10:24am May 25, 2012

➸ Not Your Inspiration: gimpunk: a-bayani: anyone else on tumblr have a sitting disability? or...

a-bayani:

anyone else on tumblr have a sitting disability? or can you connect me with a friend who does? how do you cope / deal with daily life stuff? message me?

(my doctor says i shouldn’t sit for more than half an hour at most, and i generally can’t manage more than 5…

I haven’t been formally diagnosed with this, and had never heard of the term, but I’m unable to sit upright for very long without a whole range of symptoms. My wheelchair tilts back, reclines, and puts my feet up for that reason.

If I sit upright too long, a lot of things generally happen: Crotch goes some combination of numb and very painful, mid to upper back becomes very painful, legs change colors, and I become so exhausted I eventually collapse (as in so limp I can’t move at all). I’d never thought of it as specifically about sitting because standing is even worse in ¾ of those areas so I’d thought of standing and sitting as the same thing.

I haven’t been able to fly on airplanes for years. Last time I did I collapsed twice, once each way, and was in so much pain I was crying. At home, I live in my bed the vast majority of the time. My couch has one end that acts enough like a reclining chair I can use it for short periods. And my wheelchairs (one electric, one manual transport chair) have some combination of tilt, recline, and elevating footrests. My biggest problem around the house is toilets, to the point that I’ve literally had dreams about toilets that allow you to lie down. (They were well designed, too, and available in every public restroom.)

On long car trips I have had to do several different things. Lie down in the back seat, take the back seat out and lie on the floor, or use a wheelchair van. But even with those things, travel wears me out so bad I rarely do them.

I already am unable to do most self-care stuff for cognitive, sensory, and motor planning reasons, so I haven’t had to find ways of doing that. I get bed baths now instead of sitting on a shower chair. And I get services to help with most things. I eat in bed, just like I do everything in bed. I don’t have a lot of self-consciousness about things like this so I used to, before I had the right kind of wheelchair, get out and lie on the floor in waiting rooms and stuff. Later on, when I became unable to get up off floors, I got a lounge chair that folds up and has straps for being like a backpack. I put that on the back of my wheelchair and then transferred into it instead of lying on the floor.

I don’t know how much of that is useful to you, but I’m happy to talk more about it if you want. I have a lot of other problems as well, so there are things you might need to find a way to do that I just couldn’t do in the first place. But I’ll do my best.

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