Where's the support?

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The community stroke team visited Karen yesterday.

I’d like to say that it was a success, but it wasn’t. According to Karen, she can do everything and doesn’t need any help at all, and the team took her at her word. They didn’t question her point of view, just said it was ‘Great’ and moved on to the next topic. When I shook my head and said no, that wasn’t the case, I got a sympathetic look, and got told my opinion ‘mattered’, only for them to turn around to Karen and tell her to stop looking at me to support her… presumably because she can do everything on her own.

I’m waiting on a carers ‘pre-assessment’, the CAB to get in touch about benefits, there’s been a mix up about the extra banister we need so that Karen can get downstairs safely, and still her family can’t be bothered to get in touch to see how we are doing, and I do mean we, as I’m rapidly feeling as though I don’t count for anything.

I explained that I’m autistic, have ADHD, fibromyalgia, type 2 diabetes, and have had 2 TIA myself, to which I got a ‘Oh, that must be hard’… but no suggestions or offers of support or ways of making my life easier, and every time I look things up it says that to get support that Karen must get PiP or I must get this or that, and we don’t, so we can’t.

Yes, I know there are people far worse off than we are/I am, but I’m overwhelmed and struggling because there’s nothing straightforward, and people don’t reply to emails or messages, and nobody tells you anything, they just give you a number to call (between certain hours) without any explanation as to what good it will do.

I didn’t think it would be easy, but I didn’t think it would be this illogical, this ‘clumsy’…

I had severe chest pains last night, not heart related, but just one of the wonderful side -effects of my fibro, costochondritis, which mimics a heart attack most convincingly, and in my case takes about an hour to recover from. Just what I need now, but the stress is doing me no favours at all.

Perhaps I expect too much, perhaps I should expect nothing and be grateful for any small mercy, any small thing that goes right, but i just can’t help feeling that I am and was totally unprepared for all this, and that having some sort of proper chat, proper guidance before Karen left hospital would have at least left me forewarned.

Rant over!!

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If I could send you some solutions, or a comforting hug, I would. What a terrible conglomeration of stresses you are having to negotiate. Knowing that this is not uncommon may not help at all, but as I have no answers beyond saying hang on in there and keep fighting, you are not alone, I have no better words to offer.

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fibromyalgia (& costochondritis) involves a problem with pain processing in the brain and spinal cord. This is often called central sensitization, meaning the nervous system is overly sensitive and amplifies painful sensations.

More importantly I intend to crack it and will post an educational video clip on my channel When the time comes! Essential oils like Lavender and Frankincense help.

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I found you have to push for things and ask and ask again. Don’t assume that someone will offer support if you tell them you’re struggling too. You need to ask specifically. They are there for Karen and not your needs so they can easily be overlooked. Rightly or wrongly. Have you tried calling the stroke association helpline 0303 3033 100? They might be able to offer some support.

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I am sorry to hear your not getting anywhere, and feel your frustration. I know when I am sitting in a queue knowing WHEN they do answer they will not solve my problem It just adds to my stress. But the best advice is keep trying, no matter how frustrating it is. Cos unfortunately you have to, for you both. Wish you luck.

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Different Strokes Charity have Zoom meetings for carers. It would be worth you joining to get support/ideas/suggestions from others. There’s actually one tomorrow (8/7). Here are details on how to join: https://differentstrokes.co.uk/virtual-meetings-for-carers/

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For some, everything falls into place and then for the rest of us it is a case of softly, softly, catchee monkey. Persistence is key but also it is a bit of a role of the die when it comes to connecting with the right fit person to help with your circumstances. Venting on here is a good start because it will help you organise your thoughts and work out what the next step should be. When you find someone who is enthusiastic and empathetic enough to fight your corner, the wheels will move a bit more smoothly. I have a close friend who is also a cerebellar stroke survivor and I have been witness to his utter frustration to be heard, but now he”s started to make some good ground all because he landed a sympathetic ear while before that came across nothing but endless brick walls.

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I’m so sorry you’re both going through this. Reading your post brought back a lot of memories because I started my rehabilitation completely wheelchair bound after my neurological injury, and I wasn’t offered the support or guidance that I needed either. I know how overwhelming it feels when you’re expected to work everything out for yourself.

One thing I’ve learned is that what someone can do for a few minutes in front of professionals isn’t always what they can safely or consistently do at home. Carers often have the clearest picture of what everyday life is really like, and your observations shouldn’t just be acknowledged politely, they should genuinely influence the decisions being made.

Please don’t think you’re expecting too much. You’re not. You’re asking for clear information, practical guidance and support while also managing your own autism, ADHD, fibromyalgia, diabetes and previous TIAs. That is an enormous amount for one person to carry.

My own experience taught me that recovery is possible, but it also showed me how much difference the right rehabilitation and support can make. No one should be left to navigate it alone.

I really hope the carers assessment leads to meaningful support and that the handrail and benefits issues are sorted quickly. Most of all, I hope someone starts listening to you properly. Your voice matters because you’re the one living this every day, and professionals need to hear that as well as Karen’s perspective.

Take care of yourself too. Your health is just as important, and you deserve support in your own right. Wishing you both all the very best​:heart_hands:

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