Really struggling

Sorry to be such a downer, but I am really struggling. I had a major stroke 13 months ago that left me with ataxia and a lack of sensory feedback from my left hand side. I worked very hard and was able to walk a few steps unaided within about 6 weeks, but things just haven’t gotten any better. I can still only manage a few steps and the slightest thing affects my balance. I’ve also developed siezures since the stroke. I am finally accepting that true independence is beyond me now, but my ‘carer’ has his own difficulties and is actually making things harder for me. My resentment at his lack of care is making his difficulties harder for him. I feel like my choice is accept his care, which pretty much amounts to the occassional bit of toast and turning my house into a cesspit or trying to manage alone when I can barely shuffle back and forth to the toilet. I really don’t know how I can go on with any semblence of independence.

@sgjools sorry to hear you’re struggling. I know it doesn’t feel like it right now but things can continue to improve so do keep trying.

In relation to the care I wonder if you could get an OT referral. They can come & assess your home & provide advice on things that can be installed / used to help make things easier for you. Things you will never even have thought of perhaps.

Are you still having physio? That might be worth pursuing too.

You could also see if you can get a care assessment done from social services / local council.

Give the Stroke Association helpline a call too… they will have more ideas on things you could try.

Hope this helps a little.

Sending love and best wishes.

Ann xx

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Than-you Ann. I am no longer having physio, I ticked all the boxes they wanted ticked by April. But being able to get on a bus is a bit pointless if you can’t actually walk very far when you get off. It was never weakness I had a problem with, but balance and co-ordination which just doesn’t seem to be improving no matter how many excercizes I do.

I had an adult social care assesment just before christmas and they are looking into getting me a spot in an extra care housing scheme. They also offered to have people come in to help me in the meantime, but I told them I would try to manage alone. That is my problem. I’m finding it really difficult to accept my limitations and need for help, but equally as hard to manage with those limitations. It is leaving me desperately unhappy.

I do have a falls alarm now, so I am no longer scared of having a fall or siezure when alon. It might still happen, but I know I’ll get help.

@sgjools sorry your struggling I agree with Ann @Mrs5K everything she said makes sense.

Don’t give up. Maybe some support care will come soon.

Is the carer family or outside help that you have now? If outside help you could ask to change.

I wish you lots of luck and speedy recovery in 2023 keep going and keep talking to us.

Regards loraine

Thank you Loshy. I am OK now, thanks to both you and Mrs5k. I think I just needed to voice my frustration. I also think the anti-siezure meds I am now on are messing with my mood a little… making things seem bleaker than they really are. I cleaned my oven before christmas ffs. OK I did it entirely sat on the floor, but I did it. Don’t know why I am forgetting stuff like that and getting upset because a shadow passing my front door threw me off balance on my way to the kitchen.

My kids dad is my carer. I think I have already accepted that isn’t good for either of us and maybe try harder to accept the offer of outside help.

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@sgjools good you’ve accepted he’s not good to be your carer.

Have you applied for ESA or PIP which can financially help with your financial status. Sometimes you have to try twice I did and got both which is a relief and less worry.

I just cleaned my oven and couldn’t get off the floor today, my hubby had to hoist me up. It’s funny now but I cannot put pressure on my hands as I had carpel tunnel operations on both hands so the strength has gone. I tried always to be independent but I needed his help.

Keep going best wishes Loraine x

I’m with you on the physio piece. They do tick their boxes then let you go. My physio is likely to sign me off at next appointment as i am not progressing with my walking.

I have balance issues at times too so understand what you are saying.

I know its difficult to accept we need help sometimes but if you can get some help in it might make a world of difference to you. Even if they only do a couple of little things for you.

I’m impressed you cleaned the oven. I left that to my hubby :face_with_hand_over_mouth::face_with_hand_over_mouth: i did sit on floor on clean one of the kitchen cupboards though. It’s so easy getting down there getting up again is a bit more challenging.

Hope you get things sorted soon.

Best wishes.

Ann xx

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So sorry to learn about your struggles. They say that the bravest thing is to realise you need support and accept help. Easy for me to say when my stroke has left me relatively unscathed but getting help is really hard to get so if it’s available you must be entitled. Give it a try. You can stop it if it’s not helping. Wishing you all the best. Cynthia xx

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Yes getting up is way more challenging than getting down. I do all my cleaning on the floor…it is way easier to stay balanced but I think I’ve given myself something a bit similar to carpol tunnel syndrome in my right knee from the strain of it taking all my weight when trying to stand. Getting up is a right polava and often involves scooting around my flat on my bum until I find something low and stable enough to let my arms do most of the lifting.

That is something I’m going to try very hard to keep hold of. No matter how difficult things get, we tend to find ways to deal with it

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