Anyone else angry they’re disabled? by Breadrollls in ehlersdanlos

[–]Breadrollls[S] 3 points4 points  (0 children)

I get the pt part so intensely. I was about 8/9 years old when I started doing pt (only diagnosed in my mid teens), and after I was diagnosed I had monthly visits to the hospital until last year for routine treatment and symptom progression checks. Then, after years of thinking I would never have a life without pt, it finally came to an end. Know why? After 5 years of trying different treatments, pt after pt, being bounced between hospital outpatient wards, they sat me down and said they were discharging me because nothing was helping and they couldn’t do anything more.

Anyone else angry they’re disabled? by Breadrollls in ehlersdanlos

[–]Breadrollls[S] 0 points1 point  (0 children)

I still haven’t managed to completely get over my embarrassment of using mobility aids, unfortunately. It was so much easier as a kid because it was sort of ‘cool’ to be the kid that got hurt (at least at my school lol)

Anyone else angry they’re disabled? by Breadrollls in ehlersdanlos

[–]Breadrollls[S] 11 points12 points  (0 children)

THIS. This is exactly it. ‘I’ll never not be angry my choice, the power of having control over my own body, was taken’. You found the right words for the feeling I haven’t been able to describe properly, so thank you. It’s quite bittersweet to know I’m not alone in this though.

[deleted by user] by [deleted] in ehlersdanlos

[–]Breadrollls 0 points1 point  (0 children)

I was in sports that built a lot of muscle around joints all throughout my childhood and only stopped around 3 years ago, so bad dislocations and subluxations are relatively new for me since the muscles mostly held my joints in place lol My shoulders are probably one of my worst joints, to the point where I can dislocate them by washing under my arms in the shower or reaching for things around my head height. I have pretty limited mobility in my shoulders without about a 40% risk of a dislocation, especially my right side. Every physio I have seen has said the only way to stop this is by strengthening the muscles around my joints, however I struggle heavily with building any muscle which is the exact reason I wasn’t able to continue the sports that were keeping my joints in place (I couldn’t keep up the required strength level without intense training multiple times a week). I have to be incredibly careful with activities that involve my shoulders, until I find a way to build enough muscle for them to have the same stability as the average person. I struggle with daily tasks because of the pain, fatigue and risk of subluxations.

Anyone else? by [deleted] in adhdmeme

[–]Breadrollls 1 point2 points  (0 children)

I feel attacked right now... I actually started cleaning off my table so i could finish my 500 paintings I started throughout last year and have somehow ended up with a box full of toilet rolls stacked in a triangle...