Ankylose This! Living with Ankylosing Spondylitis

Monday, April 24, 2006

Things I can't do

Being diagnosed with a disease like ankylosing spondylitis means accepting limitations we've never had to face before. Of course, high-impact sports and other physical activity are the most obvious, and the easiest to come to terms with if you were never that much of an extreme athlete to begin with. ("I can't bungee jump? Shucks darn. Not like I ever wanted to.") But sometimes the limitations are more mundane, and therefore more surprising -- and harder to explain to friends and family. For example:

Dancing: Not that I was ever much of a dancing fool, but it goes without saying that it's hard on your feet and your spine -- as I found out one time when I was still at university. So, yeah, dancing's not so smart. Ow. But sometimes people don't understand: at a New Year's party, I was called out by another partygoer for not dancing -- she accused me, loudly, of sitting there and ogling the girls. (Actually, I was sitting there feeling sorry for myself -- I'd just found out about AS a couple of weeks before -- and her little act of humiliation didn't help. Spoiled the party for me, that did.)

Walking: Ironically, I have hiked twenty kilometres a day in the mountains, but walking in the city is much more problematic for me. It's probably a combination of harder surfaces and a slower pace. Walking through malls and museums -- actually, a combination of slow walking and standing still for short periods -- is particularly uncomfortable. I've had some difficulty explaining to people that this sort of thing is hard on me, and it's rather difficult, when you're in your late twenties or early thirties, to ask someone to give up their seat on a bench when you need to sit down. After much observation, I've been able to give the people I'm with a general rule: for every 90 minutes on my feet, I need 30 minutes sitting down. Seems to work.

What are some of the things you can't do that come as a surprise to the people you're with?

Comments on this post

  • Sitting STILL in a theater, or in the bleachers at a sporting event, or at a desk, or standing in a long, painfully-slow line (similar to your museum experience). These things are VERY uncomfortable for me, and I tend to move around A LOT. I probably appear to be pretty peculiar to strangers when, without prompting, I begin wriggling and writhing around in my chair, trying, unbeknownst to them, to stretch my rib cage and neck and lat muscles and/or crack my aching back.

    Posted by Anonymous Boulder Chick (5/10/2006 9:31 PM)  

Post a Comment

Links to this post

Create a Link