When I was down and out earlier this year with Polymyositis, one of the simple pleasures that I really missed was being able to wear real clothes. As in, not the extra-large sweatpants and t-shirts that were all I could wriggle into with such limited movement. What's the point of wearing real clothes anyway, when you never leave the house and feel like you live in purgatory-on-earth? In a fit of sweatpants-backlash, I ordered a pinkish/orange velvet blazer from J Crew. I think the actual color title was "roasted red pepper", true to corny catalog copy. It's fitted, tailored, and perfect with trouser jeans and tall boots. I probably never would have bought it if I hadn't been feeling sorry for myself and wanted something that screamed "opposite of sweatpants!". It was worth it.
I read an article that discusses the use of symbolic elements to assert desired traits and group membership. My velvet jacket means that I am human again. I can dress myself. I have places to go. Same with those half-tights I bought a few months ago. I'm a runner, watch me fly. There's no place for half-tights in the sick world. And the GPS that I'm contemplating getting myself for Christmas would mean that I'm rugged and outdoorsy. Trailblazer! I see the pattern now. I think advertising professionals figured this out a while ago. Well-played...
I'm replying to this bolg because I'm kind of computer illiterate and don't know if you'll see it if I post it elsewhere. I was diagnosed with PM @16 yo. I was on prednisone and aziothaprine for more than 5 years as a teen and college student. It was maddening. When I was diagnosed they didn't do rehab (late 80's). I was scared out of my mind that it would return (remission x18 yrs and counting)and I'd wind up on prendisone again. Now here it is almost 20 years later and I'm still battling the effects. Last year I was diagnosed with interstital lung disease (related to PM) and got put back on prednisone. I was so angry. Am angry. I'm 39 now. Some of my muscles have atrophied and where the muscle bundles died, they filled in with fatty tissue and calcified. I've never been able to be much of an athlete. Recently, I got a trainer and lost 30# (on prednisone thank you very much). I ran across your blog and wanted to tell you.. DON'T SLOW DOWN!! Keep moving. I can swim a mile but I still can't do a sit up. Don't know if that will ever change. That's part of MY story,don't let it become yours.
ReplyDeleteI cried when I read some of your comments about not being able to get up off the floor or dress yourself. I remember it all like it was yesterday. I'd don't think I can ever forget it.
I'm glad you are still in remission KH.
ReplyDeleteI have found a support website for people with various afflications/problems/situations.
It has a section for polymyositis and dermatomyositis.
www.dailystrength.org/polymyositis-and-dermatomyositis/support-group