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: Ehlers-Danlos Syndrome
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…
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…
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…
A Day In The Life: Ehlers-Danlos Syndrome
This week it’s Hypermobility Syndromes Awareness Week #HMSAware and obviously it’s really important to me as I have Ehlers-Danlos Syndrome Type 3. What many people don’t realise is that the HMSA (a bloody amazing charity) take all hypermobility syndromes into account, not just EDS, and it’s vital that the other hypermobility syndromes get enough attention…
Chronic Illness and Brain Fog
For as long as I’ve been living the Spoonie life (16 years), I’ve had these weird little bouts of fogginess. The combination of chronic pain, fatigue and lack of sleep take a huge toll on the brain and sometimes it’s really difficult to say words, let alone form sentences.When it comes to brain fog, I’m…
Flare-Up Plan: Chronic Illness Strategies
Are you ever in so much pain that you can’t even begin to comprehend what to do to help yourself? I know I get to the point where the pain is so consuming that my brain simply won’t work and I have no answers to pull out of my bag. Where do I start? What do…
30 Things About My Invisible Illness You May Not Know
It’s nearing the end of Invisible Illness Awareness Week 2015 and when I saw that Rachel over at Happy Little Syllables had posted this meme about living with an invisible illness, I had to share my story too. Invisible Illness Awareness week started on the 28th September and ends October 4th.Many of you know that…