In 2016, aged 38, I had a stroke. I have been battling poststroke fatigue (PSF) ever since. After about 18 months I did manage to return to work, but I am always living on a knife edge and cannot always cope. I would like any help or advice you can offer with fatigue, and difficulty concentrating and multitasking. I am also keen to find support specifically in relation to young survivors of stroke that are juggling still trying to work and look after children.
I had no risk factors for stroke, but it turned out I had a hole in the heart (PFO) which I then had closed to reduce the risk of stroke recurrence.
In 2019, aged 40, I had a stroke. Since then I am battling with fatigue but after reading about all those Bold survivors I understand it might fade away but it would not leave us.
Please don’t lose the grip you have been so bold so keep trying the moment you get when there is less fatigue or pain live it fully. Unfortunately the medication we take also makes our condition worse especially statin which makes your muscles so painful that I can't explain.
Yesterday I have to beg one off my friend to take me for hair cut because I could not look after my lovely long hair. Hairstylist question, oh what a beautiful curly hair so do you want reshape or trim. My answer shocked her I said I don’t wantnt it anymore and then I have to share my last eight months with her.
I should not say that but at least they found out cause behind your stroke. They could not in my case. I have also lost my right vision from both eyes. Can't drive anymore, if I have to read anything on screen or whatever I am like a typewriter if you have ever used it you would know what I am talking about.
So please please be strong I also have two children single mother, I work and look after the house all by myself.
Please stay in touch here, people are really really kind and very good listeners. I have learnt a lot by reading and sharing. I have been advised here to drink lots of water please try that try to drink it in day time so you can get some sleep. Which I know we hardly get it.
Also I can't do many exercises. So please walk. Best thing because we have to keep our brain happy. After that fire in our brain which is stroke and we also have to keep telling our brain we can do it together we can get better and strong may be not like before but we can live life happily.
Hope my message is making sense as I am very tired but your message made me really sad.
Hi there, my fatigue has improved a lot over the last 2 years, it's so easy to give in as it takes over, it took about 5 year for myself to feel like this. It's horrible.
the difficulties we go through, especially having a daughter it breaks my heart she has to be part of this. However, she has helped me so much with my recovery, I have to do everything at home by myself, I kind of enjoy it, keeps me busy n takes my mind of crap things. All the best
Ohhh it really breaks my heart. Give her lots of love and appreciate her all the time. My little one does help me around the house. And do tell him I love you but forgive me because when pain is out of my bearing I do shout and becomes very miserable.
I am not doing well, but what I am doing well is pretending.
I always say being busy is the blessing as well. It helps our brain not to wander away with thoughts and also helps to sleep as well. But I also notice when I am too tired I can't sleep. So moderation.
Well done to both of you! I know my husband struggles to understand so how are children supposed to? I spent a lot of my time feeling guilty about not being the person I was. I also feel guilty because I am so lucky to have survived and I should be embracing life. It’s just so tough when you feel that every day is a battle and the people around you just don’t understand. I wouldn’t wish this on anyone, but it is some help to know someone else knows what you are going through. Thank you for your kind words and thoughts.
I understand exactly how it is, don't be afraid to ask for help though or don't feel to proud, because we all need the help now and again, life is hard and stressful on its own aswell as coping with what we have to.
I no lol I've spent many a nights up and about, putting washer on And dryer at 3am.
just drop me a message if you wish to chat I'm always here to help :)
I know I try n explain it in a simple way she can understand but I just can't dump everything on her I have to keep a lot to myself.
one day at a time, I've been doing this for past year or so n it really helps. We get good bad days. It is tough for us. My mate wanted me to stay at his other night, n I kept saying I'm too tired, but I'm not sure he believed me, I think he thought I was just trying to get out of it. But we all have our moments this is just one example.
Yes the biggest problem, people around us see as normal person. Because fatigue and pain doesn’t bleed.
I used to cry when my parents used to complain about my attitude and how I am but when I started reading here I understand it’s not just my parents.
one day I was crying and complaining about my pain and telling off my children why they cannot understand how I am feeling and how much I am pain in and why my father can’t stop complaining about me my little one said Mom because you’re not bleeding. His words shattered me and complete me at the same time.
we have to be thankful and bold to live this life I am keep trying to be not too emotional and sensitive but it’s very difficult. But will one day.
Keep the chin up or The crown will slip in our case or the life will slip away....
so ignore everything which hurt you or confused you. Live simple and easy life.
ah I have taken my crown and stuck it in a cupboard , sod that , we are the patient btw what a wise little child you have xx , my sons understand both in a very different way , i have a cold now which is weird because it masks how I am getting better I think, something tells me that things will unfold and I must focus on just getting stronger and chilling which yes as we both know is so hard to do without all of lifes complications xxxx
First of all take out the crown please don’t feel too much pity on yourself I do too then I cry for hours be tough have you ever seen Lady Police walk like them I try that really works later on hot water bottle on my neck.
and most importantly don’t share your pain with everyone out there no body understands.
same my both son’s understand it differently too one cares and one just nothing. That explains we have to pull ourselves together no body no body will give you a hand.
So please drink lots of soups to fight with cold. Keep yourself well hydrating and also multivitamins.
I had a stroke in February this year and at times struggle with fatigue. I am slowly improving and have been given blood tests to see if there is any underlying cause and am awaiting results
Hi John, I'm 38. They dont know when my stroke occurred. But I get serious bouts of fatigue at all kinds of stupid times. Take the advice, if you feel tired, rest. That is body and mind. Trying to fight it wont help. And hopefully the tests will find something they can help with.
It is common for us to have stroke fatigue. In fact it is rare not to have it. The best thing to do is rest and let your brain repair.
You could well be approaching the stage where there is a big improvement of SF. I do hope so.
But if not, then please be assured it does ease, even for the minority of us who never get it cleared. I am still resting and I have forgotten what its like not to have SF. Mine is in two parts. Head feels in a fog. And exhaustion if I do anything for 45 minutes. I still do not know if these two parts are linked, or if so, how.
I do hope medical science will come up with a cure. My diagnosis was "post stroke tiredness". What a bad phrase.
Yes it is the bain of my life.And no one seems to understand what we are going through.
But us stroke survivors do understand.
If your tests do reveal anything then please let us know. I had so many blood tests I think my arm ran out of blood. Doctor found a lack of vitamin D but that doesnt explain the SF.
Hi, i too suffer for really bad fatige and my strok was almost 2 yrs ago. I was only 36 at the time. Im sorry i dont have any great advice to give you. I just try and get on with it but the fact you are having blood tests if good. Hope you get some answers soon. Ayisha. Xx
Exhaustion, fatigue, tiredness, call it what you like but it is inevitiable. All stroke victims have it and the only good thing is that it does ease after a while, but never goes away completely. The worst thing is to try and ignore it, this just does not work.
thanks alot for your reply. yes we all suffer from this and this thought that it will never will leave us is quiet depressing. yes i do try to ignore it and try my best to stick with my to do list. it does hurt a lot by the middle of day but cant help it.
Hi Alisha got the blood test results and have highish blood sugar. Seeing doctor for another chat in a few weeks. Hope you are continuing to cope John x