I thought about this post all last night and was adamant I was going to write it but now it comes down to it I’m not so sure. My resolve is wavering. Do I bare my soul or do I continue to hide behind my keyboard just posting book reviews, the occasional YouTube video and something that passes as personal?
The reason I decided to write this post last night was because I wanted to talk about disability and in the talking, raise awareness. I wanted to raise awareness of a little known genetic disorder. I wanted to do my small part with my small platform to give it a small voice. I decided that it was OK for me to be open on my social networks now about how I live and how this really, genuinely effects me. That my readers would be OK with that.
But today my resolve is wavering. Will I be looked at differently through the screens of readers? Do people want light fluffy clouds in their streams or some honesty and reality from time to time?
My reality at this moment is far from light and fluffy. It’s probably what kept me away from my keyboard so long this morning, I didn’t want to bring this here, but here I am now. Typing.
Hypermobile Ehlers Danlos Syndrome effects every person who has it differently. The connective tissue of every person is made faultily by the body and the effects of that vary widely. Many in the medical profession know little about it. My own GP said to me he would have to go and read up on it so he could care for me better. I was pleased with that.
Right now I’m really struggling. I’m deteriorating. I feel as though I’m getting locked down in a body I don’t want to be inside of. My brain still works. My mind is still the same one it was a few years ago. The one that wanted to learn to rock climb so I could go and climb some massive rocks in America. My mind still wants to jump out of a plane again. My mind wanted to do the skiing challenge in the pool on holiday this year. My mind wants to go out drinking in an evening with friends. My mind wants to walk the dog on some massive long walks. My mind wants to plug earphones in my ears, turn up the music and learn to run and steadily go further. My mind wants my body to have some energy.
My body just says no.
You read my posts on attending the crime writing festival at Harrogate this year. What those posts didn’t say was that I failed to attend any evening events. In fact I failed to attend anything past 6pm. They failed to say I had a postural orthostatic tachycardia attack in front of friends in the hotel lobby on the Saturday. That I was laid down on a hotel sofa in that lobby and a fan brought for me before I could be moved to my room. My friends were wonderful and I am grateful to them.
BUT, I did get up every morning and get dressed and enjoyed the daytime activities that weekend.
I’m struggling right now. My neck is highly hypermobile. On MRI it’s shown that its range in flexion and extension and turning left and right go way beyond what a person without hypermobility can. It is causing me a lot of pain and it’s constant. This is causing me the most problems right now. There are ongoing investigations but out of all the joints in the body, the neck/head joint is probably the least known and acknowledged in this country, particularly when it comes to its laxity due to EDS, so expensive specialists have to be sought out and even specialists in the US. It’s draining my energy and my ability for happiness. It’s like a life and soul sucking black hole at the base of my head.
Disability isn’t fun, but neither is it something I should be ashamed of and have it hidden away in a box. I’ve put it out there now. I’ll keep you updated randomly. I see a specialist in London in the middle of November. I’m hoping he will help and support me in getting further answers and help. But now, I’m stuck inside here screaming ‘Let me out!’