First time of posting - my story so far and seeking some reassurance/advice

Hi All - long post alert - sorry!
Having been a silent observer on this site since my stroke on the 24th May and having received a huge amount of information and inspiration from you all, I thought it was time to share my story and seek some advice please.
A bit of background to start with:
I’m 51, but my ‘colourful’ medical history starts way back when I was 16 and diagnosed with testicular cancer that had spread aggressively throughout my abdomen and lungs (stage 3). After 21 cycles of chemo (in for a week of chemo 24/7, then out for two weeks to recover - then repeat), I spent 40 weeks in hospital over an 18m period and finally got the all clear just before I sat my A level exams. I started work shortly after.
Within a year I was told that the toxicity of the chemo had damaged my kidneys, which were now functioning at less than 40%. Within three years this was classed as ‘end stage renal failure, with function being less than 15%. I continued to work full time for the next 18yrs until finally having a transplant (pre-dialysis) in 2008.
I’ve been incredibly lucky that I was able to continue to function normally and enjoy a reasonably successful career during this time. The transplant also continues to work really well.
Since the transplant, I’ve had multiple skin cancers removed (a common problem for transplant recipients due to the anti-rejection meds we take which compromise our immune systems).
I also went into Septic shock 3yrs ago, collapsing on the floor of my GP surgery with no detectable heart rate or blood pressure. It took a few months, but I bounced back reasonably quickly.
I then suffered my stroke (Left occipital lobe) in May, with initial symptoms being loss of vision in my right eye, and loss of use of my right arm and right leg.
Again, I was very lucky (my wife says I have nine lives!) in that I was at a work conference just round the corner from Salford Royal Stroke Unit, the paramedics got me there quickly and I was thrombolysed within a few hours. It took a few days to recover my sight and movement, but within two weeks I was physically functional again so thought that I would bounce back quickly, as I’ve always been lucky enough to do before. But this one feels different…….
I’ve always tried to keep fit and healthy. I watch what I eat/drink and try to get plenty of excercise. The week before my stroke, I was mountain biking in Wales and did 33 miles one day, 25 miles the next - then drove home to Leeds. On average, I walked our dog an average of 4 miles a day, plus did some additional exercise on top of that (gym, yoga etc) - oh, I’ve also got a slipped disc and trapped nerve in my back!
Since my stroke, whilst I can physically and mentally push myself to do some of the things I used to, there now always seems to be a hefty price to pay in the following days - sometimes even the same day. I’d never really understood what fatigue meant until now. I’ve realised I was always just ‘tired’ before my stroke.
My concern is that the fatigue doesn’t seem to be improving. I’m 5 months post stroke and had hoped to be back to work after 6 weeks, then 2m, then 3M, 4M, 5M. I’m now targeting a return next month (6 months post). Again - very lucky in that my employer has been incredibly supportive and are happy to a phased return over 8 - 12 weeks if needed, however as I sit here today, I’m no longer confident that I could get back to working the hours that I used to in a very mentally demanding role - or that if I tried, the price of doing so could negatively impact my health.
My question is “how have others found their return to work journeys, particularly around managing the fatigue element”. The optimistic part of me hopes it will improve over time, but I’m not feeling any significant improvement at the moment. Any experiences you can share would be greatly appreciated. Thanks, Ian

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The general view is that stroke eases with time. My big stroke was nearly seven years ago and fatigue hit me hard on the dAy I came home. I now feel fatigued around noon, but an hours rest sorts it out. I am then fine till bedtime at eleven thirty. I do rest between tasks however and try not to do too much in one day. But I am much older than you. Good Luck!

@IanJ thank you for sharing your story. You have had many mountains to climb in uour life and i think your wife is right about 9 lives. You are amazing to get through all that and your strength and determination shine through.
Post stroke fatigue hits pretty much every stroke survivor by seems of it. I had a left occiptal lobe stroke and left parietal lobe. Like you i thought i’d be back at work quickly. I am now 11 months in and not yet back at work although hope to be very soon. I found my fatigue was awful for around 7 months after which is strted to improve. I still have to be careful though - a foray into sorting the freezer 2 weeks ago made me ill for a week. Your fatigue should improve and timescales are different for everyone. I was advised by many medical people that i should take as long off as i can; particularly as my job is very very busy deadline driven role. I would offer you that advice too. If you do go.back make the most of your phased return, ensure you take regular breaks & pace yourself. Best of luck x

Hi @IanJ & welcome to the forum officially (now you’re out of cover). I did exactly the same thing by reading the posts for a few months before finally posting myself (not literally, I wouldn’t be able to wrap myself - more on that later).

Long post warning!

You certainly sound like you’ve had a tough time over the years but have a great fighting spirit which is commendable.

I’ll jump straight to the fatigue question that you want advice on. I had my stroke in early June last year, was released from hospital & rehab on 22 June. I didn’t start considering work until early September when I started having some phone calls with my manager and a couple of colleagues (my work was very understanding). Initially it was a couple of calls per week just to chat and discuss general light hearted thing that had/were going on. This gradually increased through the month an by October I started joining my team’s catch ups a few times a week for an hour or so. I was really enjoying the distraction from my daily rehab routine. I was needed to help explain lots of things to the people covering my job & found it great to be able to do something useful (& almost as well as pre stroke). By mid November I had increased to around 20hrs per week…but even though my enthusiasm was increasing I was feeling more & more fatigued! We were heading into a busy period and I wasn’t listening to my body. I wasn’t put under pressure from my work (& my managers kept checking on me) but I think I was happy that I could still function really well at my job, even though my body didn’t work properly.

My company’s appointed OH finally got round to discussing things with me just before Christmas (I was at this point realising I couldn’t cope). We discussed how it was going & I explained how I felt I was perfectly capable of still doing my job but was nervous that I would be expected to be full time in January. She apologised that she hadn’t spoken to me earlier due to backlogs. Then said that she would have never have recommended me to be doing that many hours (20 ish) per week at this stage. She advised me and my company to scale back in January before building up over 2 months.

I won’t lie to you, I almost cried with relief at that point.

The moral of my story is, be very careful with how you build up your return to work. You have to do it slowly and you have to make sure you allow time for rest, rehab and recovery (stroke 3Rs :rofl:).

I have seen a clear correlation between increasing work brain intensity and massively increasing fatigue levels.

I’m currently taking every Wednesday off as annual leave to recover so still haven’t got the balance right. My company’s insurance have agreed to me working with a neuro OT to help me manage fatigue and also to recommend the best way forward.

I really enjoy my job and don’t want to take early retirement. I am definitely still capable of doing it and have 23 years experience. I get a real sense of purpose in a new post stroke world that has seen me physically feel like I’ve constantly aged 10 years+.

…finally, back to my point at the begining, on Sunday I had 8 birthday presents to wrap for my wife but had to stop after 4 done in a hour. So whilst most of my fatigue comes from using my brain to think at work, a simple job of wrapping presents (with one hand that has no feeling in fingertips) is equally exhausting.

I’ve probably bored everyone to sleep by now but just be careful not to get carried away when returning to work. Why didn’t I just say that and scrap the rest of my post? :thinking::yawning_face::joy:

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Thanks John. Good to hear that you are managing to ‘get stuff done’ around the fatigue.

Thanks. Sounds like we have similar jobs in terms of deadlines etc. My role also has peak periods during the month, with some quieter periods around that - but never not busy - if that makes sense! It’s good to hear that you’ve seen some improvement and good luck with your own return.

Thanks for the advice Mark. Sounds like we are on a similar trajectory in terms of our recovery and great to hear that your employers have been so supportive. My biggest fear is making things worse by pushing myself too hard. I seem to have a stubborn streak that doesn’t let me admit defeat or show any weakness, so I just battle through - which has worked in the past, but I’m not sure it’s the right way for this particular challenge. I’ve only just started the Occ Health discussions, which have been reassuring and positive so far - but I seem to be getting a common thread of advice of ‘not to rush it’ which I’ll have to take to heart. :+1

Hi Ian. The fatigue was the hardest thing to cope with following my stroke. Mine was 3 and 1/2 years ago when I was 46 so similar age. I underestimated the fatigue but have learnt to listen to my body. Even now it gets the better of me some days! But I know how to plan my activities and give myself rest and recovery time if I’ve been over ambitious. I had the stroke in May and didn’t attempt to return to any work until October and not to formalised hours until following January. I went back part time and still am, TBH I don’t think I will ever go back to full time . My advice is take the time you need and find out what assistance your work can give you and you should also look at the Access to Work scheme that helps you get back into the workplace . Also look into getting the Personal Independence Payment (ATW & PIP - GOV.uk). Thanks for sharing and good luck.

I think the stubborn streak can be found in a lot of us Stroke Survivors….helps and hinders us in equal measure

@IanJ hi Ian welcome to our forum but sorry you had a stroke, not to mention your journey through life so difficult with all your medical history. Your wife is definitely right about your 9 lives.

You’ll find our forum full of advice, support and very caring people.

I wish you luck in your journey of recovery. But don’t beat yourself up a stroke is a brain injury and needs time to rewire, so , when your fatigued listen to your body and rest.

Kind regards Loraine

Hi Ian,
I am new to the forum (and being a stroke survivor) so here goes…
I had my stroke 3 months ago. I was first diagnosed in Northwick Park Hospital. Then transferred to Hillingdon Hospital.
I am (was) a security specialist in IT but finding it difficult to concentrate now and the fatigue kills off any ability to hold down a job at the moment.
From what you have written above, it seems you have had a much tougher time than I have.
Good luck and I hope that all goes well for you.
Mark H, London

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WOW @IanJ that is quite some history you have there, you’ve been through the mill. Welcome to the community, it’s good you’ve decided to post.

Here’s my experience of working and fatigue, in a word it’s tough. My advice is take it slowly, very slowly. I thought it would be a breeze going back to work, I had an initial 6 weeks phased return and when it was laid out I thought ‘no problem’ that’s doable, I can do that, err turns out it wasn’t. I totally underestimated fatigue. I had to extend the phased return and build up more gradually. It’s been 10 months or so and I still can’t work full time.

When you do return, remember to keep an open dialogue with HR and your manager, it’s easy for them to forget you may have limitations once your back at work especially if your pushing yourself to do what you did previously. You must factor in short frequent breaks throughout the day, these little respites are essential .

I still suffer fatigue, some days more than others, it hard to explain to someone who doesn’t fully appreciate how fatigue affects a person, they think fatigue is feeling tired, but we know it’s so much more than that.

Wishing you all the best.

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Shwmae @IanJ, croeso to the ongoing dialogue of our persistent symptoms. You’ve certainly earned yourself a survivor badge, your survivor spirit is inspiring. I can’t really comment on returning to work as such as I am an author and sink or swim by the written word, supplemented by selling honey, dried ceps, and giving English tuition one hour a day online. Fatigue reflects how complex our brain and body is on a daily basis. Each reaction, whether it is physical or mental, no matter how simple, requires a multiple communication routine.

What has helped me manage fatigue has been pre-loading the task I am about to do. So, I run through it in a cursory way in my mind. I use a chunking strategy with each task, so break it down into steps. This gives my brain direction. I find that unsureness can equally knacker out the grey matter just as much as working it. This sometimes involves thinking ahead out loud. Resetting the brain when I start to feel even just a small amount of fatigue. This involves some form of meditative practice, not sitting crossed legged on the floor, but for me may be doing a “mindless” activity, usually tactile. I have found that if I push through fatigue, I pay for it later on, and that sacrifices time down the track.

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Hi @IanJ. Thanks for your post and sharing your story. I am coming up to my 2nd anniversary I had my stroke and I do 4 days a week at the moment with having Wednesdays off for my rest period so it is a journey for sure! Some days are easier than others and and I just want to reiterate the stroke survivors here let’s say you have to go slow. My manager and I have a weekly call or meet up just to see how I am (even now!) as it’s so varied in terms of things I can do. My advice for you is take each day as it comes, listen to your body and enjoy work and life in general as well! Best of luck for your return :blush:

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Welcome to the forum.

shouldn’t be, but I am glad to read the two hospital’s names the same as my journey.
How was your stay at Northwick & Hillingdon Hospital?

There are no words to explain the fatigue and fizzy head. when i wasn’t familiar with this forum i really didn’t understand what is going on…

It will be four years in March. i still got a very poor concentration. i miss reading books but i can’t. i came back to work very early but being on furlough did good to me. It is has been a year since i came back to work after a furlough break . Now i am really on the edge.

Thinking what can do or what kind of help i can get is frightening. So i am dragging myself.

i am accounts assistant reading invoices and concentrating on the computer is awful…in the middle of the day every number and words starts floating in front of me. Then i close my eyes and eat a little chocolate to make myself happy. … little patches to keep going.

look after yourself and stay strong.

Nadya

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no need for sorry. it is good you have shared everything. you have been very strong. the fatigue can make you overwhelmed. Make sure you take short breaks. That’s the key.
For going back to work, try to do some days in the first week and then half a day for a full week. Don’t sit for a longer period. Try to go out in the open to calm yourself. Short breaks can make a big difference.
even help you concentrate on the screen.

Self love and care is very important. Give yourself priority.

all the very best.

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