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
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
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
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
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.
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 
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
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.