This thing keeps kicking back

Share your story Recovery journey
1

Hi everyone,

First time post, I suffered a stroke back end of March this year affected by left side but I am very lucky my movement returned quite quickly. Thought I could get over this thing but suffered from fatigue and tiredness I was taken unwell again in June admitted to hospital this time result of my blood chemistry being low, mainly my Phosphates levels dropping to dangerously levels. I have been back in work for 4 months on a phased return and most days I am tired but today suffered a kick back and now so fatigued. I just wondered if other survivors suffer the same symptoms when on days you feel you are getting better then out of the blue you get a reminder that all is still not okay.

2

Hello dkr100 and welcome to the forum where I’m sure you will get lots of support. 

I had a stroke (a lacuna infarct) in February and I’m really struggling with stroke fatigue (SF) which I’ve had for a while, but have had every day this week. I am retired and find the fatigue, which comes on suddenly, hard to manage so I don’t know how you have returned to work so soon. From posts made by stroke survivors who had strokes a few years ago you will see that SF can go on for a long time and hits you when you least expect it. 

You need to rest as much as you can and as you are back at work I would let your employer know how you are feeling and that you may have gone back to work too soon. 

Do try and read others posts on here, you will find them very helpful, we all seem to have similar problems.

Continue to be positive, I’m sure that helps.

Ann

3

fatigue is one of the hidden disabilities for stroke survivors. I am over two years post stroke and it still comes in episodes that can last anything from 2 days to 3 weeks. I am just at the tail end of a three week one. I managed to get back to work though it has not been a happy experience at all. managing fatigue has been quite a challenge. I keep a log  to try and identify what triggers it. I haven't mastered it by any means but I know that if I start with what I describe as mild, I can get through a fair bit without knocking myself back too far. I am careful to avoid pushing it if I  have had a few good days. though work demands dont always allow me to manage time in the way I need. I have found it very hard to discuss my condition with my employer, because at one stage I suspected they wanted to manage me out of the job rather than support me in. so I have been reticent to discuss fatigue with them. I work part time and have some flexibility so mostly I can manage without having to discuss it too much. so far I haven't had to have time off as a direct result of my condition, only had a few sick days recently when I had a bad cold  other colleagues also had to take time off. this is an unfortunate issue for disabled people, a high proportion of my employed disabled people conceal effects of their impairment from their emplyer for fear of losing employment. that has certainly been the case for me. the pressure can be subtle. for me it was an increased focus on  performance management. all within the law, but oppressive nonetheless.

anyway I seem to have ridden out that particular storm, and look forward to further fatigue free days, which come around as unexpectedly as the fatigue episodes themselves  I am living with quite severe left sided weakness so walking iis a huge effort. I have no function at all in my left hand which is the most frustrating thing ever. I have had some treatment to reduce the spasticity so it isnt permanently flexed in a fist as it was a while ago. I remain hopeful that I will recover some function. one small change that gave me a boost recently was recovery of a bit of strength in my voice  the stroke affected the strength of my vocal flaps, the right sided one, the wiiring is the other way round for vocal flaps. I have a senior leadership role in a small charity and often have to conduct large meetings, so this has put strain on my vocal ability. fortunately I was not affected in language, so I can find words ok, I have had problems with processing speed so activity like this always has a fatigue pay back because it takes a lot out of me  I am able to schedule in rest days andI I am quite strict about my time.

hop some of this helps. keep in mind that things change. never quickly  for us it is slow slower and slowest. 

thanks for the post 

best wishes 

Tony 

4

Thank you Ann for your encouraging words. I think at times i’m In denial, i was 53 when it happened relatively fit, non smoker and rarely drank alcohol. I forced the issue to get back to work but to be honest I struggle mosts days and my round trip to work and home is over 3 hours, so I guess that doesn’t help. My employer to be fair has been very understanding. I am very positive and see the best in everything but this has got to be the biggest challenge I have faced and sharing my story helps knowing its not just happening to me. My wife knows i’m a stubborn bugger but I need to understand this thing is going to take time.

Thank you.

David.

5

Hi Welcome aboard.  Stroke fatigue is something that almost all stroke survivors feel is the hardest to explain to others.  As it is nothing quite like just being tired.  It comes and goes whenever it wants, so you can think you are doing well then boom SF hits and you feel rotten again.  I think maybe you returned to work too soon,  I had my stroke in Aug last year and only returned to work part time in September this year.  I still continue to suffer from the fatigue and when this happens i notice that I find my processing slower and getting the right words out takes a little longer, but on the whole like yourself I got the use of my body back almost to normal.  However the distance I can do when walking is much reduced.  Anyway listen to your body and rest when you need too. Wendy 

6

Regret to say that many of us are kicked by this wretched stroke fatigue (medical term is post stroke tiredness). If you can work out when you are sleepy tired and when it is stroke tired then I suggest you will cope better. It is essential that you rest when the stroke tired arises. And of course your brain needs extra water. It is bubbling away inside your skull and needs liquid to cool down.

Many of us land back at the hospital for one reason or another.

I am in awe that you are back at work. Not many of us manage that in the first year let alone in 4 months. I have read this forum for a long time and most SS can not return to work until 9 month. Excellent that you are on a phased return. Gives you a chance.

Many of us struggle to know just what we are returning to. It isnt returning to our pre stroke life, thats gone and is not coming back. A new life awaits us. I think you have recovered better than anyone else. Well done.

Colin

7

Being positive. Smiling. Are two essentials and you are doing both, well done. Most of us were fit. Otherwise we would not survive. We are the special ones, we have been given another life.

That commute is a big pity. It must be taking a huge toll on your energy levels. 

How I envy your achievements. It is a real boost to hear from someone who has overcome this nasty disability.

8

Tony,

Thank you for your reply, believe me it really helps. I count myself very lucky that the issues I have been left with are minor compared to yourself, so it’s encouraging to read your journey and the strength I can take from that. I was 53 when it happened relatively fit, never unwell so it came as a bit of a shock and I fought back at it but realising it is a battle I cannot win at the moment. I have a positive outlook which does help but can be a hindrance at times. My voice becomes hoarse when tired due to my vocal muscles were damage and I Stutter and wobble like an emporia king penguin when tired too, but the fatigue is something you cannot explain to people who have not experienced.

Best wishes.

David.

9

I am nearly three years post stroke and fatigue kicks in every day around noon. It requires an hour’s rest and then I can last till 11pm. It is frustrating, but I have learnt to live with it. The brain probably needs to rest. I also have left side weakness so am partly disabled. No point in complaining, because at least I’m still alive. Hope things improve for you.

10

Hi John,

Thank you for your reply. I’m sorry to read the fatigue you suffer everyday. I count myself very lucky with the minor issues the stroke left me with. I was 53 relative fit, when it happened, never really unwell so it came as a bit of a shock to me. The fatigue is really something else which unless experienced, is something difficult to explain. I wish you well in your recovery and the positive outlook you have.

David.

11

Hi Wendy,

Thank you for your reply.

I do count myself lucky with the minor issues my stroke left me with but have found other things presenting themselves since returning to work, mainly when tired. My concentration levels, the stuttering of words, walking like a penguin to name but a few. I was 53 when i had a stroke and prior to that relatively fit and really never unwell so it came as a bit of a shock. It is encouraging to read other stroke survivors experiences and their journey it makes you feel you are not alone, Keep strong.

Best wishes

David.

12

Colin,

Thank you for your reply and kind words. Most of the time I Kidd myself thinking I can bet this thing and returning to work was me pushing to get back to where I was before my stroke. 8 months on i’m beginning to realise it is not an easy fix, but I take encouragement from yourself and other stroke survivors on this forum.I do have some medical issues but we have all survived, and in doing so, can still give back so much to this world, family and friends.

keep strong.

David.

13

Yes definitely. Some days I feel good and then the next i can feel down or suffer from fatigue. It is very random and very common part of rehab. It is also dependent on if I get a good nights sleep.

i am going back to work mid January snd have mixed feelings about that. 

Yes you are definitely not alone here.

sandy

14

Dear David

We need to believe we will improve. Thats positivity. If you try to kid yourself then I think you are being positive, so good for you.

I reserve judgement on the prompt reurn to work. I dont know the answer. Maybe your recovery would have been less good if you hadnt gotten back to work. Who knows.

I have adhered to the rest and more rest syndrome. I seem to have come through the worst bits but at three years I am still disabled.  I couldnt manage an office or factory job.

We do need to revise our goal to be the best we can, but we cant get back to what we were. Its impossible. Our brains have changed so no way will we be the same again. Maybe the new David will be better than the old David, You will not be the same. I struggle to see where new Colin will land up. I do voluntary stuff. Wait on tables, make tea and coffee and I also have a small admin job for the derelict church graveyard. At the moment thats my lot. Family have run for the hills and I cant make new friends, well not yet.

So I smile a lot. I am positive, especially in respect of my rather large garden and I try to befriend some of us SS who are in a bad way.

Agree....Keep strong

Best wishes

Colin

 

 

15

your positive approach will serve you well. advice I had for voice included hydration. I was surprised to learn how easy it is to become dehydrated. I have found that paying attention to that not only has helped with voice but also with fatigue, a little anyway  I was 57 when I had the stroke. like yourself fit, able bodied. I had just completed a 110mile walk with full camping gear. so felt it particularly cruel as walking was one of the things that gave me great joy. and I had been looking forward to tackling other long distance trails. sadly this is not to be, at least not in the way I had envisaged. I will get out to the hills somehow but I have accepted that I won't have that sense of freedom striding out under the open sky. Well I am not sure quite how fully I have accepted it yet. I have certainly come to an acceptance of myself as disabled. as such my experience will be different to how it was as an able bodied person   different but I think not lesser. I am still exploring this as I try to understand and live with what has happened to me.

good to talk with you 

Tony 

16

Hi Sandy,

Thank you for your reply. It makes you feel not so alone when you share your journey with other stroke survivors. Fatigue unless suffered is very difficult to explain, family and friends see you are unwell but do not fully understand what you are feeling. Good luck on your return to work and on days you feel better, do not push yourself to hard.

keep strong.

David.

 

 

 

17

Hi Colin,

I have read a lot of your replies on the forum and you really are an inspiration, you are absolutely right, our brains have changed. Lets keep in touch through this forum.

Best wishes 

David.

 

 

18

Yes please, I would like to keep in touch.

Colin

19

A lot of the problem is a lack of understanding of the affect of a stroke. You can see a cut, or a bruise or a broken leg. But you can’t see what is going on in a stroke survivor’s head. It can change frequently And it makes us feel worse, frustration, fear, anger, short fuse, and tearful when a moment earlier you were fine. And then you take it out on the ones you love and that makes you feel worse because that’s just not the person you were

i find getting out of the house helps, being active, gentle exercise, taking a rest when I need to. When I am out walking I sometimes pop into a pub if I am lonely and have a soda and lime, chat to whoever is there, and not about strokes.

Keeping busy doing little jobs. Today I replaced and rewired  the light in the garage, without any difficulty, I punched the air when I switched the power on at the mains and the lights worked. 

I try to  get a good nights sleep, that is so difficult sometimes, when I had my stroke I was scared if going to sleep in case I didn’t wake up. If I struggle to sleep I get up and go downstairs and dose to music. 

I am lucky, I am slowly getting better. Sight is better now and I am hopeful I will soon be able to drive again. Dark moments are fewer. Less Headaches and giddiness.

The doctors and consultants are pleased with my progress and a return to work is on the cards for early next year. It’s not going to beat me, the doctors can’t cure what I have got, the brain may repair and relearn a little bit and I will change the way I live my life, worry less about work, manage stress levels, be more a little bit more selfish, watch my weight, exercise and try to relax and watch my stupid high blood pressure which put me here.

i hope this helps please respond if you want to chat. 

Sandy

 

 

 

 

 

20

Well said Sandy. I agree and empaphise with all you have written. I often use the analogy with an amputated leg. But your point is spot on, others can not see inside your head. 

It is, I think, better not to mention we have had a stroke and that way friends might be made. Still not certain, because I need to excuse myself from a lot of physical things. You are spot on when you say to chat but not about strokes.

Colin