I'm getting worse

[cjsmith]

I wrote about asking for wheelchair assistance in airports. I said it felt weird because I'd never done it before. I thought briefly of saying "Looking back over the last eighteen months, I probably should have." But I thought a little and I realize that's not necessarily true. Looking back over the last eighteen months, I've definitely had times when I've been better than I am today. When I went to Japan I walked a LOT. I could walk a lot. It hurt, of course; it hurt big bunches; I was never not in pain. But there's absolutely no way I could do that much walking today -- not multiple days in a row. I could, and did, back in January.

I'm getting worse. This is not good. This is very scary.

One other reason it felt weird is because I'm calling for wheelchair assistance for flying to and from a square dance convention. What's wrong with this picture? Heh! Of course, just because I'm going to the convention doesn't mean I'm able to dance much -- I'm not, not by a long shot -- and I'd like to conserve every shard of mobility for times when I *can't* get help. This, too, shows how I'm deteriorating. At other dances in the past I have only thought about whether I could take enough breaks. For this one I'm not even considering attempting to show up at every session. One session, with breaks between tips and maybe sitting some out, is my limit for a day. I don't even know if I can do that much two days in a row.

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up. I've long since quit envying healthy people. They're not even in my universe any more.

Comments

[firecat]

As for wheelchairs to and from square dance conventions - it all has to do with spoons (I assume you're familiar with that currently popular metaphor).

In a science magazine recently I read an article touting the benefits of walking and the author snarked at people who rode an escalator to their gym instead of climbing the stairs to the gym or just going for a walk. I wanted to swat him, or at least give him the experience of what it's like to find walking uncomfortable and still want to exercise.

[cjsmith.livejournal.com]

Ayep, I'm conserving spoons.

the author snarked at people who...

Healthy people just have no clue. I can tell that it's going to be very difficult for me not to slide down into believing that healthy people are basically inferior...

[kimatha.livejournal.com]

I'm grateful every time I can take the stairs instead of the elevator, because there was a long time that I couldn't.

[cjsmith.livejournal.com]

I remember when your hip (both hips??) pain was pretty bad. I don't think I realized that you couldn't take stairs, though. Ouch. :-(

[kimatha.livejournal.com]

It was just the one hip, bad enough. I couldn't do stairs very well with my ankle injury either, and i was always petrified of re-injuring it or aggravating it.

[cjsmith.livejournal.com]

*nod*. I wish our bodies came with little status readouts so we could tell when it was time to STOP. It's 8:55AM, I'm in the lobby, can I take the stairs? [check the readout] Nope, not this morning, maybe tomorrow. [push elevator button]

Well, it's a nice fantasy I suppose. :-)

[genderfur.livejournal.com]

I had a weirdo chronic knee injury thing in my early 20's. It got me looking for elevators where I had previously, snobbishly, looked for stairs. (Which isn't to say that lots of people who use the elevators *shouldn't* be using the stairs instead! But I learned to stop making assumptions about people's health, after I had an invisible disability myself for a couple of years.) Happily, it healed over the course of several years, and I was even able to morris dance upon it for awhile.

But years ago, I heard the phrase "temporarily able-bodied" and it stuck with me. I mean, even if NOTHING ELSE AT ALL ever happens to us, most of us will end up elderly enough to become at least slightly disabled. More people need to know this.

What's with the spoons?

[cjsmith.livejournal.com]

The "spoon" explanation for what it's like to be chronically ill

I like that phrase "temporarily able-bodied".