Hey Im Heather a 20 year old Ehlers Danlos Syndrome patient.Ive been a wheelchair user for nearly 3 years and live in constant chronic pain, severe sickness for the past year nearly (lost over 4 stone because of it so far, but got specialists trying to find out why :/ meh! something else 2 go into the pot lol) and daily dislocations an subluxations amongst other problems. I decided it was finally time to start blogging some of the stuff going on in my life an in my head to get it out of my system.
I got diagnosed in 2008 with Hypermobility syndrome in a local hospital and a few months later was diagnosed by Professor R Grahame from the UCH london with Ehlers Danlos syndrome.
I have always had alot of pain as far back as I can remember (not to the extreme levels of the last 2 years or so but I still used 2 hurt) it was always put down to growing pain so was ignored. I was dancing and would injure myself so easily and because Ididnt know I had EDS I just carried on grinning through the pain an dancing n getting on with it.
Eventually I think Id been told by so many people that it was in my head that I started to convince myself that I was making it up or something. so again Id just push through the pain. My legs would scream at me during certain PE games or sports same with my shoulders in things like tennis, so Id try get notes from my mum an dad to get off P.E and if I ever did get 1 from them and the PE teacher would look at me as if to say 'u aint hurt ur ankle ur just bone idle'
Its only now Im starting to accept Im actually sick, I can feel it now an there is no way Im making it up when u can visually see problems now aswell, the scars, an bruising, hyper extension an the long arse list of other things to go with it. But even now I get mad at myself like its my own fault an when i went to see someone in Dr wolmans clinic She said its important I get it through to myself that I am ill an I do have a genuine legit reason for being sick an a disability. really dont helo though when after u have the diagnosis its still a mission and a half to get any proper treatment from gps or the Drs that aint to firmiliar with EDS assume becasue ur flexible n its so easilly done, dislocating dont hurt us. PFFFFFT would love 2 lock a few gps from the past in a room of angry zebras, lol theyd soon know what it was like to wear stripes!
well I wanted 2 get more in but my hands are about 2 drop off. hopefully i qwill beable to get on here as reguarlly as Im hopinhg (sorry for typos an what not my fingers r doing thier own thing lol know the feeling? ;) )
*spoonie hugs*
