Mary Kay

I hope this doesn't sound like a Pollyanna answer: feeling that the issues are different than aging is actually constructive and useful, because people tend to try to fix, or improve, things about their body that they don't think are simple aging, and tend to accept and simply manage things that they think are simple aging.

That being said, having to do all that shit is completely frustrating, and I sympathize.

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I can see why adapting to the issues of aging wouldn't be sufficient to deal with an illness or disorder, although (at least in my case) the reverse is true, in that dealing with diabetes has helped me deal with aging.

Bodies break down; that's what they do--some earlier than others, some more spectacularly, but in our universe, that's what happens. This may seem bleak, but coming to that realization actually brought me peace. No one did it to me; I didn't do it to myself; it just happens.

*hugs*

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a thought about exercising...

I don't enjoy it either but it makes such a dramatic difference in how I feel that I'm compelled to do it anyway.

I've managed to incorporate reading -- I bought a recumbent bicycle that I find it very easy to read while working out. If your exercise regimen doesn't allow reading, I'd suggest audio books and an MP player. If you dedicate a book that you particularly enjoy to 'exercise-only,' then it becomes an incentive because it's the only time you get to read/listen to it.

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I've been thinking about this since your previous post, and paying more attention to my own coping techniques and such. I'm not sure if this will be at all useful to you, though. For me, the hardest thing to cope with is fear. I don't know what I'll be able or unable to do tomorrow. I don't know if not being able to do something today means I"m having a bad day or means I've lost ground again. And one thing that seems to help is reading books that are emotionally analogous. Most books by/about actual people dealing with my disorder (MS) drive me nuts. What seems to refill the cope tanks are things like Julie Kenner's Demon-Hunting Soccer-Mom books -- think Buffy, grown up, retired, and trying to raise a family, when she's dragged out of retirement to handle a crisis...which somehow, doesn't stop. So she's trying to keep up a normal family life while never knowing when the next evil critter is going to pop up and try to kill her. For me, they're just what I need (along with a nice bubble bath) at the end of a bad day. It's not as simple as "If she can do it, so can I!", but it helps somehow.

Your comforting-reading will likely vary, and I hadn't realized until this week why I find those just what I need some days.

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Have you met rahaeli? She has a hyperflexibility syndrome which led her to be diagnosed incorrectly with carpaltunnel before actually being diagnosed correctly.

I'd suggest a note to her on how she's managing, etc. Might be a helpful connection...

(BTW, I found you through elisem)

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That's very interesting. I'm pretty sure I have carpal tunnel -- the same doctor diagnosed the carpal tunnel and the hypermobility at the same time. The carpal tunnel was confirmed by a conductivity test. I shall however get in touch with rahaeli. I'll tell her you sent me. Thanks!

MKK

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Welcome!

She finally found a doctor who diagnosed her with Ehlers-Danlos Syndrome AFTER she'd had surgery to correct the Carpal Tunnel syndrome. Apparently, symptoms of EDS mimic CTS.

Good luck with it all!!

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