I don’t even know how to say this… I am frustrated and just lost… I feel like I’m stuck in limbo, waiting for some kind of life to start – one that is recognisable as one – and yet after 3 ½ years I’m still stuck and getting nowhere fast.
I have a formal diagnosis, but it’s got me nowhere, except just knowing what I have. The health & social care system couldn’t give a rat’s ass about any of it. I’m stuck on waiting lists that are longer than Andrex toilet roll, and stuck in the house because I cannot go out in the wheelchair I have, despite the extra modifications made to it with cushions. I went out yesterday, and today I just can’t. Despite the nice weather. I have to be stuck indoors because my wheelchair hurt me. Today I can barely feel my legs or use them – even the small amount I can is too precious to be messed around with, so how can I justify using something that takes that away from me? It’s not OK to have to crawl – with difficulty – to the bathroom because of that. It just isn’t.
Even the wheelchair company – privately contacted – has a bloody waiting list, although it’s about a week, instead of months or years. But t he thing is even they are making me mess around and wait – and they’ll be taking actual real money off us. Well, only if they get their act together… it’s not like they’re the only ones out there. So far it will have already been a month since the first fitting to try and get the issues with the “prescription” ironed out – then I’ll have to wait another week or so for the new quote. And we might then end up having to go round again. Even when it’s finalised, it takes about 6 weeks to make it, so there goes that month and a half too. I’ll be lucky to get one by bloody Christmas.
If I wanted one organised with the NHS it would take up to maybe nearly a year to sort it out, which is ridiculous and unacceptable. Despite asking back in January or February for physio (whom, it turns out I would not only need for actual physio, but to sort out eligibility and getting a proper chair), it seems I have only just been referred now. And the waiting list is long. I was put on the waiting list for psych back in January (I presume, anyway), and it seems they have up to an 18 month waiting list. I have also been referred to “Pain Management” … although I don’t know how they can help when your problem is you can’t feel any pain [almost]. The last thing I need is an anaesthesiologist – it’s the one thing I’ve got more than enough of is lack of pain… or anything. Everything that used to kill me with agony I barely notice now. It’s come in handy, but not great when you see injuries, bruises, cuts with dried blood, and you have no idea how they got there.
I’m getting nowhere fast, housebound, frustrated and climbing the walls (only metaphorically, unfortunately). Just… waiting. Existing. Barely surviving. Doing nothing.
I want to do things. One day I’d like to be well enough to have a job again, even part time. But I can’t do that if I can’t even sit in my bloody wheelchair for two days in a row. I’m being hindered and disabled by the system, less my (strange and almost unique – unfortunately) condition[s]. My array of complicated needs and history just makes me invisible to the system it seems, and it’s degrading, demeaning, humiliating, and lonely.
All I want is to have the tools and means to do the things I love – going out with my dog, visiting historical or National Trust places, maybe going on holiday, certainly going to work as a data analyst… and I just simply cannot do that with the state things – and myself – are in now. It’s that simple. And if the government hounds wanted me off ESA and into work, then they should make it possible, not erect barriers via austerity and raging stupidity… Like keeping Jeremy [H]unt in charge of healthcare. It’s like the wolf guarding the hen house… there are going to be many, many unnecessary casualties with no favourable outcome to anyone but the wolf.
What I need is physio, someone to tell and show me how to deal with the paraesthesia and numbness caused by my Hemiplegic Migraine/Weird Fibro combo, a good active wheelchair, emotional support designed for people with ASD, and the opportunity to do what I love (the latter of which I can manage myself).
Apart from the latter, the rest is being withheld from me by extensive waiting lists, caused by a government who screams as all us disabled, disenfranchised, demeaned, ignored, and ill – or “Scroungers” as they call us – to get our arses back to work.
Presumably this is all with the help of the Magic Fairy, who will magic up all the things we need without having to go to the NHS or through Social Care… Because it’s not happening otherwise.