OK so i have Ehlers Danlos syndrome, its caused me a LOT of problems in school and work.
For those who don't know, its a genetic collagen deficiency. I'm EXTRAORDINARILY flexible, but because the "glue" holding my body together is weak, i can pop pretty much ANY joint out of the socket on command, and am prone to a LOT of other issues with my health. It can cause other complications with major organs, but thats besides the point.
For instance, it usually manifests in my hands, and I'll have an outbreak of tendonitis so bad that I can't hold a pencil, and it sometimes lasts weeks. Or my knees will randomly swell up and become so freakishly painful that its difficult to walk(though this has only happened twice) The tendonitis can happen anywhere in my body, and even on "normal" days, there's a LOT of pain, even with no swelling or physical appearance of an ill.
So needless to say, I have pretty bad joints.
Which brings me to the point... What do you girls with health issues like this do when you dance? For the most part, its varied enough that it doesn't cause me problems, however I have to watch myself REALLY closely on pole tricks.... Like now. Four days ago, I wasn't paying attention and i went to do a pole trick, and POOF dislocated shoulder! The dislocation ITSELF wasn't painful, and it popped back in easily enough, however its been in more or less constant pain ever since. I've had to cancel one shift, and leave two others early this week, because even with painkillers, it hurts to even hold the pole for support when I turn! Very pathetic. And still I keep trying, because the club has REALLY needed me there... Its hard to explain how it hurts, as the area varies... currently, it hurts from my wrist, all the way to my shoulder, and the muscles under my breast, and inside my elbow.... Hurts to breathe, and move my arm.
I take Glucosamine supplements already, and am careful to stretch and warm up before dancing... But can anyone else suggest things that might help prevent any more muscular or joint damage?
This is really scaring me. I always felt guilty getting the special help at school with the writing parts(dictation, or additional time, or use of a computer), because it didn't "feel" like a "real disability", but the longer I live, the more it DOES seem to be one...
Can't write papers, that hurts the hand, can't do intensive manual labor, same... can't do a lot of forms of high impact workouts and activities, have only had ONE form of "gainful employment" that DIDN'T cause me to have such severe pain outbreaks that I couldn't even complete classes... And that was small-quantity dessert production, which its IMPOSSIBLE to find a job in... And thats not even including the hobbies I've had to give up because they were just too painful-piano, crochet and knit, sewing, drawing, calligraphy, and writing away from a computer, jogging...
I've failed out of college because of the pain, failed out of culinary school for the same, lost at least 3 jobs, and had many more "sick days" as well...
I think I'm beginning to consider it a REAL disability, and I still have no idea what I can do, since its so difficult to support myself!
I'm TIRED of always being sick, injured, in so much pain I can barely focus, even if it IS physically possible to do the task!
I've spoken to my doctor, and the problem is that since its genetic, there's no form of therapy that would help me, we can only treat the episodes as they come, and make sure school/work knows of the disease and don't come down too harsh on me.
I just feel like this isn't good enough. I expect better of myself.
I enjoy putting on my stage shows, and challenging myself on the pole, the flexibility is QUITE a thing to see... And comparatively speaking, this isn't NEAR as harmful on me as a lot of my other jobs have been... But at the same time, its harder with this one to look my manager in the eye, and try to explain why I CAN'T do another set, at least not while its like this-they need me in there, so i've been unable to really let it HEAL the way I know it needs to. Because now, even if I don't touch the pole the entire night, it still hurts, and if I try to do any floorwork, the same pain is incorporated. Really, the best thing for me would be to take a week or so, do NOTHING but heat, epsom salt baths, and careful stretching, as well as treatments of arnica, and anti inflammatory painkillers, but I just can't quite do that, not with my club this short on dancers.
One of the other dancers at my club has been pulling double, triple shifts pretty much daily. when i'm there, I try to do similar, usually there 8-12 hours at a time, once as much as 15, but I just physically CANT because of the pain, no matter how much they need me. They recently stopped hiring girls from an agency, but didn't have their own house girls lined up and scheduled, hence these few weeks being VERY hectic, with them continually begging us to come in...
I was doing fine when I could make sure I had at least a day in between shifts to recover, and wasn't working for more than 6-8 hours a day... Need to figure out how to handle this.
Advice?



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