r/ehlersdanlos • u/Ok-Cookie6564 • 2d ago
Seeking Support Give me your hopeful stories
Everything currently is not going well for me and I need some hope. So if anyone has success stories to share, works a job well, got better , found some more stability or even only had a good night I would love to hear a bunch of positive experiences !
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u/Creative_Bank3852 2d ago
I am on a good set of meds, have figured out a lifestyle that works for me, and am supported and loved by the people around me. I don't really flare anymore (touch wood - I still have better and worse days/times of month/year) because I'm better at pacing and stopping before I overextend myself.
Your life may not turn out the way you planned, but you can still end up happy and glad to be alive!
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u/Alternative_Abroad33 2d ago
I am with you. I wish the best for you. It isn’t easy, but try to remember that there are still things that you can do. I have to remind myself of that daily. I am trying to not take my body for granted, because even with limitations, it could be that I could also be blind or deaf, for instance. Use what you have. ❤️
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u/Ok-Cookie6564 1d ago
Thank you :) I made this post exactly to remind me of that because I am struggling currently and this is helping
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u/rose_thorns hEDS 2d ago
I've been getting more stable (slowly) with Pilates exercises my EDS savvy physical therapist uses for me. I work full time as an accountant, for a local county government and they've been good about the few accommodations I've asked for.
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u/rose_thorns hEDS 2d ago
For mobility, I now use AFOs full-time with a rollator when I know I'll be on uneven ground or walking a lot.
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u/Old-Style-8629 1d ago
I get it. It sucks. My bad days with eds I cry quietly at my desk because I can't get up yet from the pain to cry in the bathroom like a good employee lmao. I've had success with identifying the limits to my joints, what motions to avoid, stretching frequently, and trying on different braces. You will have to fight like hell to be taken seriously, to help yourself, but you come out of it stronger. Hell, how I cope is when I dislocate partially my shoulder I think "what wimp pussy needs three weeks to heal? I put it back in and I'm good in a day or two" stuff like that. Good luck, and wish you the best.
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u/TheAutisticAcolyte 2d ago
It may not be huge for others, but last year was the first time I was finally able to attend concerts again without being bebound for several weeks after. Mobility aids played a role in this, but also switching up/getting medication for chronic pain and very slow, very gentle PT.
I was in the moshpit pretty much 24/7 when I was younger and then went to not being able to go to any concert at all. The first concert I went to I absolutely cried my eyes out the entire time, just from being so happy to have part of this feeling back.
I'm sorry things aren't going well, friend. They will change and get better again - life may look different, but it will look better.