I hate being disabled

There’s no point in beating around the bush, or going around the houses. I hate being disabled and I hate everything about it. I have a lot of diagnoses, but this specifically concerns Ehlers-Danlos Syndrome and its effects.

You’re not meant to hate being disabled. You’re meant to let people find you “brave” for continuing to involuntarily be alive, you’re meant to listen to people say “I never ignore disabled people in case they can teach me something!” and other patronising horseshit. You’re not meant to be too happy being disabled, either, because if you learn to cope with your life too much or still find a way to enjoy things, you must surely be up to something.

Recently, during the couple of outings I’ve had in Andover so far, it’s become very apparent that Isador, my current wheelchair, simply cannot cope. I previously wrote a post all about why I chose this model of chair, and I don’t need to do it again. But despite the fact that, in the newsletters that come through my door, people describe Andover as “a shopping destination for the disabled,” it is incredibly difficult to navigate. The kerbs are far from flat and the pavements themselves slide steeply towards the roads. Even Calpurnia would have struggled in a few places. My aim at the moment is to procure Freya’s successor and start getting around independently. I will not be able to do that in a Sasaki iPower.

It’s a shame, but it’s just a fact. The chair is still fabulous indoors, can still function as a manual chair when needed, and when we are in a position to buy a car, we will be able to buy a normal one with a decent boot, instead of a full-blown WAV.

But for going anywhere direct from the house, I need a new chair. Which sucks.

The other day, I wound up breaking down and crying because it finally hit me just how much I hate being disabled.

The sheer cost I incur through items I can’t live without. Constant searing pain. Ripping my joints right out of their sockets through normal everyday movements. Being constantly out of breath all day long. Having to climb stairs with my butt, and not being able to go up and down at will. I am now having problems with my right arm, I can’t move it without getting a weird zingy nerve feeling, and I fear I’m on the way to losing control of it altogether. And it’s my dominant hand, the hand I move my chair joystick with, the hand I write with, and I may lose it.

I’m tired of being this way. I’m tired of costing money, not bringing in money, tired of everything hurting, tired of being tired. Tired of expecting to die early and imagining how Will will forget about me for the rest of his life.

Inside me is a thin athletic girl who climbs trees and goes on adventures and can go to Anton Lakes any time she fucking wants, can hop over gates and stomp through mud and own normal pet dogs. I imagine that she works the same kind of job as Will, and so our household income is £40,000 a fucking year and we are fine. But she’ll never get out and she’ll never be real, because there is no cure for this nightmare that is slowly shredding every millimetre of my body into pieces.

I briefly got the idea to get a cheap crappy rollator walker thingy that has a seat, and I could just sit on it every few paces, but not only would it take hours to cover any distance, I’d keep fainting from getting up and down, I’d be utterly exhausted and it just wouldn’t work. So I found myself crying buckets and apologising for not just being able to buy a rollator and be done with it.
It’s been hard to find a suitable second chair. I couldn’t get something like Calpurnia again; not only are chairs like that far too expensive, they are too big to fit well indoors, whether in shops or just getting through a residential front door. 
We found a chair called the Travelux Corrado. I can’t find information about the power of the motors but it should perform a lot better than Isador. It’s only 61cm wide so it should fit into our house and not be too obtrusive in shops. We found an ex-demo version on eBay for £400 and Will decided to buy it for me, which is financially risky, but getting the deposit back from our last house should allow us to make rent.
This sort of thing is reassuring to see and will hopefully mean that the chair can cope.

The chair should have arrived today, but the status from the delivery company says it has been affected by an external strike. So if we do go down to Anton Lakes at the weekend, it will be in Isador and I will struggle.

It’s a shame that a slimmer, folding electric wheelchair could not give me the freedom I wanted. But really it’s not about the chairs, it’s about my horrible body. I hate being disabled.

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