25 December 2010

In the beginning...

I should use this first post to bring you up to the present, today in fact, which happens to be Christmas Day...woo. You can tell I lost the magic of Christmas a long time ago; I didn't start opening presents until gone 3 today.
Anyway back to talking about me. I guess one of the main things about me is that I'm Disabled, a word which makes everyone run a mile, so come back if you have. I suffer from a connective tissue disorder called Ehlers-Danlos Syndrome, bit of a mouthful. I am grateful for Mr. Ehlers and Mr. Danlos for all their studies but surely they could've chosen a less ridiculously hard name to pronounce, spell and hear correctly especially when you're bumping around in the back of an ambulance in incredible amounts of pain, full of IV morphine (on top of my daily medication which would knock any regular person's socks off!) and tyring to inhale as much entinox in between tyring to help the paramedics spell the wretched thing!
This disorder can go by the less impressive name of Joint Hypermobility Syndrome, they are currently trying to officially merge the two and no doubt they will choose another complicated name.
So what does it all mean I hear you ask (if you're interested)? Well, Joint Hypermobility is self explanatory except that there doesn't have to be an injury or cause for joints to dislocate and sublucate, they just do what they want when they want. This leads to no end of muscle pain, trapped nerves etc.  So basically I have all the chronic pain from daily life as well as acute flare-ups when something decides it's on the move.  The Connective Tissue part of my illness can affect anything in the body because everything is made up of it.  This means that any thing or system in your body has the potential to be affected and in my case there's too many to mention.
So all this means that I've had to give up a lot of things over the years, I've not been able to reach my potential at university (where I studied Jewellery Design) because of deadlines I couldn't physically make because I'm less able than the other students and my body doesn't allow me to be in a workshop 9 till 5.  If I did try to do that I would pay for it later and be unwell/ bed-bound for any number of days/ weeks after so I had to quit after a year. That was the hardest decision I've ever made, to admit defeat. (As you can probably tell it's still a sore subject and I think it always will be unless miraculously I have an opportunity to learn at a more manageable pace.  The hardest thing is seeing pictures of all the unimaginative crap that the other students are producing.

Anyway...my illness started developing when I was about 10 and it's going to stay with me forever, so I have to find ways of working around it.  It's too easy to stay in bed all day and become a hermit (been there, done that, got the depressing t-shirt).  So hopefully this post will mark the beginning of a motivated future.
(Wow, I just read it back... apologies if it comes across a bit dramatic!)

I'm listening to: 'Night' by Zola Jesus

No comments:

Post a Comment