However, on the Sunday before I went back to work I found myself feeling really tired &, unlike previous times, there were no warnings, no signs....nothing. But as I’ve said before, it is not just a feeling of tiredness, it is like a fog has settled inside of your head, it is all encompassing & sometimes it is all that is on your mind. You find yourself looking at the time & planning out inside your head how you can get through however long is left until it is time to go to bed. You set a time & then list in your head everything that you still need to do before then & how you can do it with the least impact. I know to some people that might sound a bit extreme, but to me that is the reality of suffering with a neurological after effect of a brain injury. Sometimes it is just getting through the day until you can get back into bed, sometimes that feels like such an achievement. But then you have to get up & do it all again, & that feeling of being absolutely exhausted as soon as you wake up & get out of bed on a morning is one of the most demoralising & demotivating feelings I have ever had.

It is very hard to deal with, both mentally & physically, & it is hard not to let it get to you. That is exactly how it has felt recently, it has been so hard, & I have tried not to let it get to me but it does & it has. It feels like my body is letting me down again every time it happens, the same as it let me down the night I had my stroke. Some mornings it has been a massive struggle just to get out of bed & showered on a morning before having to go to work, THAT is exactly how it has felt, I have felt completely worn out & run down & it has been hard to deal with at times. Very hard. And no matter what you do, sometimes it just doesn’t help to alleviate the chronic feeling of being fatigued. Sometimes just physically resting isn’t enough as it is just as much a mental thing as it is physical, but I find that there is just no way of switching off from it once it has taken hold & it has got into my head.

Something else that has been happening again recently, as it does nearly every time I am struggling with fatigue is the panic attacks. And not just any panic attacks, but panic attacks in my sleep. Sometimes I will know it’s happened as I will wake up during the middle of the night & be absolutely drenched in sweat & I will feel very anxious, short of breath, my head will be hurting & my heart rate will be rapid. Other times I will wake up feeling exhausted & generally not great, & my girlfriend will tell me I’ve had a panic attack in my sleep & I’ve been shaking, trembling & mumbling so she has put her hand on me for reassurance or she has cuddled into me & I have come out of it. And the fact that she also has to deal with this makes me feel awful because, in the job she does as a nurse, she works long shifts & does nights & it is not fair on her. And I know that she will tell me it is ok, that she doesn’t mind, but I do, & I hate that what happened to me is now also affecting her. But there is nothing I can do to stop it, there is no magic cure for post stroke fatigue or neuro fatigue, as much as I wish there was. Hopefully one day there will be & hopefully it will be within my lifetime so that, maybe, I can enjoy a ‘normal’ life again, even just for a short time.

But I will never let this beat me. And the fatigue & any of the other after effects can throw whatever they like at me, I will keep going, keep working at managing it as best I can & keep trying to look for & recognise the triggers & causes.

I’ve come this far, a long way since the stroke over 2 years ago, & I don’t plan on giving up now. I will keep going as long as my body will allow me to. I’m very stubborn...my stroke chose the wrong person if it thought I was just going to lie down & accept it.

Part 35 - The battle within...

“Everyone you meet is fighting a battle you know nothing about, be kind. Always”.

I’ve been thinking about writing this post for a while now, but never have because I didn’t want to dig up old memories & feelings from when I was at my lowest. And then I remembered why I started writing this blog in the first place, which was to help other stroke survivors, by writing about my experiences, good & bad. And after reading a few things from other survivors on social media recently, about how they’re feeling, I wanted to write this post to let them know that they’re not alone, that so many of us have also felt the same.

I remember when I was laid in my hospital bed after my stroke, during those hours when there was no-one else there with me, with nothing but my own thoughts to keep me company. Those hours seemed like days, & some of the days seemed like weeks. When you have nothing else to do but think, your mind goes at 100mph. You over think everything, to the point where you talk yourself into/out of things over & over again. I remember those times.

And I remember after I was discharged from hospital, when I went back home for the first time, seeing the living room exactly as I’d left it the night I’d had the stroke & been taken into hospital. The bits of discarded paper & plastic from the paramedics still on the floor, the glass of water I’d made myself still there. It was as though time had stood still & it was such a surreal feeling. I have always been open & honest about my experiences, both when writing my blog posts & when talking about things to people, & one thing I have always been completely honest about was the fact that I really struggled when I left hospital & didn’t have the safety net of the doctors & nurses being around me 24/7. It wouldn’t be a proper account of my journey if I wasn’t totally honest about my struggles & the bad times, & I wouldn’t want other stroke survivors to think that it has all been plain sailing for me, because in the beginning it was far from it.

Having a stroke is a life changing event, & the life of a stroke survivor afterwards can often be a lonely place because, as much as people try to empathise with us, & no matter how hard we try to explain certain things to people, it is so hard for someone to put themselves in our shoes. I’ve been guilty of it myself, & still am now, of not talking about things maybe as much as I could or should, because I know the other person might not understand. But if we don’t talk more, then people will never be ABLE to even try to understand.

Depression is something that many people are still embarrassed to speak out about, there is still a stigma attached to it that you are somehow weak if you admit to having mental health issues. The truth is that there are far more stroke survivors suffering with & dealing with depression, anxiety & other mental health conditions on a daily basis than most people probably realise.

Having the benefit of hindsight, I can now look back & see that I was suffering from depression in those early days. Sometimes it was hard to even get out of bed, everything felt like such an effort, & I was trying my hardest to just get through each day so I could close the door, get back into bed & just forget about everything. For a good 6 weeks after my stroke, this was the constant feeling I had, that I just wanted to get through the days...I was existing but I wasn’t living.

And inside my head was a dark place at times, I was only focused on the bad things, I wasn’t thinking about anything positive. There were times when I actually felt like it would have just been better if the stroke had been it for me, better for me, better for everyone around me. Don’t get me wrong, I have never had any kind of suicidal thoughts in my life, even at my lowest, but there were some days where I honestly felt like if the stroke had finished me off that night it would have been the best thing for everyone. So that I wouldn’t have been feeling the way I was, & so those around me didn’t have to see me like that or be around me like that. There were times when I would start crying for no reason, when I was watching the tele, or taking my medication, or making something to eat. I would just get this wave of sadness & the tears were uncontrollable. The best feeling I can think of to liken the after effects of a stroke to is that of when you’re in mourning, & the thing you’re mourning is the life you used to know. The thing about having a stroke is that it happens so fast, you don’t get time to react &, in an instant, your whole life & whole world has been completely changed & turned upside down. Nothing is ever the same. But the one thing it does give you is time. Time to reflect, time to re-evaluate, time to make changes.

And for all the times I did wish that the stroke had been it, I am thankful every single day that it wasn’t. I wouldn’t have got to see my two nieces, who I absolutely love to bits, growing up. I wouldn’t have got to go on the rest of this crazy journey, join the gym, lose the weight, and change my life for the better. And I wouldn’t have got to meet my girlfriend, who I love more than anything, & her little boy. I wouldn’t have had the chance to find someone to share my life with someone who is not only my girlfriend, but also my best friend & partner in everything we do. I wouldn’t have got the chance to be something I hadn’t been in a very long time....happy.

Physical wounds heal, but mental scars are always there. Life scares me to death, but the thought of not being here anymore scares me even more.

Part 34 - 6 weeks later, 2 years on...

Wednesday 8th March 2017, the day I had both dreaded & wanted equally – the day of my 6 week follow up with the stroke consultant. After I was discharged from hospital I was re-admitted 8 days later, so I didn’t know exactly when my 6 weeks would be, would it be from the initial discharge date or from the second discharge date?

There were a few weeks after the initial discharge that I didn’t hear anything, not from the stroke ward, the community stroke team (CST), the stroke nurse, no-one, which felt quite isolating & frightening. As the 6 week date got closer & I had still not heard anything, I decided that I would need to get things moving myself so I rang the secretary of the stroke consultants at the hospital. Not that it was as straightforward as that, nothing ever is. I didn’t have any contact details so tried phoning the reception desk at the hospital who gave me a number to try but it wasn’t who I needed. As my mam works at the hospital I asked if she would be able to try & get me a number or email address or something so I could find out about my follow up appointment. Thankfully she was able to get me a number, one that worked! When I rang, I explained to the lady who answered that I’d had a stroke on 21st January & was told I’d have a follow up appointment 6 weeks after discharge but hadn’t heard anything to confirm when mine was. She told me that she didn’t have anything on the system so would need to speak to someone else & get back to me. When you’re already all over the place mentally & emotionally, to not get an answer to something as simple as this just sets your mind racing more – had I slipped through the net? Was I not on their system? Had I been forgotten about? All of these things go through your mind, irrational thoughts get in & you think things are worse than they actually are.

It didn’t take long for the secretary to get back to me, a couple of hours at most if that. And when she did, she confirmed that I did have a follow up appointment booked in, for 8th March, & a letter had already been sent out to me. Things were already in place &, had I waited a couple more days, I would have had the letter of confirmation. But a stroke messes with your mind, in more ways than one, & the irrational thoughts had already crept in. But after receiving the date for my appointment, I felt relieved but also a little bit scared & apprehensive...this, after all, is the time when the consultant goes through everything with you, from the cause of your stroke, to your recovery & how you are feeling.

I have always been honest & open when writing on my blog or when talking about my stroke that those first 6 weeks post-stroke were the worst of my life. I was in a dark place back then, probably more so than I thought at the time. After I had been discharged from hospital, I put on a front that I was fine & everything was ok even though I felt absolutely dead inside. I would spend days on end in bed, only coming downstairs to take my medication or if I knew someone was coming over so it didn’t look to them like there was anything wrong. When I first came home my mam came over to my house most days, just to see how I was & see if there was anything I needed, & I would always say to her to text me when she was on her way over so it would give me time to get sorted, get downstairs & make it seem to her like I had been there all day. And this went on for weeks. I was in quite a deep depression at the time but I didn’t want to admit it because that would mean having to face up to what had happened.

So as the day of my appointment got closer, I still didn’t know what it would actually entail, so I tried to reach out to the medical professionals I had been in contact with on social media who had helped me so much already, & they all said more or less the same thing – think of all of the things I wanted to ask the consultant & make a list of questions as this would probably be the best opportunity I would get to have that time with one of the stroke doctors, & it was good advice. So, in the days before the appointment, I sat & thought about everything, the stroke & everything that had happened since, & I made a list of questions I wanted answering. There wasn’t a lot, but it was everything I had wanted answering.

On the morning of the follow up appointment I remember feeling really nervous & a bit scared – what if what he would tell me wasn’t what I wanted to hear? What if it was bad news? As I was still unable to drive, I had to get the bus to the hospital, something I had gotten strangely used to doing again, even though I hadn’t had to get the bus for 11 years, it just became second nature. Because I was so apprehensive about the appointment & what the doctor might tell me, I asked my mam to come with me, half for moral support & half to be a second set of ears just incase I couldn’t take everything in. On the bus to the hospital I was quite restless & fidgety in my seat, I couldn’t stop my mind from racing & thinking that it would be bad news. I think I had convinced myself it would be bad.

When we got to the hospital we needed to find the rehab day unit, this is where the consultants held their clinics. Luckily as my mam worked at the hospital she knew roughly where it was so didn’t take long to find. As we got there quite a bit earlier than my appointment time, we walked back down the corridor to where there was a little cafe situated & we sat & had a drink while we waited to go back, but I couldn’t concentrate, my mind was elsewhere... When it was closer to the time, we walked back down to the day unit where I had to sign in & confirm my attendance, then we were shown to the waiting room. We sat on the chairs near to a window & there was a table close by with a load of magazines on, but I couldn’t read anything, I don’t think I could have concentrated as I just wanted to get my appointment started. Then, after around 10 minutes or so, the doctor came out of his room & called my name....

When we got into the doctors room we sat down, me on the chair closest to his desk & my mam next to me, & he asked me how I was & how I had been since the stroke & since being discharged. Obviously I didn’t tell him what I had actually been feeling & how I had actually been managing, I just said that I was fine & had been managing ok, I think both not to let my mam know & also incase he was going to use what I told him as part of his findings. Silly really, but it was the irrational thought process that had taken over again. But I needn’t have worried, because what would happen over the next 20 minutes would change everything – it changed the whole course of my recovery.

When Dr Anwar started talking to me, he explained a little more about my stroke & what had caused it, but he said that, providing I followed the advice of the doctors, it should never happen to me again. This was something that I had wanted to hear so much, & it was something I had written down to ask him, about the chance of recurrence. But the way he explained it, it all started making sense, the reason it had happened, what had caused it. There were several lifestyle factors that played their part in what happened, but it wasn’t just overnight things, these were things that had been building up over months & years & it was inevitable that something was going to happen, it was just a matter of time, & looking back, there were definite indicators that something wasn’t right but you don’t think at 33 years old that you are going to have a stroke.

After Dr Anwar had spoke for a while & explained things a bit more, he brought up the picture of my first CT scan, taken on the night I was admitted only hours after my stroke. It was the first time I had seen it, in fact it was the first time I had seen a scan at all. He pointed out a white area on the scan & explained that this was my stroke, this was the area of my brain where the blood flow was cut off & the cells had died. I was sat there in shock as it was such a large area, it made me feel a bit sick. He then went on to explain that, even though that part of my brain was now not working, it would take a bit of time for my brain to ‘re-wire’ itself & for other parts of my brain to take over the jobs that the dead cells could no longer do. It was a lot to take in but it did all make sense to me the way he explained it, the things I was experiencing at that time were all linked to fact that my brain was working extra hard to compensate.

After talking to Dr Anwar for a while, he had answered everything I had wanted him to & so much more. Well, all except one thing – would I be able to resume driving again? When I asked him, he said that he could see no good reason why I shouldn’t as long as I felt ready to do so myself. He said that there were no neurological reasons he could see, so as long as I felt comfortable, I could drive again. This was HUGE for me, it would give me back some of the freedom & independence that the stroke had taken away from me.

After the appointment had finished I left Dr Anwars room feeling on top of the world, it was the best I had felt since the stroke & the first time I think I had smiled a genuine, happy smile in over 6 weeks. I felt like crying I was so happy. He had explained things to me so well & in a way that I could understand, & I will always be grateful for that as it really did change the whole direction of my recovery. I started my GP referral at the gym around the same time, changed my eating & drinking habits & the rest is history.

So, yeah. Wednesday 8th March 2017 was the day that everything changed. For me, this was my stroke independence day, & there was no looking back. This was the day I started the fightback & the stroke wasn't going to win.

Part 33 - The right prescription...

Medication – a drug or other form of medicine that is used to treat or prevent disease.

When I was laid in my hospital bed after my stroke, for some reason, it never occurred to me that I might be prescribed any medication when I was discharged. The full seriousness of what had happened hadn’t hit me at that time is the only reason I can think of. While I was in hospital I was being given aspirin at certain intervals, but I had always known them for being a painkiller, not a blood thinner...but by the time I left hospital, I would certainly know more about medication than I ever thought I would need. All around me on the stroke ward people were being given different kinds of tablets, which I assumed would be for different things, but I was wrong! I am now on four different tablets, & I will explain a bit about each of them below if you would care to read on...

I suppose it was a kind of blissful ignorance of never having needed medication long term before that made me think, in my own head, that I wouldn’t need it, that somehow even after what had happened I would just magically not need any kind of medication. I remember on my discharge day the consultant Dr Kumar came over to my bed with the ward pharmacist to tell me that he would be prescribing me two tablets – Clopidogrel & Atorvastatin. At first I was a little confused as I had both never heard of these tablets before, & I had not been given any to take while on the ward, so...why now?

I asked Dr Kumar what they were for & he explained that the clopidogrel was an anti-platelet, something that stops your blood being so ‘sticky’ so it prevents clots from forming. When it was explained to me it made sense, but I asked why I wasn’t going to continue with the aspirin that I had been taking while in hospital, & he said that both himself & Dr Anwar believed that an anti-platelet was the best medication for my individual circumstances & that not everyone who has a stroke is prescribed a blood thinner. And that’s when the realisation that different medications can do the same job dawned on me...when I thought of stroke meds, I had always associated blood thinners. And I suppose it was also then, when I was laid on my bed talking to the consultant about medication that the realisation of the full extent of what had happened also hit me, & it hit me hard I can tell you, because it was then that I learned that I would probably be on this medication for the rest of my life.

The second tablet I was prescribed by the doctors, atorvastatin, is a statin that helps to stop the build up of cholesterol. I had never heard of statins before so asked why I needed it & he explained that my cholesterol level was very high upon being admitted after my stroke, & I would need something to help to keep it lower to prevent any clogging in my arteries. When I first arrived in hospital my cholesterol was considered of a dangerously high level by the doctors, so something had to be done to bring it down. A healthy diet, exercise, all of those things go such a long way to keeping your cholesterol level low, but when it already at a very high level & you’ve just had a stroke & have limited mobility on one side, exercise is not something you consider immediately.

So, that was that & I was discharged with my new medication. So here’s the fun part, the side effects...& by ‘fun’ I obviously mean horrible. Every single medication that is prescribed comes with warnings of some side effects, some more common, some less so, but, me being me, I am THAT person who, if a side effect listed is dizziness, you can put your money on it that I will feel like I’ve been spinning on the spot constantly for the first few weeks I am taking them. I don’t know why, it’s just always been like that with any tablets I’ve ever been prescribed. Dizziness & I seem to have a love/hate relationship...it seems to love me, but I hate it! But it doesn’t just stop there, drowsiness is another side effect that follows me around with each different tablet, but this time, at least, I didn’t know exactly what was causing the drowsiness...the tablets or the post-stroke fatigue I was suffering with massively at the time. Happy days...

So, as I mentioned at the beginning of this post, I am now on 4 different tablets & I have only spoke about 2 so far, so what are the others & what are they for...so I will tell you.

Eight days after being discharged from hospital I was re-admitted with stroke-like symptoms – it turned out, thankfully, not to be another stroke, but I was suffering with, as I would be diagnosed later, with panic & anxiety disorder, but more about that shortly.

While back in hospital the doctors were concerned about my blood pressure & how high it was. When I was taken into hospital immediately after my stroke, it was very, very high but the doctors were happy enough with how I was. However, upon being re-admitted, they had taken much more of an interest in it. I was only in hospital overnight that second time, & when I was discharged, I was prescribed Ramipril. Another tablet I had never heard of, I asked what it was & they explained that it was to help keep my blood pressure lower, at least to the level they like stroke patients to be (top line reading of 130 & below is considered acceptable). Dizziness as a side effect is something I talk of above, but the dizziness I experienced when first starting to take the ramipril was on a whole new level! Because my body wasn’t used to it, & because when you first take it it really drops your blood pressure, I found myself prone to horrible dizzy spells. And whenever I stood up from being sat or laid down, I would get this delayed ‘rush’ of blood to my head & I would feel a little unsteady on my feet for a second or two. Of course, with all that had happened previously, it panicked me so I arranged an appointment with a GP who was very understanding & explained that it was perfectly normal to feel like this after starting ramipril & as my body became more tolerant to it, it would gradually get better & could possibly subside (which it still hasn’t 2 years on, but it is nowhere near how bad it used to be, thank god!).

And, finally, the fourth tablet I am currently prescribed is Sertraline. As I mention above, & anyone who has followed my stroke journey via social media or on this blog, I was diagnosed with panic & anxiety disorder, which is apparently very common among stroke survivors, particularly young stroke survivors. I remember the day I was diagnosed &, strangely, it was actually a massive relief to know what it was & confirm that wasn’t going slowly mad!

There were times when I would be just sat at home & I would get tingling sensations on my arm, leg & head...the opposite side to the one affected by the stroke, so this caused me to panic probably more than I would have. I would feel weak, light headed, and tight chested...all classic symptoms of anxiety, but it wasn’t something I ever considered myself to be suffering from. Until that appointment with the doctor one rainy afternoon. She prescribed me the sertraline at the lowest dose of 50mg & said to take it for a couple of weeks & to then arrange a review appointment with her to see how it was helping. She also explained to me that, as sertraline is an SSRI (selective serotonin reuptake inhibitor) it would take between 4-6 weeks to fully feel the benefit of the medication, & after starting it, it could make the feelings of anxiety heighten before settling down again. And she wasn’t wrong!

Anyone who has suffered with anxiety & been prescribed any of the many different medications, they will know exactly how this feels. For those reading this that haven’t, I sincerely hope that you never do because it is something I wouldn’t even wish upon my worst enemy. Anxiety is such a complex & frightening thing, it makes you feel like you are losing control & it makes you feel sometimes like your body & mind are letting you down. But there are SO many people suffering from anxiety who don’t even know it, they are struggling through every single day, not wanting to talk about it or ask for help because they feel like they will be ‘bothering’ a doctor (I am guilty of this too, by the way...it took me way longer than it should have to ask for help). I have spoken to a few other stroke survivors recently & they have all mentioned things that sound so familiar to me, they are in the exact same place that I was 2 years ago & I completely understand & sympathise where they are on their own stroke journeys. But I will do my absolute best to help anyone that I can through my own experiences, & will always only be a message or email away from anyone – survivor, carer, family member or friend of anyone who needs help, or reassurance or guidance, because I have been there, I have felt all of the things that they are feeling right now & I want to help in any way that I possibly can.

Part 32 - Two years Down...

Saturday 19th January 2019 – the second anniversary of my stroke (to the day, not the date as my stroke was on 21st January 2017). Another milestone passed, another year post-stroke.

As I write this, the 2nd anniversary of my stroke was 3 weeks ago, & I did plan on writing a blog post to mark the occasion, however, I never got around to it. Not because I had nothing to say, or because I didn’t want to, I’ve just been reflecting on the last 12 months...& not just the last year, but the last 2 years since the stroke.

It’s only when you take the time to stop & really think about everything that’s happened that you realise how far you have came & how much progress you have made. But it also makes you realise that some scars (mental & emotional in my case, not physical) will take much, much longer to heal. Whether they ever will at all is just something that I will have to hope happens.

Whenever I think of my stroke, there are two different types of memories, emotions & feelings that I get overcome with. The first is that I am taken back to that Saturday night on 21st January 2017, at around 8:30pm when it happened, & I still remember everything so vividly, like it only happened yesterday. I still remember the panic, the fear, the helpless feeling when something is happening to you & you have absolutely no control over it. I still remember phoning 999 & talking to the lady on the other end & trying to explain what was happening to me & asking her to stay on the phone to me while the ambulance was on its way so that if anything else happened then someone would know (I was alone at the time of my stroke, so this was a big thing for me). I still remember the first responder who came out to me who, after checking me over was not going to take me to hospital, but I also remember his telephone call to the stroke ward at North Tees Hospital & the nurse cutting him off mid sentence & telling him to have me brought in straight away. I remember the ambulance that came to take me to hospital & the two female paramedics that were working that night. I remember arriving at hospital & having the first CT scan, being taken to the ward, having my obs taken every 15 minutes. I still remember all of the subsequent tests over the following days to try & find the cause of my stroke...the x-rays, the ultrasounds, the CT scans & the MRI. I remember being discharged from hospital & going back home feeling lost, alone & frightened, having to come to terms with this life changing event & not knowing who to talk to or where to find out more information about what had happened. I have said previously that those first 4-6 weeks after leaving hospital were probably the hardest of my life, & I still think that to this day.

But as well as all of the above, I am also reminded of all of the good things that have happened since the stroke. How I started using the gym again for the first time in years, & started to not only enjoy it, but actually look forward to going. I remember how, over the course of my initial 12 week GP referral to the gym I managed to lose 3st 1lb in weight, & for the first time probably ever I felt good about myself & how I looked. I remember the feeling of pride in myself thinking back to when I was doing my physio &, but the end of it, being able to do all of the exercises & movements because there were some in the beginning that frustrated me almost to the point of tears, but I never gave up...that’s just not me. I’m too stubborn to give up; I like to prove that I can do something, probably more to myself than anyone else. I also think of how, after starting off small, being able to walk 6 miles at a time (I LOVED going out walking, I don’t do it enough these days but it is something that I am definitely going to get back into as it was so good, not only physically, but mentally as well).

There are SO many good things that came from me having a stroke, I have always said that more good than bad came from it, & I will always stand by that. Some people think it is a strange thing to say, but after I explain it to them it starts to make sense to them. When the stroke first happened, I never in a million years thought that I would think like that...something as life changing as a stroke either makes or breaks you & I was never going to let it break me, although in those initial first few weeks it VERY nearly did & maybe I wouldn’t be telling my story right now. But I don’t dwell on the past now, & I don’t get stressed about things beyond my control, it’s not healthy. Something like a stroke changes your perspective & your outlook, if it doesn’t then it must be a very painful place to be mentally, & I hope that if any stroke survivors do feel like that & you are reading my blog that it can be of some help or comfort to you. I would love for you to contact me.

The last 12 months have seen some of the biggest changes in a long time since the stroke...some of the biggest ever changes for me if truth be told. I was made redundant in July 2018, however, I wasn’t out of work for long & started back with the company I had worked for previously, which was quite strange to begin with, but after a few days it was like I’d never been away...I had worked there for over 10 years before, so it was just like going ‘home’ as there were still a lot of people there from when I was all those years ago. I don’t think I ever expected to be working there again if I am being honest, but it was something I couldn’t say no to with all of the history & memories that had gone before. It was nice that they thought enough of me to want me to come back, & something I will never forget.

Also, sometime within the last 12 months, I have found love...finally...I now have an amazing girlfriend!! But she is not just my girlfriend, she is my best friend, someone that I know I can talk to about anything, someone who has also been through some bad times but has came out the other side. Things between us are going really well, going from strength to strength, & I am always finding out or noticing new things about her that makes me realise just how lucky I am to have her. She also has a little boy from a previous relationship who is just amazing too & I absolutely adore, & I hope that I can have a positive influence on him as he grows up. I will always be there for both of them for anything they will ever need me for.

As positive & happy as this has been, I didn’t want to end this post without giving a mention to a girl who I had known through social media, a fellow stroke survivor who had given me so much advice, encouragement & inspiration, & someone who seemed to share my humour when we would tag each other in pictures & videos. It was a massive shock when, in October last year, her mam posted that she had unfortunately passed away. It did hit me quite hard at first as she was posting things days before & I suppose I didn’t want to believe it was true. So I just wanted to say that, Lizzie, you are & will always be missed by those who were fortunate enough to have had you in their lives for however short a time.

R.I.P. Elizabeth Ashmore. Gone but never forgotten.

Part 31 - Life After Stroke...

“Life is what happens while you’re busy planning it” – that is exactly the quote that would use to describe the last few months of my life. Again, it has been a little while since I last posted anything on my blog, not because there is nothing happening or nothing to say, it has just been a bit of a whirlwind recently, but I will explain all about that a bit later in this post. What I would like to write about first is something that I was lucky enough to be a part of a couple of weeks ago – the Life after Stroke Awards organised by the Stroke Association.

 As anyone who has followed my stroke journey, or kept up to date on here will know, I have been writing my blog since just after my stroke in January 2017. After my stroke I found it hard to find information about the “what happens next” part of stroke recovery, what you are “meant” to do after you have a stroke. I found this very frustrating, & at times it was quite an isolating & frightening feeling, but I was lucky enough to have people across social media reach out to me to offer me encouragement, advice & guidance, people from fellow stroke survivors to medical professionals.

 The Life after Stroke Awards celebrate stroke survivors, their carers, fundraisers, groups set up where stroke survivors & their families can meet one another....all different categories. And, this year, I was lucky enough to receive a nomination for my blog. I was nominated by a lovely lady called Sue who has followed my journey on social media since the very beginning, & whose father unfortunately suffered a stroke shortly before he passed away. Sue has been a great source of encouragement for me, always offering me words of advice, always sending me messages & email to see how I am, & I have appreciated this more than I think she will ever know & realise. Sue also found herself in a similar situation to myself after her dads stroke, as in she could not find any information about how he must have been feeling during & after his stroke. And this is where my blog has helped her to understand a bit better what he must have been thinking & feeling throughout what must have been such a frightening time for him, & I hope that by reading my blog she & other people have a better understanding of the thoughts, feelings & fears that someone having a stroke has.

 The Life after Stroke Awards was an incredible event to be a part of, & I am so glad that I attended (along with my girlfriend, Jodie. But more about her later...). When we arrived I was a little apprehensive about what to expect from the day, however, I knew that it would be very emotional to see other stroke survivors & hear their stories. The awards were held at Ramside Hall in Durham, a very swanky & impressive hotel & spa, & a setup befitting such an occasion...it is a celebratory event after all!

 Upon our arrival two lovely ladies signed us in from the list of expected guests, and then we walked into the reception area, which was awash with Stroke Association purple. There were representatives from the Stroke Association meeting & greeting & offering complimentary glasses of either prosecco & orange juice, or the bar was open for people who wanted something else (me being me I got a pint!). We stayed in the lobby area for a short time while everyone arrived, enjoying a drink & taking in the occasion, & there were also photographers there capturing the day. Once everyone had arrived we moved into the suite where the awards were taking place & shown to our tables, our table was number 13 & we were sat with some amazing people, there were OT’s, carers who had worked in the NHS for over 50 years, & a lovely lady called Rachel who works for the Stroke Association events team. It was a great table to be sat at.

 Once we had all been seated, we were served lunch before the awards ceremony itself begun, & I am not kidding, it was some of THE best food I have ever had – for the main course we had roast beef, Yorkshire pudding & vegetables, the a trio of desserts followed. The beef dinner was amazing, everything cooked absolutely perfectly. And anyone who knows me knows that I am not & have never been a dessert lover, however, after seeing them presented on the plate, I couldn’t say no! All three were delicious...& that coming from a self confessed dessert dodger! After the meal, & the tea & coffee had been served, the awards ceremony started...

 Before each one was handed out, by a stroke consultant from a local hospital, there was a brief speech about why the person receiving it had been nominated by the person who had nominated them. And, as anticipated, the majority of them were really emotional, & the words read out were personal, humbling & poignant. Every one of them made me tear up slightly. The nominees were all amazing people, ranging from a girl who was only 10 years old & the youngest attendee, to a lady who was 99 years old & still helping to raise funds for charity! All absolutely incredible & inspiring people.

 I was nominated by Sue in the Adult Courage (18-64) category for my blog, & as the certificates in this category started being handed out, I knew that my turn was coming. When it came to me, the lady from the Stroke Association who was hosting the ceremony read out why Sue had nominated me...as I sat there listening to Sues incredibly kind words, I had a lump in my throat & tears in my eyes. She spoke so passionately about nominating me, & even used quotes from the blog...it was so lovely & so touching to sit & listen to those words, it made me realise even more just how far I had come since those dark days in the very beginning.

 When Sues words of nomination were being read out I had to make my way up to the stage to collect my certificate. I shook the hand of the stroke consultant who handed it to me, he congratulated me & then I left the stage on the opposite side where the awaiting photographer was taking pictures of all of the nominees with their certificates. Standing there, holding my certificate, having my picture taken...I felt so proud, of both myself & all of the other nominees who had been a part of this great event. After the awards ceremony had finished & all of the certificates had been handed out, we were free to meet everyone else & have pictures taken etc, which was also really nice, however, we didn’t stay for too long afterwards but did have time to stop for a few photos in front of the backdrop & with a few props!

 The Life after Stroke Awards is a day that I will never forget, for so many reasons...my nomination & certificate, hearing Sues words being read out, the amazing food, the incredible, inspiring & humbling stories being told. But, for me, I will never forget the awards for all of those reasons, plus one more...being able to share it all with my amazing girlfriend, Jodie.

 As I said at the beginning of this post, life is what happens when you’re busy planning it....& that is exactly what has happened over the last 6 months. I have been made redundant, got a new job, & got a girlfriend (yes, there is someone out there mad enough to take me!), & I can honestly say, hand on heart, that I have never been happier in my life. Jodie is a nurse who works with people with learning disabilities in a local hospital. She is incredibly passionate about her job & I love to hear her talk about it. Jodie is an amazing person &, aside from being my girlfriend, she is also my best friend, partner in crime & a brilliant mother to her little boy. I don’t think she realises just how much I love her or just how much she means to me, I am incredibly lucky to have both her & her son in my life.

 As I found out with having a stroke at 33 years old in January 2017, you never know what’s around the corner...&, for the first time in a long time, I am SO looking forward to seeing just what is around the corner this year!

Part 30 - Life goes on...

It has been nearly six months since my last blog post. It’s not that I haven’t wanted to write something, or haven’t had anything to say, I suppose it’s because the last post was about such a big milestone for me...the one year anniversary of having my stroke. Those twelve months included some of the worst, but also some of the best days of my life, & it would be an understatement to say that I had packed a lot into that time. 

But, as the title of this post suggests, life goes on. And as I write this, I have now been back at work full time as long as I was off for, which is something that I am incredibly proud of as there were times last year when I was off work after the stroke that I wondered if I would ever be able to go back, if I would still be able to do the job I’d done for so long before, would my body & mind be able to cope with the stresses of everyday working life. There was only one way to find out & that was to throw myself back into it & give it a try. Thankfully it was a decision I didn’t come to regret. I felt ready to go back & try & pick up where I’d left off, ready to be a part of that team again, & ready to feel useful again.

However, a few weeks ago, our office was told that it would be closing, meaning potential redundancy. It didn’t come as a massive shock to anyone as we had been expecting it for a while, but it still wasn’t a nice feeling to be told that you could potentially be losing your job. But I am trying to be positive about it, as yet we still haven’t received an official offer to stay with the company, but we kind of know what it will mean when we do – more travelling throughout the week to work in the head offices, more overnight stays away, which at this moment in time is not appealing to me. 

I am trying to see the possible redundancy as the chance for a new start. It’s another one of those ‘life goes on’ moments because, whether we remain or not, working life there will still go on without us. Don’t get me wrong, it would be sad to have to say goodbye to the job I’ve had for nearly 8 years, & people I have worked with for much of that time, but at the same time it gives me a chance to do something else, maybe something completely different, who knows. As I say, at the present time I have not had an offer either way so all I can do for the time being is carry on doing what I do until the time comes when I need to make that decision, but one thing is for certain, it is not one I will be making lightly. 

Also, since going back to work, I am still trying to get to the gym as often as possible, usually 2-3 times a week. I have spoken in previous posts about how going to the gym last year while I was off was one of the highlights for me. Even though I don’t always manage to get there as often as I’d like, I still love going &, when I’m there, even if I’ve had a bad day, I always feel better. Exercising & being active in general is not just great for your physical well being, it is also fantastic for your mental health too. Obviously the main benefits are physical, but those physical benefits are also great for your mind...achieving your goals, noticing changes, feeling like you’ve done something. No matter how hard it is sometimes or how tired I’m feeling, I always feel 100% better after I’ve been to the gym, it’s a great stress reliever & you always have so much more energy in the days afterwards. If you are a stroke survivor reading this & haven’t thought about using a gym, I couldn’t recommend it highly enough. Speak to your GP about a gym referral, it was one of the best things I did after I had my stroke. 

I am also still trying to get out walking when I can, although working Monday to Friday it is hard, & then the weekends are spent doing things you can’t do through the week. I do manage to get out & walk over my mam’s most Sundays, I still enjoy that walk, it is just over 6 miles in total so not only is it great to keep me active, it also gets me outdoors for a couple of hours at least. And now we are starting to get some nice weather, it will be something I can look forward to a bit more. 

On the route I take from my house, I always walk past the house that I grew up in & lived in for over 25 years. It always feels a bit surreal after spending so much time there over the years...if only those walls could talk, there would be plenty of stories they could tell! It’s where some of my best memories are from, but walking past that house is another one of those ‘life goes on’ moments. I moved out just over three years ago now, & after my parents separated they also moved out shortly after. There is another family living in that house now, no doubt making their own memories & stories they will also be able to tell. But walking past that house I spent most of my life, knowing other people are in those same rooms that I had been in so often, it is just another reminder that life goes on, with or without us.

Part 29 - One year on...

Don’t look back, you’re not going that way...

As I sit writing this post, it is exactly one year to the day since I had my stroke. The past 12 months have flown by, at times in a bit of a blur. Some days it feels like it happened only recently, but on a few occasions it has felt like so long ago. I have recently read back through all of my previous posts in anticipation of having to write this one, & at times it felt like I was reading about someone else because I have come so far over the course of the last year. It felt like I was reading about another person, another lifetime ago.

Even though so much time has now passed since my stroke, I still remember that night as though it were yesterday. I still remember going upstairs to get my phone from my bedroom where it had been charging, I still remember how my left side gave way on me coming downstairs, I still remember it happening again as I sat on the settee, not fully recovered from the first time. I still remember the blind panic I was in at the time when I rang 999. I still remember when the first-responder arrived & was originally not going to take me to the hospital, I still remember him calling the stroke ward at the hospital & them telling him have me brought in straight away. I still remember the ambulance coming & taking me to the hospital, I still remember the concerned looks the two paramedics were giving each other as we made our way. I still remember arriving at the hospital & seeing the nurse & doctor who initially checked me over, I still remember being taken for a CT scan, I still remember being taken up to the ward & being hooked up to the telemetry machine. I still remember speaking to the consultant on the iPad who explained what would be happening, I still remember being thrombolysed & not yet understanding how serious things were, I still remember having to have my obs taken every 15 minutes through that first night. And I still remember trying to phone my mam to tell her where I was & what was happening but not being able to get through, so ringing my dad who left work & came to the hospital. I still remember it all, it is all so vivid &, even after a year passing; it is still so fresh in my memory. As it was something so life changing, I won’t ever forget that night for as long as I live, & I don’t want to. I want to remember as it is something that happened & changed the direction I was going. I’ve often said that I will never let the stroke define me, but in a funny sort of way it HAS changed who I am &, I think, for the better. More good has come from me having a stroke than bad, I really believe that. If it hadn’t happened when it did, maybe something else would have, something worse later on. But I don’t spend any time thinking about that as it is a question that I will never be able to get an answer to. It is a waste of energy to try & look for answers you will never get, or into things you can’t change.

There have been times, especially in the beginning, when I found it incredibly hard to talk about & open up about the stroke & what had happened to me. At first I didn’t want to believe it so I tried to block it out, try to not think about it, but it was such a massive thing that it was impossible to ignore. For the first six weeks or so after the stroke, looking back now, I was a mess & in a very bad place, & had I had carried on as I was at that time, things could have been very different for me, but thankfully I did come out of the other side.

I have found a lot of great people on social media, medical professionals, fellow stroke survivors, people who have been affected by stroke or brain injury in one way or another, & all of them, some who may be reading this now, have helped, advised, guided, encouraged & inspired me & helped with my recovery more than they will ever know.

I know firsthand how frightening, anxious, isolating & lonely it can be after a stroke, & that’s one of the reasons I started this blog – to try & help other people, to let them know that they’re not alone, that this does happen, strokes happen to young people aswell. I had my stroke when I was 33 years old, but since it happened I have spoken to & met other stroke survivors much younger then I was. There is still a lot needs doing in recognising stroke symptoms, especially in the young, it is a learning process, but I do think that steps are being made in the right direction. However, one thing I would like to see is more stroke survivors’ experience & knowledge being used to aid this, after all, who better is there to help than those of us who have been there.

Over the last 12 months I have also come to realise how strong a person I am when I need to be, how much fight & determination there is in me when I need it. Something like a stroke happening makes you ask yourself a lot of questions that, otherwise, you might not have. During those first six weeks after it happened, I was more or less giving in. Then something in me said “hang on a minute, this is a chance to put a lot of things right, don’t waste it”, so that was the moment things changed for me for the better. I started using the gym, I started walking, I started eating more healthily, drinking less alcohol...just generally looking after myself in a way that I don’t think I ever had before. I set myself weight loss targets, all of which I reached & exceeded. I joined the gym properly as a member for the first time in over 8 years. For the first time in a very long time I was proud of myself, & I had made people proud of me & that’s what kept me going during some pretty bad days. I didn’t want to let myself down, or those around me who had supported me when I had needed them the most...it was a great feeling.

Returning to work was also a huge deal for me. After being of for just over 8 months, on 25th September 2017 I started back at work again full time. I had started by doing bits from home, then gradually getting back into the office over a period of time, but starting back full time was massive. It is something that, at one time, I probably thought I would never be able to do, but that’s where that fight, that determination kicks in. You want to prove people wrong, anyone who says you can’t do something, you want to show them that you can. I’m as stubborn as they come & I wasn’t going to give in without knowing I had thrown absolutely everything at making it happen.

The one year anniversary of my stroke is the first big milestone for me & it has had me thinking. I still don’t know exactly how, but I want to make a difference, I want to help others who have been unfortunate enough to have also suffered a stroke. Don’t get me wrong, I do enjoy the job I do & love working with the people I do, but it’s exactly that, it’s just a job...it doesn’t matter. I want to help make a positive difference, I want to be able to help others & do that for a living. I don’t exactly know how I will make it happen, or what I even want to do yet, but I am going to make 2018 the year I finally find my place in the world.

And, on the first anniversary of my stroke, to everyone who has been there with me along the way, the doctors, nurses, fellow stroke survivors, people who I have connected with on social media, family & friends....THANK YOU. I honestly wouldn’t be where I am now without the help, support & encouragement I have been lucky enough to have received.

That’s the first year post-stroke over with....here’s to many more to come!

Part 28 - The end of the beginning...

“As one door closes, another one opens” – this how I am treating New Years Eve this year, the door of 2017 closing & the door of 2018 opening.

2017, as many of you will already know, has not been a great year for me personally. It has been by far the toughest & most challenging year I have ever had, starting on 21st January when I suffered my stroke (caused by a right internal carotid artery dissection). Having a stroke brought with it many challenges & obstacles, but it also made me realise just what I could do when faced with something changing as this. Along the way this year there have been some of the lowest lows, & in turn some of the highest highs, I see this year as being my year of growth. It has made me see just how determined I can be when I need to, how much willpower I have, how single-minded I can be when I set myself goals & targets. As strange as it sounds, I think that the stroke has made me a better person. Maybe that person was always there, but maybe it has taken something like this happening to re-evaluate the person I was & the person I could be. One thing having a stroke gives you is time – time to do that re-evaluating & time to work on yourself. I think I am a far stronger person now, both physically & mentally, than I have ever been. And, again, this might sound strange, but I have the stroke to thank for forcing me to make the changes I have made throughout this year.

I am not one for making resolutions for the New Year, too many times in the past they have been broken. Instead, this year, I am going to list some of the things that I am going to try & do or do more of in 2018, some of the things I think more of us should try & do.

Spend more time with friends & family:- An obvious thing to say, but how many times over the course of the last year have you wished you had visited or called that friend or relative? How many times have you cancelled plans you had with someone? I am the same, I have done those things aswell. But I am going to make a conscious effort to spend more of my time with the people who matter to me the most.

Spend less time looking at a phone screen:- Something which I think we are all increasingly guiltier of. How many times have you been in the same room with other people & everyone is playing on their phones!? Again, I am guilty of it myself, but it was a comment from one of my nieces that has made me realise just how often it happens & you don’t even see it. If you’re with other people, don’t reach for your phone...talk to them. There are a million subjects you could choose from, & you never know, you might just learn more from that one conversation than you will ever realise.

Get outside more often:- Don’t get me wrong, because of being off work for so long this year due to the stroke, I have spent more time outside than in many years previously. I spent time walking, which is not only good exercise & great for your physical health, it is also great for your mental health too. Spending time outdoors, especially in the good weather, is a great way to escape. It gets you away from the monotony that everyday life can bring. It gives you time & space to think, in surroundings that you have maybe not been in for a while. For me, it gave me the chance to rediscover parts of the town I live in again, places I hadn’t been to for so long. I am definitely going to try & spend more time outdoors next year, even if it is just in the garden.

Don’t leave anything unsaid:- But at the same time, know when to bite your tongue! There have been so many times when I’ve thought “I wish I’d said this” or “I wish I’d said that”. If there is something you need to say, say it. If you miss somebody, tell them. If you’re sorry for something, say it. If you love someone, tell them. Don’t wake up one day & regret something you didn’t say. People think that they have all the time in the world but couldn’t be more wrong. Having a stroke this year has made me really see how fragile life can be & how vulnerable we all are, whether we see it or not.

Appreciate people & things more:- I think one thing we are all guilty of sometimes is not really appreciating something someone has done for us. When it happens to you it is maddening, so to learn to appreciate the people who take time out of their day to do something nice or helpful for you would be a great thing. We also need to learn to appreciate what we have, & what & who we have around us. We all lead such busy & often hectic lives that maybe we don’t stop to look around & appreciate the people & things we have.

Look after physical & mental wellbeing:- As some of you will know, I started back at the gym again at the start of this year as part of the rehab after my stroke, & it was the best thing I have done for a long, long time. Not only did I lose 3st in weight, I also felt better than I ever had, probably in my whole life. I loved going to the gym, I loved seeing & feeling my body changing for the better, & I loved the social aspect of going aswell. Some of the people I would see there every day are now friends, which was one of the bonuses I was not expecting to get from joining the gym. Since I returned to work I have not managed to keep up going to the gym as often as I would like, but in the New Year I am going to try harder to find a better work/life balance, I am not willing to compromise on my health. As well as getting myself into a better place physically, I also done the same mentally. After the stroke I suffered massively with panic attacks & anxiety attacks – I didn’t know what it was to begin with & it scared me, but after getting it diagnosed by a GP, I was able to deal with it & move forward. I am still prescribed an SSRI, which I hope won’t be for the long term, & I have had a course of CBT at the hospital with a psychologist, which was really helpful. I now know the signs & symptoms when my mental health starts to suffer, & I know when I need that help. Never be scared or embarrassed to seek help for a mental health issue, we all need help sometimes & it takes a brave person to admit it & ask for it.

Don’t just exist, LIVE:- Life is what happens when you’re busy making plans is one of the truest things to ever be said. Too often we get stuck in a rut that we are too scared to change things up or break from our routine, however much we want to. There is a quote from one of my favourite films, Ferris Buellers Day Off that I think really sums up what I am trying to say – “Life moves pretty fast, if you don’t stop to look around once in a while, you could miss it”. You’re alive, so don’t forget to live!

And with that, this brings to an end my final blog post of 2017, & as the title suggests, there is more to come from me next year – it’s not the beginning of the end, it is the end of the beginning...a new chapter is waiting to be written.

To all of the people who have taken the time to read & share my blog over the course of this year, & to all of the people who have supported, advised, encouraged & inspired me during my toughest times this year, I want to say, from the bottom of my heart, thank you. Without you I wouldn’t have been able to get through this year & wouldn’t be where I am now.

I hope that in 2018 all of your dreams come true.

Part 27 - National Heroes Service...

No society can legitimately call itself civilized if a sick person is denied medical aid because of lack of means” – Aneurin Bevan.

To say that I owe my life to the NHS would be an understatement. In January of this year, when I had my stroke, I found out first hand exactly why our health service has always been the envy of the world. There is now an unprecedented demand & strain on our health service, so I wanted to write something positive about my recent experiences.

I had been in hospital before, for the usual kind of things – from scrapes & bumps, to having my tonsils out when I was young, to a nasty ankle ligament injury. I had also been there when relatives had been in hospital (which I will come to). But this time in January was different, I had suffered a life threatening illness &, for the first time, it was me lying in that hospital bed scared about what might happen. But it was also the first time that I would see just how hard working & dedicated every single person who works in the NHS is, from the domestics to the HCA’s, & the doctors & nurses to the consultants & porters, every one of them plays their part. I am not saying that the NHS is without its faults, we all know there are shortcomings & improvement needed in certain areas, but you will not find a more dedicated team of people.

This particular journey for me started on the night of 21st January this year when I was unfortunate enough to suffer a stroke. The first in a long line of people I would encounter were the paramedics (technically it was the lovely lady who answered my call to 999 that night, but the paramedics were the first I would see). The first responder who originally came out was not going to take me to the hospital, it was only when he spoke to a nurse on the stroke ward that an ambulance was sent – & this is one of the shortcomings I mention, & there is more needs doing with regards to educating people. It could have been a very different story for me that night, but thankfully it wasn’t. I don’t dwell on what could have been; hopefully my experience will have made that first responder more aware of what could be happening.

The two ladies who arrived in the ambulance were great, they done everything they could to put me at ease. Even though they knew it was serious, they never let on to me about their concern. I know it is what they have trained for, but sometimes training counts for nothing when faced with certain situations, sometimes it is hard not to panic, but they were always calm. On the journey to the hospital they talked to me all the way there, about things that would try to take my mind off what was happening, constantly keeping me calm & at ease.

When we got to the hospital we were met by a doctor & the nurse who answered the phone call from the first responder. I had never had to be taken into hospital by ambulance before so when we got there I was feeling panicked, but the doctor & nurse took me into a cubicle in the corridor & asked me some questions about what had happened. They explained to me what was going to happen next, they knew I was a little bit distressed & they explained everything to me very calmly & in a way that I understood. Sometimes you get doctors talking to you using all kinds of medical jargon & things you don’t really understand, but this was not the case, I was never in any doubt that I was in good hands & in the best possible place.

When I was taken for a CT scan, the radiographer spoke to me, she introduced herself giving me her name (which I have now forgotten!). When I had a second CT scan a few days later, she was the radiographer then too & she remembered my name. That might not sound like a big deal, but if you think how many patients they see each day, to remember your name makes you feel somehow more comfortable, like you’re not just another person. Little things like that go a long way, especially in hospital where you can so often & so easily feel very alone.

When I was taken up to the ward, everyone there was very friendly. As I was being thrombolysed, it is standard practice to have your obs taken every 30 minutes (temperature, blood pressure & pulse rate). I was taken into hospital after midnight & didn’t get to the ward until after 1am, so aswell as being panicked & distressed, I was also very tired. The HCA’s took it in turns through the night to take my obs, & every time they did they would apologise for having to do it...they were actually saying sorry! I would always tell them to stop apologising, that they were only doing their job, but they would still do it every time. They would always ask me how I was feeling, if there was anything they could get for me, again it might not sound much, but little things like that do matter. And when I couldn’t get through to my mam on the phone to let her know what had happened, the nurse who had answered to phone call earlier, & had met us at the hospital, stayed with me until I was finally able to get through to my dad. In fact, she rarely left my room that whole first night; she was always there, talking to me, asking if there was anything I needed. I have said in a previous post that she was like my guardian angel that night, may be if it hadn’t been her who answered the phone that night, if she had been on her break or was busy doing something else, things could have been different. I will be forever grateful that it was her.

The consultant came to see me the following morning; he was always smiling & always had time for people. Sometimes you encounter doctors who just want to get their ward rounds over with, but my consultant was the complete opposite. On his first visit he sat at the bottom of my bed & spoke to me about what would be happening. He asked me if I knew what had happened & how much I knew about strokes. When I told him I didn’t know too much he took the time to explain it a bit more to me so I understood more about what had happened, he didn’t have to do that but it was a massive help for me. And he always had time if I had any questions for him, he always took the time to give the best answer he could, always doing his best to explain things in a way I would understand, & I always appreciated that. It made things a bit less scary.

Porters & domestics are very much underappreciated I think, but they do such a vital job. Without the porters, patients would not be able to get to & from the other departments they need to be at, from scans & X-ray’s, to physiotherapy & other routine appointments. They also have incredible knowledge of the hospital & know where everything is. It always amazed me just how much they knew about the place, & they always have a story to tell! The domestics are more than ‘just cleaners’, yes they keep the wards clean, but they are also a great help to patients & the people visiting them. Countless times I seen them asking if there was anything they could get for patients, just to help out if staff were already stretched. Little gestures like getting tea or coffee for visitors, meaning they didn’t have to leave the person they were visiting, they might not think things like that matter, but it does more than they think. Hospitals can be a frightening & lonely place, but they are made that little bit better by having those people there. And it wasn’t just when it was me in hospital, over the last few years I have also seen the dedication & compassion from NHS staff from the other side, as the visitor when relatives have been in.

In 2014 my nana was taken into hospital. She was in for just over a week, & we knew that she wouldn’t make it out. But the doctors, nurses & everyone on her ward treated her with nothing but dignity & compassion. We knew she was going to die in hospital, which was devastating for us, but all the time she was in people couldn’t do enough for her. They made her last days as comfortable as they could possibly have been. And I will always be grateful to them all for that.

Last December, almost exactly a year ago, my youngest niece was taken into hospital. She was only 4 years old at the time & had been taken in with failing kidneys & pneumonia, it was a very rough time for us & we nearly lost her, but thanks to every doctor, nurse & everyone else in the Freeman & RVI in Newcastle, they never stopped fighting for her, they never gave up &, after three weeks in hospital, she was well enough to come home. Just in time for Christmas too! They were & are nothing short of miracle workers.

The NHS has always been there for every one of us, & now it needs us to be there for it. The NHS is an institution worth fighting for, because let’s face it; the alternative doesn’t bear thinking about.

Remember, not all heroes wear capes....most of them wear an NHS uniform!

The NHS will last as long as there are folk left with faith to fight for it” – Aneurin Bevan.

Part 26 - No longer 'Out of Office'...

Over the last 9 months, since having my stroke, I have managed to tick off pretty much everything I set out to do on the road to recovery. The last thing on my list was returning to work, something that, six weeks ago, I did. I had been doing bits from home before that, & was then working every Friday morning in the office, but six weeks ago I managed to return to work full time, something back in January I probably didn’t think possible.

During one of my CBT sessions I was asked what having a stroke felt like, & the only thing I could liken it to was imagining your life being made up of building blocks, like the ones kids play with, & the stroke came along & knocked them all over, so the recovery was like putting your life back together block-by-block. It might not be the best comparison, but it is one that you can easily imagine. I know that I will never get back to being EXACTLY how I was before my stroke, but that’s ok. It is something that I have accepted & come to terms with, it wasn’t always easy, but over time your mindset changes. As soon as you accept something, it allows you to move on with your life & recovery. And just because you accept something, it doesn’t mean that you are giving in. It just means that you are now prepared to move forward.

The first time I went back to the office where I work was in June, just over 5 months after my stroke. I had kept in contact with some of the guys from work, but I had not been back there since it happened. I don’t suppose I had meant to have stayed away for that length of time, but when you’re recovering from something as life changing as a stroke, you have to prioritise things &, at that time, thinking about work was not top of my list. Don’t get me wrong I did miss it & the people I work with, but I had to focus on my recovery. The company I work for were great with me while I was off, never putting pressure on to come back too soon. And like I said, I kept in contact with some of the lads in the office so I knew what had been happening while I wasn’t able to be there. That really helped me later on when I did finally go back, if I’d had little or no contact with anyone all that time I was off, it would have been more daunting to go back.

That day I went back for the first time, there was a mix of looking forward to seeing people again, but also apprehension. I don’t know why, but I felt being off for so long, it would be like I didn’t belong there anymore...like everything would have moved on without me. Thankfully that wasn’t the case & there was no need to have felt apprehensive about going back. When I got there I pulled up at the gates around the back of the building & rang someone to let me in. As I was pulling into the car park one of the directors was just leaving but he turned round & came back, which I thought was nice. He didn’t have to but wanted to catch up. When I got out of the car the first thing he commented on was my weight loss & that I looked a lot better now than I used to, a lot healthier. Looking back, I probably didn’t look great, I will have been three stone heavier & I wasn’t really looking after myself. You just don’t realise it at the time, & it shouldn’t take something like a stroke to shock you into making the changes you need to.

When we went inside we sat in the reception area for a while just chatting & catching up, I was with one of the directors & one of the lads from the office. It felt strange to be back, I know it wasn’t like I’d not been there for years, but when you have spent more or less every day there for the past few years, 5 months away from the place seems like a lot longer. The place never changes, & that was good, something normal. After being off for so long & going through everything I had, normality is what you crave more than anything, familiar things. While sat in reception, a few of the girls from one of the other offices in the building came back in from going out for their lunch & nearly walked straight past me as they said they hadn’t recognised me...it was funny, but it also meant that all the hard work I’d put in & the changes I’d made must have been working if people I’d usually see every day hardly recognised me.

After sitting downstairs for a while we headed up to the office I work in, the first time for over 5 months that I’d have been there. When I got up the stairs & through the door it was nice to see most of the people I work with again, some of them weren’t there that day I called in, but most were. It was nice to catch up with people, hearing what had been going on, the stories of what I’d missed while I had been off. I’d missed the office banter & being part of the team while I had been off, sometimes you whinge & moan about work (don’t worry, everyone does it), but when something like this happens, it does make you realise that spending so much time with people every week at work, they do become kind of like an extended family in a way...you see them more than you probably do some relatives!

I had been to the gym on that morning, so I had been home for a shower before I went to the office & hadn’t had time to eat anything so I called for a sandwich on my way over. As I was sat eating I looked around the office, just taking in being there again. It somehow looked different, but at the same time exactly the same. I know that doesn’t make sense, but then not much this year really has. The office seemed bigger that first day I went back, even though I knew it couldn’t be; maybe it was because there weren’t as many people in that day, who knows. I stayed for a few hours, just talking & catching up with people. It was nice to see people & talk to them face to face rather than messages or the odd phone call, like I said; it was nice to be doing something ‘normal’ again. I’m glad I went to the office that day; it was something that I had felt ready to do. I wasn’t yet able to return to work, but I had always planned to visit. I called into the office a few more times while I was off, I wanted to familiarise myself with things again before eventually returning to work. It felt like that was a good way to start.

I had set a date of the end of August to start my phasing back into work, it was a date I had chosen & it gave me something to work towards. I like routine & familiarity, so giving myself a timescale to work to was great. I had spoken to one of the guys at work about it previously & it was decided that, to start with, I would help out doing some work from home every now & then just to reintroduce me gradually, & I was given a work laptop so that I could connect to the network we’re on. I didn’t do much too often to start with as I wasn’t able to look at the screen for long periods of time, I think mostly due to the fact that I hadn’t really looked at a computer screen much for almost 7 months at that time. And also because I didn’t really know what I’d be doing, while I was off there had been quite a few changes & I didn’t know what things I would be doing. I helped out on a Monday morning, as that is when we run & distribute all of the reports for the previous week’s trade. There were quite a few that we had done between us, but the ones I had done prior to me being off, they had been shared out. Now I was starting to phase back into work, I was able to help out & take them back again. Over time I started to do a bit more for a few hours on some days, I wanted to do more & take more back on, but at the same time I knew I had to make it a gradual process & not expect too much of myself too soon. It wouldn’t have been good for either myself, or the people I work with if I had tried to take on too much only to find I was struggling & wasn’t able to do it all. Another thing that the stroke has taught me is to be patient, not to rush into things anymore.

After a few weeks of only doing bits at home, I decided that I wanted to work in the office again, even if for just one morning a week to begin with. I wanted to get used to being back in the office environment again after spending so much time away, I knew that it would probably make the transition easier when I did finally return full time. Again, it felt strange when I first started doing it, the first time I had to set an alarm for work again since the January, driving that same route as I always had again & occasionally getting stuck in the morning traffic again...some things never change! It did get easier, & knowing I was only there until 1 o’clock, it broke the day up for me, but it also gave me something to look forward to every week. As I said, we all moan about work sometimes, but it’s only when you can’t do something that you realise you do actually miss it. I am very lucky that I have been able to return to work & I am grateful for that every day, a lot of other stroke survivors aren’t so lucky.

After working in the office on a Friday morning for a few weeks, I decided to take the plunge & go back to work full time. To those around me it probably looked like a rushed decision, & it did happen sooner than I had probably planned it, but I felt ready both mentally & physically, & that is the best guide I can go by. I probably could have left it a few more weeks before going back, but the timing felt right, it was something I felt happy enough to do...after all, how would I know I was able to do something if I didn’t actually do it?

I have just completed my sixth week back at work full time since my stroke. It hasn’t been what I would call easy, going back, but as soon as I knew I would be able to, it was something I always wanted to do & had always planned to do. I have struggled with fatigue on & off since the stroke, & going back to work & having to be up early every day, it has impacted on me a bit. It has got better over time, & being back at work is still only relatively new, but there are days when I am very tired. I am still going to the gym, not as often as I was when I was off work, but I always aim to try & get there three nights a week where possible, it helps to manage the fatigue & I always feel better when I’ve been.

So that’s it, all my post-stroke boxes ticked, & the building blocks of my life have slowly been put back again. There have been changes already made & no doubt changes still to come, but that’s the good thing about life, it’s always changing, it never stands still & it takes you with it. My stroke has definitely made me realise that life it too short & you have to grab it with both hands & do everything you can to be happy. It’s your life...live it your way.

Part 25 - C.B.T: Can't Beat Talking...

Anyone who follows me on social media will know that, since my stroke in January, I have struggled with really bad anxiety & have often suffered from panic attacks. I think I had always been quite an anxious person pre-stroke, but had always been able to contain & manage it. However, suffering from something as life changing as a stroke really knocks your confidence & makes you start to question & over-think everything, which only feeds the anxiety. It turns into a vicious cycle that, without the right help, only continues to get worse. For a while after my stroke I struggled on, not wanting to admit that I needed help & that I could manage it on my own, but it got to a point where it was starting to affect my everyday life & I knew then that I needed to ask for help.

There had been numerous episodes over a 6-8 week period where I would really struggle with my anxiety, more often than not when I was out on my own, it would hit without any warning & would really throw me. Each time, it never lasted for long, but would it would happen more & more. The day I rang the doctors & spoke to a GP, I explained to her that I’d had a stroke less than two months prior, explained all of my symptoms to her, telling her that it was the physical symptoms that were the worst, & she was able to diagnose what she thought was an anxiety & panic disorder. She asked if I would like to try medication & I agreed as I just wanted something that would help me. She prescribed me Sertraline 50mg & told me that it would take a few weeks to really start working & I needed to give it a little time. After a while it did thankfully kick in & it really helped, but I always said from when I first started taking the medication that I didn’t want to be on it long-term. I didn’t want to always have to rely on tablets to help me to feel ‘normal’. And that’s when it was suggested that a talking therapy might be beneficial, & that I should speak to my CST to see if I could arrange it.

I rang the stroke team & asked them if I was able to speak to a psychologist & they explained that there would be a bit of a wait as they don’t have one who works directly in their team, it would be one at the hospital. They said that they would sort out a referral for an appointment to see a clinical psychologist with a view to having a course of CBT (Cognitive Behavioural Therapy) should we both agree that it was the best course of action. I said that this was all fine & would wait for a letter when an appointment had become available. It did take a bit of time to be processed, but my letter did eventually arrive – my first appointment was on Tuesday 8th August.

Having therapy was never something that I thought I would need so had never really given it much thought, but I decided that I would go into it with a completely open mind. I think that’s the only way you can approach something like this. If you don’t, you won’t get the best out of it if you go into it with any preconceptions. Yes, therapy may not be for everyone, but until you have tried it you won’t know.

On the day of the appointment I made my way to the hospital with plenty of time to spare, I always did this if I didn’t know where I was going. However, when I asked the receptionist to point me in the right direction she said that it was in the Rehabilitation Day Unit....where I’d had my six week review appointment with Dr Anwar months earlier. So I got there far too early, just my luck. When I got to the reception desk there I said that I had an appointment booked with Dr McGarrick in Psychology, & she confirmed my appointment on the system & took me through to the waiting area. It was the same waiting area that I’d sat in six weeks after my stroke, waiting to see Dr Anwar. It felt strange to be back there again. As I was there so early I was sat there for a while, watching patients & doctors come & go, wondering if some of them had maybe also suffered strokes as I had & they were having their own review appointments with one of the stroke consultants. When it was time for my appointment, Dr McGarrick came out to call me into her room. This was it; let’s see what this CBT is all about then...

When I got to her room she asked me to take a seat & asked me if I knew what CBT was. I said that I didn’t really know too much about it, but had been told that it was a talking therapy that could help me to manage my anxiety symptoms. She explained a little bit about what it is & how it may be able to help me, it did sound interesting & I felt ready to give it a go. Before we started Dr McGarrick asked me to fill out an anxiety/depression questionnaire, I think it was the same one the nurse from my stroke team had asked me to fill out when I was first discharged from the hospital. It was to help her get more of an idea where the issue was & how she could best use my CBT appointments to help me. After I had filled it out I handed it back & she quickly went through & scored it – I scored low on the depression questions but much higher on the anxiety, which I would have expected.

After that she continued to ask me questions about my stroke, how it had made me feel, what the anxiety felt like. Even though over six months had passed since my stroke, it still felt quite raw & wasn’t easy to talk about it in detail, but I explained to her that having a stroke felt like my life was made of building blocks that had all just been knocked down & I was now trying, block by block, to put the different parts of my life back together. I told her about everything I had managed to achieve since the stroke, the weight loss, driving again. I told her that controlling my anxiety & panic attacks was one thing that I had continuously struggled with & that I didn’t want my medication to be a long term solution for it. As the first appointment was coming to an end, Dr McGarrick said that she thought me having a few more CBT appointments would be beneficial & I agreed. I think being able to talk to someone impartial & non-judgemental was a great thing for me, it allowed me to open up & talk about things more freely. It was exactly what I needed. At the end of the appointment she booked me in for another three appointments over the next three weeks & said I would get a letter confirming them. I left that first appointment feeling quite positive, like this could actually really help me to keep my anxiety at bay. I was looking forward to going back.

The next week I went back, same place – Rehab Day Unit. As I sat in the waiting area, I was people-watching again, wondering what had brought them all there. I am quite a curious person & had always wondered every time I was there.

Dr McGarrick called me into her room, a different room this time, for my first proper CBT appointment. She asked me some questions again, how I had been feeling over the previous week since last seeing her, had there been any episodes of anxiety/panic attacks. I said that I’d had a good week & explained that there had been no more panic attacks but there had been a few times I felt like the anxiety was there but it never really developed into anything. She said that this week she wanted to focus on some breathing techniques that may be helpful for me to use in those situations. She asked me to get comfortable in the chair & close my eyes. When you close your eyes it really heightens your other senses, & when she started talking it sounded somehow louder, even though it wasn’t & she was talking to me in a calm, relaxing way. As she was talking to me she would regularly ask me to take deep breaths in through my nose & out through my mouth. She said that any sounds I could hear, to take them in & acknowledge them, but continue to focus on my breathing. After a little while of this she asked me to open my eyes when I was ready. It took a few seconds for me to open my eyes again, & when I did I felt more calm than I had for a long time...I think I was that relaxed I could have fallen asleep! Dr McGarrick asked me some more questions & we talked for a while until the end of the appointment. We talked about how my life had been since the stroke & I explained that, initially, it was very hard for me to deal with, very hard to try & process what had happened to me. I told her that those first six weeks were some of the darkest days of my life & I really struggled. It wasn’t until my six week review with Dr Anwar that changed everything for me; it gave me a new perspective. I had been given a second chance that a lot of stroke survivors don’t get & I was going to grab it with both hands & do everything I could to make sure that this didn’t happen to me again. Dr McGarrick said that she thought it was a really positive way to look at things & I remember saying that it could have gone completely the other way for me at one time; in the beginning I just became uninterested & didn’t want to do anything. I knew after my review appointment things had to change. And they did. This brought the appointment to an end, but before I left to go back home Dr McGarrick suggested I download the Headspace app to my phone, which I did. She told me a bit about it & said that there were relaxation techniques I could work on at home.

Over the next couple of weeks we would focus more on using breathing & relaxation techniques to help me, & we also talked a lot. I talked to her about joining the gym & my weight loss, how I believed that the gym had saved me at a time when I needed it the most. I likened it to it somehow becoming my sanctuary, where I could go to escape &, for a couple of hours a day, not be the lad who had a stroke. Some people at the gym knew about my stroke, but it was rarely spoke about. It wasn’t that I minded when it was, it was just not something that people spoke to me about. I explained to her that I had changed what I was eating & drinking, was now more active than I had been for a very long time, & had lost 3st. She told me that doing all of this was also a really positive thing. At the time, when you’re doing it, you don’t really think about it, you just get on with it. But talking to Dr McGarrick made me think about things a bit more, & look at everything that I had achieved post-stroke. I did feel a sense of pride that I had made so many positive changes.

At my last appointment, one of the things we spoke about quite a bit was me returning to work. I had mentioned it to her the week previously that I was starting to do some work from home & would be doing a Friday morning in the office shortly. She asked me a question that I hadn’t really thought about – do you think people will treat you differently when you go back? It really made me think. I said that I hoped not & I didn’t think they would, that when I did eventually go back I knew that for a while I would be known as the person who’d had a stroke, but over time that would hopefully change. I explained to her the office dynamic & that I had kept in contact with a few of the lads in the office I was closest to, so I didn’t think they would treat me any differently. I hoped they wouldn’t anyway. I told her that I just wanted to get back to as normal a life as I had been used to before the stroke, & if people were treating me differently then it would change that.

Near to the end of my final appointment, Dr McGarrick spoke to me about the last few weeks & asked me how I thought it had gone. I told her that I had found it really useful & would definitely try to use the techniques she had taught me if I ever needed them. She asked me to fill out another questionnaire which she went through & scored again – depression scored low, & this time the anxiety had scored lower aswell so she was really pleased. Before I left for the last time, she told me that she thought I was very positive & that it had been a pleasure to have seen me & been able to help me. I told her that, even though I didn’t know what to expect from having CBT, I had been able to take a lot from it & would definitely recommend it to anyone who needs it. Being able to talk to someone so openly & freely was a great feeling. As I had told her that I didn’t want medication to be a long term solution for my anxiety, Dr McGarrick said that she would not close my file should I feel I need to make further appointments when the day comes & I start to come off the medication, which I really appreciated. I am in a much better place, both physically & mentally, than I was when I started on the medication, so hopefully I won’t need to make any more appointments for CBT, but it is great knowing that the option is there for me if I need it.

Part 24 - Reflections of a stroke survivor...

I haven’t uploaded any new posts to my blog for a while, two months in fact. Since starting my blog, this is the longest I have gone without posting anything new. It’s not because I have nothing to write about, if anything it’s the opposite, there are still plenty of things from my stroke journey that I plan on blogging about.

As the title of this post suggests, I have spent some time reflecting on everything that has happened over the course of the last nine months, the good & the bad. How often do we stop & think about things? For me, pre-stroke, it was not often at all, I was always rushing around from one thing to another at a hundred miles an hour, rarely stopping for breath it seemed. That was part of the problem, I just couldn’t see it, & it was just one of the things that led to what happened. Yes there were other mitigating factors in why I had my stroke, but the constant rushing around, taking on so much unnecessary stress, it certainly played a bigger part than I had ever realised. A stroke takes a lot of things from you, but one thing it gives you is time, & I would like to think that I have used my time over the last nine months in a positive way.

As I was reflecting on my journey so far, I got to thinking about all the things that have changed for me, for better or worse. And to be honest, there wasn’t too much I could think of that has changed for the worse. If anything this whole thing, I think, has made me a better person. It has taught me a lot about myself that I never knew – how much fight I have in me, how resilient I can be, how I can adapt to all of the changes forced on me by my stroke. You just don’t realise what you’re made of until it really counts. And I say ‘journey so far’ as this is a lifelong process that me & my stroke are in together whether I like it or not.

One word I have found myself using when reflecting on everything is ‘proud’. Proud of myself & what I have been able to achieve. At the start of all of this, one thing I wasn’t sure I would be able to do again was return to work, but two weeks ago, 35 weeks post-stroke, I returned to full-time work. While I had been off, especially at the beginning, the thought of going back to work would fill me with dread – would I still be able to do it, would it be the same, what if everything has changed. A lot of thoughts & questions I would often ask myself. As time went on I did start to think about work more & more, & I had kept in constant contact with a few of the lads in the office I work with, so I had a good idea of what was going on. I started doing some stuff from home to begin with, then doing a Friday morning in the office to get back into the office environment again, & then I made the decision to go back full-time. It wasn’t an easy decision, I was still asking myself the same questions, but I wouldn’t know for certain unless I made the jump & went back, only then would I find out. My first day back properly felt quite strange, like everything & nothing had changed. One thing that sis surprise me was how quickly I got back into it, & after a few hours it was like I had never been away from the place! Going back to work was something I needed to do, & I am glad & grateful I have been able to do it, a lot of other stroke survivors are not so lucky. I will write a full post about going back to work later, but for now I just wanted to mention it while I am writing about what’s been happening.

Something else that I feel very proud of is getting back to the gym & my weight loss. Before I started my 12 week GP referral, I hadn’t seen the inside of a gym for over 7 years. I had been a member all those years ago, & actually used to enjoy going, the reason I stopped was because I injured my ankle & never made the effort to go back again. I have often wondered since starting back again, had I carried on going to the gym & being more active all that time ago, would it have prevented my stroke happening. It is something I have often thought about but not spent too much time dwelling on. It is a question that I will never really know the answer to. Inactivity, again, was only one of the factors in me having a stroke, but one which will have had a knock-on effect with other things, like my high blood pressure & high weight for example.

Something else I will write a post about later is that, over the summer, I had a short course of CBT (cognitive behavioural therapy), & one of the many things we talked about was my going to the gym & being more active than I had been for a lot of years. One thing I said to the therapist was that going back to the gym saved me, & I absolutely meant it. I knew before starting the GP referral what I wanted to get from it, but I couldn’t have imagined that not only would I get everything I wanted from it, but so much more aswell. I wanted to lose weight, be active again & increase my fitness. I achieved all of these, but going to the gym gave me a purpose. As I was going at the same time of the day, sometimes four or five times a week, I would see a lot of the same people, & over time some of them were not only people I would see at the gym, they became friends. And because of the added social aspect, it didn’t make going to the gym so bad, not that it was ever a bad thing for me.

When I started at the gym I had clear targets & goals I wanted to achieve &, week by week, I was slowly ticking them all off. I had hit my original weight loss target quite quickly so set another, & on the last Friday of my 12 week GP referral, literally on the last day of it, I managed to exceed my new target (albeit only by 1lb). After I had finished in the gym that day & been weighed & got changed, I immediately signed up as a proper member again, the first time in over 7 years. Managing to achieve all of the goals I had aimed for gave me a real sense of pride. I remember smiling to myself walking to get the bus home that day, people probably thought I was a bit strange but I didn’t care, they didn’t know what I had gone through to get to where I was. There haven’t been many times I have been able to say that I’m proud of myself, but this was certainly one of them.

Another thing I have reflected on is driving. Before I got the all clear to do so again from Dr Anwar at my 6 weeks review appointment, I had wondered if I would be able to drive again, or if I would even want to after what had happened. I had got used to getting the bus, or a taxi if I was in a rush, would I really NEED to drive again? Well the answer to that is yes! After Dr Anwar cleared me to drive again on the Wednesday of my appointment, I didn’t actually get into my car until the Sunday. It was quite surreal, I had been hoping to be given the news that I could drive again, but when I was I just couldn’t do it straight away. I was apprehensive about it, but not scared. And when I did eventually go to drive, the battery in my car was completely flat! As the engine had not been turned over in 6 weeks, the battery had died, so I had to borrow a charger from a neighbour. After a few hours of charging the battery, the engine started & I was able to go out in my car again for the first time in 6 weeks. That first drive was both terrifying, as I didn’t want something to happen to me again, & exhilarating. Getting back behind the wheel again gave me back a lot of freedom & independence, I wouldn’t have to rely on others or public transport anymore. It really did feel like I had been set free, it was another post-stroke box ticked.

One thing I can’t not write about is social media & the help, advice & support I have received is something that I will never forget. After my stroke I wasn’t in a great place, I was frightened, felt isolated & alone, & had a million questions I wanted to ask but didn’t know who to ask. Then I slowly started connecting with other stroke survivors, who then put me in touch with others & the little network grew from there. It has been amazing to know that there are so many others out there who have been, or are going through, similar experiences to mine. It is obviously not good as it means those people have also suffered a stroke, but it has been good for me to know that I wasn’t alone. There is always someone who can help answer any questions &, if they can’t, there is always someone else who can. The support & encouragement has been brilliant, it really helped me during some dark days, more than those people will ever know. It  helped me to get my confidence back, as after my stroke it was shattered. I had never been the most confident person before the stroke, but slowly over time it built up. Writing these blog posts has also been great & the support from people about it has been overwhelming. I couldn’t have imagined getting some of the comments I have & that has also really helped with my confidence, a kind of validation that what you’re doing is ok.

I will get back to writing more regular blog posts now I have had a bit of time to reflect, & read some other stroke survivor blogs too. I love to read about other people’s experiences, & hopefully some people enjoy reading about mine.

I love the quote “the only time you should ever look back is to see how far you have come”, & that is what I have done. I  have looked back over the first stage of my stroke journey to really appreciate just how far I have come. I don’t look back with any bad feeling about what has happened to me, I have accepted it & am moving forward. I am just not moving at as fast a pace as I used to, I have learned to slow down. Why rush?

I have come a long way, but there is still a long way to go.

Part 23 - Ch-ch-ch-ch-changes...

After you’ve had a stroke there are a lot of changes that you have to adjust to almost immediately – lifestyle, physical, psychological, & I wanted to write a post about some of them. As always, I can only write about my own personal experiences, & just as every stroke is different, so is every recovery. Other stroke survivors may have also experienced some of the same things as I have, but there will almost certainly be things they haven’t, but they will also have experienced things that I haven’t.

A stroke changes your life instantly, & in the majority of cases there are no warning signs of what is about to happen. It happens so fast, yet leaves you with a lifetime of reminders, from the daily medication, to physical impairment, to mental & psychological changes, all of which I will try & cover in this post. After my stroke I desperately wanted to learn more & looked everywhere for information, especially that from other stroke survivors & their experiences, but it’s sometimes hard as you just don’t know where to look. I found connecting with people & organisations on social media to be my information lifeline, which then led me to other stroke survivor’s blogs. After my stroke I felt alone, isolated & frightened, even though I had a great network of family & friends around me, so it was great to read that others had gone through similar experiences & that I wasn’t alone. I want my blog to do the same for others, to let them know that they are not alone, & that what they’re feeling & experiencing is normal after what has happened. Hopefully my blog can do that.

Some of the first changes I had to deal with were physical – during my stroke I completely lost the feeling & function in my left arm, & also lost some function in my left leg. It never returned fully but, thankfully, immediately afterwards I did get the use of my arm & leg back enough to be able to get myself into the situation where I could call 999 & be taken to hospital. As my stroke happened in the right side of my brain my speech wasn’t affected so I was able to communicate fully, a lot of other people are not as lucky as I have since found out. I am a lot more physically able now than I was, & I put that down to my intense & relentless physiotherapy & gym work. I could easily have just sat back, felt sorry for myself & used the ‘but I’ve had a stroke’ card to avoid trying to help my recovery. Admittedly in the initial couple of weeks afterwards I didn’t feel like doing anything, but my attitude quickly changed & I wanted to do all I could to aid my rehab. I had survived the stroke, I had been given a second chance that many other who suffer a stroke don’t get. Due to the physical changes the stroke had left me with it was very hard sometimes, I won’t lie. I’ve come a long way in the six months it has been since the stroke, but in those first weeks & months it was hard work, hard to motivate myself sometimes because of how things had changed. Although I had regained much of the function in my left side, there was a noticeable loss of strength, & the movement wasn’t the same. To go from being moderately active & fully able pre-stroke, to having to adjust to not being able to doing things quite as well was hard. But I knew that the more I did, & the harder I worked at it, I would see improvements. And that is exactly what I did – I worked at it, & worked at it, & worked at it. Anyone who has followed me on social media during that time will know how often I was using the gym, how I was having regular physio sessions, how much & how far I was walking, all to help my recovery & help to give me back the control of what was happening. I had a clear goal throughout – to lose weight, increase my fitness, & help to build up my strength & movement, all of which I have managed to achieve, but it meant making changes of my own. There are also physical changes from the medication – I have always had relatively high blood pressure but had never been prescribed any medication to help bring it down until the stroke. The medication I am on works to keep my blood pressure lower & stable, & one of the side effects is that if I stand up too quickly I get a sudden rush of dizziness that lasts for anywhere between a few seconds & a few minutes. It was hard to adjust to at first & I kept forgetting, so there were times when I stood up without thinking & nearly fell straight back down again! It also means that, when I wake up on a morning, it takes me a little while to come round & I have to give myself a good few minutes to feel properly alert before making a move. Again, it was hard at first & I kept forgetting, but it is something that I have learned to adjust to.

It shouldn’t have taken having a stroke to make the changes I have, but as people have said since, sometimes it takes something which is such a massive shock to give you that kick to do it, that is definitely true for me. It isn’t until something like this happens that it makes you stop, really take a good look at everything, & re-evaluate. A stroke takes a lot from you, but one thing it gives you is time – time to really look at & question some of your lifestyle choices. I firmly believe that my stroke could have been prevented, I am absolutely certain of it, but I think it happened, in no small part, due to many poor lifestyle choices over a period of time. There are always things that you have no control over, but a lot of the things I believe contributed to my stroke were a cumulative build up of year’s worth of poor lifestyle choices, & it had to change. Because I had a clear goal in my head of what I wanted to achieve, I knew I had to make the changes necessary for me to see results. Before my stroke I didn’t think my diet was anything to worry about, but it was only when I started on my weight loss & fitness journey that I realised just how unhealthy I had become. During the week at work I would think nothing of taking Tupperware tubs crammed full of pasta with sauce from a jar – there was a time when I used to make my own tomato sauce to have with pasta, so I knew exactly what had gone into it, now I was using shop bought jars with who knows what in it. When you read the ingredients list on some of them it shocks you when you see just what you’re eating – additives, preservatives, and things you have no idea what they are! At work there is a vending machine in our reception area filled with chocolate, crisps & fizzy drinks, which I would think nothing of going & buying day after day. I have never been a lover of chocolate, but it was just the convenience of it, not having to walk into town to a shop for potentially something healthier. Also, during the week, I would work away from home for two days so, along with two others, we would drive down early on a Tuesday morning, stay overnight & come back late on a Wednesday night. On the way down we would always stop at a garage where I would usually end up buying something to eat as I hadn’t given myself enough time to have breakfast. It was the same story on a Wednesday night on our way home, stopping at a garage & buying something that isn’t great for you as you know you’re going to get home late & can’t be bothered to make something. While in-between, on the Tuesday night, we would often be at work until 8:30-9:00pm, meaning we wouldn’t get back to our hotel & eat until late, which is also not good for you. And we would always have a few drinks aswell. It’s only that I can look back now & see how bad it had got that I am amazed I didn’t have a stroke or heart attack sooner. And that’s a scary thing to admit. But it led me to make lifestyle changes – out went the unhealthy diet, instead it was replaced with salad, fresh fruit & vegetables, chicken & fish. It’s amazing how quickly you feel the benefit of eating healthily, especially cutting out stodgy foods like breads, potatoes & pastas. I didn’t drink any alcohol for just over three months after my stroke, so that also helped. Although I have recently started the process of phasing back into work, I am not back yet, but when I am I will be giving that vending machine a wide berth, & only taking in or buying a healthier option for dinner!

The biggest things for me to adjust to me after my stroke were by far the psychological changes. Because what happened to me was such a massive, life changing event & for me it happening so young, it made me question a lot of things. I was lucky in that I was able to get an answer to what had caused my stroke; a lot of people never get that, so I do consider myself lucky with that. I was never interested in ‘why me?’, I don’t think that particular question has an answer to it. You just have to accept that it has happened & try & move forward, focus on your recovery. It is wasted energy to look for the answer to why it happened to you. Acceptance was a big thing for me in my recovery, on so many levels – accepting what happened, accepting not being as able physically, accepting that you have to change how you think about things now. But just because you have accepted something, it doesn’t mean that you can’t work towards changing it. One of the things I have struggled with massively since my stroke is anxiety & panic attacks, this is the single biggest psychological change in me post-stroke. There were days where I would be crippled with anxiety, but at the time I didn’t know what it was. It presents in a lot of physical & psychological symptoms which, after something like a stroke, make you question your own body, & because you don’t know what it is, it makes you feel like you’re not in control. There were times when I could be sat watching TV or listening to music & I would suddenly, without any logical reason, get this wave of anxiousness that affected me mentally, as I would automatically think the worst & something bad was about to happen, to physical symptoms like the tingling sensation in my head, arm & hand, the tight chested feeling & breathlessness...all while I was just sat there. It also happened to me on occasion when I was out somewhere, suddenly I would get this sudden wave of anxiety & my legs would feel like they were made of lead, my heart would feel like it was going to beat out of my chest. Before I sought the help I needed, it was quite a scary thing, especially so soon after the stroke. But I did seek help from my GP who listened to what I had to say, what my symptoms were & how they were affecting me, & together we decided the best option to try for more immediate relief was to be prescribed medication to help. It was  joint decision, my doctor involved me completely & I had no issues with going down the route of medication. I was prescribed Sertraline 50mg & it has really helped to keep the feelings of anxiety at bay. I do still have some days where I feel worse than others, but I am in a much better place now than I was. I have also recently had my first CBT session with a clinical psychologist to help me to learn new ways of combating my anxiety, & have another three sessions already booked in & I am positive it can only help me.

Psychologically I was all over the place after my stroke & it took me a while to get on top of things mentally. It’s only natural in the days, weeks & months after a stroke that you assume the worst if you experience any new pains or sensations in your body, but when you also struggle with anxiety aswell it only heightens & intensifies those fears to such an extent that it can make you unwell. I haven’t had one for a while & don’t want to jinx it, but the last panic attack I had was the worst I have ever experienced. Again, there was no reason for it happening as I was on the medication that was helping me, but in the early hours one morning I woke up having a panic attack – it didn’t last all that long, around 20 minutes, but the feeling of panic was so intense & I had symptoms I had never had before, my vision was blurry, I felt ice cold, I was trembling uncontrollably & my legs felt really weak. Maybe it was my body adjusting to the medication, & like I say I haven’t had one since (touch wood). The psychological changes after my stroke were the most difficult for me to adjust to, it takes time to learn how to think differently about things, & the psychological changes & effects of such a traumatic event should never be underestimated.

A stroke changes you in many ways, some for the worse, but a lot for the better. Acceptance was key for me to focus completely on my recovery, as soon as you can accept what has happened to you, that’s when you can really move forward & adjust to all of the changes in your life. Yes, there may be certain things you can’t do anymore, or do as well as you once did, but that’s ok. As I said earlier, just because you have accepted something, doesn’t mean you can’t work towards changing it. Keep working, keep believing, stay as positive as you can & you will start to get the rewards for all of the hard work. And don’t forget that you are not alone, there are many others, myself included, who have been through this & continue to go through this – the aftermath of a stroke is a lifelong healing process, & while we may not ever get ‘better’ or ‘recover’ completely, it is a work in progress & as long as we keep working at it & doing all we can, we will stay on the right path.

Part 22 - So exactly when did my decline start...?

Since I had my stroke in January I’ve asked myself a lot of questions, looking for answers. A stroke robs you of a lot of things, but one thing it gives you is time – time to hit the pause button temporarily so you can reassess everything. I was lucky enough to be able to find out what caused my stroke, a lot of other stroke survivors are not so fortunate. And since I learned what had caused it I know that, even though it happened in an instant that night, it was in no small part to many years of not living right or looking after myself properly – an accumulation of a lot of things which led me to ask myself ‘when did the decline start?’. And while I don’t think I can pinpoint it to a specific date, I can link it to an event in my life – my nanas death. Although, as you will read below, it started before then, I think this is what caused the most rapid part of it.

I would like to tell you a bit about my nana first, so that you can get an idea of the kind of woman she was – she was the strongest, kindest, most loyal & giving woman I have ever known. She wasn’t just giving with material things, she was equally as giving with her time – she always had time for her family, day or night, especially her grandchildren, all nine of us who she adored.

Some of the happiest days of my childhood were spent at my nanas house; it was always full – full of family & friends of the family. And that meant it was also always full of laughter & arguments in equal measure. My nanas house was where everyone seemed to meet & gather, & she loved that – & although she loved to be surrounded by family, she never liked being the centre of attention; she didn’t like being made a fuss of. It was very rare that you would ever go to her house & there not be at least one other person there with her, sometimes you couldn’t even sit down because her house was so full! Sundays used to be especially busy as she used to cook Sunday dinner for quite a few people – aunties, uncles, cousins. She had been a cook when she worked so the meals she made for people were always looked forward to. Also on a Sunday, my nana would put a kind of ‘party tea’ out on her table – sandwiches, crisps, cakes, quiche etc, which people also used to come to her house for. Sometimes you could go without seeing certain family members for weeks or months at a time, but if you were at my nanas house at any time on a Sunday, chances are you would see most of them. My nana is also the person that I got my love of cooking from, & she always encouraged me, whenever I took her anything I’d made she always told me she had enjoyed it (even though sometimes I bet she hadn’t).

Near to her house there was a little beck, a small stream of water that ran down the length of the road, & when we were really young, my nana used to take me & some of my cousins down there. She would buy us all little fishing nets from the shop at the end of her road & we would go down to the beck when the weather was nice & we would ‘fish’ in the water – none of us ever caught anything other than stones in our nets, I’m not even sure there was anything to catch in there, but she would take us anyway as she loved to spend time with us whenever she could, & we could be down there hours at a time. There was literally nothing there other than the water & some trees, but when she took us down there it was like a different world...it was like an adventure. She would also make catapults for us from the branches of the trees, & she would climb the trees herself as she didn’t want to risk us falling – how many other people’s nanas done that I wonder, but that’s what made her so special to us.

Sometimes we would sleep over at her house, & when I did it was usually with one of my cousins. Whenever you slept there she would always take us to the Chinese takeaway round the corner from her house, it was guaranteed. And there would be endless chocolate & sweets & fizzy drinks, every kid’s dream...it’s a wonder we didn’t all have teeth falling out through all of the sugar, but it didn’t matter. There was a film we always used to watch at her house, not only if you slept there but most of the time – The Goonies! It was one of my favourite films as a kid, & still is to this day, & I think a massive part of that is because of the association with my nana & all of the memories it holds for me. I haven’t watched it now for a long time, but I know when I do put it on again I will instantly be transported back to those days sat in front of my nanas TV, with my cousins around me, not a care in the world.

Those are just a few little stories about my nana, there are thousands more stories & memories I could share but I would be here all day & this post would end up being the length of a book.

Around 2009 my nana was struggling to manage living in a house on her own so she moved into a self-contained flat within a warden monitored building not too far away. It was still on the same estate she had been living, which meant that she still had her family close to her. She still had a lot of people visiting her, but it was not like it had been all those years ago when we were kids & there was a constant stream of people in & out. Moving from the house to the flat was a big adjustment for her as she was a very proud woman & I don’t think she would have liked to admit, to herself more than us, that she just couldn’t manage on her own any longer. She learned to adapt & even enjoy living there, she already knew some of the other residents as she had been friends with them for years but, for me, she didn’t seem the same person as she had. She was still my nana & I still loved her just the same as always, but she didn’t seem like the strong woman she had once been, she sometimes seemed frail & it was hard to see – I know that age & time catches up with everybody eventually...but when it happens to someone you have grown up thinking is invincible, like my nana, it really hits you.

She lived there for a few years, but she’d had illnesses in that time aswell as the diabetes she’d had for over 20 years, & eventually she was struggling to manage to live on her own in the flat. It was heartbreaking but the decision was made by her kids (my dad & his brothers & sister) for her to go into a care home in 2012 so she could be looked after properly. My nanas mother, my great grandma, had also been moved into a care home in the 1990’s when she was in her 80’s & it was like history was repeating. Another thing that seemed to be repeating was that my great grandma developed Alzheimer’s a few years before it eventually claimed her life, & my nana had started displaying some of the same symptoms.

I remember some of the times I went to see my nana in the care home she was in, & although it was a nice enough place, it broke my heart to see her in there. She had never really looked her age, but over the last few years she was still with us, she had started to look every one of her years. One of the times I went to see her she’d had an infection in one of her legs & it was in bandages, it was horrible to see my nana look so frail, ill & in pain – this wasn’t supposed to happen to her, not my nana, not the strong woman who would never let anything stop her. But she wasn’t that person anymore, not physically anyway. Her personality & spirit remained undiminished to the end, & she was still my nana who I loved more than anything, but physically she had declined so much. Over the course of a couple of years my nana moved care homes a couple of time, the last of which was the place that my aunty worked. She had wanted her to move there so that she could help look after her.

She had been ill with various things, & the last time she had to be admitted to hospital was the worst. She had been taken poorly at the care home & taken into North Tees hospital, which thankfully was just around the corner. She was in for just less than a week – she was taken in on Monday 17th March 2014. My mam told me that she was in hospital & that she wasn’t well & to maybe think about going to see her as it could be the last time to say good bye. I didn’t want to see her looking so unwell, & I was upset, but I knew that I had to go. After I had finished work I went to the hospital to see her, she already had plenty of people around her bed on the ward she was on, but my aunty ushered me through to her bedside so I could see her & talk to her – I didn’t like seeing her like this & had to fight back tears a few times. Recently, the symptoms of the Alzheimer’s she had been displaying seemed to have gotten worse, sometimes she would take a while to recognise people, & she still thought ‘home’ was in a house that she hadn’t lived in for over 30 years. It was really hard to see her like this. It absolutely broke me.

Over the course of that week I got myself into a routine of finishing work, going home for my tea, then walking over to the hospital to sit with her – she was moved into a room of her own after a couple of days, I think by the doctors because they just knew she didn’t have long left, & our visiting was not restricted which meant we could come & go freely. My dad & his brothers & sister all took it in turns to be with her so she wasn’t on her own, taking it in turns to stay overnight with her – this was how it was all week. On the Saturday I could spend more time at the hospital as I don’t work on a weekend. There were always people around her, & I think she would have loved that. Sadly a few days earlier she had lost consciousness, she was still there, still fighting & breathing, but I didn’t see her awake again.

On the Sunday I, again, spent more time at the hospital. It got to just after 10:00pm & I got up to go home as by this time I was really tired & was starting to fall asleep sat in one of the chairs. I got my jacket on said goodbye to everyone who was there, then went over to my nanas bed, kissed her on her forehead & said goodbye to her. When I left the hospital, while walking home, I started to cry, I couldn’t hold it in anymore – I have said since that I think I just knew that she was going to go that night. And she did. Shortly after 11:00pm on Sunday 23rd March 2014, age 78, my nana passed away peacefully with three of her four kids around her. Her breathing had deteriorated that night & my aunty had said to her later on when it was just my nana & her kids there “everyone else has gone now mam, if you want to go none of the grandkids are here to see it”. I think she was waiting for that, as my aunty said that she took one last breath & left us. I was still living at home at the time & my dad rang my mam from the hospital to let us know, & after we found out we walked back over to the hospital to see her. Although I had only seen her an hour before, she looked more peaceful now. There were a lot of tears that night as people started getting the news & close family were coming back over. I broke down as soon as I seen her again, but I knew that she was now in a better place, she wasn’t in pain anymore.

And to bring me back to the point of this post, & the question of when my person decline towards the stroke started, I think it all started when my nanas did. I was so used to seeing her as the strong, larger than life woman who never let anything stop her that I had grown up with, that seeing her health slowly start to decline over those few years was very painful. And I think that, subconsciously, I started to decline with her. I know that there were other factors aswell, but I think losing my nana did play a big part. She had always been a huge part of my life, & to not have her in it anymore was hard. There are still times, even now, when something happens that I would love to tell her, the biggest being when I bought my house, sadly she never got to see it but I am sure she would have been proud. Over the time since we lost my nana, I hadn’t looked after myself as well as I should have done – there was a lack of exercise, poor diet, I was working long hours a lot of the time. As I said at the start of this, it was an accumulation of things that caused my stroke, but I think my decline in health, mentally & physically, started well before it happened.

Part 21 - Don't say the 'C' word...

If something changes & you don’t see it, has it really changed?

A strange intro to a blog post, but something I have been asking myself recently. It all started a few weeks ago, I was drying myself after a shower when I noticed a mole on my right leg, at the top of my calf, that looked a lot bigger than I remember it being. I’ve always had what I would consider to be more than an average amount of moles on my body, but I had never really took much notice of them...until now. I do remember the mole on my right calf being more noticeable than the rest, but had it always been this big? Had it slowly been changing over time & I had just never noticed before? Moles are known to change over time & it not be anything to be concerned about, but there is also another side to that which is, if you do notice any changes, to be vigilant & seek the opinion of a medical professional. This is what I did.

A few weekends ago, after initially noticing, it was still bothering me & I kept wondering & asking myself if this mole had always been so big & so noticeable. Throughout the last six months since I had my stroke, it is not something that I had taken any notice of, I had been too preoccupied with everything else that I’d had going on. So why now, why was I only noticing this now? Surely it couldn’t have changed so much so quickly...could it?

On the Monday morning I rang the GP surgery to make an appointment with one of the doctors to have the mole checked & see if they thought there was any cause for alarm. Like most other surgeries, you have to call early on the morning to try & get a same-day appointment. Mine is no different & you must call at 8:30am to try & get an appointment that day. Usually it takes an absolute age to get through, especially on a Monday as it is the busiest day with people from over the weekend all trying to be seen aswell, but this time when I rang it only took a few attempts at getting through. When the receptionist answered I asked if I would be able to make an appointment with one of the doctors, she asked me what the problem was so I explained that I had a suspicion that a mole on my leg was getting bigger. She took my details & asked if I was able to come in to see Dr Tawfiq at 9:40am that morning which, of course, I was. I thanked the receptionist, hung up & went straight in the shower. I always go to the gym on a Monday, I like to get back into the routine after a weekend away, so I took my gym bag with me. The doctors surgery is at the opposite end of the town to the gym, so is only a 5 minute drive from there if there is no traffic.

When I got there I went to the computerised checking in system & entered my details – I was checked in & could go & sit in the waiting area to be called by the doctor. As I sat there waiting I had a lot of thoughts going through my head, one part of me was telling myself that everything would be fine & there would be nothing to worry about, but there was another part of me that was fearing the worst & that the doctor would tell me that she thought it was something more sinister. Ever since my stroke, fearing the worst, especially where my health is concerned, is just a natural reaction now. After all, I was only 33 when I had the stroke. That wasn’t expected to happen but did, so that kind of mental safety net where you can convince yourself that you are absolutely fine & ‘it won’t happen to me’ is gone, & you accept that you are not as indestructible as you thought you were. It’s a hard thing to adjust to mentally, it makes you more realistic in how you think.

Not unusually, due to higher demand on a Monday, the doctors were running a little behind, so I had to sit there waiting a little bit longer. I didn’t really mind as I knew I would still be seen, but sometimes you do see people in doctors waiting rooms getting agitated because they have to sit waiting for maybe an extra 10-15 minutes. Just before 10:00am my name came up on the screen & I was called in to see the doctor. I had never seen Dr Tawfiq before, I think she is a more recent addition to the surgery to replace a GP who had left. When I got to her room she asked me to have a seat on the chair next to her desk & she asked me how she could help. I explained to her that the mole on my right leg seemed to have gotten bigger, it was more noticeable than I remember it. She asked to have a look at it so I pulled the leg of my jeans up so she could see it. She had a quick look then got a tape measure out to see how big it was – it was just over 7mm, apparently anything bigger than 6mm can be considered abnormal. Something else I noticed when I was showing it to Dr Tawfiq was that the edges looked really odd, they were not rounded like they should be, they were quite jagged, another potential sign of there being an issue.

Dr Tawfiq asked me if the mole had gotten bigger, but I couldn’t say with certainty that it had or not, I said I thought so & it certainly looked more noticeable than it ever has. She said that, because of the potential it had grown in size & that the borders looked different, she didn’t have the facilities in the surgery to look in more detail so I would need to be referred to a Dermatologist to have it properly checked. She told me that, within the guidelines of things like this, I would receive an appointment with a specialist within 2 weeks. Before I left, she said that she didn’t think it would be anything to worry about & that the specialist would hopefully just offer the same reassurance.

As I was driving to the gym from the doctors surgery my phone rang – I pulled over to answer, it was the receptionist from the surgery. She said that she had an appointment for me to see a skin specialist at James Cook Hospital on 10th July at 11:00am if I could make it, to which I said yes. It would be exactly 2 weeks from the appointment with the GP to the appointment with a specialist. When I got to the gym all I could think about was the appointment I’d just had at the doctors & the upcoming appointment with the specialist. All the time I was in the gym that morning I felt like I was in my own little world, even running on the treadmill it was all I could think about. Usually the gym helps to clear my head...not this time.

When I got home I had some dinner & read the newspaper I’d bought on my way home. I had decided not to tell anyone else about the appointment with the doctor, or the one with specialist a couple of weeks later, not until I had been & got the professionals opinion. Over the course of the 2 weeks I had to wait, I never mentioned anything, but I did subtly try asking my mam questions without giving too much away about what I had going on.

One thing I did do, very stupidly, was looking online to see if I could find anything on changing moles, to see if it could be explained as something harmless. Well, as you know when you consult Doctor Google, you almost always see the worst case scenarios. And you never just stop at asking one question, as one answer leads you to ask another one, then another & another, & you find yourself ending up reading things that maybe don’t have too much relevance to what you actually wanted to find the answers to. But again, one of the things my stroke took from me was my ability to feel secure within myself, especially when it came to anything health related.

With every question I typed in, one word kept being repeated – Melanoma. One thing that you are constantly told about moles changing in size & shape is that it could potentially be a symptom of skin cancer, of which Melanoma is the most aggressive & deadly kind. The more I read, the more this word kept appearing, & the more anxious it made me, especially as I had decided not to talk to anyone about what was happening. There was no-one to open up to & have that release, so it made it harder. As people know, since the stroke, I have suffered with anxiety & panic attacks. And over the two week period I had to wait to see the skin specialist, the anxiety seemed to be on a new level. Thankfully there were no panic attacks, but I had all of the symptoms of my anxiety attacks again but more intense, I also wasn’t sleeping properly & I was really restless. So as well as the anxiety being so bad, I was also absolutely shattered physically as I didn’t get much sleep for those two weeks, & for someone who also suffers episodes of post-stroke fatigue, the last thing you need is to feel even more physically & mentally drained than normal.

On the Sunday night, the night before my appointment, I couldn’t settle. Even though I had my appointment the following day & I could hopefully get some peace of mind, I knew there was a possibility that it could turn out to be something worrying. I couldn’t sleep, I kept waking up all through the night, looking at the clock & seeing that not much time had passed since the last time I looked! My appointment was at 11:00am so I made sure I was up early to have some breakfast & get a shower. I also wanted to get there in plenty of time because a) I wasn’t that familiar with James Cook hospital so didn’t know where this department was, b) I didn’t know what the traffic was going to be like getting over there, & c) parking there is a nightmare, so there was also a potential wait to get parked. 

As it turned out, the traffic was actually ok, however, as I had suspected, when I arrived there was a queue already building for the car park I needed to be in. Thankfully I had made it over in relatively quick time so the 15 minutes or so I waited to get parked didn’t really matter. I had to go in through the North Entrance, & when I walked in I went straight over to the reception desk to ask for directions to where I needed to be, & the lady working there was very helpful. It was still some time before my appointment so I had a quick walk to where I needed to be, just to get my bearings, & afterwards I walked back to where the shop was to buy a drink – I remembered that the shop was right near to the eye clinic I had been to a few months previously. After I had been to buy a drink, I went & sat in the seating area for a little while as I still had time before my appointment. As I was sat there I started over thinking again, strangely I had felt fine all morning knowing I was seeing the specialist, but suddenly I had all of these thoughts rushing around in my head again so I walked back down to the department I needed to be at.  When I got there I went to the reception desk & handed over my letter & told them I had an appointment. The lady checked my details & asked me to take a seat. I had got there about 15 minutes early so had to sit & wait, so I got my phone out, checked some news & sport websites, and checked social media...the usual hospital waiting room behaviour.

When it was time for my appointment I was called in to see Dr Allison – I felt fine, I thought I might have been more nervous or anxious. When I went into his consultation room I had a seat next to his desk & he asked ‘what I had for him’, so I explained about the mole on my leg. He asked to see it so I pulled the leg of my jeans up for him & he, like Dr Tawfiq, got a tape measure out to check its size. After inspecting it, he said that he didn’t see too much to be concerned about & that he too has moles similar to mine. He said that he suspects it is just a mole ‘misbehaving’ rather than anything underlying, but advised having it removed as a precaution, which I agreed to. He said that, once it has been removed, sometime within the next 4 weeks, it will be sent to a laboratory to be checked & the results would be sent back. He again said that he didn’t think it would be anything to worry about, but we would take it from there once the results are back. I felt relieved – surely if he suspected something sinister he would have had it removed straight away or been more concerned? That was quite reassuring for me. He said that I would receive a letter with an appointment date to have the mole removed as an out-patient under local anaesthetic. I thanked him for his time & left. I had arranged to meet my mam at lunchtime & that’s when I told her about my appointments & about having the mole removed. She seemed a little bit shocked at first, but I told her what the specialist had said & she seemed fine. I think she was more shocked that I hadn’t mentioned anything about it before.

A few days ago I received a letter with an appointment date to have the mole removed – Friday 4th August at 8:30am. As it is under local anaesthetic I am only a day patient & can go home afterwards, however, the letter says not to drive home afterwards.

One thing this has shown me is how unfamiliar I am with certain aspects of my body, especially when it comes to my skin. I have always had a lot of moles, but I wouldn’t know how many there are. I also wouldn’t really know how many are new & how many have been there for years. Another thing that you are told is, after a certain age, any new moles on your body need treating with suspicion. However, you read different things about what age it is ‘normal’ to get new moles until – some say in your twenties, some say in your forties. I have noticed some new smaller moles recently, & also other brown marks on parts of my skin. I know not all are moles & some are just age related marks & some are from being in the sun while it is warmer weather. I had planned to ask the specialist to check & see if he could see anything in any other moles to be concerned about, but it totally slipped my mind. I will wait until I see the specialist next to ask him, one thing I won’t be doing is looking online for the answers!

I have started being more sensible when exposed to the sun now, I have started putting sun cream on any skin not covered by clothing. Past sun exposure can also catch up with you later in life too, even if you have only been sunburnt a handful of times growing up, it can increase your risk of skin cancer, something I was completely unaware of. Not that I used to have sunburn often when I was younger, but I did on the odd occasion & I never thought it could, potentially, one day cause me any issues. Your body is a very complicated thing!

I have also started getting more familiar with my skin & becoming aware of what is ‘normal’ for me so that, if there are any changes, I can react to them more quickly & seek medical advice if needed. Since my stroke, I've learned not to take any chances with my health. It's not worth it.

Part 20 - Running in the right direction...

The first time I went to the gym properly, without having any consultations, was two days later. The gym instructor who I’d spoken to at the consultations I’d had advised me not to try & do too much too quickly, & to maybe stick to coming to the gym for two days a week to start with & see how I felt before looking at increasing – it was good advice & I’m glad he did say that as knowing me I would probably have pushed myself too much too soon & would have set myself back.

Even though I had been cleared to drive again by Dr Anwar, I was still getting the bus to most places, & the gym was no different. While I had been unable to drive I had got used to using public transport again, it was fine. It gave me a chance to do a bit of extra walking to & from the bus stops & where I needed to be, & it also gave me a chance to have a walk around the town centre after I had finished in the gym. It had been a long time since I had done that as, when I was driving, I would always go somewhere different. Being off work had gave me the time to get to know my town again & it is one of the positive things to happen.

When I arrived at the gym for the first proper day I didn’t know what to do – when I had been a member all those years ago we used to have to go to the reception desk, let them know which of the facilities you were using & they would swipe your leisure card through their system & then you went in, but it had changed slightly since then. I walked over to the reception desk, told the lady that I was here to use the gym & handed her my card. She swiped it through the system & told me how much I needed to pay, then after that had gone through the computer printed a 4 digit code out which you needed to use to get into the gym. When you are a full member of the gym you bypass the reception desk, go straight into the gym & swipe your card at the barrier & it lets you in. I wasn’t able to do this but at least now I knew what I had to do every time I came to use the gym. One thing that hadn’t changed, however, was that if you wanted to use a locker you needed a £1 coin to put in it so you could lock it & take the key – as I hadn’t been in so long I completely overlooked this! I had used all of the change I had getting the bus there & only had a £5 note on me so I needed to ask at reception if they were able to change it for me, which thankfully they could. Embarrassment averted!

I walked into the changing rooms to change into my gym clothes ready to use the gym for the first time in nearly seven years (at my initial consultation the gym instructor looked at my previous details & the last time I had used the gym was 2010). I did feel a little bit nervous about getting back to using the gym again, but I was also excited to get started. As I mentioned in my previous post, the smells of the gym brought back memories for me of when I used to come here, & being in that changing room again done the same. I remembered all those times I had been in there on an evening after work, which was when I used to go back then as it was the only time I could fit it into my day. I felt comfortable being back & it did make me think about how much time had passed, how m any wasted years had gone by...& it also made me think that, maybe, if I had carried on coming then I might not have had my stroke. It’s something I will never know so haven’t wasted  any time over thinking it. I had made it back now & that was the main thing. I was ready to start righting a couple of wrongs.

After I had got changed I made sure I had my bottle of water with me, picked up the clothes & trainers I had just changed out of & walked out to the lockers to put them in there until I had finished in the gym. I put my pound coin in, turned & took the key & was ready to go.

I had my sheet with me which the gym instructor had written my circuit on for me & I made my way upstairs to where the exercise bikes were. I’ve always said that you never realise how unfit you are until you get on a bike again – I found this out two days earlier when I done my circuit for the first time. If anything it felt harder this time as I was still tired from doing that circuit & also the post-stroke fatigue had hit me like a sledgehammer. I pushed through it though & carried on with what I was there to do – nothing was going to get in the way of me reaching my aim of why I was there, to bring my weight down & increase my fitness.

That first day back was hard but it felt great to be exercising & be more active again. Even though I was physically drained afterwards, strangely I felt amazing & I was looking forward to when I was next going. Me, someone who had not seen the inside of a gym for seven years, someone who had recently had a stroke, looking forward to going back again. Exercising & being more active had made me feel more alive than I had for long time, which is kind of ironic because of the stroke! I remember sitting on the bus home from the gym that afternoon & thinking about which days I would be going the week after, & also thinking about my diet & planning what I was going to be eating which would be healthy & help with me losing the weight I wanted to shift. I would be going to do my shopping on the Saturday so I started making a list on my phone.

I was going to stick to the same things for a while & see how it would go – some people maybe couldn’t do that as they want a bit more variety, but I was doing it for a reason so I had decided that, during the week, I was going to have bran flakes for breakfast, a salad with tuna for dinner, & chicken & vegetables for tea. I would also be having fruit & yoghurts aswell, so all healthy. I had also decided to cut out bread, potatoes, rice & pasta as I ate far too much of them, I wanted to eat as fresh as I could. I did slightly relax what I ate on a weekend, but when it came to Monday again, I was back in gym mode. After my first full week at the gym I asked them to weigh me, something I would ask them to do for me every Friday. That first week I lost 6lb...I was absolutely over the moon, I never expected to lose that much straight away. The buzz from seeing my weight come down was also something that kept me going too, I looked forward to when I finished in the gym on a Friday so I could see what progress I had made through the week.

After a couple of weeks I felt great & felt like I could increase how many days I was going to the gym from two to three. I spoke to one of the gym instructors & asked what they thought & he said that, if I felt like I could manage an extra day to go for it, only I knew what my body was telling me. That has been a theme throughout, since having the stroke – listening to my body. It was hard to do at first as I didn’t want to accept what had happened & the limitations it had given me, but you learn to listen & adapt. You can still do the things you always enjoyed before, but you just have to be mindful of overdoing it & setting yourself back. I stayed at going to the gym three days a week, I didn’t try & increase it any further. To this day it is still the amount of days I go.

As the weeks went by I always had the target I had set myself in mind – getting my weight down to 15st, it is what would drive me & get me to push myself that little bit further. And also as the weeks passed, I started slowly increasing what I was doing in the gym. I slowly increased the weight on the resistance machines I was using, but it was only small amounts every few weeks – the weights on the machines go up in blocks of 5kg, so every time I increased I only added an extra weight each time. I also started increasing the times & levels on the cardio machines I was using, again small amounts at a time to give my body time to get used to the extra that I was asking of it. On the exercise bike is where I felt it the most to begin with as my legs just weren’t used to working that hard, & especially since the stroke with my left side still not as strong yet.

The thing that I am most proud of since starting my referral at the gym, though, is that I started running on the treadmill again. When I was a member of the gym seven years previously, I used to spend most of my time on the treadmill running & walking on an incline. It did take a few weeks, & couple of failed attempts, before it happened. It wasn’t something that I had planned on doing as I just didn’t think I would be able to, but the more I was using the treadmill, the more often I would be thinking ‘I wonder if I will be able to run again’. And so after a few weeks I gave it a try. I started off walking & increased the speed until I could no longer just walk & had to try & jog. The first time I attempted it I didn’t last very long, I think it was due to a combination of tiredness & asking a bit too much of my left leg too soon. I didn’t let it stop me trying though, & after a couple more tries I finally did it. For the first time in seven years, & just over two months post-stroke, I was jogging on the treadmill. I didn’t last for long & had to take the speed down to walking pace again, but that didn’t matter, I had managed to jog! It was a massive thing for me, & yet another turning point on my journey.

With regards to the weight target I had set myself, those who follow me on social media will know that I did manage to get there. It took me 8 weeks to go from 16st 8lb to 15st exactly. I remember feeling completely overjoyed when the number came up on the screen of the scales at the gym. It was also quite emotional for me aswell as all of the hard work had paid off, I had hit my target in a far shorter time than I could ever have imagined doing it. But as happy as I was that I had managed to get there, I was now wondering if I could possibly go further. I just enjoyed having achieved what I had set out to do for a few days & it gave me a chance to think & re-evaluate things – I still had another 4 weeks left of my gym referral...what could I realistically do in that time? After a weekend of deliberating I had decided on a new target – 14st 2lb. If I could get there it would take my weight loss to an even 3st. It worked out at having to lose 3lb a week, something which I had already been doing, so thought it was an achievable target. And so it proved to be as, on the very last day of the very last week of my referral, I stepped onto the scales to see if I had managed to lose the last few pounds. It seemed like ages as the scales registered my weight, but eventually it did bring the number up...14st 1lb. I had done it, I had gone just over the 3st mark for my weight loss. I could have cried I was so happy! I was now the lightest I had weighed in quite some time & it felt great. I felt great all round, not just lighter – I felt fitter, stronger & healthier than I think I ever have. It was such an amazing feeling & one I won’t ever forget.

As the 12 weeks of my referral were now finished, I spoke to one of the gym instructors about joining the gym properly as a member, like I had been so long ago. It is something that I had mentioned to them a few weeks previously so they knew it was something I was thinking of doing. After I had been weighed I went to get changed while the instructor started the process of changing my details on their computer system – when I came back out we sorted out the direct debit details & he took a few other details from me. And that was that...I was now a full, proper member of the gym again after seven long years. My leisure card would now work when I swiped it at the barrier to get into the gym...no more waiting in queues at the reception desk! I felt a massive sense of achievement at the progress I had made. I was proud of myself & it felt nice.

I have since said that the time I spent in the gym on my referral has been life changing for me. It gave me purpose, it gave me something to aim for, it made me push myself harder, and it took me out of my comfort zone. But it didn’t just change my life in regards to the weight loss & fitness, which were by far the biggest things for me. It gave me back some confidence, which had really been hit by my stroke. I also made some new friends during my time there, not just with the other people who use the gym, but also the instructors & people who work there. You get to know people, you have conversations, and you have a laugh with them. You get to know them, not just see them as other people in the same room as you. You find out about their lives & they find out about yours. It was nice to interact with so many different people again. It changed my life for the better going there, & I will carry on going this time & not let it just trail off again.

This post kind of brings me to the end of the beginning of “the journey”. I have written about my experiences right from the start, about the night I had the stroke. I have written about my time in hospital, coming home & everything that has happened since. It has been a great therapy for me doing it, it has really helped me to process everything while I have been writing about it.  It is now five months since my stroke & the only other part of this journey I can write about is when I return to work, which I am hoping to start phasing back into on Monday 7th August.

I will still continue to write & keep my blog updated as, just because this particular part of my journey is coming to an end, a new one will only just be starting....

Part 19 - Paul, meet gym...

Even though I was still having regular weekly physiotherapy sessions, I wanted to do more. I felt like I could push myself a little bit more. There were a couple of people on social media who mentioned to me about gym referrals via my GP – I had never heard of them & wasn’t aware of them as I had never been in a position where I had needed one before. Before my stroke I was relatively active, although admittedly not as active as I once was or maybe should have been, but I was in reasonably good health (or so I had thought!). I was making an appointment with the doctor anyway, so I thought I would also talk to him about being referred to my local gym while I was there.

After my six week follow up with Dr Anwar I had felt like a dark cloud had lifted from over me, the constant worrying about everything had gone. Although after something as life altering as a stroke, that worry never completely leaves you, but it was at least now closer to the back of my mind. It also helped to alleviate my anxiety a little aswell, although that is also still with me & is something that I still struggle with to this day. As I was now feeling a lot happier, calmer & more settled than I had at any time since the stroke, I now also wanted to really start making some positive lifestyle changes & getting myself healthier, & getting back into a gym for the first time in 7 years was exactly what I needed.

On the day of my appointment I went to see Dr Garg, one of the GP’s at my doctor’s surgery. I had seen him on a couple of occasions in the past for whatever reasons so I knew him – the doctors at the surgery can often change & if you don’t have any reason to go for a while, you might not know the new ones. When my name was called for my appointment I went through to Dr Garg’s room & sat down on the chair next to his desk. He asked me what had brought me to see him so I explained that I’d had a stroke in January. His response was one of shock – “My god! A stroke at your age?!”. He then went onto his computer & brought up the notes & scan images from my time in hospital & sat for a few minutes looking at them, briefly looking up now & then to comment how shocked he was about what had happened to me. He asked how I was & how everything was going so I told him that, initially, I really struggled to cope, more mentally than physically, but since my six week follow up at the stroke clinic I felt like I was now starting to head in the right direction but I needed his help with something if he could. He said that whatever he could do to help me he would do it, just let him know what it was. I asked him if the surgery done gym referrals as I wanted to do more physical activity to help with my recovery, as well as the physio – he said that they did &, of course, he would organise one for me, not a problem at all he said. At the end of the appointment he asked me to go to reception & ask one of the ladies working there to give me a referral form to fill out & he would sort it out for me. I really appreciated Dr Garg’s help & willingness to do whatever he could for me. Sometimes when I had been to see a GP in the past I got the feeling that they just wanted you in & out as quickly as possible – I know they’re really stretched, but sometimes appointments can feel what I would call ‘cold’. Since my stroke, every appointment I’d had, the doctors were all great & couldn’t have done any more for me.

After I had filled out the referral form I handed it back to the receptionist who asked me who it needed to be given to, so I told her that Dr Garg was organising it. I left the doctors surgery after that appointment feeling really positive & like I was starting to really get somewhere. As I was walking to get the bus back home, I started thinking about my diet & what more I could do to help bring my weight down. Since I had come home from hospital I had already started eating more sensibly, cutting out a lot of the really unhealthy things I used to eat & drink before the stroke, but I wanted to go further with it – I wanted to lose weight, set myself a target I wanted to get to & try & get there by the time my gym referral ended. It would take a couple of weeks before I got the phonecall from the gym to arrange my initial consultation with them, so in the meantime I carried on with my walking, which I was trying to do as often & as far as possible, & my weekly physio, which was really helping to restore some of the lost movement in my left side.

I haven’t really gone into any detail about my physiotherapy in previous posts so I will explain a bit more now about what I was doing. Anyone reading this that has been unlucky enough to have suffered a stroke & needed physiotherapy sessions will no doubt recognise a lot of what I mention, maybe it is some of the same things that they have also done. For me personally, I initially thought that some of the movements & actions I was being asked to do were a bit pointless & wouldn’t help me. I just didn’t believe they would be enough to do me any good, but I tried to keep as open a mind as possible & persevered with them, & I am glad I did as, in the end, along with pushing myself to do more & more things, they did help. But don’t be afraid to challenge your physiotherapists, if you don’t think that something is right for you, have that conversation with them. They are qualified healthcare professionals who will be able to explain to you properly exactly why you are being asked to do what you are doing & they can put together the best program for you to see the best results.

Some of the movements & exercises that were part of my physio program included things to help strengthen core muscles, but also things to help re-train my left arm, hand & leg to be able to do things as fluidly as I was able to before the stroke. The consultants told me that I would not get back to 100%, but they estimated that I could, with regular physiotherapy & practice, get back to around 80-90% which was just about as good as I could have hoped for. Some (not all) of the things I was doing were (& I don’t know if these exercises have individual names or not) – pelvic tilts (both while lying down & sitting), lying on my back with my right leg bent while I lifted & held my left leg off the floor, something my physio called ‘clams’ (lying on my side with both legs bent while lifting my knees apart), something called ‘bridging (lying on my back with both arms by my sides while lifting my pelvis up & holding for 10 seconds – I also done this with my arms crossed on my chest aswell), something called ‘knee rolls’ (lying on my back with both legs bent & moved them slowly from side to side), there were also things I done while sitting down, like single arm raises, bilateral arm raises, touching my earlobes with opposite index fingers, arm circles. There were also things that I had to do which were designed to get me using my fingers, such as placing my hand flat on the table & raising one finger at a time, keeping time to music with my fingers, crumpling a tea towel or piece of paper with one hand, turning the pages of a book or newspaper with the fingers on one hand, & picking up several small objects one at a time & placing them somewhere on the table, then placing them back again one at a time. As I said, I didn’t think that a lot of it would help me, but I was happy to be proven wrong. You just have to keep working at it & practicing them to get you used to making those movements again. I had these regular weekly physio sessions for a while, but when the gym referral came through, I was able to do both.

After a couple of weeks I got the phonecall from the gym. It was the same gym that I had been a member of years previously, so it was good that I was already familiar with it. I had enjoyed going until I injured my already dodgy ankle again, & had never bothered going back. When I spoke to the guy from the gym who had rang me on a Monday, he asked if I could come in on the Wednesday for a consultation with him before I could start using the gym, which was fine with me – I had to ring & reschedule a physio appointment to fit it in, but they were really understanding when I explained why. My consultation was now arranged for 2pm on the Wednesday. While I felt nervous about going, I was looking forward to it. I wondered of any of the same staff still worked there from the time I used to be a member.

On the afternoon of the consultation I made sure I went to get a bus that made sure I got there in plenty of time – even though I had been cleared to drive again, I was still walking & getting the bus. When I got there I went to the reception desk & told them that I had an appointment for a consultation & they asked me to take a seat. After a few minutes the guy from the gym came out to take me through to his consultation room. When we got there he asked me a few questions & said he needed to take a few measurements from me – height, weight, BMI, blood pressure. As I had made the decision to lose weight & set myself a target to get down to, getting my weight checked before I started at the gym gave me the starting point I needed. When I got weighed in hospital after my stroke I weighed 17st 2lb, the heaviest I have ever know me to be, & it shocked me at the time. When I got weighed at my consultation I weighed 16st 8lb, so I had lost 8lb. It gave me hope, if I could lose 8lb without really trying & just making some small changes, what could I do if I really put everything into it? When he took my blood pressure the reading was quite high so he waited a few minutes & done it again. Still quite high, but he said it could just be because of the consultation environment. He then asked me for a list of the medication that I was currently taking, so I wrote them down for him. He asked me what I wanted to get out of the 12 weeks during the referral so I explained that I wanted to bring my weight down while bringing my fitness levels up. I also told him that I wanted to use the gym to help with strengthening & aiding movement on my left side. At the end of the consultation we made another appointment for the following Monday as he was going to look at my notes in more detail & put together an initial training program for me with which cardio & resistance machines he recommended I use & how long to spend on each of them. After that appointment I would be free to start using the gym – that was music to my ears as I was chomping at the bit to get started.

When I got there for the appointment on the Monday, true to his word, he had drawn me up a training program for me. He had asked me to bring my gym clothes to the appointment with me as he wanted to go through the program he had put together. I went to the changing room to get changed & went back out ready to go through it – it was the first time I had been in a gym ready to exercise in 7 years. Before he ran through everything with me he asked if I still remembered how to work the machines, which I did, so at least I wasn’t an absolute novice...just completely out of practice! As we walked round from machine to machine, it brought back memories from my time at the gym previously when I had been a member, same with the smells of the gym & the equipment. When we had finished my run through he asked me if I wanted to give the circuit a go, & I said I definitely did. The times he had put on my program next to each machine added up to around an hour, but because I hadn’t used the equipment for such a long time, & because I wasn’t as strong on my left side, it took me longer to finish the circuit as I needed longer to rest between finishing one machine & starting another. The circuit that I would be following consisted of:

Exercise bike – 10 minutes, start at level 1 & increase every 2 minutes.

Inner thigh machine – 3 sets of 12 at 30kg.

Outer thigh machine – 3 sets of 12 at 30kg.

Treadmill – 10 minutes, 2% incline, at a level of a brisk walk.

Leg press machine – 3 sets of 12 at 40kg.

Chest press machine – 3 sets of 12 at 30kg.

Upper back machine – 3 sets of 12 at 25kg.

Arm cycle – 10 minutes at level 5.

Cross trainer – 10 minutes at level 5.

After I had finished I felt great. Very tired & very sweaty, but I felt the best I had felt in a long time, even before the stroke. What happened had robbed me of a lot of things so quickly, in an instant, but I felt like I was starting to slowly regain control again. I now had regular physio sessions, I’d just got a gym program & I had a target weight that I wanted to get down to by the end of the referral – 15st. And I was going to do everything I could to get there. I had also made the decision to eat a lot more healthy, I was only going to eat fresh fruit & vegetables, chicken, fish & cereal (bran flakes for breakfast). I was optimistic about the progress I could make & couldn’t wait to get started properly.

I think it is important to set yourself targets & goals, as long as they are realistic & achievable, as they keep you going, it is something to aim for. And seeing the results physically is really rewarding aswell, seeing that your hard work & determination is paying off spurs you on to keep pushing yourself to do more & more, which is what I done. I will write in more detail in later posts about my progress, as it is something I am really proud of & if I can help anyone else, even in some small way, then writing about my experiences will have been worth it.

Part 18 - Has it really been six weeks already...?

When I was in hospital the first time, on the day I was being discharged, the consultants told me that I would have a six week follow appointment with them in their clinic. Over the previous five weeks, as the time had passed, I still hadn’t received confirmation of my follow up from the hospital. I didn’t know who to contact to find this out – every other appointment I’d had the hospital I had received a letter or phonecall to confirm them. I was worried that, because I had been re-admitted since the first time I was taken into hospital after my stroke, maybe they were using my second discharge date.

I had the number for the stroke ward at North Tees hospital so I tried them first. I knew that they probably couldn’t answer when my appointment was, but I thought that they could maybe point me in the right direction. After speaking to one of the nurses on the ward, she advised calling the main reception & asking to either be put through to Dr Kumar’s secretary or ask for the number to call them myself. I phoned the main reception & spoke to the lady there & explained to her that I’d had a stroke in January & was due a six week follow up appointment with one of the consultants but had not yet received any details of my appointment. I asked if I could be put through to Dr Kumar’s secretary so that I could enquire about it – the receptionist tried putting me through but, as it was after 5pm, she said that there was a chance that she could have already left for the day. As it turned out, she was right. I asked if I could have the number so I could call her directly myself in the morning, & the receptionist read it out for me. I thanked her for her help & made sure that I kept the number somewhere in view so that I wouldn’t forget!

I waited until around 10am the following morning to try calling, just to give her enough time to get into the office & sorted. The first time I tried it just rang & rang – no answer. Not the best start. I left it for half an hour & tried again, this time someone did answer. I asked if I was speaking to Dr Kumar’s secretary & the lady on the other end of the phone said that she used to be ‘when Dr Kumar’s office was in this hospital’. I was confused so asked her where I had rang & she said that she was in Hartlepool...the stroke ward had moved from Hartlepool to North Tees previously & the contact details were still for that hospital! I asked her if she had the new number but she said that unfortunately she didn’t. I called back to the main reception at North Tees & explained what had happened, that the number I had been given wasn’t right & she apologised & tried putting me through again. This time someone did answer...& it was the same lady in Hartlepool that I had just spoken to, the main reception still had the old contact details aswell. This was just my luck!

As my mam worked at North Tees I asked if she might be able to help me get the right number & she said that she would try & find out. She text me later on that night with a number. As soon as I seen it I knew it was wrong, it was the same one that the receptionist had given me. I replied & told her it was wrong so she said she would call onto the stroke ward & see if someone had the number. I said that I’d already tried but she said that she would go anyway. I didn’t hear back off her until the next morning but she sent me another number. When I rang it a lady answered. I asked if it was Dr Kumar’s secretary – yes. Based at North Tees hospital – yes. Finally, after two days of calling the wrong number, I was speaking to the right person! 

I explained everything to her, about my stroke & me being due a follow up appointment but I’d had no confirmation of. She said that she would look into it for me but the system was not responding so she would need to take me details & call me back. It had taken two days to get through to the right person & now the system wasn’t working so I still couldn’t find out – brilliant. But at least it WAS the right person I had been speaking to. True to her word she called back a few hours later. She didn’t know why I hadn’t been told of my appointment but it was arranged for the following Wednesday, the 8th of March with Dr Anwar – I hadn’t met Dr Anwar before. I thanked her for her help & hung up. After getting confirmation of my appointment I felt relieved, but also a little bit nervous. I got confirmation of my appointment on the Friday, so I didn’t have too long to wait.

Over the weekend, & early the following week, I tried to keep my mind occupied so as not to worry or over-think things, but it was hard. This appointment would give me a chance to speak one-on-one with the consultant & get the answers to any questions or concerns that I had – I knew that I needed to make sure that I took that chance. I sat & thought of the things I wanted answers to & made a list of them. Some of them weren’t even full sentences & were just single words – I told myself that I would remember what they meant in the appointment.

On the Wednesday morning, the day of my appointment, I felt really nervous. I had that feeling of butterflies in my stomach; it was the first time that I would have seen anyone from the stroke team since I was discharged from hospital after being re-admitted. I had a lot of things running through my head; I remember feeling a lot of different emotions. I knew that having this appointment was a good thing, but at the same time I knew there was a chance that the consultant might tell me something I didn’t want to hear.

My appointment was at 11:15am so I made sure that I was showered, dressed & ready to leave the house early to make sure I got to the hospital in good time. I left the house & caught an early bus, the number 37 that goes right into the grounds of the hospital. I got to the hospital earlier than I had expected thanks to my eagerness to get there & not be late. On the way to where the consultants hold their clinics, on what used to be the Elderly Care wing of the hospital, there is a little cafe so I stopped there & bought myself a drink. I had left the house having not had breakfast or even anything to drink, & because of how anxious I was, my mouth was really dry. I at one of the tables, slowly drinking my drink & looking at my phone. I checked the list I had made in preparation for my appointment – a couple of the words I had put on the list already didn’t make sense. So much for remembering!

At 11am I started walking the rest of the way down the corridor to where the clinics are held. When I got there the lady on reception asked who I was there to see so I told her Dr Anwar the stroke consultant. She asked to see my letter with appointment details on so I had to tell her that I hadn’t received one & only got confirmation by calling the secretary the previous week. She said that was fine & she looked on the system & found my appointment details. She took me down to a separate waiting area & asked me to take a seat. She was going to pass my notes on & let the doctor know that I was here.

I sat in one of the chairs next to a window – I remember the weather was really nice that day & the heat from the sun through the window was burning my back. As I sat there I started feeling more nervous & more anxious, I think it was a mix of getting answers to my questions & the wait, sat there building up to it. I was sat there for around 20 minutes & one of the nurses came down to let all of us who were waiting know that they were running a little behind but they would call us in as soon as possible. Great, I thought – more time waiting.

After another 15 minutes or so a nurse called me in. She needed to take my blood pressure, pulse rate & weight before I went in with Dr Anwar. The first time she took my blood pressure & pulse they were high – I said that I was quite nervous & anxious about my appointment so that might be why. She agreed & asked me to stand up & wait for a minute before she took them again. The second time she took them they were still a little high, but they had come down a bit from the first readings & she was happy with that. She asked me to have a seat in the waiting area again & Dr Anwar would call me in when he was ready. Another 15 minutes or so passed & then he opened the door to his room & called my name. It was time...

When I walked into his room he asked me to take a seat next to his desk & he asked me how I was feeling, so I told him that I was ok but nervous about the appointment. He told me that there was no need & not to be worried – that helped to put me at ease a bit. He then asked me about my stroke, what I could remember about what happened etc. I told him that I could remember every single detail of the night it happened, it wasn’t something I would forget. It will stay with me forever. He then done some of the usual checks/tests I’d had done dozens of times over the previous six weeks – asking me to pull & push against his hands, asking me to touch the tip of my nose then his finger with my index fingers. That sort of thing. He then asked if I had been left with any residual effects of my stroke, so I told him that I had struggled with dizziness but it was now easing, fatigue, & a loss of movement & strength in my left arm/hand & leg. The weakness wasn’t as bad anymore & Dr Anwar said that he was happy with how I had performed during his tests.

On the computer screen in front of him he brought up a picture of my CT scan, the one I’d had on the night of my stroke when I was rushed into hospital. He pointed out my stroke & where it had happened in my brain. This was the first time that I had seen images of the stroke & it shocked me a bit. It looked a lot bigger than I was expecting it to. When I was sat looking at it, Dr Anwar was explaining more about it but if I am being honest, I didn’t really take it all in. I started feeling quite emotional after seeing it as I didn’t know if an opportunity might come up that would give me a chance so I think I had resigned myself to never seeing it for myself. I’m glad I did though as it really helps the recovery process if you can see for yourself what has happened in your own body. I would highly recommend other stroke survivors seeing theirs if the chance presents itself.

After Dr Anwar had finished explaining he said that he was really happy with my progress, which was a massive relief for me. He then asked me if I had any questions for him. I unlocked my phone & went to my list. I can’t remember exactly how many of them I asked him, but the two main ones for me were 1) what are the chances of this happening again, how likely is recurrence? & 2) will I be able to drive again?

In answer to the first question, he said that it was extremely unlikely that this would ever happen to me again. He said that, obviously, he couldn’t guarantee it, nothing in life is guaranteed, but the risk of recurrence was very low for me. If I kept taking my preventative medication & continued to make sensible lifestyle changes then I would give myself the best chance. When he explained this it was like a huge weight was lifted off me. This was exactly what I had not only wanted to hear, but I had NEEDED to hear.

And in answer to my second question, he said that he could see no reason at all why I couldn’t resume driving again, when I felt ready, but to start with shorter journeys to get back into it. Again, this was a massive deal for me. I had really wanted to get back driving again. Although while I had been unable to drive until after this follow up appointment, I had missed driving, but not as much as I thought I would. I had gotten used to getting the bus again &, on other occasions, using taxis if needed. But now that I had confirmation from Dr Anwar that I could get back behind the wheel again, it gave me back a lot of my freedom & independence. Freedom & independence – two things that my stroke had tried so hard to rob me of, but I felt like I was now back in control. Back in the driving seat!

I left the appointment with Dr Anwar feeling happier than I had in a very long time. Huge weights had been taken off my shoulders, I felt more relaxed than I had since my stroke, I felt calmer, I felt more like I was in control of what was happening now, not letting my stroke dictate to me how I was going to live my life.

As anyone who follows me on social media, or has read my previous blog posts, they will know that those first six weeks post-stroke were a massive struggle for me. It was hard to accept what had happened, & it was even harder trying to adjust to my new limitations. The appointment with Dr Anwar had given me much needed validation, that I was doing well, that I was making good progress.

There was still a long way to go, but this was the day that things changed for me, so much for the better. Over those six weeks I was existing but not living, but I was back in the driving seat now, both literally & figuratively, & I was only looking forward.

Part 17 - When anxiety attacks...

As anyone who has read my previous blog posts will know, ever since I had my stroke in January this year, I have had a daily battle, & struggled with, anxiety & panic attacks. My previous posts have also all been chronological, but I wanted to dedicate a full post to this subject as it is something that I feel doesn’t get addressed anywhere near enough after a stroke, either while in hospital or after discharge. This post will cover just some of the incidents when I have experienced issues with my anxiety & panic between when I first had my stroke in January, until the present day as I write this, four months later in May. I have already touched on some of these in earlier posts, but I wanted to go into a bit more detail as I know that there will be other stroke survivors out there currently struggling with some of the very same things that I have done, & continue to do so, in the hope that it can offer some kind of help. I want people to know that, after such a life changing event happening to you, it is ok to not feel ok. Also, if any family/friends/carers of a stroke survivor read this & recognise something here that they have maybe seen happening with that person in some form, hopefully this can also help them & let them know that there is help out there & it can, & DOES, get better when you seek that help.

Some people can be reluctant to accept help as they see it as some kind of weakness having to reach out to someone, whether that be a family member, a friend or a medical professional. I was the same. It took me a little while, maybe too long, to finally make the appointment with my GP to talk to them about how I was struggling with my post-stroke anxiety & panic attacks, & ask them for help. As you will have read in my previous blog posts, this has been an underlying theme throughout my whole experience since having my stroke, & the mental battle has been just as draining & fatiguing as the physical one.

Prior to having a stroke, I’d had a few sporadic panic attacks over a number of years, nothing major & they went away. I had also, on the odd occasion, suffered with a bit of anxiety. Again, nothing major & these episodes were, thankfully, years apart. My mam has also suffered with anxiety & panic attacks for as long as I can remember, so maybe it something that has always been pre-programmed into me...maybe something that I was always going to battle with, even if I hadn’t had a stroke. I suppose that is something I will now never be able to find out the answer to.

Anxiety can manifest itself in so many different ways, both physically & mentally/psychologically. It was the physical manifestations that I hadn’t been prepared for. During my pre-stroke episodes of anxiety, there were never any physical symptoms, it was always the usual – anxious feelings that become really heightened, especially in stressful situations, feelings of dread for no apparent reason. Anyone who has suffered with anxiety or anxiety attacks will know what I mean. However, since having my stroke, this changed. Aswell as the anxious feelings which, post-stroke, can get really intense, I also started to experience physical symptoms aswell. It has been these physical symptoms that have made me question my own body & mind on multiple occasions – having a stroke does that to you, it makes you question everything that you once thought you understood, things that you maybe wouldn’t have taken too much notice of when you were ‘normal’.

Everyone is different & their anxiety can present itself in different ways, & I can only talk about my own personal experiences, but I am sure that upon reading this there will be something that someone can identify with, maybe something that they too have been struggling with but have not yet been able to reach out to someone & ask for help, maybe by their own choice. My advice would be, after everything I have been through, to talk to someone. It doesn’t have to be a doctor, it can be a trusted family member or friend, that can be the first step to getting the help they need. And I guarantee that, as soon as you open up & move towards getting that help, there is a healing process that begins, a kind of mental healing process. Instead of struggling on with this mental weight, wondering what is happening to you, trying so hard to deal with things on your own, you will start to feel better in yourself. It can’t & won’t change what has happened to you, the stroke will always be a part of your life, that’s just how it is now, but it is up to you to choose how you want to live your life. We will never be the same person we were before, but that’s ok. Every stroke survivor has been given a second chance & we should grab it with both hands & make the most of what we’ve got. Maybe we aren’t going to be as physically able as we were, or there are times when we question what is happening with our bodies, & that’s ok too. One thing that we can, & must, do more to look after is our mental health – too few stroke survivors are given any kind of psychological evaluation while in hospital, it was the same for me. I firmly believe that, if some time in hospital prior to being discharged is spent with a mental health professional, it could massively help to cut re-admissions. This is certainly true for me. If I had been evaluated before I was sent home & then given the relevant aftercare, I believe that the events I have written about previously would not have gotten to the point where I had got myself into such a state mentally & I would not have been re-admitted to hospital eight days after I went home. I know that there are restraints on all departments of the NHS & the mental health professionals are no different, however, I do think that more needs to be done.

I started talking about my physical symptoms of anxiety & panic, & also said that these can present themselves differently in each person. However, for me, these included:-

Tingling sensations in my head, arms & hands – this is the one that really threw me as it started on my right side. My stroke was in the right side of my brain & affected the left side of my body so to be experiencing something on the opposite side was really concerning. It would start on the top & back of my head then move into my hand, wrist & lower arm. This could last anywhere between ten minutes & a few hours. One of the symptoms of a stroke can be a pins & needles tingly feeling, & after having already had a stroke & there being a fear of recurrence, something you usually associate with being a harmless sensation suddenly had a new meaning.

Palpitations & thumping heartbeat – for no reason at all I could be just sat watching TV or even out walking & I would feel my heart start to really beat harder & faster. It wouldn’t last for too long, but the first time it happened I really thought it was the start of a heart attack, which leads me onto...

Tight chest & shortness of breath – sometimes it felt like I had a belt around my chest & someone was slowly tightening it. I would also sometimes, again for no reason, get really short of breath. Out of the blue I would gasp for breath & until I knew what was happening to me, it really scared me.

Feeling of ‘butterflies’ in my stomach – the best way I can think to describe this is that feeling you get when you are really nervous about something & you get that strange feeling in the pit of your stomach. Well this was like that but a hundred times more intense. I would also get a ‘heavy’ feeling in my stomach, especially when I stood up. That is a strange sensation & one that continues to baffle me when it happens.

Tension headaches – this was one of the reasons given by the doctors when I was re-admitted to hospital shortly after I had been discharged after having my stroke. To start with, after coming home from hospital, I was over thinking everything. Every little pain, twinge or muscle spasm I automatically associated it with having another stroke which then lead to, sometimes quite painful, tension headaches. For me, they are unlike any other headache I get as they seem to choose one spot in my head & really target it...usually the back of my head!

There have also been times when I have been doing everyday things & something will just happen for no real reason – I have written about it previously, but when I was sat having dinner with my mam after an appointment at the eye clinic suddenly, while using my cutlery, my right wrist seemed to lock & my hand just didn’t want to work. This really panicked me & made me drop my knife & fork onto the plate in front of me. This was before I had realised what was happening to me was physical manifestations of anxiety & it scared me. My heart started racing & I started shaking uncontrollably. I didn’t know why it had happened &, again, automatically associated it with a symptom of another stroke as I felt weak.

I also remember a few occasions when something similar was happening to me, but in my legs. One time I had been for a doctors appointment &, while walking through the town centre, my right ankle seemed to lock on me & it was like my foot wouldn’t move. It felt like, for a few minutes, my foot was made of lead, it felt really stiff & heavy. I had to get myself to the nearest bench to sit down & breathe as I could feel myself going into a panic attack. Luckily I didn’t. Something similar also happened to me when I was out shopping. As I was walking round the supermarket I felt my leg slowly start to lock on me again. I had to pull my trolley to one side & lean on it for a few minutes until I felt able to start walking again. When I felt ready, my hands were trembling & shaking for a few minutes afterwards.

I knew after countless episodes that I needed to do something as I couldn’t keep going the way I was. It probably took too long to do it, but I did make an appointment with my GP. I remember the day – it was pouring down with rain & I initially couldn’t get an appointment with a doctor as I had tried phoning mid-afternoon (you normally have to call at 8:30am to get a same day emergency appointment). As I couldn’t get in with a doctor, my mam suggested going to the walk-in centre. However, when I got there I filled out the form to be seen by one of the doctors there, the receptionist said that, for anxiety & panic attacks, I would need to see my GP. My mam was with me at the time & I remember her saying how ridiculous it was that I couldn’t get an appointment with a GP & the walk-in couldn’t help me. She rang the doctors without me knowing & tried to get me an appointment, she explained how bad things were & the surgery receptionist again said that there were no appointments. Luckily my mam knew the lady she was speaking to & asked about the possibility of a telephone appointment with a doctor. The receptionist managed to squeeze me in & said that a doctor would call me after 4pm. The walk-in centre is just down the road from the hospital so, just incase the doctor might need to see me in person after speaking to me, me & my mam walked to a cafe inside the hospital to wait for the doctor ringing me...as it was still raining we both got drenched even though it was only a short distance! When the doctor did ring me I explained all about the symptoms I had been experiencing, both physical & psychological & she asked me quite a few questions. She really listened to me & knew immediately that I was suffering with anxiety & suggested starting me on medication to help to relieve the symptoms & keep the anxiety at bay. The medication she suggested for me was Sertraline, which is an S.S.R.I (selective serotonin reuptake inhibitor) type of antidepressant. She explained that it is one that she would recommend to patients suffering with anxiety & panic attacks, so I agreed & she wrote me a prescription to pick up that night from the pharmacy. I was started at 50mg daily which is the lowest dose of this particular medication. At the time of writing this I have been taking this tablet for around 11 weeks & it has really helped me. In that time I have had the dosage increased to 100mg but it proved to be too much, so was taken back down to 50mg daily, but I can take an additional 50mg in the evening if on some days I feel I am struggling. As with any medication of this kind it is a case of trial & error in finding the best option for you. The doctor has said to me that, if at any time I am not happy with how this treatment is working, I can look at other options & trial that. I am also on the waiting list to try C.B.T (cognitive behavioural therapy) with a counsellor. It is not something I would usually consider, but I will go into it with an open mind & give it a try. If it works it can only help, if I decide it is not for me then I won’t have lost anything. I can only gain from it.

There have also been occasions, a lot more recently, when I have suffered some panic attacks. For anyone who has never had one before, it is hard to explain just how debilitating they can be. Before my stroke I’d had a few minor ones, nothing like these. The most severe of them was that bad that it woke me up from my sleep at 4:30am. It was unlike any other I’d had before, there were additional physical symptoms I hadn’t experienced during a panic attack before – my vision was blurred, I felt my whole body go ice cold from the shoulders down, I couldn’t catch my breath, I was shaking uncontrollably. Then, after around 20 minutes, I started to hear a buzzing sound, it was like there was something electrical switched on & buzzing but there wasn’t anything. My legs also felt like they were made from concrete...it took me a little while to be able to walk back to my bedroom & back to bed. When I did get up just after 9am I felt exhausted, the panic attack had completely drained me of all energy, something I didn’t need when already suffering episodes of post-stroke fatigue!

As I have said, the things I write about in this blog are just my own personal experiences, but the longer you leave it to get the help you need, the longer your fear will feed your anxiety. Some of them are irrational fears, but no-one is going to think any less of you – you have been through a life altering event that has made you question everything about yourself. After having a stroke the fear of another is always going to be there, I don’t suppose it will ever leave us & is perfectly understandable, no medical professional is there to judge you, they are there to offer you the help you need.

Please do take the first step & ask for that help...then when it is offered, please take it.

Part 16 - Follow the yellow route...

I had planned on going to the eye casualty at James Cook hospital sometime on Saturday, but because I’d had a late night in A&E the night before, I didn’t get up until nearly lunchtime. And when I looked online to see what time it was open til on a weekend, I seen that it was only open until 12:30pm on a Saturday & Sunday. There was no chance I would be able to make it over in time, I’d have to catch two buses as I still wasn’t allowed to drive, even if I had wanted to. I had then thought about going on the Sunday morning, but after taking into account that I was currently really struggling with post-stroke fatigue, plus the buses not running very often during Sunday service, I doubted that I would be able to get myself up & sorted to go over & make it before 12:30pm. I know that some people might be thinking “surely if the pain was that bad you could have gone over”, but unless they have experienced just how debilitating post-stroke fatigue is, they don’t know how hard it can be to even motivate yourself to do something, nevermind do it. It is hard to explain to someone who has not experienced it.

On the Monday I had a physio session booked in – my first proper session. But I wanted to try & get to the bottom of the pain in my right eye, so I rang Phil, the physiotherapist, & told him that I would, unfortunately, need to cancel our appointment & rearrange. I explained to him the reason & he was really good about it, said that he would look in his diary to see when it could be rescheduled for & would give me a ring to let me know. He also said that he hoped I could get some answers at the hospital, which was nice of him. Not long after I had spoken to Phil, however, my mam text me to say that she had a day off work tomorrow (Tuesday) & she would come to the eye casualty with me. I knew that it would be another day delayed, but going to Middlesbrough would be the furthest I had been since my stroke & I was a bit nervous about going, partly because the last time I was at that particular hospital was many years previously when I’d had some wisdom teeth removed. I text her back & let her know that it was ok & I would go tomorrow.

Tuesday morning my mam text me to say that she was getting the bus over to my house so we could go to Middlesbrough. I got up & went downstairs to take my morning tablets, and then I went back up to have a shower & get ready. My mam arrived & we set off to catch the first of two buses to Middlesbrough. As I sat on the bus, I could feel myself tensing up – even though my mam was with me I could feel myself getting anxious about being on the bus with it being the furthest I’d been post-stroke. As the journey from the bus stop at the top of my road to Middlesbrough bus station went on I settled down a bit, I felt more relaxed. It doesn’t take too long to get there, & within half an hour or so we had arrived. We now needed to get a second bus, from the bus station to James Cook hospital. The previous night I had looked online to see what number bus we needed & which stand we needed to go to – we needed the number 10 from stand 13. We got there & checked the timetable on the wall & seen that we had a nearly 15 minute wait for the next bus so we sat down on one of the benches.

When the bus arrived we got on it & set off to the hospital – neither of us had ever been to James Cook hospital on the bus so we didn’t know where the closest stop was so had to ask the bus driver to let us know. Unlike at North Tees, the bus didn’t go into the hospital grounds so there was a bit of a walk from the bus stop over to the hospital. We had not been this way before so we just followed the signs to find the nearest entrance. As we walked down one of the paths towards the hospital, we walked past the doctor’s accommodation building & through one of the hospital car parks. When we finally got into the hospital grounds we were both a bit lost as we had both only ever gone in through the same entrance which was on the other side of the building. We went into the doors we had arrived at to see if this was where we needed to be. When we got inside there was a big sign that said ‘Oncology’ – this was definitely NOT where we needed to be! The lady on the reception desk pointed us to where we needed to be & we made our way there, it was only a short walk so didn’t take too long.

We walked through the automatic double doors & looked at the signs on the wall with all of the department names on to see which way we needed to go. The department I needed was second on the list. “Eye Outpatients – follow the yellow route”. We started walking down the corridor, following the painted yellow stripe on the wall, & after a few minutes I saw the sign above a door – “Eye Casualty & Outpatients”. We were here.

As we walked in I seen quite a few people already sat in the waiting area, & there were a few other people in the queue to book in. I joined the queue & after a few minutes it was my turn. The lady on the reception asked me if I had an appointment so I explained that I didn’t & one of the nurses at North Tees A&E had advised me to come over. She asked what the problem was so I told her that I’d had a stroke at the end of January & was suffering with a persistent pain in my right eye. She said that I seemed young to have had a stroke, to which I replied that a ,lot of people had also said the same to me since it had happened. She took some of my details & asked me to take a seat in the waiting area. She told me that there was a possibility of having to wait several hours to be seen as I didn’t have an appointment, but she would go & speak to one of the nurses & explain that I’d had a stroke, maybe I could be seen sooner. I thanked her for doing that for me, I didn’t really fancy sitting waiting around for hours.

We went to find a couple of spare seats & sat down to wait. There were people all sat around us with what looked like all different kinds of eye complaints – a couple had eye patches on, some had really red & bloodshot eyes...I wondered if, like me, any of them were also in pain. As we sat there time dragged on. If you have ever been stuck in a waiting area you will know that time just seems to stand still. We had been sat there for just over an hour & a half when my mam said that she was going outside for a cigarette. I said that, if I wasn’t there when she came back in I had probably been called in by one of the doctors. Sure enough, about 10 minutes after my mam left the waiting room, a nurse called me into her room & asked me to take a seat. She asked me about my stroke, & also said that I was very young to have had one, & asked me what the issue was. I explained to her about the pain in my right eye & said that it was more concerning for me as it was my right eye, the side that was unaffected by the stroke. She asked me to cover my left eye & read out as many of the letters on the screen on the opposite side of the room. I managed to get just over halfway down before the writing looked too small for me to read. She then asked me to do the same when covering the opposite eye, again I managed to get to around halfway down. She then turned the light off & flashed a small light into my eyes & asked me to look in different directions while she did. Afterwards she turned the light back on & said she would go & speak to one of the doctors. Shortly after, she came back in & said that I would need to come back for an appointment with one of the doctors. She said that an appointment would be organised for later in the week & someone would give me a call to confirm the day & time. I thanked the nurse, went back into the waiting area, where my mam had now returned to, & let her know what the nurse had said. We then set off again to catch the bus back to the bus station.

It was around 2pm when we got off the bus, & seeing as neither of us had had anything to eat, my mam suggested going somewhere for some dinner. There was a pub just outside of the bus station which I had been to before so we went there. When we got there we found a table & sat down to look at the menu. I wasn’t really that interested in what to get so I just ordered a jacket potato with tuna & salad & a glass of diet coke (I can’t remember what my mam ordered). While eating my dinner something strange happened, something that I was not expecting or had ever happened to me before. I was nearly finished eating but as I tried to use the knife & fork to cut my potato, my right hand just suddenly stopped working, & that’s the best way that I can describe it. It also felt like my wrist had locked. This really panicked me & I had dropped the cutlery down onto the plate & my hands were shaking. My mam asked me what was wrong so I told her that I was unable to use the knife & fork for a minute. She could see that I was shaking & a bit freaked out so she said for us to go into the bus station & catch our bus home. All the way on the journey home I couldn’t stop thinking about what had happened – why had it happened? This was, like the eye pain, on the right side which hadn’t been affected by the stroke. It was all starting to scare me a bit, I didn’t know what was happening to me.

When we got back to my house I sat down on the settee & switched the TV on, I didn’t really watch it, it was just for some background noise. I had what had happened on my mind. As I sat there my phone rang, it was the eye clinic at James Cook hospital – could I make it to an appointment on Thursday at 1:15pm? I immediately said that I would be there. It was a relief to hear off them so soon, I guess having had a stroke it had moved me up the list of priorities. My mam, again, said that she would come with me to my appointment if I wanted her to. On the phone they said not to drive (which I couldn’t anyway) as they would be using eye drops which could blur my vision, so I said for her to come with me if she could.

On the Thursday morning we went for the first bus over to Middlesbrough again. We had planned to get there early, with plenty of time before my appointment, so we had time to get some dinner as we didn’t know either how long we would be waiting or how long the appointment would take. We got to Middlesbrough bus station just before the second bus to James Cook hospital was due to arrive. At least this time we knew where to get off & where to go to find the department. When we got there we followed the yellow route towards the eye casualty. We had planned to stop at the cafe in the hospital on the way to my appointment, but when we got there it was really full & busy – we didn’t want to risk being sat waiting ages to be served & miss my appointment, so we walked further down the corridor to find somewhere else to go. There were no more cafes that we could see & it was getting closer to my appointment time so we called into one of the shops & bought sandwiches, drinks & crisps to eat in the seated area just down from the eye casualty – I had bought a newspaper aswell, so I sat & read that while eating my dinner.

After we had finished we put our rubbish in the bin & walked the short distance back down the corridor to the eye clinic. When we got there I went over to the reception desk, it was the same lady I’d spoken to a couple of days previously & she recognised me. I said that I’d had a phone call confirming my appointment, so she checked the computer system, booked me in & asked me to have a seat & I would be called in when the doctor was ready for me. As I had an appointment this time we had to sit in a different part of the waiting area. One of the receptionists said to a few of us that the doctors were running a little bit late today & apologised if we had to wait longer than we needed to.

I don’t know if it was because I had an appointment with a specific time to be there, but it seemed like I was waiting far longer than the previous time a couple of days earlier. Every minute over my appointment time seemed like ten, it felt like the time was really dragging. Eventually, about 40 minutes after my appointment had been scheduled for, the doctor called me in.

I walked over to her room & she asked me to have a seat. She asked me to explain a bit more about the pain I had been experiencing in my right eye, so I told her about the stroke & that the pain had been there, more or less constantly, since I was discharged from hospital. She asked me more about my stroke &, you guessed it, said that I was young to have had a stroke! I explained to her in more detail what had happened to me & about when I had been admitted to hospital. I said that I had been very lucky, other people are affected much worse than I had been, & she nodded & agreed. She said that it could have resulted far worse than it had.

The doctor wanted to test my vision so handed me what looked like a pair of glasses, only without any arms & they had a handle. One of the eyes was completely covered over & she asked me to read the letters on the screen using the eye that I could see out of. I got to about the same point as I had when the nurse had asked me to do it. Then she moved the cover from one eye to the other & asked me to do the same with my other eye – again, I got to about the same point. The doctor also turned the light off & flashed a small light into my eyes, as the nurse had done. She then explained that she needed to use the machine in her room to look into my eyes to see if she could see anything that might be causing my pain, but before she done that she needed to put some eye drops into my eyes. She said that the eye drops would dilate my pupils to enable her to properly check everything. She also said that, when she put the drops in that it may sting slightly & would blur my vision. She wasn’t joking when she said it would sting! It wasn’t a really bad pain, although initially it did hurt, it was more intensely uncomfortable for a little while. It also didn’t take long for my vision to change. She said that I would need to go back into the waiting area to wait for around 15 minutes for the eye drops to fully work.

I went back out & sat down next to my mam. She asked me what the doctor had said so I explained what she had done & about the eye drops. My eyes were still stinging a bit & I remember asking my mam what my pupils looked like as the drops were to dilate them – she said that they had gone really big.  As I sat there  waiting to be called back in to see the doctor again, I was dying to rub my eyes as they still felt uncomfortable, but I didn’t incase it made them hurt any more. It felt like I was sat there for hours waiting for the call off the doctor, but in reality it was only around 30 minutes (she had got caught up with another patient which overran, making me going back in later than it should have been).

When I was eventually called back in, the doctor explained what she was going to be doing – she was going to check my eyes for any damage or anything stroke related that could be causing my pain. She also said that she would be checking the pressure in my eyes. When she was ready she wheeled the machine around & asked me to place my chin on the rest in front of me & look straight ahead. She turned the light off in her room & sat on the opposite side of the machine to me. She pressed a button & a light came on directly in front of me on the machine. The doctor started with my right eye, she pointed the light into my eye & asked me, every few seconds, to look in different directions – look straight ahead, look right & down, look down, look left & down, look left, look left & up, look  up, look right & up. After this she checked the pressure in my right eye then moved the light to my left eye & repeated the process on that side. When she had finished she turned the light back on in her room & explained that the pressures in my eyes were fine. She also said that she couldn’t see any obvious damage to either eye which would be causing my pain & discomfort. She did say that my eyes seemed rather dry & so could be becoming irritated, so wrote me a prescription for some drops that I could use throughout each day to moisten my eyes if needed. I asked her if she had any idea what could be causing the pain in my eye but she said, after thoroughly checking both eyes, she couldn’t see what it could be. She said that if the pain worsened to come straight back & they could look at doing more tests. I thanked her for all she had done & for fitting my appointment in at such short notice, & I made my way back out into the waiting area where my mam was sitting.

We had missed the bus back to the bus station so I rang a taxi to take us there. When we got to the bus station we walked to the stand we needed to be at to catch the bus that would take us to the top of my road. We didn’t have to wait for long, there are three different buses you can get. While sat on the bus I asked my mam what my eyes looked like, if my pupils were still dilated. She said they still looked massive & could take a while to settle back down to normal. Brilliant...everyone on the bus would probably think I was on drugs or something! And they still felt uncomfortable too.

When we got back to my house I turned the TV on & sat on the settee. I was relieved that the doctor wasn’t able to see any damage to my eyes or anything that was causing the pain, but it still didn’t answer what it was. But that was not the most pressing thing for me to worry about, something far bigger was happening to me...

Part 15 - What is happening to me...

After my first meeting with the physiotherapist I was feeling more positive than I had been. Finally things seemed to be going in the right direction & I could make a start on my rehab, which is what I had really been wanting to do. After the initial period of me not wanting to go anywhere or do anything, I now wanted to try & do a bit more. I knew that I had limitations to what I could physically manage at this point, but that was ok, I had to start somewhere & this felt like it could maybe be the starting point.

Since I was originally discharged from hospital, & also after the second time, I had been suffering with a persistent pain in my right eye. It wasn’t an ache it was a sharp pain, & depending on what I was looking at, or for how long, the pain shifted between barely noticeable, to noticeable, to hurting to constantly hurting. But it hardly ever went away, it was always there. If my time was occupied doing something, it wasn’t too bad as it took my mind off it for a bit, but when I sat or laid down, it came back & I couldn’t get rid of it. I tried painkillers, but paracetamol barely touched it, & that was all I was allowed as I can’t have ibuprofen with the medication I am taking since my stroke. Even though they weren’t a great help, I persevered with the paracetamol as it did take the edge off for a bit & at least made it a bit more manageable, but I wanted something stronger that would ease the pain completely.

On the Thursday my mam came over to see me & asked how the visit from the CST nurses had gone the previous week & how the meeting with the physio had gone. I told her that the nurses had done their assessment, done the usual tests & checks, & asked me to fill out a questionnaire on how I had been feeling. I also told her that the meeting with the physio had gone well & that he was going to put together an exercise & movement plan for me & that I had arranged another appointment for the following Monday & was looking forward to getting started. I also told her about the pain I had been experiencing in my eye. I told her that, although it was painful, it wasn’t affecting my vision & could still see out of it properly. She said she thought that it could possibly be a side effect of the medications I was on, or that it may be an infection, & to try & make an appointment at the doctors. To get an appointment with a GP for the same day, you have to ring them at 8:30am &, as it was now after lunchtime there was no chance I would get in. I told her that I would give them a try in the morning. After she left to catch her bus to work, I sat & watched the TV for a while before making something to eat. As well as getting started with my physiotherapy & walking more often, I had made the decision to eat more healthy too as one of the things that I had been advised while in hospital was to try & get my weight down a bit. After I had finished my tea I done my usual of closing all of my blinds & making sure everything was switched off before heading upstairs to watch the TV in bed until I, eventually, fell asleep. This time I set an alarm to wake me up just before 8:30am so that I could attempt to get an appointment at the doctors.

At 8:15am on the Friday morning my alarm went off & I made my way downstairs to take my morning tablets. I left it until just after 8:30am to try calling the doctors surgery to make sure the receptionists were there. As usual with my doctors, it takes multiple attempts to get through to someone. And usually some of those attempts end with you getting cut off after the message of “we are currently experiencing a high number of calls, please try again later” being played down the phone. It is as infuriating as it is annoying! After trying & trying again, finally I got through not long after 9:00am. I explained to the receptionist what the problem was but she told me that there were no appointments available for that day. I said that I had been trying to get through since 8:30am when they advise to call, but she apologised & said that, unfortunately, there were no appointments with any of the doctors. I asked if there was any possibility of a telephone appointment so that I could explain to a doctor about the pain in my eye. Again, she said that there were no appointments available at all & advised me to try calling again on Monday morning or come down to the surgery at 8:30am on Monday morning & try & make an appointment there & then. I was disappointed, but I knew that if there were no appointments she couldn’t just magic me one up out of thin air so I said that I would try again then.

Later in the day my mam called round again. I told her about not being able to get an appointment at the doctors so she said why don’t I try going to the walk-in centre to try & see one of the doctors there. I asked what time it was open until as it was now nearly 4:00pm – it is open until 7:00pm she told me. I said that I wasn’t sure as I wasn’t feeling too well & had started getting a strange feeling in my head & arm. As she was going to catch her bus to work at the hospital, the walk-in centre is a five minute walk away from there, why don’t I get the bus with her & walk down from the hospital. I said ok & went upstairs to get changed – as I hadn’t been out anywhere I was just lazing around in my pyjamas (not great I know, but in my defence I hadn’t been feeling well all day). When I’d been washed & changed we went to get the bus – it is a 15-20 minute bus ride away depending on traffic, & luckily the bus stop is in the hospital grounds. I didn’t know where to go as I hadn’t been to the walk-in centre before so my mam directed me & asked me to let her know how I got on after I’d been seen.

I made my way to the walk-in centre which was, thankfully, easy to find (the big sign on the front of the building saying ‘Walk-In Health Centre was also a giveaway). As I walked in the reception desk was on the left & the waiting area was straight ahead. I walked over to the receptionist & asked if I would be able to see one of the doctors, & she said that I would need to fill out a form first – name, address, DOB, usual doctor’s surgery, why I was there etc. I took the form & sat down in one of the seats in the waiting area & filled out all of the details while resting on one of the clipboards. After I was done I checked everything was correct before taking it back to the receptionist who asked me to take a seat & a doctor would call me when they were ready for me. As I sat back down I looked around & counted eight other people also there waiting to see a doctor. It was shortly before 5:00pm when I sat back down, & I was hoping that I wouldn’t be sat there for too long. I was restlessly sat in the waiting area for around an hour before one of the doctors came out to call me into his room.

When we got there he asked me to take a seat & asked me what the problems was & why I had come to the walk-in centre that afternoon. I explained to him that I’d had a stroke on 21st January, four weeks earlier. I told him that I had been experiencing a constant pain in my right eye ever since originally being discharged from the hospital & it hadn’t really gone away. He asked me what medications I was taking so I told him Clopidogrel, Ramipril & Atorvastatin. He made some hand-written notes on a writing pad on his desk, and then asked if I had any residual effects from the stroke, so I said about the left sided weakness & dizziness. He got out a little flashlight & shined it into both eyes & checked that they were responsive, which they were. He then asked to check my blood pressure as a precaution – when he checked it he said it was quite high so he would leave it a few minutes before taking another reading. This was quite worrying – I was already not feeling well & had that strange feeling in my head & arm, so him telling me that my BP was high only added to how anxious I was feeling. After a few minutes he checked my BP again – it was still higher than he would like it to be. Again it worried me as I was already on medication to help lower my blood pressure, why was it so high? I would have expected it to be raised slightly being at the walk-in centre & having the pain in my eye, but he said it was considerably higher than where it should have been. He said that he couldn’t find anything obvious causing the pain in my eye & to continue taking the paracetamol & try & make an appointment with my GP on Monday. I also mentioned to him about the strange feeling that I had started getting in my head & arm – I explained that it was a kind of a tingling feeling, not quite pins & needles, more the feeling you get just after pins & needles subsides. I pointed out to him exactly where I was feeling it – it was on the left side of my head &, predominantly, in my left arm although it was also sometimes present in my right arm too. He looked a bit concerned – he said that, after what had happened to me having a stroke so recently, if I was experiencing a tingly pins & needles feeling to not wait around & to either call 999 or make my way to A&E if I could. He said that he didn’t think that I was having another stroke but if these feelings persisted or got worse to get them immediately checked out – don’t be afraid to call them. I thanked him for the appointment & made my way out of his room & out of the doors of the walk-in centre.

I walked back to the bus stop in the grounds of the hospital, right near the main entrance, & checked the times the bus I needed was due – as it was now after a certain time, the buses stopped running as often so it was now every hour & the next one was 40 minutes away. I couldn’t sit there for 40 minutes; I was already feeling unwell & had that feeling in my head & arms. I went inside the hospital & called a taxi, which arrived after about 10 minutes. All the way home in the taxi, the words of the doctor from the walk-in centre were ringing in my ears – don’t hesitate to call someone if this feeling persists or gets worse. The taxi only took 10 minutes to get me home, & by now it was dark. I turned the lamp on in my living room, switched the TV on & went round & closed the blinds. As I came back downstairs & walked into the kitchen my chest started to feel tight, & I was getting short of breath. The tingling feeling was there in my head & left arm & it really intensified. My legs felt like lead, like they were stuck to the floor, & I was now struggling to catch my breath & felt more dizzy than I had been. I remember kind of stumbling my way back into the living room & sitting down on the settee & trying to catch my breath but it seemed to be getting worse, as was the feeling in my head & arm.

By now I was in a bit of a state, with all sorts of things going around in my head, especially the words of the doctor from my earlier appointment. I didn’t want to leave anything to chance, not after what had happened to me only four weeks prior, so I picked up my phone & dialled 999. A lady answered after I’d been put through & she asked me what the problem was, so I explained all of my symptoms. I also explained that, four weeks earlier, I’d had a stroke. She asked me a few other questions & took my address details & said that she would despatch a vehicle. I asked if she would stay on the line with me, as I had done with the lady who answered on the night I had my stroke – might seem strange but I felt a bit safer with someone on the other end of the line should something happen to me. After around 10 minutes there was a knock at the door – it was the paramedics, so the lady on the phone said that she would leave me with them. I’d left the door unlocked so shouted for them to come in. I was sat in the living room, in exactly the same place that I had been on the night of my stroke. An male & a female paramedic made their way in & asked me what had been happening, so I explained it to them what had been happening for the last few days & also about the stroke four weeks ago. They done the usual F.A.S.T test on me, but there was nothing obvious, except for the left sided weakness which was already there, but somehow felt worse. They also checked my blood sugar (which was fine), my blood pressure (which was still really raised, mostly I’d assume due to what was going on), & they done an ECG (which was also fine). After 10 minutes the male paramedic said that he wouldn’t be happy leaving me at home & wanted to take me in to get checked over at the A&E department at North Tees Hospital. While he was getting their things together, the female paramedic made notes on the little computer they had brought in. I asked if I needed to bring anything with me & they said to just bring my phone, charger & keys – if I needed anything else later, arrangements could be made. I put my trainers on, made sure I had my phone & charger, turned everything off & made my way out to the ambulance with the paramedics, remembering to lock the door behind me.

As we made our way to the hospital, the male paramedic, who was driving, radioed someone to say that they were bringing me in. With the time of night it was, it only took 15 minutes to get from my house to the A&E department. When we pulled up, one of them went to get a wheelchair for me & I was wheeled in to the A&E department, straight through to the treatment rooms, not via the front entrance I had previously been to. When we got there the paramedics done their handover with the doctors. Afterwards a nurse came in & said that she would need to place a canula in my arm – it took her a couple of attempts as the needle came out of my arm the first time (the bruise that came out over the coming days from that was incredible!). After she got the canula in she said that she needed to speak to a doctor to find out which blood tests they wanted to run. After a few minutes she came back & filled two of those little jars with my blood. Shortly after, a doctor came in to do an examination – he asked me what had brought me in, what had made me call 999, so I explained to him about all of the symptoms I’d had, & about my stroke. He done some of the usual tests I’d had done so often recently – he tested my reflexes, my grip, my resistance when pushing/pulling against his hands with my arms & legs. I also explained about the pain in my eye & the tingling feeling I’d been getting. He got his little flashlight out, turned the light off in the treatment room & checked my eyes over. He, like the doctor at the walk-in, said that he couldn’t see anything obvious which would be causing my pain. He said that he needed to go & speak to someone on one of the wards & would be back shortly.

In the meantime, I was sat on my own in the treatment room, watching all of the doctors & nurses dashing back & forth past my door – A&E must have been busy that night. I got my phone out & tried to call my mam to let her know that I had been brought into A&E. There are certain parts of the hospital where you struggle to get a phone signal, & this place was one of them! I tried holding my phone higher up, lower down, shuffling down the bed so I was closer to the door – nothing, still no signal. The doctor came back into the room & said that he had spoken to the stroke ward & they had agreed to admit me, but I needed to wait until the results of my bloods were back before moving. I had managed to get a bit of a signal so I rang my mam & let her know what had been happening & that I was possibly being admitted again but I would have to let her know for certain & if I would need anything bringing in.

While I was waiting for the results of the blood tests, one of the senior nurses came down to A&E from the stroke ward. She came into my room, closed the door & sat down on the end of the bed. She said that she had spoken to Dr Kumar on the phone & explained my symptoms to him, but he didn’t think that it was anything stroke related. She said, because of that, they wouldn’t be admitting me & wouldn’t be doing another CT scan – I’d already had three over the last few weeks, along with all of the multiple others scans, X-rays & ultrasounds while in hospital. They didn’t want to expose me to any unnecessary radiation, which was fair enough. She said that, as I wasn’t going to be admitted this time, she could take the canula out of my arm for me which was a relief as it was painful from the nurse taking a couple of attempts to get it in. After she had removed the canula, she sat back down on the bed & said that she couldn’t know how I was feeling after having a stroke, but working on the stroke ward for as long as she has, she understood that I would now interpret any pain or anything new as something happening to me again. She said that it was only natural & no-one would blame me or belittle me for that. I remembered her from the second time I had been admitted to hospital, I hadn’t personally been dealt with by her but I remembered her from the ward. That night in A&E she was really lovely to me, she did make me feel a bit better about what had happened. She said that I would be free to go home after the results of the bloods were back for the A&E doctor. Before she left she said that, in future, if anything else happens, or I didn’t feel right, to come back again. And if it was shown not to be stroke related again they would reassure me. She said that over time it DOES get easier. She advised me to go to James Cook Hospital in Middlesbrough, to the eye casualty, to see if they could get to the bottom of my eye pain. Not long after she left the A&E doctor came back in & said that the results of the blood tests had all come back fine so I was free to go.

I walked out of the A&E department, out of the front doors & made my way to the main entrance of the hospital so I could phone a taxi to take me home. I sat in one of the chairs in the reception area, I remember there was no-one else there, and I was on my own. I called a taxi & sat waiting for it to arrive. I sat there thinking that I had wasted everyone’s time, everyone from the lady who answered my 999 call, to the paramedics, the doctors, and the nurse from the ward. Everyone who had dealt with & treated me that night. There was a sense of guilt there as nothing had come of it; there was nothing ‘wrong’. But even though that sense of feeling guilty for wasting people’s time was there, I wouldn’t hesitate to call 999 again if I felt that something wasn’t right. Having a stroke, especially so young, is a life changing event. It changes how you think about things. It changes the way you react to anything you deem ‘wrong’ with your body. I certainly wouldn’t take any chances with my health in future – after what has happened to me, I know that I have been lucky, but if I leave it to chance later on, I might not be so lucky again.

And as I sat there thinking, the taxi arrived. It was time to go home...

Part 14 - And where have you been...?!

Friday 10th February 2017. A day short of three weeks after my stroke was the first contact I’d had from my community stroke team (CST). I was told before being discharged from hospital after originally being admitted after suffering the stroke that someone from the CST would be in touch with me after a few days of being back at home. Nothing. When I was being discharged from hospital after being re-admitted 11 days after my stroke I was asked by one of the doctors if I had heard from the CST prior to being re-admitted, to which I explained to him that I hadn’t heard anything at all, nor had I been given any contact information off anyone for me to chase it up (which it shouldn’t have fallen to me to do should I have). He seemed puzzled by this & said that he would chase it up for me as I should have at least had a phone call from someone within the CST, even if they hadn’t been out to visit me yet. I said that I would appreciate him doing that as I just wanted to know what the next steps for me were outside of hospital, now that I was going back home.

I don’t want anyone reading this to think that I am singling out the CST, or being negative about them, I am only highlighting my personal experiences, because this is just a small part of a much bigger issue. I also don’t want people reading this to think that I am in any way bashing the NHS, because that isn’t true. I already had a huge love & respect for the healthcare system in this country prior to my stroke, it is one of the greatest institutions in the world, & I massively admire every single person working within the NHS. Even more since my stroke, especially while in hospital as the care I received during the two times I was admitted was amazing. But there is a huge issue currently facing the thousands of patients leaving hospital & going back home, & it is that the aftercare doesn’t always meet the same standard at the care you receive while in hospital. I waited three weeks before any contact was made with me from anyone outside of the hospital, some people wait longer, some are luckier & will have contact sooner, but I can only write about my own experiences. I was lucky that I had family & friends around me when I went back home, but many others are not so lucky. How do those, often vulnerable, patients cope? If they don’t have that kind of support network around them, who do they turn to? I have since read, numerous times, about this issue after having my stroke & the same words are used – ‘abandoned’, ‘alone’, ‘frustrated’, the list goes on. I had people around me, but I too felt abandoned, alone & frustrated by the aftercare system. I had my stroke at 33 years old, it was a massive shock &, after leaving hospital, without the medical staff around me when I needed to ask something, I felt lost. If I had a question that needed answering, I didn’t know where, or who, to turn to.

I received a phone call on the Friday morning from a lady, I don’t remember what her name was, but she introduced herself & told me that she was from my CST. She asked me how I had been since my stroke, & asked me about the reasons why I had been re-admitted to hospital the previous week. I explained to her about why I had ended up back in hospital, & said that I had, generally, been ok but there were some things that I was finding more difficult to cope with – fatigue, eye strain, the weakness & loss of some movement in my left arm & leg. She asked if I was free that afternoon as she would like to arrange a home assessment visit to see how I was getting on & to talk through the next steps of how they could help with my recovery. I said that I was, & a visit was organised for that afternoon.

Before the appointment time I had a quick tidy round, & at 2pm two nurses pulled up outside & came to the house. They introduced themselves & we went into the living room so that they could do their assessment. They explained that they had come out to see how I was & to check what my needs were from their team to help with my recovery. One of the nurses checked my blood pressure & pulse rate, while the other got out the paperwork that they needed to fill in. They asked me a few questions about how I had been managing with things around the house - washing, making meals, cleaning etc, so I told them that I had managed to do those things. They then asked me about the after effects of my stroke, so I explained to them about the weakness/movement, fatigue & dizziness. I knew that they wouldn’t be able to do anything about the fatigue or dizziness, unfortunately these were just things that I would have to give time to improve, but the weakness & movement was something that I was hoping they would be able to help with. One of the nurses then done the same tests the doctors had done while I was in hospital – she asked me to grip her fingers with both hands, got me to push & pull against her with my hands & feet, & asked me to pull & push her hands with my legs. These were so that she could check how bad the weakness was on my left side compared to my right, & it was noticeable. She made some notes & said that I would benefit from having weekly physiotherapy sessions at home with the physiotherapist from their team. She asked if that was ok, & I said that I would like to start with the physio as soon as possible, more to help with the movement. She made a few more notes & then got some paperwork out of her bag.

She asked me how I had been feeling ‘in myself’ since my stroke, how well had I been coping with things mentally & emotionally. I told her that it had obviously come as a massive shock, especially being so young. I said that, mentally, I had been coping ok. Not great, but I was alright. She then passed me a multiple choice question sheet & asked me to fill it in; it is designed to indicate your levels of depression & anxiety based on your answers. She told me not to think about each question for too long, as they were looking for the answers you are immediately drawn to – there was only around twenty or so questions so it didn’t take too long. After I’d handed her the sheet back, the second nurse asked me about my medications & if I was managing ok with them, & remembering to take them, which I was. When I had been re-admitted to hospital the previous week I had been prescribed a new tablet to help control my blood pressure & she asked how I had been finding it as some people struggle with the side effects initially, & I said that I was suffering from dizziness, but I already had been so it wasn’t as bad as it might have been otherwise. With that it was the end of the visit & one of the nurses said that there was an appointment for the physiotherapist to come out to see me on Tuesday of the following week if I could make it. I agreed & made a note of the date & time in my phone so that I wouldn’t end up forgetting & either go out somewhere or plan to do something else. Just as they were leaving they gave me a leaflet with their contact details & more information on. Finally, I had at least now got some names, telephone numbers & email addresses should I need to get in touch with someone! The nurses said that if I had any problems, or any questions, to contact them & they would do what they could to help. They also said that they would be speaking with the physiotherapist & let him know about the left sided weakness & issues with the movement.

Before the physio appointment I felt nervous as I hadn’t had it before & didn’t know what to expect – what if I couldn’t do what he was asking me to? It was just after lunchtime when the physiotherapist arrived & introduced himself, his name was Phil. We went into the living room where he asked me some questions. He also said that he had spoken to the nurses who had visited me & they had explained about the issues I had with the weakness & movement. He said that, before he put a plan together of which exercises he would recommend, he needed to do some checks of the movement in my left arm, hand & leg. Afterwards he said he now had a good idea of what I could physically do & he would put together a plan of exercises & movements for me that would start to help build up the strength in my core muscles & get me moving my left hand, arm & leg in specific ways to help with getting as much of the movement back as possible. He said that he had a free appointment the following Monday to start with the exercise plan he would be putting together for me if that was ok with me, so I told him it was & made another note of it in my phone so I didn’t forget. Before he left he asked me if I had any questions for him but I didn’t, so I showed him out & said that I would see him next week.

After more than three weeks post stroke, I felt like things were finally starting to get moving. But just as you feel that you have started to make some progress, there’s always something else to knock you back down again...

Part 13 - If it's not one thing it's another...

Around the same time I had my stroke I was also dealing with a couple of other things. One of them was my parents separating, which happened a few weeks prior & came as a massive shock as it was not something I ever thought would happen. The other was that I had been for several appointments at the doctors after experiencing chest pains & shortness of breath in November & December, I had also noticed that the veins on the left side of my chest had become quite prominent, as had some veins in my left arm & calf which were worrying me. After seeing two different GP’s, neither could answer what was wrong so I was referred to the Lung Health department at North Tees.

I arrived at the hospital shortly before my appointment time of 9am so I could find my way as I had never been to this particular department, even during the two times I had been admitted recently. I came in through the main entrance & asked the receptionist which way I needed to go & she pointed me in the right direction & told me to follow the signs for Respiratory & Lung Health, which I did. I was still walking with a limp as my left leg still didn’t quite move properly so it took a bit longer to get there than it would have usually, but I still got there early. When I got there I went to the reception desk & gave them the letter I had received with the appointment details & they asked me to take a seat in the waiting area. Shortly after a nurse called me & took me to one of the treatment rooms as before I could see the doctor she needed to measure my weight & height. She asked me to take my trainers off so that she could get a more accurate reading, but as my left arm & hand were still weaker it took a bit of time to unlace & remove them. I remember she asked if I’d had an accident as I was limping when I walked so I told her about having a stroke & said that I’d brought my discharge summary papers with me incase the doctor needed to see them. She, like so many others who I had spoke to at the hospital, was shocked that I’d had a stroke so young. After having my weight & height done she explained that, because of my stroke, I would not be able to do the tests that had been planned for this appointment. She said that I could put my trainers back on & she would take me to a second waiting area where the doctor would come & get me from, & she would let the doctor know about my stroke & that I wasn’t able to do the tests they had wanted me to do.

I was only sat in the waiting area for around 10 minutes before Dr Willis came round to take me to his room. When we got there he asked me about my stroke & how I was feeling now. I told him that it had all been a huge shock, especially being so young, & that I was feeling ok but had been struggling with post-stroke fatigue & dizziness. Then he asked me about the symptoms I had been experiencing throughout November & December which led me to being referred to him, so I told him about the pains in my chest & explained about the veins on my left side that had suddenly become more prominent, especially across my chest. He done a quick examination of me & listened to my chest & back through his stethoscope. Afterwards he asked me to lie down on the bed & remove my t-shirt so that he could have a look at the veins that had been worrying me. He had a good look at them & also checked to see if I had any swelling anywhere around them that may have been causing it, but there was none. After his examinations I put my t-shirt back on & sat back in the chair next to his desk. He explained that he couldn’t see anything obvious but, because of my stroke, he wanted to make sure that it wasn’t linked in any way, which I had also worried about. He was going to arrange an urgent CT scan of my chest & abdomen & that I would have to come back for it as it wouldn’t be that day.

After the appointment I called at Tesco, which isn’t far from the hospital, to get a few things before going back home. When I got home & sat down I started thinking about what Dr Willis had said about a possible link between the symptoms I’d had previously & my stroke. I had thought there may be a connection & now with someone else saying it, a respiratory doctor, I started worrying that there was something else underlying. I hadn’t had any chest pains immediately before my stroke & hadn’t had any afterwards, but the veins were still there. When you’ve had something as serious as a stroke happen to you, your natural reaction to anything wrong with your body, whether that is a headache, a pain somewhere or, in my case, prominent veins, is to think the worst. And that’s exactly what I was doing, thinking that something else was going to happen & worrying about it. Thankfully the scan appointment came through very quickly so I had less time to think about it.

The appointment for the scan was on a late Monday afternoon at 5pm, & I wasn’t to have anything to eat an hour beforehand & could only drink water during that time. When I got to the hospital I had to go to the X-ray department. After everything that had happened & during the two times I was in hospital, that place felt like my second home & here I was again, back for yet another scan! When I got there I was asked to have a seat in the waiting area before someone came to call me. I was taken around to a small room that joined onto the room where the scanner was. One of the men who would be doing the scan brought me a gown & asked me to change into it &, when I was ready, to make my way into the scanning room. Because of my left sided weakness it took me a little longer, but when I had changed I left my things behind the curtain & walked into the next room.

When I got in there the same man explained a bit about the scan & that I would need to be injected with a dye so that the veins & arteries would show up better. He asked me to have a seat on the bed of the scanner so that he could put a canula in my right arm. When that was done he asked me to lay on the bed as they would be doing one scan before the dye was injected, then he went into the other room where he would be operating the scanner. When I was laid there on the bed as it was being lifted & moved into the scanner, I suddenly started feeling really panicky. I started getting that butterflies feeling in my stomach, & I kept getting these waves of really intense panic which kept really taking my breath away. It was a struggle to lie still while they done the first scan & I didn’t want them to have to redo it.

After the first scan the man came back over & told me that he would now be injecting the dye for the second scan. He explained that, when the dye is injected, some people experience some strange sensations. Some, he said, say it feels itchy, while others said it felt hot but he told me that it was painless & if I had any of those they would wear off after a little while. When he injected me with the dye I started to feel what he had explained, I felt a heat in the backs of my legs & in my feet, it was the weirdest feeling! The man went back to the room to operate the scanner again & the bed lifted & moved me in for the second scan. When it did those anxious, panicky feelings came back in waves again. After all of the scans & X-rays I’d had recently you’d think I would be fine, but for some reason, during these scans, this was happening. I couldn’t understand why. I wasn’t bothered by the scan itself, so why was I feeling like this?

When the second scan was over, the bed moved out of the scanner & lowered down again. I remember when I sat up I felt really dizzy, & the panicky feeling was still there. The man came over to let me know it was all over & that I could get changed again. I told him that I felt dizzy & he said not to rush & just go back through when I was ready. I sat there for a couple of minutes before making my way back to the other room where my things were & I got changed back into my clothes & put my trainers back on. One of the doctors said that, if all was well with the scans I wouldn’t need to be seen again, but I would receive a letter through the post in the next few weeks informing me. As I walked back down the corridors of the hospital back to the main entrance, I felt really tired so sat down on one of the seats. My mam was working & had text me asking how the scan went so I let her know. I said I was still in the hospital so she came & met me & we sat on the seats for a little while as I told her I felt tired. Afterwards, I walked the rest of the way back to the main entrance & rang a taxi to take me back home. It arrived after a few minutes & it didn’t take long until I was back at home. It was now just after 7pm & I was due to take my last tablet of the day, & after I’d had that I quickly had something to eat & I went upstairs to watch TV in bed. I was still going up to bed really early as I didn’t want to be sat downstairs. I was worried that the scans would find something wrong, & that there could possibly be something linked to my stroke & it just made me feel more anxious about everything.

I know that this isn’t a post directly about my stroke, but I want to include everything, the good & the bad. It is part of my journey & I want to try & cover everything that has happened & has, in one way or another, been associated with my stroke.

Part 12 - Goodbye to the stroke ward, again...

It was strange being back on the stroke ward at North Tees so soon after being discharged, & it was also quite scary as I didn’t know what was happening to me. I had all kinds of things going through my mind &, as much as you try not to, you always think the worst. But being back in hospital, with the doctors & nurses around me, I felt safe again. Because I had left my house in such a hurry with the paramedic to get to hospital, I couldn’t remember if I’d locked my door so I had to text my dad to ask if he would go over & check for me, & also close the blinds. When I had arrived onto the ward & got sorted on my bed I had let my mam & dad know that I had been taken back in again, so they already knew I was there.

As I laid on my bed, half watching the TV & half staring out of the window, the man in the bed next to me, I can’t remember what his name was, came over. He said something to me which I found strange at first, he said “I would like to come & talk to you but I can’t”. I found it strange because he seemed alright & managed to speak to me ok just then, so I didn’t understand why he couldn’t. It wasn’t until one of the nurses explained that, because of his stroke, he had lost some of his ability to hold a conversation & couldn’t remember certain words & phrases. I had only had a stroke myself 11 days earlier, it was all still new to me & I hadn’t realised at the time just how many ways it can affect people, it is not just physical, it can also leave you with disabilities that no-one can see, it can rob you of the most basic human abilities in a second.

A little later my mam came to see me. She works at the hospital &, during her break, she came up to the ward. She asked me what had happened & why I had been brought back in. I explained to her that I hadn’t been feeling well for the previous few days, I’d had headaches & felt anxious, & also felt weak on my left side again. The first thing she said was that I had done too much & been trying to do too much too soon instead of taking it easier & resting after just coming home. I knew she was right, but I didn’t want to just sit around anymore, I wanted to try & get back to ‘normal’, whatever that would now be. She stayed with me for a while but had to go back to work & said she would be back tomorrow.

I laid there on my bed for the rest of the night, mostly looking out of the window at what was going on outside. Out of my window I could partly see the shops opposite the hospital, & partly see the ambulance bays outside of the A&E department. As it got later & I got more tired, I turned the TV off & tried to go to sleep. It was difficult though, I remember it being stifling hot on the ward, much warmer than it had been the week before when I was there, & it made it really hard to sleep. Eventually, after much tossing & turning, I must have drifted off.

When I woke up the following morning, the night staff were doing their handover to the day staff at the main desk. I had a really good view of the main desk from this bed, whereas the previous time I was on the ward, I was either in a room of my own or, when I was moved, down the opposite end of the ward. As I watched them doing their handover, I was looking to see if I recognised any of the staff, but it was only the few from the day before. Where had all of the staff that looked after me last week gone? It was like a different place!

As usual, I had ordered toast & marmalade for my breakfast. After eating this, the nurse who had brought me onto the ward yesterday came over with a bowl of water & a little pack that contained a flannel, toothbrush, toothpaste & a towel. She asked me if I could manage to get myself washed, which I told her I could & she said that if I needed anything to let her know. I left it a few minutes, and then I got up & pulled the curtains around my bed while I got myself cleaned & brushed my teeth. I did feel better for it, but I would have also liked to have changed my pyjamas but didn’t have a spare set with me. After getting sorted I opened the curtains around my bed & put the TV back on & lay back on the bed. After an hour or so, one of the doctors came over to let me know that Dr Kumar, one of the stroke consultants who had treated me the week before, would be coming round shortly & would be coming over to speak to me. I felt a bit nervous as I knew it must have something to do with the results of my scan from yesterday. I wanted to know what was happening, but there was also a part of me that didn’t, just incase it was something bad.

Not long after, Dr Kumar came over with one of the female doctors. She hadn’t been working the week before when I was on the ward so I didn’t recognise her. He pulled the curtain around & sat on the end of my bed, while the doctor stood up using my table to rest on while she made notes. Dr Kumar explained that he had seen the scan & read the results. He said that there was no new stroke & no extension of the original stroke either. I was a bit confused by this – if it wasn’t a stroke, what had caused this? He asked if I had been feeling tense & anxious in the days leading up to being re-admitted to hospital. I explained everything to him & how I had been feeling & the symptoms I’d had before calling the NHS 111 number the days before. He explained that it was definitely not a stroke this time & everything pointed to a combination of tension & anxiety. One thing he did pick up on, though, was that my blood pressure had been quite high on some of the occasions the readings had been taken while I was in overnight. He said that he would be prescribing me with medication to help lower & stabilise my blood pressure – Ramipril 2.5mg. So this was three different medications I was now on. After he had gone through everything with me, he then asked me to try & not worry so much as the likelihood of something happening to me again was small. That did help slightly, but unless it has happened to you personally, it is easier to say that to someone who has gone through something so traumatic, & as much training & experience as someone may have, they don’t understand exactly what it feels like & what that fear is like, how could they? That’s not to say they are not great at their job, they just don’t understand fully how it feels. Dr Kumar also said that, if the physios were happy with me after assessing me later, he would have no issues discharging me that day.

A little while later, just before lunchtime, the physios came over to check on me. It was one of the same physios as I’d seen the week before, & she had someone new with her that had just joined them. She asked me how I was & what had happened to bring me back into hospital, so I explained everything to her. She then asked me if I was ok to attempt to walk across the ward with them & try to walk up & down the stairs, as we had done the week before. I got up off my bed, put my trainers on & started walking across the ward. My left leg did still feel weaker, but not like it had the previous week, I managed to walk over to the main desk & back to my bed. After that the physio asked if I would be ok to walk to the staircase. I knew it wasn’t too far so said I would be fine. When we got there they asked me to try & walk down the stairs, with one of them in front of me & one of them behind me. I managed to get down without any issues, just very slowly, & it was the same coming back up. Afterwards we walked back to the ward & back to my bed. The physio who had been there last week said that she would be speaking to the doctors later that day but she was happy enough with how I was to send me home if the doctors agreed.

After lunchtime it was visiting time, & my mam had come back over to see me. I let her know what Dr Kumar had said that morning & that it was very likely I would be going home that afternoon. She had brought me a newspaper again so, while she drank the cup of coffee that one of the nurses had made for her, I read the paper. Not long after that, one of the nurses came over to let me know that I would be getting discharged as soon as my discharge papers had been done. I felt a bit anxious & uneasy about going home again, but nothing like I had the week before. Because it hadn’t been a stroke this time, the thought of leaving hospital wasn’t as bad. The fear of something else happening was still there, just because it hadn’t been a stroke THIS time, didn’t mean there couldn’t be another time when it would be.

Later in the afternoon, around 2pm, the nurse came back over with my discharge papers & filled out the parts that he had to & asked me to fill out one of their questionnaires, as I had done the last time I was on the ward. After he finished he asked me to sign & date them. He then gave me a copy of them & let me know that I would be free to go home after the pharmacist had been over to check my medications. No sooner had the nurse left, the pharmacist came over, got my existing tablets out of the little locker next to my bed to check them & explained to me a bit about the new medication I had been prescribed for my high blood pressure. She asked if I had any questions & I said no, not for her, but before I went home would it be possible to ask one of the doctors a quick question. She said that wouldn’t be a problem & went over to find one to come & see me. When he arrived I asked him about the dizziness I had been experiencing as it had really been affecting me. I asked him how long I would have the dizziness & he told me that it should settle down a bit after another 6 weeks or so, but I may still experience dizziness on & off. It was a relief to hear that it would die down after a while, it was something that I did find hard to adjust to initially, it kept disorienting me & making me feel more anxious when it was at his worst, so to know it wouldn’t always be like this was good.

After I had finished with the doctor I gathered my things together, said goodbye to the doctors & nurses at the main desk, & me & my mam made our way off the ward & to the main entrance to the hospital. When we got there my mam rang a taxi for us & told me to sit in one of the chairs inside while she went outside to wait. I felt different sitting in those chairs waiting to go home this time. I knew I needed to try & adjust to what had happened to me, & being back at home, but I just didn’t know how to do it. Every time I had any kind of headache, pain or muscle spasm I automatically connected it with my stroke, I couldn’t help it, it was just the natural reaction after something so life changing had happened.

After a few minutes my mam came back in to let me know that the taxi had arrived so I got up & walked outside into the fresh air & got into the back of the taxi with my mam. Then we set off after my second stay short stay at North Tees & my second attempt at adjusting to life outside of the stroke ward...

Part 11 - Back on Ward 41...

On the Monday morning, I remember waking up & feeling really, really tired. And I was aching a lot all over my body. I also felt dizzy, much more than I had been since I had come home from hospital the previous Tuesday evening. I didn’t have much energy at all, but after I had gone downstairs to the kitchen to have my first tablet of the day & had a sit down for a little while, I wanted to have a shower. The last few times I’d been in the shower my mam had been downstairs “just incase” anything happened to me. After my trip to the supermarket & all of the cleaning I’d done over the weekend, I didn’t think that there would be any problems getting a shower while I was in the house on my own, & so there didn’t prove to be. I had a shower, albeit I took things a lot slower than I usually would have, got dried & dressed & went back downstairs. I had decided over the weekend that, seeing as I had been out of the house to the supermarket, I was going to try & go out every day, both to build my confidence back up & to get a little bit of exercise. There is a shop at the top of the road that leads into the little estate that I live in, so it was perfect.

One couple of the things that I was advised of while in hospital was to eat a healthier diet & to try & get my weight down, so I had made a conscious decision to do both. While at the supermarket on the Saturday I had bought a lot of things to have salads for my dinner, & a few different fruits to have aswell. I had used to eat salads & fruit quite regularly but, over the past few years, had drifted back to eating more unhealthy things, especially on a weekend. And, even though I had never realised it previously, my alcohol consumption had also increased, more-so on a weekend but also during the week as I had been working away on a Tuesday & Wednesday so there was a few of us in a hotel on a Tuesday night & we would always stay up until the early hours drinking. Stupidly I now realise, looking back.

Before I went for my walk to the shop, I went to the kitchen & chopped everything for my salad & mixed my tuna & (light) mayonnaise. I wanted to have my dinner all done & ready because I didn’t know how tired I would be after I had been out. So, after all of that was done, I put my trainers & jacket on & set off. It is not too far to the shop, & before my stroke I could have probably walked there in a few minutes. However, I wanted to take it slowly & not rush, plus I was still walking with a bit of a limp, so couldn’t go too fast anyway. I got to the shop after about 10 minutes, bought a paper, a drink & some milk then made my way back. It felt good to get out of the house & do something normal, but while walking back I felt really dizzy again & I felt short of breath with a tightness in my chest. I didn’t think anything of it & walked back home slowly. When I got back I felt absolutely exhausted, & the dizziness hadn’t subsided at all. And to add to everything, I was starting to get headaches, on & off. I ate my dinner, washed the pots & went to sit in the living room to watch the TV, but I was still seeing those little specs of white light if I looked at the screen for a prolonged period. Since I’d had my stroke, & especially since being discharged from hospital, I felt really scared every time there was something happening to me, be it a headache, a muscle spasm or twinge, or even just an ache somewhere that I hadn’t had one in the last few days. I also had a constant ‘butterflies’ feeling in my stomach & sometimes couldn’t catch my breath. Because it was all new, it really panicked me & my mind would run away with all of the things it might be, always thinking it was the start of another stroke.

As the day went on, I felt more & more exhausted, physically & mentally drained, & I felt constantly dizzy. When it got to teatime, I made something to eat, waited until it was dark enough outside for me to close my blinds, then went upstairs to lie in bed & watch TV. This was around 6:30pm, so still really early, but I just didn’t want to be alone downstairs, especially when it got dark & it got later. As it got darker I would start to look at the clock a lot, waiting for it to get to the time it had been when I had my stroke, although with the time I was going up to bed, I wasn’t going to see it downstairs. For some reason I just felt safer up there, & that’s where I stayed for the rest of the night, only going back down to take my last tablet for the day.

I won’t bore you with the full details from the Tuesday as it followed, more or less, the same pattern as the day before. I knew my mam wasn’t going to be over for a few days, so if I wanted anything I would need to go out & get it myself. I do remember, though, on the Tuesday I still felt completely exhausted, even though I had only walked to the shop on the Monday, it was further than I had been previously, & I had done it again on the Tuesday. I was still getting the headaches, shortness of breath & tight chest, but my left arm & leg were also aching, which really un-nerved me. It was the first time that had happened since coming home from the hospital.

When I woke up on the Wednesday morning I felt so tired, probably even more tired than when I went to bed the previous night, I knew then that I must have overdone things at the weekend, typical me trying to do too much too soon! The dizziness was also there still, as was the headache. I just didn’t feel right at all. This persisted throughout the morning & early afternoon, & when it got to around 3pm things came to a head. I had been feeling really restless all day, really anxious & worried for no reason, with things getting steadily worse.

My headache was the worst I’d had since the night of my stroke, there was a pain all over my head & it wasn’t shifting. I felt really dizzy & disoriented, my chest felt like someone had a rope around it pulling it tighter & tighter, & I was struggling to catch my breath. And, for the first time since being in hospital, my left arm & leg felt really weak. That was it, the panic had really set in & allsorts were racing around in my mind, I was convinced that something was happening to me again. I don’t know why but I didn’t ring 999, instead I called 111.

The man who answered asked a few questions & then asked what the problem was. I explained to him that, eleven days earlier I’d had a stroke & was discharged eight days ago. I explained all of my symptoms to him; I was really panicked so not sure what he must have been thinking. He explained to me that, because of my recent history, he wouldn’t be happy unless he sent a paramedic out to check me over. He said that someone had been dispatched & would be with me very soon, but he didn’t stay on the phone with me as the 999 operator had done on the night I had my stroke. I started pacing around in the living room & passage, looking out of the window to see if there was anyone there yet. As I was pacing around I was working myself up even more & by this time I was really panicking. I really couldn’t catch my breath & my heart felt like it was beating so hard & fast that it would come out of my chest! I went to get my keys & unlocked my front door & left it open a little bit so that the paramedic could come straight in.

I went to try & sit down, & after about 10 minutes the paramedic arrived & came into the living room. He asked what had been happening so I explained to him about my stroke & the symptoms I had been experiencing over the course of the last few days. He asked why I had waited a few days to call someone, especially with what had happened so recently...& he was right. I should have called on the Monday when these feelings had really started to intensify.

He then did the usual checks – blood pressure, blood sugar & ECG. My blood pressure, I remember him saying, was worryingly high, but the blood sugar was normal & the ECG was fine. He then went through the F.A.S.T test, checking me for any of the signs of a stroke. I wasn’t displaying any of them; however, my left side had felt much weaker again, so he said that he wouldn’t feel happy unless he took me into hospital to get checked over. He went out to his car to get the tablet computer that they make their notes on, & came back. After he had finished writing everything up, he found the number for the stroke ward at North Tees & rang to speak to them. He explained everything that had been happening, the symptoms I had & that I had been admitted on 21st January after having a stroke. When he come off the phone, he said that they were happy to admit me to the ward & that I had to be brought straight in for a CT scan to check for any new stroke, or an extension of the original. I got a few things together & the paramedic drove me there in the rapid response car he had arrived in.

When we got there the paramedic got me a wheelchair & took me straight down to the X-ray department. He wasn’t from the area so when we got to the hospital he had to ask people how to get there, then when we did; we went to the wrong waiting room. He was always very reassuring, telling me that he would stay with me until I was handed over to someone from the stroke ward. After around 10 minutes a nurse from ward 41 met us & the paramedic done his handover, & before he went he wished me well & said that he hoped it was nothing serious, which I thought was really nice. 

The nurse wheeled me to a holding area in one of the corridors to ask me a few questions. She hadn’t been on the ward when I was admitted the first time, so I didn’t recognise her & she didn’t know me. I had taken my discharge summary from then with me & gave it to her to have a look through. She went off to speak to someone to see how long it would be until I could have my scan, then came back after 5 minutes to say they were ready. She wheeled me round to the room where the scanner was, the same room I had been in the week before. When I got myself from the chair to the bed of the scanner, one of the radiographers came over to say that she remembered me from the previous time & she asked if I was ok, & I said I hadn’t been feeling right for a few days.

The CT scan doesn’t take long, so after 10 minutes or so the nurse wheeled me up to the stroke ward. Unlike the first time I had been admitted, this time I recognised the corridors we were going down & all the doors we were going through. When we got there she asked which bed I was going in & they said Bed 18. This was at the opposite end of the ward that I had been on the previous week, & I hadn’t been down this part. When I got there someone came over to do my obs & put a canula in my arm & took some blood to have tested. The nurse asked if I had a headache, to which I said I did, so she had some paracetamol brought over for me. I sent a text to my mam & dad to let them know that I had been admitted to the stroke ward again.

My bed was right next to a window, & as I laid there looking out, one of the nurses who had been working when I was first admitted walked past & said “can’t keep away from this place can you”, & I replied with “well I missed you all so thought I’d better come back”. She was one of only about three members of staff that I recognised, it was completely different this time – I was on a different part of the ward & there were different staff.

When I had finally got sorted, they were bringing teatime food orders out. One of the nurses came over & read out the options to me so I could get something as I hadn’t been there when they were taking the orders. I can’t remember what I got but I do remember that I asked for a fruit yoghurt with it, as I had always done the first time I was in. After I had finished my tea I turned the TV on that was over my bed & moved it round to where I could see it. Strangely, this was the second time I had been admitted to hospital, but some people had only just found out about me having an stroke so I had a few messages coming through during the evening so I replied to those & let them know that I had been re-admitted.

This felt all too familiar, being admitted to hospital, waiting for the results of a CT scan. It would mean another stay on Ward 41...

Part 10 - Life on the outside...

The days that followed all seemed to blur into one. There was nothing to separate them; I wasn’t really doing anything with my time. I had got myself into a bad routine of not doing much – the worst kind of routine. As well as not doing anything, I didn’t really go anywhere either. Although I had gained some more movement & strength back in my left arm, my left leg still felt weaker & I was limping when I walked. I didn’t want to go outside & have to face anyone that I might know should I see anyone, I also didn’t want to have to explain to any of my neighbours what had happened, even though some of them no doubt had seen the ambulance & paramedics on the night I was taken into hospital, it was still relatively early & on a Saturday night when it happened so someone must have seen or heard something. It wasn’t that I felt ashamed of what had happened, I just didn’t want to go over it with anyone yet, it was far too soon for me to relive it. Everything was all a bit raw & I was still feeling all over the place mentally & emotionally.

Part of the routine I had got myself into, & part of the reason I didn’t need to go anywhere, was that my mam came over to my house every day, always late morning/early lunchtime, & before she did she would always text me beforehand asking if I needed anything bringing with her. It wasn’t that I couldn’t go out, I just didn’t want to, & having someone coming over every day gave me the opportunity to avoid it. I was staying in bed a lot longer than I really should have been, I was getting up to take my first tablet of the day around 9am then going back upstairs to lie in bed watching TV for a few more hours, so I would always ask my mam to bring me a sandwich for my dinner as I couldn’t really be bothered making anything for myself. It wasn’t that there was nothing in the house to use; I just could not be bothered. Along with a sandwich she would also bring me a newspaper & a drink – again, not that I didn’t have anything in the house I couldn’t have made for myself, it was just far easier to have a bottle of something fizzy there that I could keep next to me on the settee.

And that was the theme for the next six days – not really wanting to do anything or go anywhere. I had no interest in anything. It was like the stroke had stopped me being me. It felt like it had robbed me of the enjoyment of everyday life overnight, & the life I had lived prior to having a stroke had never existed. The feeling of fear was also still right there, always in the forefront of my mind & that also played a part in me not wanting to do anything, I was scared that whatever I did would result in me having another stroke. I didn’t want to try & do the things I had done before just incase it triggered something new & something happened to me again. It wasn’t a completely irrational fear, after all I’d had a stroke less than a week ago at the age of 33 when otherwise in good health so how much worse could it be this time should something happen to me? But it was a fear that I’d let in & let affect how I was living each day & how I was thinking. I would try & rationalise it so, in my head, it made me think that I was coping ok , even though I didn’t realise at the time that I wasn’t really coping well at all.

As my mam works at the hospital on an evening she had to leave my house to catch her bus at around 3pm, & with my dad working on a night, it left me at home on my own & it terrified me. I was ok during the afternoon time when it was still light as I had the blinds open &, should anything happen, I had a better chance of someone seeing me or me being able to alert someone – this is how I was thinking at the time, this is what the anxiety of something happening was doing to me. I had never had an issue with living alone before &, even when I was still living with my parents, I never minded being in the house on my own. But, as it was January, the nights got darker much earlier & as soon as it did & I had to go round & close all of the blinds in the house, that’s when my anxiety levels really increased. The main reason it scared me so much was that, when I’d had my stroke, I was on my own at night time & it was dark. And as silly as it may seem, when it got to night time, I would look at the clock when it got near to the time it had happened, & it was almost a relief to get past 8:30pm every night. That feeling was irrational, that something else was going to happen to me at the exact same time, but I couldn’t help thinking like that. And although I was staying in bed longer on the morning, I would start & go to bed really early on the night as I didn’t want to be downstairs in the living room on my own. I would wait until I’d had my tea &, around 6:30pm, I would switch everything off & go upstairs & watch TV in bed all night, I felt safer when I was laid in bed. Silly I know, but fear & anxiety were now affecting my thought process. I would lie in bed for hours on a night; not really taking any notice of the TV a lot of the time, it was just a background noise. I had never been a great sleeper before my stroke, but I was finding it near impossible to fall asleep on a night. I would try & fall asleep while the TV was still on so I didn’t have to lay there in darkness trying to get to sleep as I would have too much time to think. A lot of the time it must have worked as I would wake up on a morning & not remember having turned it off, it wasn’t good as I would do this every night.

On the Friday I’d done a bit of washing & put it on the radiators to dry overnight so I could iron it the next morning. I had always done my ironing on a Saturday morning so wanted to carry on doing that, it was something ‘normal’ to me. I’d decided on the Friday night that I wanted to go out & get some shopping, I’d had a good look in the fridge & cupboards, got rid of anything that had gone out of date & made some space, & made a list of things I needed to buy. I sent a text to my dad & asked if he would come with me in a taxi to Asda on the Saturday afternoon, which he replied & said he would.

On the Saturday morning as planned, I got up to o my ironing, there wasn’t much as it had only been a few days since I’d been discharged from hospital so didn’t take long. I done a few more things around the house, had some dinner & let my dad know that I was ready to go shopping as soon as he was & could come over. As he wasn’t driving at the time he walked over from his house which took around half an hour. When he arrived I made him a cup of tea while he had a sit down after walking to my house. Not long after he got to mine, he said he was ready & I phoned a taxi which arrived after about 10 minutes (they’re always really fast). When we got to Asda I went to get a trolley, it made it a bit easier for me to walk as I leant on it but was still walking with a bit of a limp. It was the first time I’d properly been out of the house & been around a lot of people. I felt really anxious & kept hoping I wouldn’t bump into anyone that I knew, which thankfully I didn’t. The newspapers are right at the entrance so put one in the trolley first, then we made our way around the store slowly while I found everything on my list. We were only out for less than an hour but it felt like a lot longer, & I felt really tired. When we got back to my house I put the bit of shopping away then went to sit in the living room with my dad. He said he couldn’t stay long as he had arranged to meet my uncle for a drink a little later so he left shortly after. When he left I got that panicky, anxious feeling again as I was back on my own. Later I done myself something to eat & watched TV for a while. It got to that time again where I had to close the blinds as it was dark & the anxiety levels increased further. As time went on it suddenly dawned on me that it was just after 8:30pm...exactly a week, more or less to the minute, that I’d had my stroke. That made me feel really uneasy & I remember texting my mam soon after to let her know, even though she probably didn’t need reminding. I don’t imagine your son having a stroke is something you forget. It was around 10pm that I went up to bed that night, I wanted to try & stay up a bit longer but it didn’t help with me getting to sleep.

On the Sunday, as I didn’t have to be anywhere, I decided that I was going to do my cleaning. Before my stroke, when I done my cleaning, I would do more or less everything in one day – polishing & hoovering right through the house, I have a leather suite so that would get a wipe down, & I would clean the floors in the kitchen & bathroom. As I didn’t feel as bad as I had recently, stroke or not, I was going to do my cleaning.

I started by washing any pots that were in the dish in the kitchen, and then moved onto the polishing. Maybe it’s a bit of OCD, but whenever I do my polishing I always follow the same route around the house, so I made a start in the living room. The weather, I remember, was quite nice for a January morning so I had opened some of the windows & had the DAB radio on instead of the TV. I made my way around the house, polishing anything that needed it as I went. It felt good to be doing something ‘normal’ &, for a while at least, that’s how I felt. After the polishing I got the hoover out & made a start on that – same as with the polishing, I always followed the same route around the house when hoovering. I started with the upstairs & made my way down. I felt exhausted when I finished as it was the most I had done since coming home from hospital. I was suffering from post-stroke fatigue which left me exhausted anyway, without trying to do so much at once. After the hoovering I ran a bucket of hot water, poured some floor cleaner in & cleaned the floors, first the bathroom then the kitchen. This didn’t take too long &, while I was waiting for them to dry, I gave the leather suite a quick clean too. When I’d started the cleaning I hadn’t thought that it would take me so long to do. Prior to having a stroke, I could get everything done in a few hours, this time it had taken nearly all day, with me only stopping briefly to have some dinner. After I was done I was completely shattered, physically more exhausted than I had felt in a long time. When I finally sat down I sent a text to my mam & let her know what I’d been doing. She wasn’t happy with me & said that I’d tried to do too much & that she would have came over to help me if I’d let her know. I knew she would have, but I wanted to do it for myself. I wanted some kind of sense of normality, even though deep down I knew that the normal of a week before didn’t exist for me anymore. I knew she was right, but I was still finding my way post-stroke & wasn’t sure of my limitations just yet.

The anxious, panicky feeling had returned later in the evening & seemed to be much worse than before, but I didn’t think anything of it. In hindsight, maybe I should have taken more notice of how I was feeling & spoken to someone instead of ignoring it. Maybe it could have prevented the events that would build up over the coming days...

Part 9 - Home is where the start is...

I didn’t get much sleep that first night back at home. Even though I was exhausted, both physically & mentally, I had too much going around in my mind & just couldn’t switch off. I had gone to bed really early aswell. I had waited until the washer had finished its cycle & sorted clothes out between what was going in the dryer & what was going on the radiators, quickly had a sandwich & a drink then I closed all of the blinds & went to lay in bed. It felt nice to get back into my own bed after being in the hospital one for a few nights, it was something familiar but it felt like I hadn’t been there for weeks. The day I had my stroke I had washed my bedding &, because I was taken into hospital that night, it hadn’t been slept in. I turned the television on, I can’t remember what was on, it was just background noise as I wasn’t really paying any attention to what was on the screen. I’d had quite a few messages from family & friends while I was in hospital that I hadn’t replied to, I didn’t really know what to say at the time, so I went through those & replied to most of them. 

When I woke up the following morning I still felt really tired, I was aching & had absolutely no energy. It felt really strange to wake up in my own bed, in my own house for the first time in a few days. I got up, made my bed & opened the blinds – the view of the street from my window was one I had seen hundreds of times before, but this time it didn’t seem real, like I wasn’t really there. While I was in hospital, during that first night when I was having scans & being thrombolyzed, there were times when, in my own mind, I questioned whether I would even make it back out of hospital. With all that was going on around me, my mind was already racing at a million miles an hour trying to comprehend everything, but the word ‘stroke’ brought extra panic & anxiety – this was something that thousands of people every year unfortunately lose their lives to.

I opened the rest of the blinds upstairs & went downstairs to do the same. I switched the television on & left it on whatever channel had been on the night before, I wasn’t really that bothered what was on. After that I went into the kitchen as I was due to have the first of my two tablets – before being discharged from hospital, one of the pharmacists advised that it would be best to take my anti-platelet medication (Clopidogrel) on a morning & my statin (Atorvastatin) on an evening as that is when we produce most cholesterol so would be more affective.

During the morning my mam sent me a text message to let me know that she would be coming over at lunchtime. She asked me if I needed anything bringing but I couldn’t think of anything so just asked if she could bring me a paper to read. I wanted to have a shower but, before I was discharged from hospital, one of the OT’s had advised that, for the first few times I got in the shower it would be best if there was someone else in the house with me ‘just incase’ so I would need to wait for my mam to arrive first. Part of me did want to try it, but thought better of it as, if I’d have had a fall & wasn’t able to get to my phone, it would be a couple of hours until my mam got there. Even small things like being able to have a shower, little things you would usually take for granted, suddenly weren’t going to be simple. At least not for the time being anyway.

I went & sat in the living room & started watching the TV. While I did, however, something that had been happening while I was in hospital had started happening again. When I looked at the screen, out of the corner of my eye I could see tiny little specs of white light that moved upwards & then vanished. This happened several times every time I either watched TV or looked at my phone or iPad & could be quite un-nerving, especially for someone recently suffering a stroke & being discharged from hospital. As I write this post 11 weeks on, still to this day I can’t watch TV for too long or look at a phone/iPad screen for long periods. Thankfully the issue with seeing the specs of light have long gone & my eyes have got much better since, but they do feel strained after a while, although I am very confident that I will be able to look at screens the same as I used to in the coming months as it seems to be gradually easing off now.

Aswell as the specs of light, I also felt a bit dizzy & light headed at times. This was also a new & un-nerving experience for me, & it made it harder to focus on things. I sometimes found myself looking at objects around the room, testing to see if my eyes were working properly. One of the doctors on the ward had explained to me that the dizziness would probably be with me for weeks after I got home, maybe longer. He had explained to me that, since my stroke had caused part of my brain to stop working, other neurons in other parts of my brain would need to ‘wake up’ & take over the jobs that the part not working anymore used to do. This would take time as it was, as he called it, a ‘re-mapping’ process. And as bad as the dizziness would be, it wouldn’t last forever & was not anything harmful. As much as I appreciated him explaining that, it didn’t really make me feel any more settled as dizziness is horrible feeling to have, especially more or less constantly.

Around lunchtime my mam arrived. She had brought me the paper that I had asked for & she had also brought me a sandwich from the shop she had been to. I had plenty of things in the house that I could have had for my dinner, I had been shopping during the daytime on the Saturday I was admitted to hospital, but I hadn’t been too bothered about eating. I knew I had to eat, but even the thought of making anything just seemed like a chore. It was only my first full day out of hospital & I just didn’t have the energy so I had the sandwich & a packet of crisps from the cupboard.

As we both sat in my living room, my mam asked me how I had been, if I had slept ok the previous night. I told her that I felt ok but hadn’t slept particularly well as I had too much on my mind & couldn’t settle to fall asleep. She also asked me if I had remembered to take my tablet on the morning so I told her I had. I explained to her that I wanted to have a shower but I couldn’t until she had got there as the OT’s in the hospital said to have someone else in the house with me the first few times. After I had finished my dinner I went upstairs, got some clean clothes from my bedroom & went to the bathroom. I brushed my teeth first then started the shower running to get the temperature right while I got undressed. Before getting in I remembered what the OT’s had advised – to step into the bath with my weaker leg first, which I did. As I stood under the shower, I remember the sensation being different. On my left side, as the water hit my arm & leg, it felt different to my right side. It felt more faint as the water was hitting me, like the water wasn’t coming out of the showerhead as fast, even though it was. I washed my hair & the rest of me then stepped out of the bath onto the bath mat on the floor, good leg first. It was my first shower since the Saturday & it felt really good to wash away everything from the last few days. I dried my hair then the rest of me, I had to do it a lot more slowly than I had previously, partly because of the dizziness & partly because my left arm & hand were now weaker so it made it that bit harder to do usually simple things. Afterwards I got dressed & went back downstairs & my mam made a comment that I looked much better now I’d been showered & got cleaned up properly. I did feel a bit better afterwards, but it had taken all of the little bit of energy I had to get showered, dried & dressed. I was absolutely exhausted again so I just sat back down in the living room, talking to my mam & attempting to watch the TV.

At around 3pm my mam said she had to go as she was at work that night & needed to go for a bus. It had been nice to have someone else in the house with me, & it made me feel a bit anxious that she was now leaving, but I didn’t say anything as I knew she would have rang them to say that she wouldn’t be in. In December my youngest niece had been taken into hospital with a serious kidney infection & had also developed pneumonia, & she had been off work for a while then, so I knew that she couldn’t really afford to miss anymore days. She said that she would try & get back over tomorrow & she would text me later on to see how I was. I said I’d be fine & she went to catch her bus to work.

After she had gone I didn’t know what to do with myself, I felt lost. I read the newspaper that my mam had brought & watched TV for a little while. In between I was also playing on my phone, replying to any messages & looking on a few websites, mostly sport sites to see what I had missed while in hospital as I hadn’t really been too bothered about looking.

As it was January, the nights got dark quite early, around 4:30pm. As it got to this time I closed all of the blinds in my house & switched the lamp on in the living room. I remember feeling really anxious as the darkness of the night drew in. The first symptoms of my stroke had started during the night time when it was dark, so as soon as I closed the blinds & made sure the doors were locked, I felt my anxiety levels increase immediately. I felt uneasy & almost trapped in my own house. I hadn’t really noticed this the previous night as I had not long been discharged from hospital & was exhausted, but this was my first full day & night back at home & I was on my own again in my house at night, just as I had been on that Saturday night when I had my stroke. I felt alone & frightened, not of being on my own as that didn’t bother me, I was frightened that something would happen to me, just as it had four nights earlier, only this time, if it did, what if I wasn’t able to alert anyone as I had done last time? What if something did happen & it was worse than the first time? I had all of these thoughts  & more going around in my head. I turned the TV off, made sure again that the doors were all locked, turned the lamp off & went upstairs to lie in bed to watch TV. In some strange way it felt safer there, the living room was where I had called the ambulance from after the initial symptoms started, I didn’t want to be there. It may sound strange to some people, but while I was sat in my living room, in exactly the same seat I had been on the Saturday, during the night time while it was dark, I felt like I was right back there again & needed to escape.

A little bit later my mam text me to ask how I was & if I had remembered to take my second & last tablet of the day. I said I was fine, I didn’t let on to her that I was feeling the way I was. In hindsight maybe I should have as it could have prevented certain events later on, which I will also post about at a later date. I also told her that I had decided to take the second tablet at 8pm so I would be having it shortly. I told her that I had gone up to watch TV in bed as I was tired. That was partly true, I was really tired, but that wasn’t the main reason I had gone up. I laid there for a few hours, half watching what was on the TV & half not really bothering. I went back downstairs to take my tablet at around 8 o’clock & have something to eat. I hadn’t had any tea so I was feeling quite hungry so had a bowl of cereal before heading back upstairs.

And with that, I had survived my first full day back at home. It had been hard adjusting back to life outside of hospital, but I had done it....just.

Part 8 - Discharge day...

During the really early hours of Tuesday morning I was woken up by the noise of another person being brought onto the ward & put in one of the beds opposite to me. I didn’t really pay too much attention as I was so tired & wanted to try & get back to sleep. I couldn’t really see properly, but it was a man in, what I would have guessed, his late forties. A couple of nurses helped him to get sorted & into bed. I heard him talking & he had a really deep voice. I also remember there being a really strange smell when he was brought in, almost like TCP but not quite. As I was still connected to the telemetry machine I couldn’t sleep on my front, which for me was really hard as I usually just couldn’t sleep on my back, I have never really been able to. I closed my eyes & tried to get back to sleep but, because of the disturbance, I only drifted off occasionally through the rest of the night.

As we reached morning & the daylight started coming through the windows, I unhooked the remote from the side of the bed & raised the back of the bed up so I was sitting upright. One of the nurses came round to the man who was brought in overnight to let him know that they had booked him onto the morning shuttle-bus & he had to be ready outside the main entrance of the hospital by 8:30am. He started to get himself ready &, after around 10 minutes, he got up & walked across the ward to ask one of the nurses where the exit was & off he went. I found it all a bit strange that he was brought in at all; he was only in for a matter of hours.

Just after he went, the lady who takes the food orders came round to ask what I wanted for breakfast & I just asked for the usual toast & marmalade – as this guy had gone, there was only me on this part of the ward where there were four beds. Someone came round to take my obs & they told me, again, that I was possibly going home today. It was a weird feeling, apprehensive & anxious is how I would describe it. After all, I had only found out the previous day what had been the cause of my stroke, was I ready to be discharged already?

After breakfast the physios & OT’s came round again. As with the previous times they wanted me to have a go at walking. I put my trainers on, got up off the bed &, with the physios either side of me, set off on my slow walk down the ward & back. My left leg still felt shaky, but the physios told me I had done well. Next it was time for part I dreaded – attempting the stairs. As I had just done some walking & they didn’t want me to overdo it, I was sat in one of the chairs & wheeled to the staircase I had been the couple of times before. Again, with the physios either side of me, they asked me, in my own time, to try & walk down the stairs. I slowly stood up, grabbed onto the handrail to my right, & pensively made a start, weak leg first. I took a few minutes to get to the bottom &, when we got there, I turned round & made my way back up. Getting back up was always more difficult as the handrail was on my weaker side. When I had finished I was sat back in my chair & taken back to my bed. The physios had told me I had done really well & they would be speaking to the doctors a bit later, I assumed about me going home. I didn’t let on to them about feeling nervous of potentially leaving hospital. In hindsight, & knowing what followed after I was, maybe I should have.

After the physios had gone, one of the OT’s came round to ask how I was. Again, I didn’t say anything about feeling anxious or nervous & told her I was feeling ok. She had brought the things I had used previously back round, the early learning centre products, & a couple of other things. She asked if I would be able to have another go at using them throughout the day & let her know if I struggled with any of them. One of them was a stuffed fabric cube with different activities on each of its six sides – one of them was buttons of different sizes that I had to try & fasten & unfasten with my weaker hand & it drove me mad the last time. It was not going to get the better of me again! As she was getting up to leave, she also mentioned to me that she would be speaking to the doctors later in the day. This had made my mind up that I would be going home today.

As we got nearer to lunchtime, a junior doctor came round & asked if, in around an hour or so, he could come back round with a student doctor to do some training tests on me if I didn’t mind. He said it should take no longer than half an hour & would be really appreciated as it was a great chance to get some real-situation experience, so I said it was ok.

After I had finished my lunch I wanted to get cleaned up so I walked over to the shower room with my things so I could wash my hair. I didn’t feel confident using the shower just yet, & didn’t really want anyone to have to help me shower so I just washed my hair, cleaned myself up & brushed my teeth. Not long after I had got back onto my bed, the junior doctor came back with his student & asked if it was still ok to do some training, & I said it was. They pulled the curtains around my bed & the student started with his tests – they were the same ones as the doctors & nurses had done numerous times before – testing the strength in my arm & leg, following his finger with my eyes, testing my reflexes etc. After around 20 minutes or so, they were done & thanked me for letting them come round & wished me well in my recovery.

While I had been with the junior doctor & his student, an old gentleman had been brought onto the ward & put in the bed opposite to me. I had heard a bit of commotion but didn’t think anything of it. He was also hooked up to the telemetry machine & had a nurse taking his obs. I learned afterwards that he’d had a stroke while at home & had lost the use of both his legs. I never really spoke to him in the time I was still on the ward as his son had arrived & was sat with him. I didn’t really like to & didn’t know how capable he might be of conversation, or even if he would want to so just left it.

Afternoon visiting time started around 2:00pm, & my mam came over to see me, bringing me a newspaper. As I sat flicking through the pages, one of the male nurses who was assigned to look after me that day came over, pulled the curtains around my bed & confirmed it to me...I was being discharged today. The physios & OT’s had met with the consultants & all were in agreement that they were happy for me to go home. I felt a wave of panic come over me. I didn’t feel ready.

As we had been sat with the nurse, my dad had arrived & was waiting outside of the curtain. As I was sat on my bed with my mam & dad sat at the side, I put on a brave face & tried to be as positive as possible in front of them. They were both relieved & were glad I was going home; however, I didn’t share their relief. I felt scared, frightened – I felt safe in the hospital. How would I feel back at home on my own? What if something else happened to me & I wasn’t as lucky this time?

A little bit later, one of the other nurses came over to say that I would be able to go home as soon as my discharge papers were done & signed, & my medications had been organised with the ward pharmacists.

A couple of hours later one of the pharmacists came round with my medications & explain a bit to me about them. I was being prescribed Clopidogrel 75mg & Atorvastatin 40mg. She explained to me that the Clopidogrel was an anti-platelet drug which would help my blood become less ‘sticky’, meaning it was less likely for clots to form. And the Atorvastatin was to help reduce my cholesterol, which had been too high. She advised taking the Clopidogrel on the morning & the Atorvastatin on the evening, as this is when most cholesterol is produced so would have the best affect. She then locked them in the small locker to the side of my bed & said they would be given to me upon being discharged. She also said that, if I had any questions at all to just let her know, whether that was now or after I had been discharged from hospital. I thanked her & said that I couldn’t think of anything at the minute.

Soon afterwards, the male nurse from earlier made his way over with a big smile on his face, waving a piece of paper...it was my discharge papers &, as soon as he had filled his part in & we had both signed them, I could go home. He sat on the end of the bed & moved the table over to him so he could write. While he was doing that he gave me a separate piece of paper & asked if I could fill it out – it was a small questionnaire about my stay on the ward, just tick box answers & a small box at the end to write a small paragraph if needed. I went through & ticked the necessary boxes, all to indicate that I had received excellent care from everyone, & wrote in the box at the end of the page that I was thankful to everyone & really appreciated all they had done for me. When he had completed his part of my discharge papers, he handed them to me to sign. After I signed them, he asked if one of the pharmacists had been to see me, & I let him know that she had & that my medications were in the locker. He walked around to the main desk of the ward & came back with the key for the locker, checked the medications, put them in a small bag & handed them to me. He then disconnected me from the telemetry machine & took my canula out of my arm. Then he let me know that, as everything that needed doing had now been done, I was free to go home.

Myself, my mam & dad started gathering my things together & putting them into bags. I made sure that I had everything – my phone, charger & anything else that were in the drawers. I switched the television off & moved it back to the side of the bed. I started feeling a bit panicky when I stood up to leave hospital, I still didn’t feel like I was ready to go home but I didn’t let on to my mam & dad.

As my mam had to be at work shortly, my dad said that he would get a taxi with me back to my house...he would be the one paying as I didn’t have any money on me. I said goodbye to my mam & me & my dad got my things & we set off. He asked if I wanted him to get a chair but I told him I didn’t want to be wheeled out, I wanted to try & walk. As we walked through the ward towards the door, I said goodbye to the doctors & nurses I saw on my way out & they wished me well.

When we got through the first doors I started feeling quite emotional. We went through the second set of doors & onto the corridor I had been down so many times over the last few days, but this time I was walking, albeit very slowly. We reached the lift at the end of the corridor, I don’t like lifts at the best of times but felt a bit better as I wasn’t going in it on my own, my dad was there. I just stood there, holding onto the rail inside the lift, not saying a word. When we got to the ground floor, I only managed to walk a little bit further & had to stop & sit down on the chairs near to the cafe. I was exhausted. My dad went to get a chair &, while I was sat there, I felt even more emotional & started tearing up, but didn’t cry. When my dad got back with the chair I got in & he took me to the main entrance & phoned a taxi, then went outside to wait for it arriving. While sat there in reception I started tearing up again. I felt like crying but was forcing myself to hold it together in front of people. When the taxi got there I slowly walked toward the revolving door & outside for the first time since the night I was admitted. The fresh air felt nice, & it did feel good to be outside, but I didn’t want to be there.

When we got back to my house, my dad paid the taxi driver & we went inside. The living room was exactly as I had left it when the paramedics were there. I walked round & closed the blinds throughout the house. My dad was sat in the living room while I went to the kitchen to put anything that needed washing inside the washer & closed the door. As I stood there leaning on the kitchen worktop, I started crying. This time I couldn’t fight it off & I stood there crying. The tears didn’t last long & I sorted myself out before I walked to the living room where my dad was. He asked me if I wanted him to stay with my overnight with it being my first night out of hospital, but I told him no, that I needed to try & return to ‘normal’ at some point so might aswell start now. My dad stayed at my house for around 45 minutes, asking if I needed anything doing. I told him no, I was really tired & just wanted to get myself sorted & go & lay in bed.

After he left I locked the door, went to check if the washer was ready for the setting to be changed. I walked back to my living room & sat on the settee. When I looked down, I saw some little pieces of paper & plastic so I picked them up to see what they were – it was from when the paramedics had been doing an ECG & checking my blood pressure & blood sugar on the Saturday night when I was taken into hospital. It was seeing these reminders of what had happened only days ago that the enormity of what had happened really hit me – I was 33 years old & I’d had a stroke, a life changing & life threatening condition. I couldn’t control the emotion anymore; I just sat there on my own & cried my eyes out. The tears didn’t stop coming for a while as the whole situation hit me. The last time I remember crying that hard was when my nana died.

After nearly four days in hospital, I now had to deal with my life back at home. And I felt far from ready for it.

Part 7 - Diagnosis: Stroke...

As Dr Kumar & the other doctor arrived, I switched the television off that was above my bed & adjusted & pushed it to the side. When they got to me they pulled the curtains around & Dr Kumar sat on the end of the bed while the other doctor stood.

Every time I had seen or met Dr Kumar on the ward he always had a smile on his face & it was no different as he had made his way over to speak to me. As he sat down he asked me how I was, & if there was anything I needed. I said that I was feeling a bit better than I had done & that there was nothing I could think of that I needed, but thanked him anyway. He said the reason he had come to see me was that both he & Dr Anwar, the other stroke consultant, had seen the results & reports of all of the tests I had been for that day & they had found what had caused my stroke...

I remember feeling a kind of relief at hearing that. After all I was only 33 years old, in usually good health, have never smoked & tried to eat healthily more often than not, so why, when there are other people who live far worse lifestyles than mine, was it me who had a stroke. Along with the relief there was a real sense of fear that came with it aswell – what if it was something that couldn’t be fixed & would cause further strokes? What if there WERE more & they were worse than this one? People die from strokes every day, & that’s where the fear came from. Strokes are both life changing & life threatening, this had been by far the worst experience of my life & I didn’t want anything like this to happen again.

Dr Kumar continued to explain that they had seen from the ultrasound of my neck that my right internal carotid artery had been blocked & clotted to such an extent that it had torn, & because the blood flow in those arteries only go one way (up), the clots had made their way up into the right side of my brain. To be exact, the right cerebral hemisphere subcortical periventricular regions. My stroke, he told me, was known as a partial anterior carotid dissection (or PACS infarct)...& there I had it, the cause of my stroke.

Dr Kumar went on to explain that each side of the brain operates the opposite side of the body, so even though the clot was on the right side of my brain, this is the reason it had caused me to lose feeling & movement on my left hand side. I had not known that prior to my stroke, & found it both strange & fascinating how the brain & body work. I also found it a bit scary that one organ should be responsible for so many of the bodies major functions. As I had found out the hard way, everything can change in a short space of time.

It was also explained to me that, over time, I had developed a condition called Hypercholesterolemia – a high level of cholesterol in the blood. This had also been a factor in me having a stroke as having too high a cholesterol level for a sustained period of time can cause arteries to become hardened & narrowed, which in turn can lead to clots & build ups of ‘fatty plaque’ forming in them.

After Dr Kumar had finished talking, he asked me if I had any questions for him which he would answer for me. As what had happened had just been explained to me, it was all so fresh & was still taking time to sink in so I struggled to think of anything immediately. One thing I did ask him was “will the artery that has torn heal itself?” – he told me no, it wouldn’t ‘heal’, it would proceed close itself off. He explained that we have four major arteries in the neck that supply the brain, & after what had happened to me, I would have three left functioning but it wouldn’t be an issue & I wouldn’t have any adverse affects from it, he said that he knew of people with only two still functioning & they were living perfectly normal lives. This did help a bit as, since I had found out what had caused my stroke, I hadn’t even given a second thought to what ‘losing’ an artery might mean, so it was good to know.

I couldn’t think of anymore questions for Dr Kumar, so he moved on to tell me that I was to continue with the aspirin that I had been taking for the last couple of days, & paracetamol should I need any pain relief. He would be speaking with Dr Anwar so they could both decide on the best course of medication that I would be started on. He then got up off the bed, smiled & told me not to worry. The curtains around my bed were then opened again & Dr Kumar & the other doctor left.

After they had gone my head was spinning, there was so much to take in. I was worried that I hadn’t fully understood what was explained to me, & that I should have asked more questions but I just couldn’t think. I moved the television back so it was above & in front of where I was laying & unplugged my phone. I started to write out a text that I could send to my mam & dad – the evenings visiting time didn’t start for another few hours so I wanted to let them know that Dr Kumar had been around to see me. I didn’t really know what to type...what exactly do you write in these situations. I kept it pretty short, let them know that I had found out what had caused my stroke, that it was a clot in one of the arteries in my neck that had subsequently torn & the clot had travelled up into my brain. I would explain the rest to them when they arrived for visiting.

Those few hours I just lay on my bed, not really watching or listening to the television, it was just a background noise. I was messing around on my phone again, but needed to plug it back in as the battery was still quite low, as it had been for most of the time I had been in hospital. I had spent most of the time I was using it looking at websites, mostly news & sport sites, trying to be ‘normal’. But for those few hours I mostly just laid there, thinking about what Dr Kumar had told me earlier. There was still a feeling of relief that they had been able to find out what had caused my stroke so quickly, & I was so grateful to everyone that they had been able to, but I still felt frightened. I was in fear of having further strokes, whether that was while I was in hospital or afterwards when I had been discharged. The sense of fear is one that, even as I write this just over 9 weeks later, is still there. It is not as bad as it was, but it is still there, in the back of my mind. I suppose it is a feeling that will always be with me in some way, but it is one that I have learned I cannot allow to control how I live my life.

Later, as one of the nurses was walking round the ward, she came over to ask how I was & she mentioned to me that there was a possibility of me going home tomorrow. I didn’t know how to feel when I heard this – of course I wanted to be back home, but I was worried that I wasn’t ready to be back at home yet so soon, on my own...

Part 6 - MRI (Must Remain Inside)...

The porter adjusted the chair & brought the footrest forward for me as I made my way over from my bed. We set off through the ward towards the doors & I caught the eye of one of the nurses – I must have looked a bit scared as she said that I would be back soon & it was all painless. I appreciated her saying it but I still felt a bit on edge.

As we made our way down the corridors to the X-ray department where the MRI scanner is located, I felt a bit frightened as it was all unknown to me, & I felt tense. I didn’t just FEEL tense, I was literally tense. My shoulders & arms were completely tensed up in apprehension of where I was going.

When we got there I was taken into a room before going in for the scan, & a gentleman who worked in there welcomed me in & introduced himself & said he would be one of the people helping to perform the scan. He asked to see the canula in my right arm & said that he would need to inject a dye into it before I had the MRI, this was so that everything would show up on the images. Before he could inject the dye he needed to test the line was still usable so injected a saline solution to make sure it was clear. He asked if I could feel any pain or discomfort as he emptied the syringe & I said I couldn’t. He then asked if I had any metal objects on me & I showed him my two bracelets & he said that they would need to be removed. I have worn these bracelets without taking them off for a lot of years. One of them came off without any problems, but when it came to the second I knew there would be an issue – the clasp had broken a long time previously & I had to use a pair of pliers on it to force it so it didn’t come open. I never gave it a second thought in all those years...I never thought I would have a stroke & need to take it off for an MRI scan!

The gentleman went off & came back with a small Philips screwdriver & asked if it was ok to try & force the bracelet off. I said it was & he assured me he would try his best not to cause any damage to it. After a few seconds the clasp was forced open & the bracelet could be removed. The first time in I don’t know how many years...I don’t think I had ever taken it off before, I have never needed to. After that I was asked if I was able to make my way from the first room into the room with the scanner & onto the bed. It didn’t seem like too far a walk for me so I said I would be fine. It took a little longer to walk over than I would have usually, but I got there. As I laid on the bed, the dye was injected. They again asked if there was any discomfort & I again told them there wasn’t. I was laid down & someone came over to explain a bit more about what would be happening. They told me that I would have my head strapped in as I had to be as still as possible. Before they fastened the strap they put some pads at either side of my head to also help keep my head still, & they then explained about the noise. They explained that the noise of the scanner was quite loud & offered me some ear plugs if I wanted them. I opted to take them as I didn’t know how loud it would be inside...a choice I would be glad I made a bit later! They then gave me a small, squeezy ball & told me that it was a ‘panic button’, & if at any time throughout the scan I felt uncomfortable & couldn’t go on & needed to get out, I needed to squeeze the ball & they would end the scan & get me out. I was hoping that there would be no need but the fact that this option was there made me feel on edge again. I already felt really tense again laid on the bed waiting to be moved inside the scanner. The last thing they explained to me was that there was a little window with a mirror on the roof of the inside of the scanner that, when you look at it, looks out into the room & over at the window where the people performing the scan would be – I assume it is a mirror on an angle. They said that some people find it helpful to look through that for the duration of the MRI so that they didn’t feel as claustrophobic. I thanked them for letting me know & told them how I was feeling & said that it would probably be helpful to me too.

Everything was now set & everyone else left the room. I heard a voice say that I would need to lay as still as I possibly could for the scan , & remind me that I could end the scan at any time by squeezing the panic button they had given me. The voice wasn’t very loud to me as I had the ear plugs in, but I still heard what they said. The bed then raised slightly & started moving forward into the scanner, my head going in first. The voice then came on again, but this time it was inside the scanner so I could hear it a little clearer. They told me again that it gets quite noisy during the scan but it should be over in 15-20 minutes.

I was feeling really panicky as the scanner started whirring, I felt claustrophobia like I never had before. I noticed the scanner start turning & some lights come on, I looked up & seen the little window they had told me about so looked through & could see the room where everyone else was. It was a small comfort as usually you aren’t able to see anyone else during a scan. I had hold of the panic button really tightly, not because I wanted to press it, but because I was feeling so tense.

After what seemed like only a minute or so, the noise kicked in...oh did the noise kick in! It was like nothing I had ever heard before. It was a few different noises...what sounded like whirring, banging & clanking sounds. And the volume was incredible! As the scanner is a really enclosed space anyway, the noise was intensified so much. I had suffered panic attacks previously & I could feel myself getting more & more anxious as time wore on. That feeling you get in your stomach when your anxiety levels are raised, just before that panicky feeling hits & a full blown panic attack engulfs you, well that’s what it was. I was struggling to catch my breath because of it & was really close to pressing the panic button to end the scan, but didn’t. I tried to regulate my breathing, deep breath in through the nose, big breath out through the mouth just like the paramedics had told me the night all of this started. It wasn’t doing much good as I was still panicking & had that anxious feeling, I was also trying to keep still so as not to disrupt any images but it was hard.

The noise started to die down a bit after around five minutes & I thought that might be the end of the noise...wrong! It started again, just as loud & just as intense. I was finding it really hard inside of the scanner, I was scared I might have a panic attack while strapped to the bed & not able to escape, even if the button was pressed. The noise was relentless, like really loud machinery-like noises. I was looking up through the window/mirror over at the room where the staff were. I kept myself fixed on this view throughout the rest of the scan, but for the odd few times I was looking around at the top of the scanner as it was spinning. As the scan went on, I decided to see if I could deal with the noise a different way – I certainly couldn’t ignore it. As strange as it sounds, I tried to get then noises to sound like music. I was listening & trying to see if I could tap my fingers along to a rhythm. I don’t think I managed it, but it at least helped me to get through the rest of the scan & deal with this horrific noise.

After around 15-20 minutes the noise stopped again & I thought it was going to kick in again, but it didn’t. Slowly the scanner began to wind down until it stopped. It was over! Someone came out of the room & brought me out of the scanner & lowered the bed. The strap was undone, the pads removed & the ear plugs taken out. As I sat up a huge wave of dizziness hit me & I felt lightheaded & disoriented. It took a few minutes before I was able to stand & make my way back into the first room. When I got there I sat back in my chair & waited for someone to come back. The gentleman I had originally seen before the scan came in & brought my bracelets to me. He asked me if I would be able to put them back on myself but, as I wear them on my right wrist & I am right handed, it would be a struggle with a weakened left side so I asked if he would help me. The bracelet with the broken clasp stayed on, I was amazed. He asked me how the scan was so I told him how bad the noise was & how I was starting to panic. He said that was the usual reaction, especially or those who don’t like being closed in. Normally I am ok, but since being in hospital even going in the lift with a porter got to me.

After a few minutes a porter came to take me back to the ward. As I was being wheeled back I felt calmer than I had all day, knowing the MRI was the last test. I had seen the physios already so I wouldn’t have that to do when I got back, I could just get back to my room ready for visiting time to start. My mam & dad had both said they would be coming so at least for a couple of hours I would have people to talk to other than the occasions a nurse or HCA came in to see how I was or take my obs.

A bit later in the day one of the nurses came in to tell me that I would be getting moved from the room I was in on my own, to a bit further down the ward where it would be shared occupancy with four beds. I really liked having my own room, but the nurse told me it was because they were having a change around on the ward to keep all female patients together at one end & all male patients together at the other &, unfortunately, my room was going to be for female patients.

It was teatime that I was moved. I got all of my things together & the nurses said they would bring it down for me. One of the nurses came in with a chair to take me down &, as I was being wheeled down, one of the other nurses asked me where I was going & I joked that I had been kicked out of my room & downgraded. When I got there I was pleased to see that there were no other patients in any of the four beds so I was on my own still. I organised my things & plugged my phone charger in, as the battery was just about dead. I adjusted the television so it was right in front of me when I laid down. I didn’t get too comfortable, however, as Dr Kumar, one of the stroke consultants, made his way over with one of the doctors.

After all of the tests, they had found out what had caused my stroke...

Part 5 - Testing, testing...

Monday was only the start of the second full day in hospital but I had already started getting myself into a little routine. I like things to be familiar to me, I think it is a kind of coping mechanism within me. If something feels familiar, then it must be ok.

 

The morning started out the same as the day before – breakfast orders being taken, my obs being taken & me, with my weakened left side, limping across my room to use the toilet. I asked for toast for breakfast again...I don’t really like scrambled eggs &, as nice as I am sure it was, I didn’t want to take any chances on the consistency of the porridge that might land on my tray.

 

I opened the blind to let some light into my room, & opened the window to let some fresh air in. Even though the weather was quite chilly at the end of January, anyone who has stayed in hospital, or even visited someone in hospital, knows that sometimes the heat can be overpowering & unbearable, so opening the window kept the temperature in my room at a reasonable level. Breakfast arrived, toast with those little tubs of margarine & marmalade which I had a bit of a struggle with again. The toast was still warm when I’d finished this time so I must have improved on the day before...either that or it was brought in quicker today.

 

Not long after breakfast one of the doctors came in to tell me that I had been booked to go for a few tests today...a chest X-ray, an echo of my heart, an ultrasound of the arteries in my neck & an MRI scan. I’d had X-rays before, but never the others...I was feeling a bit overwhelmed by the amount of tests I would be going for in one day, but the doctor put me at ease & told me that they were all painless procedures, although the MRI made quite a bit of noise, but other than that they each shouldn’t take too long. At around 10:15am it started, what would be a whirlwind day as the consultants tried to find the answer to their & my question – why did I have a stroke at 33 years old?

 

First up was the chest X-ray – I’d had one of these before so I knew what to expect with this. A porter came with a chair to collect me. I got myself from my bed into the chair & the porter wheeled me out of my room & down the few corridors to the X-ray department. Once we got there I was taken straight into the room where I would be X-rayed & the porter went to let the radiographers know I was here. This was a rare occasion with a porter, he waited while the X-ray was done, usually they have another patient to transfer somewhere else in the hospital & leave straight away. After a few minutes a radiographer came out & introduced herself . I asked if I needed to stand with my chest against the metal screen as I had done before but she said no, they could do the X-ray with me sitting in my chair. She then adjusted the machine, positioned it so it was pointing at the part of my chest they needed to X-ray & she went back into her room. I heard a voice asking me to take a deep breath in while they took the X-ray, then after a few seconds the same voice said I could breath normally & that was that...test one of four for the day done & it was only just after 10:30am.

 

The porter wheeled me back to the ward & back into my room. Once we got there I noticed that my bed had been stripped & changed again, a welcome sight for any patient. I manoeuvred myself back onto my bed, not in it as the heat was pretty stifling, & started playing with my phone which had been charging during the morning & while I was out. After being back from having my X-ray for a short while, the lady who takes the lunch orders came round & left me the piece of paper with the list of choices for the day. I can’t remember exactly what I had other than yoghurt – I asked for yoghurt every day. A nurse came round to check how I was & ask how the X-ray had gone & someone came in to take my obs again, a different girl I’d not seen before. It was hard to keep track of the staff from my room, especially with the days/nights changeover.

 

A short while passed with me alternating between playing with my phone & flicking through the television & radio channels on the TV above my bed. The radio only had limited channels so the best I could get was either Radio 2 or hospital radio, neither of which were appealing to me at the time, I was only trying to pass the time until I had to go for my next test...& that wouldn’t be too much longer. Shortly before lunchtime, somewhere around 11:30-11:45am, another two porters arrived with their piece of paper & asked me to confirm I was indeed Paul Elliott...every time one of them asked me to confirm this I always wanted to wind them up & say no, they must have the wrong room but I just couldn’t do it to them. They work very hard & deserve better than my idiocy!

 

This time there was no chair, I was being taken in my bed. This was great, I didn’t have to look like jelly-legged & drunk trying to get into a chair. I unplugged the telemetry & the porters manoeuvred my bed through the door to my room, out of the ward & down the corridors to an ultrasound room – this test was the echo of my heart.

 

The porters left me in the room with the gentleman who would be doing this procedure, & he introduced himself & explained a bit about what would be happening. This was welcomed as I had no idea what to expect, I had heard of an echocardiogram before & knew it was something related to the heart, but didn’t know what it involved. After he had explained it I felt better – it wasn’t an invasive procedure, there were no needles or anything involved & I wouldn’t even have to move from my bed. I was asked to remove the t-shirt I was wearing & asked to shuffle over & lean back slightly so I was at the best angle. The gentleman performing the ultrasound told me that he would be using a type of gel on the part of the machine that would be in contact with my chest & abdomen & that it would feel cold...& he wasn’t joking! He squeezed a load of the gel onto the machine & started to run it over my chest & around the left side of my abdomen while repeatedly pressing a button every couple of seconds – this was, he told me, taking snapshots of my heart from what the ultrasound could see. This procedure lasted no longer than around 15 minutes & after it was over, I was given a roll of the thin blue paper they use & started trying to clean up the residual gel from my chest. This was not as easy as I’d thought it would be as it had started drying. I done my best with it & put my t-shirt back on. I was told the porters would be back for me shortly &, sure enough, within minutes two porters walked through the door to take me back to the ward. We made our way back through the now familiar corridors, up in the lift, back onto the ward & into my room. At the sink in my room, I took my t-shirt off again & managed to clean most of the dried in gel off my chest. The joy of doing this would, however, be short-lived...

 

No sooner had I got back onto my bed after drying myself, two other porters arrived to tell me I was being taken for the ultrasound of my neck. I had only just finished cleaning the last lot of gunk off me, now I was going to have more put on!

 

As with the echo, I was taken in my bed but to a different room within the same department. It was the same kind of setup – I was asked to position myself as close to the machine as possible on the left side of my bed, I removed my t-shirt again & the procedure was explained to me. It was to be the same as the echo, except on my neck – the machine would have the lubricating gel put on it & it would be run over both sides of my neck while snapshots of the arteries in my neck were taken of what the ultrasound machine could see. The same as before, the gel was cold & sticky & started to dry quite quickly, I think partly because of the heat. Again, this procedure didn’t last long & once finished, I was given the blue paper to clean myself up with...or do the best I could until I got back to my room where I could use the sink again.

 

I was sat on my bed in the ultrasound room waiting for the porters for about 10 minutes this time. The porters do an incredible job in our hospitals & transfer a lot of patients around every day & cover a lot of miles between them all so I was happy to sit & wait my turn. When they did arrive, they took me back to my room & off they went, no doubt straight onto another job of taking another patient either for an X-ray, scan or other test, or take a patient back to their room from being there.

 

It was now well into lunchtime & they were bringing the lunches round to the patients on the ward. I still can’t remember what I ordered except for the yoghurt. What I do remember, though, is that shortly after I had finished I was visited by the physios & OT’s (occupational therapists). I don’t think I’ve mentioned it in previous posts, but they did come round to see me on the Sunday aswell, more for an assessment than to get me doing anything. The physios had me doing the usual tests of strength & movements – squeezing fingers, pushing/pulling them, touching their fingers to check co-ordination etc. They also done sensation tests on my face, arms & legs – the sensation on my left side was really faint, like I couldn’t really feel it compared to my right side where it was completely normal. All of the standard things they do to see where you’re at so they know what they need to work on with you. The OT’s had brought me some objects to practice using my left arm & hand. When I first saw them I was a bit taken aback...some of them were Early Learning Centre objects such as wooden shapes you empty out & have to put back into the right pace, meant for ages 3+, I thought maybe they had brought the wrong things until they explained that they are used by patients with limited movement & weakness, such as those who have had a stroke, & they help you to practice the movements & positioning. I was a bit sceptical but went with it & was surprised at how I struggled with it a bit. I hadn’t thought these basic movements that I had taken for granted before all of this happened would be so difficult. It just went to show that my stroke had affected the littlest things my body could do.

 

Anyway, that was on the Sunday, today the physios & OT’s wanted to see how well I moved. The physio done the same strength/movement tests as the previous day – no real change, I was still a lot weaker on my left side then my right. She then explained to me that she wanted me to do a small amount of walking, just a little walk from my room & around part of the ward. They said they would be by my side at all times with a chair just incase I was too weak & needed to sit down at any time. I put my trainers on, & when I stood up I felt a little wobbly on my feet, maybe because I hadn’t really walked since coming into hospital. I set off with a physio either side of me holding onto my arms, & an OT following behind with the chair. It was a slow walk to say the least, I was trying my best but I just couldn’t get my left leg to move with the same fluidity as my right. It was frustrating, I was asking my brain to tell my legs to walk but it felt like only one of them was listening. As we got a bit further around the ward my legs began to shake so I was sat in the chair & wheeled back to my room. When we got there the physios said I’d done well & asked if I could manage to do one more thing & they would leave me alone for the day – they wanted me to attempt to walk down some stairs & back up again. I had assumed they meant unaided until they explained that part to me...that wouldn’t have ended well!

 

They wheeled me out of the ward, down a corridor & through a door to a staircase, one that didn’t get used that often which is why they take patients there. The part of the staircase they wanted me to use consisted of around 12-15 steps. I stood up out of my chair & grabbed onto the wooden rail on the right hand side of the staircase. The physios positioned themselves, one at my side & one behind me & they asked me to try walking down them – a trick they taught me about which foot goes first when doing this was “good goes to heaven & bad goes to hell”, meaning when I’m going UP the stairs, my good leg goes first, & when I’m going DOWN the stairs, my bad leg goes first. A handy little thing to help you remember.

 

I started my slow descent down the stairs, holding on tightly to the rail. As the saying goes, bad leg first, but it didn’t want to go. There wasn’t a great deal of bend in my left leg & it still felt a bit shaky from my walk around the ward. My right leg followed, no problems. Left leg again, same result as the first step, lack of movement, not much bend & weak. Right leg next, again, no problems. It would be like this all the way down. I took a minute at the bottom before I turned round to climb back up. I grabbed onto the rail again, this time it was my good leg first, & there were no problems. When I tried to use my left leg & put my weight on it to push up, there was a bit of a stumble & the physios got hold of me immediately & told me to take my time. That’s always been a problem with me, I’m in too much of a rush to do things. After a minute I set off again, right leg good, left leg not so good & it continued all the way back up, & once there I was sat back in the chair. The physios said I’d done well but I didn’t feel like that, I felt a bit useless that I couldn’t even walk up & down some stairs properly. The physios were great though, very encouraging & positive, exactly what was needed. They wheeled me back to my room & helped me onto my bed where I took my trainers off & put them back under the bed. The physios said they would be back in the morning along with the OT’s to see how I was doing & get me walking again & try to attempt the stairs again & after that, they left.

 

It was now around 1:30pm & I still had one more test to go for...my MRI scan, the one I was dreading as I had seen them on TV programs, documentaries in hospitals, & they looked terrifying. And, right on time, shortly after the physios had gone, a porter arrived with a chair to take me down for the MRI...

 

Part 4 - The morning after the night before...

Sunday 22nd January was a strange day, kind of the opposite of the phrase “the calm before the storm”. My storm had come the night before, & what a storm it was...this was the aftermath. The Sunday felt a lot more calm, a lot more stable but after what had gone on during the previous night, how could it not.

 

I remember feeling so many different emotions all at once, & having so many questions running through my head that I didn’t just want answering, I needed answering – What exactly had happened to me? How had it happened to me? And, the biggest worry for me, was this going to happen to me again?

 

In my sleep deprived state I tried to get out of bed to use the toilet in my room, but forgot that I was still attached to the telemetry machine. I unplugged the wire connecting the leads attached to my chest & the machine started bleeping – not wanting to alert any nurses, I quickly plugged it back in & the sound stopped. After a few minutes, as my dad was closest to the door, I asked him to call a passing nurse in for me. I asked her if I was ok to disconnect the wire temporarily while I used the toilet & she said it would be fine for such a short time...I was briefly free! However, the joy was to be short-lived as when I tried to take my first steps from the bed, I was quickly reminded how weak I still was on my left side. It was a strange sensation where I could feel my foot on the floor, but it was really faint, like the floor had moved when I tried to put any weight on my left foot. Because I was exhausted from the night before, I also felt weaker than I would usually...doubly so because of the stroke.

 

As I clambered back into my bed, it was time for my obs to be taken again...I was still on 15 minute intervals, however, this was to change a bit later in the day to every hour. A bit of respite from this at least, although the girls who were taking my obs were all really nice & nothing other than professional & courteous at all times so I didn’t really mind. Plus they were doing it for a good reason & for my benefit.

 

A few minutes later the breakfast I had ordered was brought in for me – toast with margarine & marmalade. I set about opening the little packs of margarine but it was clear it was going to be more of a struggle than I’d thought – I couldn’t hold them in my left hand properly, & it was the same for the marmalade. Attempting to spread them wasn’t too bad as all I had to do was keep the toast still with my left hand...at least I could do this!

 

As I was finishing my breakfast my dads phone rang – it was my mam. After I had got through to my dad during the early hours, he had left a message for my mam to ring him as soon as she got the message the following morning. On the phone my dad let her know what had happened, that I had been admitted to hospital after having a stroke. He let her know that I was ok & was waiting for the consultant to come round. She said that she would be over at lunchtime (as she had been staying at my sisters on the Saturday night she couldn’t just come straight over).

 

The next couple of hours consisted of nothing more than me messing around with the television that was above the bed, flicking through the TV & radio channels trying to find something to take my mind off things, the boredom of just being sat in bed, the worrying about what the consultant might say. I just needed an escape, but I wasn’t going to find one, not on a busy ward & certainly not with Sunday television!

 

After a lady came round to take my lunch order, a nurse came in to let me know that I would possibly be going for a repeat CT scan at some point through the day. It was explained that the consultant would need to have a new scan of my brain to compare it with the one taken when I was first brought in the night before. Although apprehensive (nobody likes having scans), I knew that it was something they would need to do.

 

At lunchtime my mam arrived at the hospital & asked how I was, what had happened, did I need anything...you know, just generally fussing like mothers do. She had also brought me two drinks, two bags of crisps & a sandwich from the hospital shop. I told her that I had not long since had breakfast & would be getting my lunch shortly, to which she said “well just keep them in your drawer for later”. A typical mothers response! As my dad had to be at work later in the day, he left shortly after my mam arrived to go & have a lie down before his shift.

 

I asked my mam why I couldn’t get through to her during the night & she explained that she & my sister had both set their phones to ‘silent’, something, she said, neither of them ever do. Just my luck that they decided to do it last night then!

 

A little later the consultant came to my room...the mystery consultant from the iPad during the night. She had seen me but I had not seen her, until now. She joked that she had turned the viewer off on her side as she thought I had been through enough & didn’t need to see what she looked like in the early hours of the morning. She done the usual tests on me – gripping her hands, pushing/pulling her, lifting up/pushing my legs down, touching her finger with my left index finger etc. She also explained about potentially having a repeat CT scan during the afternoon & told me what it was for. She asked if I had any questions & then went to finish her rounds on the ward. Not long after this my mam went – she was also due at work later on in the evening but, as she worked at the hospital, said she would be round again to see me later on when she had a break.

 

Just before teatime a porter came to my room, asked if I was Paul Elliott &, when I confirmed, he said that I was being taken for a scan down at the X-ray department. This was it, the first of what would be an extensive & exhaustive set of tests & scans to come.

 

I shuffled myself out of bed & onto the porters chair, unplugged the telemetry again & we set off – on the way out I mentioned to one of the nurses that the beeping was because I had disconnected the wire again. As I was being wheeled around the corridors, as it had been the previous night, I didn’t recognise any of this part of the hospital. I knew where the X-ray department was, I had been there numerous time, but this place was unfamiliar to me. After a few twists & turns down the corridors we arrived at a lift. I don’t like lifts at the best of times as I always feel slightly claustrophobic inside them, but when you’re sat in a chair when your arm & leg don’t work properly & you’re already feeling anxious about having a scan, it intensifies those feelings.

 

When we got there the porter dropped me off in the waiting room, said he was going to inform them I was here & that he or one of the other porters would be back afterwards to take me back to the ward. After a five minute wait someone came to wheel me into the room with the CT scanner. A radiographer came over to greet me...it was the same lady that was working the previous night! She said it was nice to see me again & asked how I was & I told her I was feeling better than I was the last time I saw her. She explained to me again about the procedure – that I would be having a repeat scan of my brain for the consultants to compare to last nights. I slowly moved from my chair onto the bed of the scanner, got myself into position with my head on the headrest & told the radiographer that I was ready to start & she went to her room to perform the scan. CT scans are quick & painless procedures, & this one was a lot calmer than the previous one, but I always feel tense & nervous when I have them.

 

After the scan was over the radiographer wheeled me back to the waiting area & she said she would let the porters know I was ready for them. She wished me well & said that the results of the scan would be made available to the consultants as soon as possible. After a wait of around five minutes a porter arrived to take me back to the ward. Again I was wheeled down the unfamiliar corridors, unfamiliar but which were becoming more & more familiar to me, & I was dropped off back in my room – I noticed that while I was out my bed had been stripped & changed, a welcome sight. I got out of the chair, manoeuvred myself back onto my bed & connected the telemetry back up.

 

Also while I was out, I had missed the lady coming round taking the teatime orders so one of the nurses had chosen for me...not bad choices either, ham & cheese omelette, salad & chips with strawberry yoghurt for after.

 

After I had finished my tea the boredom of being on my own in my room crept back up on me so I started flicking through the television & radio channels & playing on my phone...just trying to find something to do to pass the time & take my mind off things. Again, it just wasn’t happening for me. A little later a doctor came into my room to let me know that they would review the results of my repeat CT scan in the morning, & that I had been booked in to have several other tests tomorrow. They already knew WHAT had happened, but these tests would help them diagnose HOW it had happened.

 

From Monday, putting the pieces of this puzzle would begin to move at pace...

 

Part 3 - Thrombolysis & the longest night...

Amidst the chaos of everything happening around me in Room 5, the nurse asked me a question as she was leaving the room, something that I had completely forgotten about – “Does anyone know you’re here yet honey?”. “No”, I answered, “I was waiting to see what was happening first”. As I didn’t originally understand the seriousness of what had happened to me, I thought I might be taken home after a few hours!

I had my phone with me, it was one of the few things I had gathered together & put in my jacket pocket before leaving my house on the advice of the 999 operator, along with my phone charger & house keys. I unlocked my phone, scrolled through the contacts...’Mam Mobile’ (I am single & live alone so there was no girlfriend/fiancée/wife to call). I pressed to dial & the phone started ringing...& ringing...& ringing. No answer. The nurse had came back into the room by this time & asked again if I had managed to get through to anyone – not yet I told her. “Keep trying, or if you need to, we can do it for you”. I thanked her & said I would keep trying.

Attempt’s two to six – still no answer. My mam was staying at my sister’s house that night, so I tried her – again, no answer. Right, this wasn’t looking good. I’m in hospital having had a stroke & no-one knows I’m here. A little bit of panic set in...I really need to let someone know I’m in hospital incase something happens. I picked the phone up again & tried my dad, who I knew could be at work as his shift is 6pm-2am. It started ringing & within a few seconds he had answered.

“Hello?” he started, a little confused I was calling at this time.

“Dad, I’m in the hospital, North Tees”.

“What’s happened?”.

“I’m on the stroke ward...”

“Right, I’m coming now. I won’t be long, I need to drop my things off at home & I’ll be over. What ward are you on?”.

“Ward 41”. There was now relief that someone finally knew where I was.

 

That phonecall lasted no longer than a minute, but as soon as I got off the phone I was being told that I was to be thrombolysed...I had no idea what that was or what it meant. The doctor who was in the room & the consultant on the iPad started explaining it to me, a lot of which was lost on me in the blur of how fast things were moving. The main parts I can remember are them telling me that I would need to be injected with a clot-busting drug that would break down the clot which had cut off the blood flow in a part of my brain. There was a risk of bleeding, higher in some than others, but as mine was an ischemic stroke, it was far safer to do than if it had been haemorrhagic. I took in what I could & agreed for them to do it...what choice did I have. The nurse who had been there from the start was still there standing next to me, telling me that the doctors knew what they were doing, that they were specialists in stroke treatment. She gave me a reassuring smile & left the room again to organise what was about to take place.

 

Before the procedure started obs were taken again – blood pressure, temperature & heart rate. Then I was to experience first-hand the miracle of modern medicine.

 

It was explained that the first lot was to be injected directly through the canula in my arm & the rest was to be fed through an IV drip over a period of time – I don’t remember off the top of my head the amounts or times, I’m sorry. The nurse measured out the dosage to be injected, spoke to the doctor & we were ready to start.

 

The first dosage was injected, I believe, at around 12:40am. The timeframe for this to be at its most effective is within four & a half hours of your symptoms starting – mine started at around 8:30pm so we were well within the time. I say we, what I really mean is the amazing team of NHS workers who went above & beyond that night to make sure I had the best possible chance, even though they would all tell you they were ‘just doing their jobs’.

 

The remaining dosage of the clot busting medicine was set up on a drip & attached to my canula, & the nurse set it to feed through over a set time period. She mentioned to me again about the risk of bleeding & to let her know if I experienced any. I don’t know if it was just due to my senses being heightened, but I remember I started to taste blood. I felt around my gums – nothing. The taste was still there a few minutes later, I felt my gums again & there was a little blood. I told the nurse, she had a look & said that it was nothing to worry about but would keep an eye on it. In my own head I thought it was probably caused by me probing around looking for something that wasn’t there.

 

While the medicine was being fed through the drip, it was time for my obs to be taken again – this would happen every 15 minutes throughout the night & into the morning. And every time someone came to take them they apologised & I had to keep telling them it was fine. They were apologising to me for doing their job!

 

By now the drip had run its course, & the nurse was disconnecting it from my canula & it was at this time that the consultant on the iPad asked if there was anything else the doctor needed, he answered no & so she disconnected from the call, but not before wishing me well & letting me know she would see me in hospital. The nurse spoke to me for a while, asked me how I was feeling so I told her I had a bit of a headache. She asked me where on a scale of 1-10 I would rate the pain it was causing. Around a 5 or 6 I told her so she went to get me some paracetamol & a cup of water to help to ease it.

 

It was around this time that my dad arrived, one of the other nurses working on the ward had met him & brought him through to my room. He looked a bit concerned seeing me laid there hooked up to the telemetry, had it been the other way round I think I would have too as it looks worse than it is with all of the wires. He put his jacket on the back of the chair & sat down. There was a brief silence as neither of us really knew what to say. I asked him how his shift at work was & he asked what had been happening so I explained it to him as best I could. Not long after my dad arrived it was time to have my obs taken again &, as with almost every other time, she apologised. After a few times it was kind of a running joke between me & the few different girls who were coming in to take them, & they mostly apologised when they woke me up when it was time to do them again. This was the longest night I had ever experienced & sleep is not a word I would use to describe what I was getting – the odd few minutes I maybe got in between the 15 minute intervals of getting my blood pressure, temperature & heart rate taken.

 

The nurse came back into my room to check on me, ask if I was feeling ok & if my headache had subsided. I told her it had died down a bit & she smiled, then she looked over to the other side of my bed where my dad was sitting/sleeping & commented that the chair he had wouldn’t do & so she left. About 10 minutes later she came back & wheeled in one of the biggest chairs I’ve ever seen in a hospital, it was huge! It was like a big sitting room type chair on wheels...with massive cushions...that reclined. I joked with her that I would swap my bed for it as the remote on my bed was a bit temperamental.

 

In between having my obs taken every quarter of an hour, nurses in & out of my room checking on me & my dad fidgeting in his chair trying to get comfortable, it was hard to get any sleep. I closed my eyes in hope but nothing much happened, there had been too much for me to process. Sleep was probably something my body needed, but on this particular night, it just didn’t look like it was going to get it.

 

Behind the blind covering the window in my room I could now see the morning light starting to break through, then I looked at the clock on my phone. It was now nearly 8am & I could see that the night staff were doing their handover to the day staff.

 

A little while later there was a knock on the door to my room, it was one of the staff coming round to ask patients what they wanted to order for breakfast. I asked her if I could just have some toast &, with that, was the end to my longest night.

 

What followed next would be the consultants & doctors mission to find out what had caused me to have my stroke. And no stone would be left unturned...

 

Part 2 - Arrival at hospital, Ward 41...

As we set off, the paramedic who was with me in the back of the ambulance was trying to reassure me that everything was fine & making sure that I was as calm as possible so not to increase my blood pressure, which at the last check just before we left my house was 186/100...in other words, Hypertensive Crisis!

The journey from where I live to North Tees Hospital should take around 10-15 minutes on a good run at night with little-to-no traffic. However, this was no ordinary night & it seemed like we were driving to the other end of the country, when in reality it will have been no longer than 15 minutes.

Throughout the drive, the paramedic who was with me in the back of the ambulance kept turning around & talking to her colleague who was driving through the window...she still seemed concerned with something. As I was strapped to the bed I couldn’t sit up to see properly, but I could make out that she was gesturing something through the window. When she turned back around in her seat she asked me if I was feeling ok & flashed the light in both eyes again to make sure they were still responsive & reacting the same. Then the ambulance stopped.

We had arrived at the hospital, at a different entrance to the ones I had used previously. The paramedic who was driving had come round to open the back doors of the ambulance, while the paramedic in the back with me was unstrapping me from the bed & helping me to sit up – because of a combination of what had happened, my high blood pressure & the panic I was in, I was feeling a bit dizzy & disoriented when I got up. After a few seconds the paramedics helped me down the few steps & into a waiting chair & I was wheeled through the automatic doors & down a corridor. I didn’t recognise this part of the hospital.

We were met there by the nurse, who had answered the phone to the original paramedic earlier in the night, & the doctor who was working that night. As the paramedics were explaining everything to them, I was asked if I could manage to get myself from the chair I had been brought in on, onto the bed that was waiting for me. Obviously not thinking about what had happened I said yes, not fully aware of the effects the stroke had had on me. I stood up on unsteady legs & done my best to manoeuvre myself onto the bed. I sat down & tried to swing my legs on...I needed help to get my left leg up. I tried to shuffle over to get myself more comfortable...my left arm gave way when I tried to put my weight on it.

The paramedics left & wished me well, leaving me in the care of the nurse & the doctor. They pulled the curtain around the bed in the corridor while they examined me & asked me some questions – what was my name, my date of birth, did I know where I was. Things that might seem silly to some, but essential to find out if my brain was functioning & could remember such obvious things. Thankfully I could give the answers they were looking for.

After around 10 minutes, I was wheeled around to the X-Ray ward. I had been here a few times previously, but not in the room that I was taken to this time. It was explained to me that I was going to have a CT scan of my head to see if they could see if there was a clot or a bleed in my brain...the word ‘stroke’ had been used on a few occasions from the paramedics arriving to getting to the hospital, but hearing the words ‘clot’ & ‘bleed’ used in the same sentence as ‘brain’ is when the severity of the situation really hit me. This was a lot more serious than I had actually realised.

I was asked if I could manage to stand & get myself onto the bed of the CT scanner. The same as before I said yes & gave it a try. My left arm gave way again & I couldn’t quite manage to swing my legs on...when would I learn!

The lady who was going to take the scan came over & introduced herself, although I can’t for the life of me remember her name. I do remember that she called me by name which was quite comforting in a way, to know that she had read my notes & remembered my name. It wasn’t the usual ‘Mr Elliott’, she came over & said ‘Hello Paul, how are you? We’re just going to take a scan of your head, it won’t take too long’. Strange how you remember those little details. She explained the procedure of a CT scan to me, asked me if I was ok again & then went to the control room to start the scan.

I remember the feeling just before the scan started – everyone else had left the room because the scanner emits radiation & I was on my own for the first time since the first paramedic had arrived at my house. I was frightened, but when the nurse asked me if I was ok over the intercom, I answered yes as I knew that this scan could be essential to the diagnosis & subsequent treatment. I had been feeling frightened since this whole thing had started, what was another 10 minutes.

As soon as the scan was finished I was helped back onto my bed (they didn’t even ask me this time), & was wheeled through the hospital corridors, still none of which I recognised, & into a lift. In the lift the nurse asked me if I was ok, did I have a headache...she asked me numerous times even though we were only in the lift no longer than 3 minutes. She was calling me ‘honey’, however, due to her accent (she was Filipino), it sounded like she was saying ‘Annie’. This is something that, during my stay in hospital, we both had a joke about, but more on that in later posts.

From the lift it was a short distance to the ward...’Ward 41: Stroke Unit’. The nurse opened the doors with her pass & we made our way to Room 5, the room I would be treated in.

I was transferred from the bed I had been brought up to the ward on & into a ‘proper’ bed. As soon as I had got in, the waiting team of nurses & HCA’s had me hooked up to the telemetry machine, had a new canula put in, & I had my obs checked – blood pressure, temperature & heart rate, something I would have to get VERY used to having done.

As I laid there waiting, the on-call consultant, who wasn’t in the hospital that night, was video-called on an iPad & she was brought up to speed on everything. She could now see & hear everything that was going on in my room, although we couldn’t see her as she hadn’t enabled the view from her side (she joked with me days later that it was because I had been through enough & didn’t need to see what she looked like in the early hours).

As everyone was rushing around, the nurse who had answered the phone to the paramedic earlier in the night & had met us on our arrival at the hospital rarely left my side. I have said this to many people since what happened, but I truly believe that she was meant to be at work that night, she was meant to answer that phonecall, and I am thankful every day that she did. I do believe that we have people watching over us, but I really believe that she was my guardian angel that night. I still tear up a bit when I talk about her as I honestly believe that her talking to the paramedic & her instinctive reaction to what he was telling her led to the chain of events that followed that helped to save my life. I will be forever grateful to her & everyone else that looked after me, not just that night but throughout my stay in hospital.

Every few minutes I heard the consultant on the iPad asking the doctor if the results of the CT scan were available yet. They weren’t so she asked him to chase it up as a matter of urgency as there was only a window of 4 & a half hours from the stroke happening for the thrombolysis treatment to be fully effective. I hadn’t heard of this before but by the end of this, my longest night, I would know all I needed to know...

Part 1 - I'll start at the beginning...

 Saturday 21st January 2017 is a date that will live with me forever. It is the day my life changed.

 
The day started off the same as every other Saturday. I got up at 8:30am,my usual time, ironed the clothes I'd washed the night before, had a quick tidy around the house before making a list of shopping I would need to get, grabbed my glasses & car keys & left early to try & avoid the rush.
 
On my way home I called round my sisters house to catch up with her & my two nieces (Millie, 10 & Ava, 4), something I do every Saturday. I spent a bit of time round there playing & finding out what they'd been doing at school that week.
 
But that's where the similarity with every other week ends.
 
At about 8:30pm I was walking downstairs after going up to get my phone which had been charging. As I got halfway down I completely lost all control, movement & sensation on my left side - my phone was in my left hand & went flying, hitting my front door. My leg buckled, so it was a good job I was almost at the bottom by this time. Then my face started to feel tight, like there was no give in it. I know one of the symptoms of a stroke is one side of the face falling, but I live alone & was in too much of a panic to look in a mirror to check.
 
I stayed on my feet as best I could, trying to 'walk off' whatever was happening to me - this lasted for about 20 minutes but it felt like the longest 20 minutes of my life. My heart was now racing at a rate I had never experienced before & absolute panic had set in. I tried to stay as calm as I could, trying to breath in through the nose & out through the mouth to regulate my breathing, which at this point was all over the place.
 
After approx. 10-15 minutes the feeling & movement had returned to somewhere near normal - I had a drink of water & sat down to resume watching the TV. Then after 40-45 minutes it started again...
 
It is hard to describe this to anyone who has not experienced something like this before, but as I was sat watching the TV I started to see what I described to the nurses as 'swirls & spots' in front of me. Then everything that had happened the first time was happening again - the loss of movement & sensation on my left side, the tightening of my face, but this time there was a headache aswell. A horrendous pain that did not last for long, but certainly made its presence felt!
 
That's when I knew something was really wrong & I immediately called 999. I had seen the adverts on the television about strokes but had always assumed that they didn't happen to people as young or, seemingly, healthy as myself.
 
The lady I spoke to was great & was very reassuring. She took all of the necessary details from me & assured me the paramedics would be with me as soon as possible, letting me know where they were in relation to my house constantly. As I was in such a panic I asked if she could stay on the line with me &, without hesitating, agreed & attempted to help me stay calm. She also made sure I had gathered a few things together incase of a hospital stay, & made sure I had unlocked the door for the ambulance.
 
The first paramedic arrived after around 15 minutes, one of the 'Rapid Response' vehicles. He came in & asked me what he been happening, so I explained everything to him. He then took my blood pressure, done an ECG & took a blood sample from me to check my blood sugar.
 
I am assuming he thought everything was ok as he radioed back to say that he could 'deal with this one himself'. However, as a precaution due to my symptoms he called the Stroke ward at North Tees Hospital, & I am thankful every day that the nurse who answered the phone that night was working as she obviously recognised what was happening & told him to have me brought in as soon as possible. He then radioed back again to request an ambulance to take me to the hospital.
 
When the ambulance arrived, two female paramedics came in & were updated by the first paramedic on what had been going on & how the hospital wanted me brought in ASAP. They then started flashing lights in my eyes to check how responsive they were, & looked a little concerned - you know how you catch a glance between two people & know when something is wrong? Well that's what I saw.
 
They helped me to get my things together, & one of them walked with me as I was quite unsteady on my feet as I still hadn't regained proper use of my left arm or leg. When we got into the back of the ambulance I was sat down on the chair, the light flashed into my eyes again & I was asked some questions repeatedly...they were wanting to see if my answers changed or if I faltered anywhere. After that I was asked to lie down on the bed & was strapped in as we made our way to the hospital where the next part of my night would begin, against the clock.