All About EDS (Part 1 of 3)
I've been meaning to post...for forever. A lot of things got in the way: city-hopping to Philly for the summer, subsequent arguments with my sister and another unwelcome flare-up in symptoms. Back in Cleveland, my father quit his job over arguments with management (working him into the ground and being shady about overtime) leaving neither parent
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As is Paganini.
(I quite like the latter as my name is Nicola, named after Paganini, and before my EDS made my right shoulder permanently seperated, I was rather the violinist!).
This is a great post, and I'm really looking forward to the autonomic one.. that's what I've been having a lot of trouble with recently!
The childhood issues... ugh. I first saw Rheumatologists who were convinced I must have Jeuvanile Rheumatoid Arthritis when I was 6-8.
They finally gave up when I was 16, and told my parents I was making it all up, they could find nothing wrong.
My Mum believed them.
My Dad didn't, he believed in me, but well, I had issues with my Mum anyway.
It's so STUPID though.
If we'd been diagnosed back then, how things would be so different now.
Instead of years of "does not concentrate, does not try hard enough, will not apply self, lots of potential, refuses to apply, etc" on reports.
The worst thing for me... when my parents moved out to Crete a few years ago, and had to go through all their old stuff and chuck, my Mum made me a folder of all my childhood stuff.
She said at the time, she thought it might be a nice thing for me to see my whole childhood laid out, though in a spiteful mood more recently she's said it proves what a useless little bitch I was.
In fact, it lays out everything about my childhood that I wanted to forget.
The fact that no one even recognised there was something wrong when I couldn't write at 9 years old, but had been reading Shakespeare on my own, at 6.
Those horrible "needs to improve tidiness and presentation" remarks all over all of my work into 6th form.
If I got 100% on a test, I got told off for it not being neat.
I was never praised for it by a teacher.
It drives me mad.
They failed people like us so much.
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