Hello. I had a cerebellum stroke on the 10th of February 2023. I was shocked to say the least all I could think was I am a carer in the community how am I going to do my job. I had a problem with balance at the beginning but it’s improved and only happens if I am tired. I suffer from aphasia which I am finding hard to deal with as I am a talker I have cried so many times over words. Noise especially phones ringing and texting gets to me. Last week all I wanted was to be alone and nobody would let me be. I was hoping to go back to work after the 3 months but I can’t see that happening and that worries me. I am allowed to drive so that gives me a bit of freedom. I just feel so lost. Sorry for rambling on.
Ramble away, that’s what this site is for. You are still in such early days after your stroke, and it all takes time. You are going through what a lot of us on this site have experiences, so you at not alone. It will ease in time, Allow the time to heal, it will take the brain some time to re- adapt and at the moment you need rest to recuparate. Don,t push your self too hard.
Thinking of you and sending big hugs. Jane.
Welcome to this forum @aodonnell1743 though I’m glad you’ve joined us, I’m so sorry you’ve had to. But this is just the place to ramble or rant and get things off your chest when you need to. Strokes are indeed an emotional roller coaster ride and you’ve still a lot of recover to go through.
I really do feel for you and can relate as I too had balance issues and aphasia. Do you have any speech at all?
The speaking aspect of aphasia I quickly learnt could cope with as I’m not much of a talker in actual life…only on here really. I am now over 2yrs post stroke and talking again, that started coming back in the first 9mths I’d say. But I do still struggle at times with things like vocabular and tend to slur speech when I’m tired though. Reading and writing was a lot slower to come. Writing is fine now but with reading I’ve still a few niggles I need to iron out.
Unfortunately brain recovery works to in own schedule, pushing too hard just doesn’t work for it. And yes, it does need peace and quiet time and lots of sleep. I always saw that noise intolerance as the brain signalling it needs a rest right now, it’s your job to give it that.
There really is no telling how long it all takes to recover from a stroke it really depends the level of the stroke, the disruption it may have caused, and all stroke survivors recover at different rates.
Keep coming back here as I’ve no doubt others will be along shortly with lots more support and advice for you. You stay strong and keep on keeping on, you’ve lots of time to recover plenty more yet, your still only in the early stages yet. So be kind and a little more patient with yourself
Below are some links I think you might find useful:
Aphasia and communication
There are also lot of support group links on here for both aphasia and strokes for you to find which may be in your area you may find beneficial.
@aodonnell1743 welcome to our forum but sorry about your stroke.
I had a cerebellar stroke and with time things will get better. Emotional is one of the symptoms mine has eased.
Be patient and kind to yourself and Misty to your body for rest. Kind wishes Loraine
Hello & welcome @aodonnell1743
You’ve joined the best place to ramble, rant, cry, celebrate wins etc etc - go right ahead
Lots of us have learnt that stroke time scales are measured in years not months. I hope yours aren’t on the same timetable as mine. In case they are you might want to investigate the various allowances & benefits?
Emotions are deffo a big one and are affected by & effect all ours relationships so are hard because others are involved who won’t have the visceral element of understanding. Getting to terms with yours will be a big help to building your life post stroke life. That can be hard because some much of the conversation startes “re-…” and really one doesn’t “recover” one 'caries on on a new path with new capabilities
At least that’s a mindset I’ve found a lot of content StrokeWarriors to embrace
Maybe ask for neuropsych help, mindfulness, sleep etc support?
Hi aodonell.i had a right side cerebellum stroke 3years ago,don’t panic too much it takes a while to recover,it’s very hard to come to terms with i still struggle sometimes because i forget i can’t do everything at 100miles an hour like used to,i can’t multitask anymore and i know the feeling when you want total silence and you can’t get it,i learnt to go somewhere in my head ,i look like i’m listening,i’m still in the room but I drift off and get away,can’t tell you how because i don’t know how i think i’ve just learnt to do it by nescettity,maybe a bit like meditating?anyhoo,don’t try to run before you can walk,take it steady,do as your told,rest,rest,rest and more rest because believe me you will need it,i learnt the hard way and still i’m learning but it does get easier,you will get stronger,you might have setbacks but learn from them and start again,ask for as much help as you can get…try to smile at least once a day it does help…be patient i know it’s hard but there’s not alot you can do about that…think how different it could have been your still here and you canf ight on…i lost the ability to read and somevhearing amongst other things …and reading and music are my passions so i was upset but gradualy i got reading i got hearing aids so now i have my passions back,everything takes time but it will be ok and you find different ways to do things or ways around things…don’t be afraid to tell people whats happened i find it helps rather than have people think i’m weird(not sure i get away with it been told i’ve always been a bit crazy anyway haha)no seriously i got a couple of cards on a lanyard that says "i’ve had a stroke,i might be a bit slow,thinking,speaking,doing,please be patient"i use it it on a not so good day it does help and it does start some good conversations with strangers who then have become friends,so that’s positive,take happiness in the small things and each thing you can do is a big achievement, be proud or happy that you can …keep talking,keep asking,keep going,you can do more than you know,or you will be able to eventually…i wish you every strenghth every happiness and best wishes and luck and positivety.summers on it’s way:sun_with_face:
I am a carer to and struggling ( my stroke dec 22 ) , feel like nobody understands I need peace and quiet ! I look quite normal but my brain not functioning like it was I get tearful but only on my own !!
I am blind in one eye hat will not return and as much as I tell people this they still ask if it’s come back yet which hurts each time !!
So I know how you feel x i am constantly asked when am I coming back to work but I do t know when I will be able too x ( and get little anger inside as think do you know understand that maybe I need a little bit of help now lol
But we will get there or maybe this is telling us we have neglected ourselves for too long looking after others and it’s time for us to put ourselves first ( which is not easy for us carers lol )
Take care my lovely
Thank you everyone for your support.
I was ‘lucky’ I never had any paralysis and my speech was fine the stuttering and loss of words has just gradually creeped up on me and I get frustrated. I had a fall in a shop yesterday I don’t know what happened I felt so silly. I feel exhausted the past few days the only thing I have done was go to a friends, lasted 1 and have hours and have felt wiped out since.
I think because there are no visible lasting effects people think I am ok and should be back at work and that I am ‘putting it on’ with how I feel and that is upsetting.
I have lots of calls from support teams but have never met any of them. I attend a counsellor due to having ptsd from having a previous heart attack at 45 so that helps.
Sorry going on again
And that helps too so keep on talking here, it’s all good counselling!
There could very well be ptsd linked to your stroke, it’s as much a shock to your system as it is to your brain, and it is an emotional roller coaster for you.
If you’re still intolerant of noise, traffic and the likes of crowds and being tired, will no doubt bring on certain amount confusion and disorientation, and this could be what brought on your fall. Your mind was being overwhelmed.
I’ve just got back from my Aphasia self help group. I find being in the presence of fellow stroke servers has helped me immensely over the past year. Just socialising with, quite literally, like mind folk puts it all into perspective for me. I can relax and just be me, without apology, without judgement or misconception, they all just accept me!
But weren’t we ever the same at some point in our life. No one can truly understand SS’s and what we go through better than us…and the medical profession. Are they truly thinking you are ‘putting it on’ or is that your self consciousness imagining what they must be thinking. I mean surely, if they are care workers, they must at least be aware of strokes even if they’ve never had to care for a SS. If they have actually come out with that then you can put them right. If they haven’t then, just steer clear of those sort of imaginings because you are not doing yourself any favours for your own mental wellbeing.
You need to look after you, you are your number one priority just now, never mind what anyone else thinks
@aodonnell1743 welcome to the forum. Sorry you’ve had cause to join us.
You are very early days yet & as everyone has said rest is very important & much needed. In the early days after my stroke a five minute conversation wore me out for hours/days. A visit to a friends for an hour doesn’t sound much but in a post stroke world it is massive.
I too thought I’d be back at work after a vouole of months but soon realised that was unrealistic. Don’t feel pressured to return until you are ready.
Take it easy.
I had pretty much a lot of what you are suffering hypersensitive to noise and anxious all the time. I promise you it does improve as your body heals. My stroke was 10 months ago today. My emotions are alot more settled and hypersensitivity to noise etc has reduced. Your body will be coming to terms with it all. You need time and people around you need to be given a crashcourse into your world. I promise it will improve keep as positve as you can and if you struggle ask for some medical help like anti depressents or anything to help lift yiur mood.
Good luck with everything
Total respect for sharing your personal experiences
A problem shared is a problem aired!
@aodonnell1743 it’s early days, don’t rush back to work, take the time to let your brain heal.
Be kind and patient with yourself. Being emotional is ok, it’s a lot to take onboard, and stroke can affect our emotional response.
I was exactly the same,but 4 months in im feeling a lot better.
Things will get easier and you will start to feel better on yourself.
Keep going your doing well.
Rant away, we all like to read each other letting off steam because most of us feel exactly the same.
Be kind to yourself, I had my Cerebellar stroke in January 2023 and so I can relate to the way you are feeling, but just know that you aren’t alone and that the feelings are all very normal.
Rest and recover and take no mind of those who think you ‘look ok’ or are putting it on, that’s blooming rude of them to make you feel that way.
You are a Stroke Survivor and a warrior keep up the fight xxx
Sending you big hugs. Strokes are emotional roller coaster rides. I have aphasia, and because there are no visible sign, people think I/you are ok
There are low moments but there have also been many good things happen since my stroke. Patience and time I guess, so be kind to yourself. All the best
Hi @Susan3 just wanted to welcome you and agree with everything you said. Happy Easter
Welcome @Susan3 hope your recovery is going well. Happy Easter xx
6 years on. Still easily tired and I can be ratty or cross, (frustrated by the fact I cannot finding the pertinent words or pronounce them properly), but I decided early on, accept the fact my life has changed, and take new (intimidating) opportunities (now outside my comfort zone) because the benefits justifies the risks. Happy Easter.
Bless you,it’s hard but it will get better,my stroke was 3years ago and i still have those moments where i’m wiped out,need quiet and no distractions but they occur less frequently and i can do alot more for a few days before it hits me now,i have learnt to pace myself,build up gradualy and know that if i have a busy,noisy,hectic day the next day i have to take it easier,so plan your days and take baby steps to start with and build from there…and don’t forget everything you do is a massive achievement and even taking an extra step,spending an extra 10 minutes doing something is progress…i could scream when people say…oooh you look well,they can’t see inside my head and know how much more effort everything and i mean everything takes but i just smile and say how kind thankyou,then say a rude word in my head as they walk off it usually ends in #osser!!!oops.i struggled to speak or get my thoughts out at first so i wear a badge saying i’ve survived a stroke so plwase be patient and it does help…i keep having bad falls and ending up in hospital but i’m getting used to that now,i say crazy legs strikes again!!!keep persevering and be kind to yourself,give it time and you will see how much you’ve improved i promise