H-EDS - Tumblr Posts
We got a referral to cardiology and a referral to rheumatology!
And thus begins the diagnostic process...
I went outside for the first time in over a month!
I've missed the outdoors so much. Everything is so beautiful. I actually had to close my eyes and breathe in multiple times because it's so overwhelmingly gorgeous out there.
There was water and ducks and trees and dogs and sun and insects and plants and wind and clouds and sky!
I've missed it all so much and I know it'll probably be another month before I get out again so I'm trying to savour the memory right now.
I went outside for the first time in over a month!
lol ok this explains so much about the kind of freak that you are
I'm the kind of freak who's housebound and so sick that they can't leave the same four walls and see the sky and breathe fresh air for weeks at a time! Hope this helps 😊
Using crutches is so funny to me because ideally you would be walking around on all fours but society isn’t built like that
For anyone who needs to hear it: homeschooling is a good option.
I was vehemently against starting homeschooling for so long when I was first ill because I just wanted to be like everyone else and do things like everyone else.
Eventually I became so ill that I had to join a medical needs teaching programme and they started teaching me at home a few days a week.
I got a few weeks into it and realised I was the best thing ever. I couldn't cope being in a school but one to one lessons adjusted to my needs meant I could start getting one hundred percent attendance most weeks for the first time in two and a half years.
It helped so much with my struggles around school as an audhd person as well!
My contact with my friends didn't change. I actually started seeing them more because I wasn't wasting my spoons by trying to fit in!
Obviously it won't work for everyone but it's not as scary as it can seem and it's always worth looking into things that can help you.
I'm just curious
Disabilities: hypermobile EDS, hypermobility spectrum disorder, POTS, ME/CFS, fibromyalgia, functional neurological disorder