I only joined this forum today, 12 weeks after a Cerebellar stroke. I was kind of hoping to see some good tips and advice but up to now I’m feeling a bit saddened. My main concerns are sensory/auditory overload and fatigue. I was hoping that the fatigue, which is currently a bit hit and miss, would resolve after a few months but many of the posts on here are saying it has lasted years. I have been reading the body signs…rest when tired and go (gently) when good but sometimes this causes crashes. I’m now trialling pacing, even on really good days which can be difficult as it’s tempting to do ‘usual things’. I was just hoping fatigue was a temporary symptom. Maybe ignorance is bliss and my beliefs, before coming on here, were actually keeping me going.
I think everyone’s recovery, just like their stroke, is different. I really struggled with fatigue in the early days. I’m now two years post stroke and whilst I do have days where I feel more tired, on the whole I am doing good. I don’t think I’ll ever be back to 100% but I’d say I’m about 90% back to normal.
All I did was give it time. I rested when I felt I needed to. I did a little more on the days I felt able to, and built up from there.
Hi @RubyRooX and welcome to the community. Sorry to hear about your stroke. Please don’t be despondent. Fatigue and sensory overload are common after a stroke but they often get better. For some people fatigue does improve after a few months others it can take much longer. It is different for everyone and a lot of fatigue is about managing it. You will learn what works for you as time moves forward. Planning and pacing are important ways to help manage fatigue. You are already trying that so you’re half way there. Plan in rest breaks throughout the day which should help reduce fatigue.
I have sensory overload which feeds into my fatigue. I bought loop earplugs to help me manage that and they do help especially when in noisier environments.
As with all things stroke it takes time and everyone’s journey is different so you may well be someone who improves quicker but be prepared for things to take longer than you might want them to.
Hi Mrs5K, thank you for your lovely, positive message. All taken onboard, pacing is key. I have looked at the loop earplugs and hesitated but yes, I think they’re worth a try.
Hello @RubyRooX welcome to the group. You are in the very early days. It is several years since I had my stroke but I remember nurses I knew who had been on stroke courses advised me to rest. Give yourself time it is a great healer.
Hi again. I kept a diary of the very early days which I have just looked at. I had a TIA quite early on. It might be a good idea to keep a record so you can look back and see how you have progressed. Another nurse friend suggested relaxation tapes I wrote in this record. Best wishes!
Ah @jenny-wren Thanks so much, again great positive news I’ve been keeping a diary and you’re right, the fatigue was awful in the beginning. Everyone here is right, it has to be managed sensibly.. baby steps.
Shwmae, welcome to the cerebellar stroke club. We don’t have many members because it is such a rare stroke. I have an older post with a few bit and bobs on cerebellar stroke, you can access it here. Cognitive fatigue affects people differently, depending on what your brain needs to do each day, your environment, personal circumstances, personality, emotional disposition &c. How long it lasts will also reflect the aforementioned factors but also as the years roll by, fatigue and aging can run parallel courses. When I had a cerebellar stroke, I was 44, now at 49, most of my non-stroked peers are slowing down. Not, necessarily, neuro-fatigue like mine but a cognitive fatigue they rarely had when they were at the age I had the stroke. So, it isn’t surprising fatigue can last years for many.
Hi @Rups Thanks for the link. Yes, age isn’t always kind regarding cognition—add menopause and stroke fatigue and it’s a lot to navigate, but I’m hoping things continue to improve with time.
@RubyRooX Welcome and fatigue lasts a long time. There is no quick fix. I am stroke survivor and still suffer fatigue, but not as much. I took no tips from anyone, I just went with what felt right for me as we are all individuals. I did not research stroke to death as then you will look for further symptoms. Stroke is one of the worst things that can happen to anyone and you will feel sad for a long time. I feel sad because I miss myself, but I have now learned to accept and i am building a new me. I am back working full time, run as busy a life as I had before stroke, but that has taken months to do. Don’t rush anything, baby steps and you will achieve more. I focus on what I can do, not what I cant and I never talk about my stroke, I have put it behind me. I wish you well, good luck for your future I am a glass half full person, always on the positive.
Hi @IreneFC Thanks for the reply.. I think I’m a bit like you, looking for positives but yes missing the old me. Hopefully I will get to see parts of it in the near future-I miss my exercise which, at the moment, can’t be done the way it was. As we say ‘baby steps’ and celebrate the wins.
Fatigue is what happens when your brain needs time to heal. Healing doesn’t happen in a linear way - it comes when the brain has acquired enough oomph- medical term - to mend itself. So embrace the fatigue days and think of your brain ‘knitting up its ravelled sleeve’ and doing the healing thing.
@RubyRooX (cool name), from what I’ve learned on this forum, recovery takes many form. Until recently, my mum was a stoke victim. The best thing to do is pace yourself. Consult your local GP and specialist doctors for regular check ups. Always remember, it’s a marathon, not a sprint.
Thank you @JohnnyBoy81 I’ll do my best to remember that and not be so impatient. Poor brain needs to heal. I’m so curious.. wish I could have a peep inside and see how it’s getting on.
Welcome to the community, I’m sorry to hear about your stroke and how you’re feeling, I hope some of the replies you’ve received have helped. It’s important not to compare as everyone’s recovery journey is different.
We do have some information on fatigue which may help in understanding it a little more.
I hope you’ll find this community helpful, if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
I’ve been keeping a diary and you’re right, the fatigue was awful in the beginning. Everyone here is right, it has to be managed sensibly.. baby steps.
I am a glass half full person, always on the positive.
