jeshyr: I'm disabled, not dead! (Disabled not dead!)
[personal profile] jeshyr posting in [community profile] no_pity
G'day all!

I'm Ricky, I'm 34 and I have ... umm ... something that might or might not be ME/CFS + EDS or might or might not be a primary mitochondrial disorder.


I've been sick since I was 19 or so, and for the first 10 years just got worse and worse. I'm not getting physically worse any more and I've got a lot better emotionally so I'm coping better with life although physically I'm still crap. I'm bedridden and have been for many years now - I went through the full range from walking alone to using a cane to elbow crutches to manual wheelchair, powerchair, and now bedridden. I run the Bedbound/Unlimited website about the bedridden part.

Diagnosis wise I have been diagnosed with ME/CFS, Fibromyalgia, and Ehlers-Danlos Syndrome (hypermobile with some vascular symptoms) for most of the time I've been ill but in the past few years I've been evaluated for the possibility of having a primary mitochondrial disorder. This would mean that all the symptoms of all these conditions are actually caused by the mito disorder and that the original diagnoses are all wrong, but as yet there's no certainty about anything. I'm seeing the mito specialist again on the 4th of June to get results from recent hospital tests (including a muscle biopsy) and hope there's something definitive there.

I also run the No Pity City website which has a range of stuff (mostly T-shirts but more to come!) with disability slogans, mostly irreverant and/or funny. I run ATMac which is about assistive technology for users of Apple products - Mac computers, OS X, iPods and iPhones. Actually I help run a few others websites too but those are the main ones :)


I'm head of the accessibility team here at Dreamwidth; that's a bunch of us who work at making the site more accessible for those with all kinds of access needs. If you want to read about that, help, or report accessibily issues with Dreamwidth, trot along to [site community profile] dw_accessibility for more information.

Great to see all the introductions! I'd love to read more :)
Ricky
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