Support and aids is an avenue I’m hoping to explore now that I have an official diagnosis. 

I tried seeing an OT last year but she wasn’t very familiar with hypermobility and just told me to go on Amazon and look for whatever I want. Yeah—I already know how to do that, thankyouverymuch. I’d been hoping she could bring some expertise to the situation and also actually size me for things. I bought a collection of those elastic support things for wrist and elbow, but both of them immediately make parts of my hand go numb 🙄

I have 3 or 4 different knee braces, but none of them actually keep my kneecap from subluxing at all. In high school and college I used to tape my kneecap a lot but I have a terrible reaction to adhesives so I had to stop doing that. Why, yes, that adhesive reaction IS another gift of hEDS! Funnily enough I’ve found that the thigh high compression stockings I wear for varicose veins and POTS/blood pooling actually help stabilize my kneecaps a bit!

I have one ring splint I got off Etsy for my thumb, which is definitely my worst. The ring splint does keep me from hyperextending, but it also hurts the skin where it presses in when I do something that would normally hyperextend that joint (like opening a bag of cereal or pushing a button 😬). And my skin swells and shrinks so much moment to moment that it’s hard to get a good fit. 

My head is actually something I struggle with a lot. I guess it’s technically my neck that’s the problem, but I always feel like my head is too heavy to hold up. This is both literal and metaphorical, because I’ve also struggled being an intelligent woman in a world that doesn’t always like intelligent women. I have neck pain and muscle tension/pain in my neck and shoulders, and I get a ton of headaches. I don’t notice it quite as much when I’m walking, but if I’m standing still or sitting down my head feels like it weighs a million pounds, and I’m nearly always propping my head up on my hand or slouching way down in a chair so I can rest my head on the back of the chair. Of course, the propping on my hand then aggravated my finger or wrist joints (and my ulnar nerve, so my pinky goes numb). Slouching way, way down is also not a great posture!

I recently got an SI joint belt (and remembered to wear it!!) and wow did that make a huge difference in my lower back pain. I felt like my entire trunk was being supported!!

I also got a shower stool so I don’t have to stand while bathing. That’s another game changer!! I used to march in place while I showered, but that’s always a bit dodgy when standing on a wet, soapy tiled floor. 

I’m hoping to get connected with an EDS knowledgeable OT who can help me figure out some better ways to support my joints and minimize injury and wear and tear. My real goal in life right now is focused on “mobility into my 80s”. I’d like to keep being able to walk and take care of basic activities of daily living for as long as possible. 

@ehlers.danlos

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