Today a fellow spoonie asked me if people start, point, or accuse if I need to get out of my wheelchair for anything, and she asked what to do about it. Sadly I had to answer yes, and that from what I have observed and read about and talked about a lot, I am not the only one. It happens to me all the time, to the point where it becomes such an issue that we have now had to address it in a way that really protects me …but I’m not 100% happy with.
Basically when people see me in my chair they assume that I can’t walk at all. I can walk, but only for short distances and I can’t stand very long. So even if I was to walk across the supermarket (once) I can’t stand in line for more than a minute or so. Walking allows my muscles to compensate somewhat for my floppy tendons, but standing puts long solid pressure on my hips, knees and feet, and not only is it painful, but when I go to move again, that is usually when a joint pops. So for anything longer than about twenty minutes, or no where to sit and rest, I need my wheelchair.
I need it because Mah Eeds (for all kinds of reasons) saps my energy and so I have very few spoons to start with, and I need to conserve that energy because it gets used up very quickly, (it is hard and constant work keeping upright and mobile), and I need it because when I do walk it is very slow and I can’t keep up with everyone else, and lastly I just can’t go the distance without popping a joint (or a few joints), sometimes tot he point of permanently damaging myself.
So my wheelchair allows me to be mobile, keep up, keep safe, and last the distance (time and area).
But if I ever need to get out of my chair for something, the people around me who don’t know me, usually freak out. They stare, they whisper and they point. Often they quite rudely accuse me or frown at me, and there is much tuttering and judging. It hurts my feelings but it also creates tension for all around me and those that I am with often ask me, for their sake, to please just stay in my chair.
To be honest, I don’t get out unless I need to. I often hurt myself getting in and out, plus when I have been in it for longer than about half an hour my body settles into it which means that it is out of place for walking and standing. So I am way safer staying in. But somethings are also done more easily if I get out for a few minutes.
So the plan is that when we decide that we need the chair, it is all or nothing. No “miracle walks” that freak people out and make everyone feels uncomfortable. And when getting out is unavoidable, or the best thing right then for me, then we brace ourselves for it and even say to each other: “here goes the miracle walk!”….