Questions

I swear my knees and ankles are getting worse. It never used to be this much of a struggle to go up and down the stairs. Sure, it was painful and difficult at times, when something was already out of place, but as a general everyday thing, it wasn't that bad.

It is now.

I don't understand why. Is it the wheelchair? I have noticed my knees stiffening up after I'm in it for a while, and the vibrations are certainly hell when I pop my knee out (I keep trying to kick doors open from the chair, heh. Usually on request. I should really explain how much that hurts.)

But I really don't want to stop using the chair, it's great and so much less painful than walking. Plus I only really use it for going into town and the like, I still walk to the corner shop and closer places, which is pretty much all I used to do, but the chair allows me to go out, for hours at a time, and I've been loving that. But is it making me worse?

Is it maybe all the bumping around when Rambo and TMM are fucking about or just generally not being careful with me? I know it hurts at the time, and I have noticed when I got out of the chair a couple times it was hurting more than normal to walk.

If it's them fucking around, should I shout at them about it? Should I get an electric chair so I can push myself? Will that help, or is it the vibrations? Is it the horrible pavements in Manchester that slope in all the wrong directions, rarely have ramps on the kerbs, and are often potholed/gravelly - or, at the worst - cobblestoned?

No other EDSer I know has complained about their wheelchairs making them worse, either through vibrations or sitting still too long or being bumped around, so is it the chair? Do they just have better drivers and better streets?

If it's not the chair, is this just another one of those horribly fast deteriorations of EDS hitting me? Will I level out again soon? Is it possible to find a physiotherapist who actually knows something about EDS and might be able to stop me deteriorating? That I can actually afford? I've seen a few around, but ranging between £25 and £40 per session. I can't afford that. I could maybe manage £5 a session, but even then I'd be complaining about it, as it would cost me a further £5 to get there and back.

If this gets any worse, will I have to move house? I love living three doors down from my Dad but these stairs are killing me. My house seems to have extra-steep stairs, too. If I have to move house, will I be able to? I've tried looking, before, for ground-floor flats and bungalows, but they're either ridiculously expensive, or don't allow people under 65. What the hell is that about? Are the elderly the only people with mobility problems? I tried living on a third floor flat before, rather than a ground floor, but the lift broke down constantly and no-one seemed to care enough to fix it in any sort of sane time period. That was hell on me, too, and that was three years ago. I've gotten so much worse since then.

If I can't move house, and I can't handle these stairs any more, what the fuck do I do? The NHS certainly won't pay for a stairlift or anything, and even if they did...my landlord knows nothing about my problems. He knows nothing, because he, like most landlords, specifically won't take tenants who are on benefits. If he finds out, will I get kicked out of my house? Where will I be able to live? The council certainly don't care about finding me a house that's suitable. We can barely afford this place as it is, expensive bungalows/ground-floor flats are out of the question.

If I had a proper diagnosis, would it help matters? How do I get one when none of the doctors know anything about it? How do I get to go see a doctor that does? The nearest specialist place is a children's hospital in Sheffield. That's expensive to get to, even if it wasn't a children's hospital. The only other place in England now is London, as the Leeds one's shutting down. London's both expensive to get to, and hell on my joints. Last time I tried it was a five and a half hour bus journey and I was in tears by the end.