I try hard not to be negative or to complain too much. Overall, my Ehlers-Danlos syndrome (EDS) is not as bad as it could be, and I’ve found ways to manage most of my symptoms. I usually can do what I enjoy with a bit of creativity.
Still, I get frustrated and tired of it. I know it sounds petty, but sometimes I don’t want to get a massage or do Pilates. Not because I don’t enjoy them or they don’t help. It’s more that I need to do them that grates on me.
I love to read. I can devour books for hours on end (although I rarely actually have time to do that), and there are so many awesome options. But if I’m assigned to read a book, it goes from being a book I’d enjoy to a chore. Stupid, right?
This is kind of the same thing. I genuinely enjoy Pilates and massages. But on occasion, I resent having to do them because they’re mandated by my EDS. I still go and I enjoy them once I’m there, but I wish I didn’t have to do it. It’s two evenings a week when I don’t have control of my time after work. I have to remind myself how dumb it is to be frustrated by the therapies that help keep me active and manage my pain level.
When I see the progress that I make and the fun I have during my sessions, it’s a no-brainer. It’s also why I have a standing appointment with a Pilates instructor. I know I’d never get it done if I tried doing it by myself. I’m tired when I get home, and it would be easy to pass it off as something I’ll do the next day. Plus, doing it with someone else makes it more fun. And if you have to do it, it might as well be fun.
Sometimes, you have to deal with the negatives and find the positives. I get frustrated by needing to go to massage and Pilates, but the benefits make my occasional pettiness pretty easy to push aside. I can tell when I miss a session of either one. And trading two hours a week for feeling better the other 166 hours? Hmm. That’s pretty much a no-brainer, too.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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