After a stroke

Hi my name is Martin. I am 64 years old.
I had my stroke in April 2020, followed by TIAs in July 20, January 21, August 21 and August 22.
When I had my stroke in April 20 I was thrombalised and I was fortunate to escape with little damage! My left side has been troubled but is now ok due to physio. My mental state is ok and cognitive issues are ok but I get tired and know I have to stop and rest/sleep! I was back at work 8 weeks after my April stroke and it was a work place incident (being shouted at by a member of staff) that I’m sure made me have a TIA a few days later due to the trauma I experienced. I was back at work about 10 weeks later but had to go off sick after my January 21 TIA! I then rested as instructed but felt I couldn’t cope with work! This did affect my mental and physical attitude! After all this time off and feeling as I did I was hoping the rest would heal me more! I was agile although I needed a stick to walk around (now after physio the stick has been abandoned) but I had another TIA August 21! This set back told me I have to slow down and that I could not cope with work mentally and physically. I then had another TIA in August this year. To be honest although I’ve been through a lot I can still move, drive and think, but I know when I get tired I need to rest. The rub is this - I know what has happened to me and how I am now but when I tell people what has gone on they say I’m really lucky, but, for a moment or two I feel a fraud and that my recovery has been so good and that by looking at me my speech and movement seems normal! My inside says different! I know when I get with a lot of people, that affects me as I want to don’t want to be there - I’m working on this and although I’m coping well I’m glad when I get home! This is a complete contrast to my past as I’ve always been outgoing being involved with theatres, bands and performing. I am only just beginning to get back to playing my guitar and vocals! If my experience gives people hope or you can advise how I feel then please do not hesitate to comment? Does anyone share/recognise my past/present symptoms? Thank you for reading.

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Hi Martin,

Welcome to the group! Please don’t feel a fraud or anything like that - I can relate to this as I can only remember nearly dying in a bad car crash, feeling strange going back to work (this was all in 1977) and I was diagnosed in 2017 (I think). I always knew things were wrong but I’ve held down employment etc and just feel extremely fortunate in many, many ways. Just stay like you are - positive! Hope your guitar playing is better than mine - I’ve been trying to learn for 3 years :rofl:

Thank you Bert! Keep playing!

@Marty1 welcome to the forum. Just as you think you’re getting there you’ve had all those setbacks. You did really well returning to work so quickly. It’s a shame that people felt it was ok to shout at you at work.
The hidden effects of stroke/TIAs are often the most troublesome & by their very nature it’s difficult for others to understand them.
I hope you get back to your music soon. Its a great therapy.
Wishing you all the best.
Ann x

This is something that I had to adapt to - the realisation that I am no longer as fit as I was pre stroke/TIA. I had to take ill health retirement 4 years ago. Since then I have had to learn to adapt to the fatigue I now experience. Anything I do now has to be carefully planned and always allowing time to rest.
I have learned to take on some new activities that are less physically and mentally demanding but are sufficiently taxing to keep my mind active.
Learning to adapt has been a long journey but has it’s rewards!

Hi Martin, Welcome to the group. I’m 57 and had my stroke back in June. I consider myself lucky as I only suffered a few physical issues and after a few days in hospital I was back home and planning my recovery strategy! I had a staged return to work after 5 weeks and seemed to make good progress, increasing my hours and doing more each week, though some days it was a real struggle both physically and emotionally. Like you some days I felt a bit of a fraud with people saying how well I was looking. I even had a nurse after a visit to have a stroke related shoulder issue looked at say " You’re the healthiest looking stroke patient I’ve met". I likend myself to a swan, all calm on the surface but frantically paddling away underneath trying to make progress back my old self. Then it all came to a juddering halt in Nov when I had an episode at work and was taken to A&E with another suspected stroke. As it turned it wasn’t another stroke just my body telling me my recovery wasn’t going to proceed as I thought it would. In hindsight I realise I had been focusing to much on the physical aspects of my recovery and ignoring what was going on in my head. I now understand much more about what is going on and the warning signs when I am overdoing things and need to stop and chillout. As my episode occurred at work my employer is supporting me a lot more than previously and I am currently off work while I get myself on an even keel, with a planned phased return to work in the New Year. Going forward I’m not sure how this will work out as my work tends to be quite stressfull and I am much less able to cope with stressfull situations since my stroke, but we shall see how things shape up.

The lessons I have learnt from my experience is that your recovery will not follow some plan where each week you get better and better until you’re back to your old self. There will be ups and downs both emotionally and physically but it you take notice of the signs when your pushing to hard and slow things down and learn to chillout you will improve and learn to adapt to the new you. Also it doesn’t matter what other people may say and think you are the only one who actually knows how you are feeling. Finally listen to the advice you are given by those close to you, often they are talking a lot of sense. I’m no musician myself but do enjoy listening to music and going to gigs and festivals, which fortunately I am still able to do.

Good luck with your continued recovery and enjoy the music.

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Many thanks that’s how I feel!

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I am learning to adapt and plan - I know I’m a bit slow answering and understanding things but I find doing word puzzles etc keeps me thinking but I know I have to stop when I feel tired with that!

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Thanks for that I appreciate it!

Shwmae @Marty1, diolch for sharing your story. Every post stroke journey is relative to the survivor, however, one almost consistent concept with recovery is allowing the brain to heal. That is also at a cognitive level, not just from its management of our physical selves. One thing I have learnt, albeit, like most a little too far down the recovery line than I would have wished for, is that by exerting the brain, it can’t repair sufficiently. It may feel like progress is being made and the brain fires up it’s synapses, giving all the right signals, but if it reaches its peak too vehemently, those synapses flicker off in exhaustion without being given the opportunity to stay on. I look at it like the difference between a cold start and a warm start on an engine almost.

I was thinking of inner turmoil tonight actually. Today was a tough day, but to all those around me, I would have looked just as they see themselves. I had to navigate around so many uncomfortable inner cognitive sticky moments, but no one would ever have guessed the trouble I felt at times throughout the day. I didn’t say anything, I was too absorbed trying to get through it all.

Glad to hear you are making some music again :grinning:

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Thanks Rups! I am understanding a bit more now of what tires me so I try to stop when I have to and my wife tells me that I should rest too!

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Hello Martin @Marty1. Thank you for posting your story. There is much I recognise. My stroke happened in July 21 as a result of an accident. I am trying to recover from the physical injuries still but no one knows what’s going on inside my head. My cognitive abilities are impaired sufficiently along with a weak left side, poor coordination and visual problems that I cannot return to employment and have gone down the ill health retirement route at 52 which is agreed in principle but still not sorted. People see me getting about and think what a marvellous recovery I have made and assume I am back to normal. I am setting myself physical challenges to give myself goals at the same as saying I can’t work and can’t get through a day without making a list of tasks to follow. I do feel like a fraud. But I can also allow myself to feel terribly proud that I find the strength every day to battle on. It is what everyone on this forum does just by facing the next hurdle knowing that there will be another, some of our own making, but mostly out of our control. You have kept going despite repeated setbacks and I thank you again for sharing your story. All the best, Julia x

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Thank you Julia for responding and I hope your recovery keeps on going!

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Hi

My names Heather and I am 62.

I suffered a small stroke 4 weeks ago whilst at work, at first I was going to dismiss the fact that my left arm and leg felt weak! I had experienced migraines with Aura leading up to this so put it down to that. After an Mri it showed I’d suffered a small stroke not a TIA as first thought, and showed an old one that I hadn’t a clue about from the past!!

I count myself very lucky as outwardly I look ok but inside my emotions are all over the place, ranging from anger one minute to bursting into tears the next. Fatigue has also been one of the biggest thing for me until this week I felt drained. I realize the symptoms I’m experiencing are all part of processes for me to work through and regain my confidence, but the biggest question for me is why, I don’t smoke, always exercised regularly, not overweight and my cholesterol not that high, so having unanswered questions makes it harder. I am worried about returning to work due to my job being stressful and since the stroke I cannot cope with loud noise or crowded places!

Thank you for taking the time to read this, it has helped me being able to express myself on this forum and put down my feelings, as I don’t think until you have suffered a stroke you can appreciate the full impact of how your inner emotions are affected which the outside world do not see.

Take care

Heather

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@Hev22 welcome to the forum but sorry you’ve had a stroke.

Everything you mention re fatigue, noise, emotions etc is perfectly normal following a stroke. I think most of us have experienced them to varying degrees.

Stroke doesn’t discriminate & being healthy doesn’t necessarily stop you having one. I was like you…probably the healthiest I had been for a long time.

Its very very early days for you & you need to take time to recover.

Don’t rush back to work if you don’t need to. Take as much time as you need.

Wishing you all the best.

Ann xx

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Hi Ann

Thank you for replying, as you say it’s still early days at the mo.

Heather x

Hi Heather, I had a stroke back in June at the age of 57 and like yourself thought myself to be fit and healthy. To date the investigations into the reason for my stroke are on going and as part of the investigation I have just been fitted with a Reveal loop heart monitor which involves a minor procedure to fit and will remain in place for the next 3 years. I now have a WiFi/ 4G connection to my Consultant via the device and its bedsude unit. This has given me reassurance that if there is an underlying issue with my heart the monitor will record it however infrequently it occurs and will hopefully provide an explanation for my stroke.

With regards returning to work, from my experience do not rush back until you fully understand the ups and downs of your condition and how to manage them, otherwise you will be setting yourself up for a fall. I had a phased return after 5 weeks and gradually increased my hours until I was full time again. I was lulled into believing I was back to normal until I recently had an “episode” at work and was rushed to A&E with a suspected stroke. Fortunately it wasn’t a stroke, and in hindsight I now realise I had pushed myself to far and had ignored the warning signs. I have also realised that mybability to cope with stress is much reduced. I am currently off work again and have hopefully learned the lessons and made adjustments so that when I restart a phased return to work in the New Year I am better able to control and manage the situation. Fortunately my employee has been very understanding particularly as my recent episode occurred at work and was a recordable first aid incident.
Good luck with your recovery.
Paul

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Hi Hev22 - I have experienced and still experience the mental issues of anxiety. The tears I’ve had to realise as a part of the healing process and the slurry of emotions of anger and tears still happen though I’m coping - I had my last TIA in August this year after not having one since August 21 - and the feelings of uselessness seem to overwhelm me sometimes! I do feel very fatigued after some activities of which I used to take in my stride. These things/feelings have changed my outlook on life and how I live it and I enjoy going away in my caravan when I can to give me a holiday of peace and enjoyment of the countryside is a bonus. I also go out walking into the countryside and have recently got back on my push bike! I’ve done well but with a real sense of what I can and can’t do, not so much physically now, but how to be ready mentally is the underlying issue! I do find my head tells me when I’ve done enough and that it’s telling me to slow down and take note! I suppose this is why I felt a fraud but there is no way I am but how I perceived myself! I went back to work about 5 weeks after my stroke and it took two more TIAs to say I wasn’t well enough to continue and to have more rest - but even with the rest I had another TIA 7 months late (Aug 21) so don’t rush back and take the time to heal. I did worry about money etc but your health is more important!
I thank everyone on this thread for their comments etc and I hope mine also help others too.

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Hello Heather, crowded places are very challenging for me too. When I go to the supermarket I often ‘freeze’ and just stand motionless while holding on to my trolley. My brain doesn’t seem to cope with all the movement around me. I sometimes get concerned shoppers asking if I am OK. I explain what is going on and generally people just give me a bit of space to move on.
I do try to go when I know it is quieter and this does help - it’s all in the planning.
I have found that post stroke activity does need careful planning and I have also learned that I must also learn to pace myself and take breaks when I need to.
Keep in touch with our fellow forum users. I often learn coping strategies on here. :slightly_smiling_face:

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I’m glad it isn’t just me! Although the feelings of crowds and their intensity didn’t happen until after my 2nd TIA!

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