Do you ever look back at things you used to worry about as a child and wonder why you wasted so much time thinking about them? Things that kept you up at night? Things that you made a big deal out of? Things that were so small you don’t even think about now? My weight…
Category: EDS
7 Parts Of My Chronic Illness That Not Everyone Sees
I’m always very open and honest about my chronic illnesses (or at least I try to be) but there’s still sides of my condition that not everyone is aware of. Why? Because my health makes me quite vulnerable and only people that live with me see me at my worst. At the moment I live…
Wheelchair Update: £5k in 26 Days
WE DID ITTHANK YOU SO MUCH! A month ago I wrote a post about how I need a more specialised wheelchair; I had to raise £5000 and hoped to have it before Christmas. I wasn’t pinning my hopes on raising it really quickly and never in my wildest dreams did I think I’d raise it…
I Need a More Specialised Powerchair – Can You Help?
Get Sarah a Powerchair This is a hard post for me to write because I never thought I’d be in a position where I needed a wheelchair, let alone a wheelchair that is so expensive with functions I never knew existed. I have this constant stabbing in my chest because I’m so worried that I’ll…
PoTS: Autonomic Tests at National Hospital for Neurology and Neurosurgery
Last week I travelled down to London to spend three days having tests at the National Hospital for Neurology and Neurosurgery. I’d been a few months prior to see a new consultant who suggested I go through the autonomic tests so she would have a better idea on how to treat me. I was diagnosed…
One Year Follow-Up: Stanmore Pain Management and Rehabilitation Programme
Can you believe that it’s been a year since I spent three weeks in rehab? Where has the time gone? I distinctly remember the nerves I felt the weeks leading up to the programme as if it was last month. The apprehension, the anticipation, the terror. I was terrified, I’ll openly admit that; it was…
I’m Really Flexible and it’s NOT Sexy
I have Ehlers-Danlos Syndrome type 3; the hypermobility kind, the stupidly bendy ‘how don’t you snap?’ one. Some people will probably call the majority of us with EDS 3 – double-jointed, but that’s a myth, I mean, how can you have double the amount of joints? I’ve written quite a few posts on EDS, and…
Proprioception and Ehlers-Danlos Syndrome
When I was diagnosed with EDS type 3, (hypermobility, HEDS, whatever you want to call it) ten years ago I was naive enough to think that Ehlers-Danlos would be the strangest words I’d hear regarding my condition. Alas, my nineteen year old self soon learned a lot more; proprioception being one.What is proprioception?Basically, proprioception is…
Diagnosed 10 Years Ago Today
Last month I wrote a letter to myself on the day I was diagnosed, I mentioned that the date has been burned into my memory, and today is that date ten years on. 06/06/06Six six six Ten years. Ten whole years since someone told me the strangest words I’d ever heard. Since, I didn’t have…
Letter To Myself on the Day of Diagnosis
As it’s EDS Awareness Month, I thought I’d write a letter to my nineteen year old self on the day I was diagnosed. It’s been almost 10 years since it was confirmed that I have Ehlers-Danlos Syndrome type III, but I’d suffered all of my childhood when I think back; it just got a lot…