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

[jtidwell.livejournal.com]

Wow. I feel really, really bad for you. Y'know, I was talking to one of my doctors a few days ago, and in the course of the conversation, he said for the first time, "This is no longer about curing it. This is about managing it."

Giving up like that just is not in my nature, but like you, I don't know what else to do because no one understands the underlying biological mechanisms. And what I've got (no details here) isn't nearly as bad as what you have -- I can still be active! I can only imagine what you're going through.

New bodies at 35. I liiiiike that idea. :-)

[cjsmith.livejournal.com]

"This is no longer about curing it. This is about managing it."

Oh wow. That's a dash of cold water, eh? I don't know what you're living with (and I understand if you don't feel like explaining) but whatEVER it is, knowing that it won't go away can't be an easy thing to accept.

I like the idea of new bodies at 35, too! That's just about exactly when I needed mine. Well, if you don't count needing one at twelve.

[jtidwell.livejournal.com]

Send me email at my old school address, and I'll tell ya...

Hugs!

[cjsmith.livejournal.com]

Will do -- hugs back!