Stuff

Ehlers Danlos Syndrome is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Then Tschernogobow from Moscow published his findings about the fragility of the skin associated with hypermobility of the large joints in 1892. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome. Edvard Ehlers (1863–1937), Danish dermatologist, and Henri Alexandre Danlos (1844–1912), French dermatologist, who separately reported it in 1901 and 1908.

There we are EDS may well be one of the oldest known etc..... but it is certainly something that most people know nothing about. Having EDS and trying to explain it is something I don't bother with very often. Probably because people's eyes glaze over shortly after the Ehlers Danlos bit... so I generally leave that until last and just say I was born without enough collagen in my muscles and it causes problems then tag on its called ehlers danlos, I normally leave out the syndrome bit as I often feel this part actually makes people think its a made up name... in actual fact I have hypermobility type formerly type III. A word of advice to anyone trying to explain the condition if you have it, just leave out the syndrome bit.

The thing is with invisible disability is it can be quite a lonely experience having it, my close family know obviously and friend's, apart from that not many. i am sure plenty in my small village think I am very lazy and feel sorry for my husband who works hard and long hours to support us. Sometimes I wish I could stand on the top of the house and scream 'What I have fucking hurts big time'.

this may sound bizarre but I actually dislocate my finger pushing the 'touch sensitive' button on the microwave and my thumb pushing the bigger button which opens the door. So for DLA purposes the microwaving meals question is a joke! (UK people will know what I am talking about).

So when you see me walking slowly to my car probably what hurts is everything, and very veryoccasionally nothing. My daughter has a beautiful smile which she uses as a mask, I know when she is out of the house and she is smiling as hard as she can she is in agony. If you are reading this and you have EDS too, I know that you know what I mean. EDS absolutely sucks.

It doesn't fill my head 24/7 but I do come here to vent my spleen, I am 44 and this morning my husband had to lift me from a laying down position in bed as I was in agony - he eased me carefully and lovingly up and spooned oramorph into me. I woke literally paralysed with pain, he went to work and three hours later I had managed to get up and get dressed I had to wait a full hour before i could move at all. not every day is like this and my life is pretty OK really but requiring morphine at 8:00 o clock in the morning is not good. He says its as though my body when asleep collapses in on itself and the muscles relax and don't hold my bones in.

It is Saturday so husband worked half a day... whilst he was away and I couldn't move, I thought about why he is still here and how he can find me attractive when his last memory of me this morning was spooning oramorph into me and smelling the sickly sweet smell of sweat caused by pain, my hair was damp and clinging, I wasn't scared I am used to it and so is he. The first time it happened i thought I was dying, funnily i didn't panic I just laid there and thought if this is dying I hope it hurries up as on pain scales its over the 10. Its stupid but lying in bed unable to move, doing visualisation techniques for relaxation and attempting stretches to help my broken body move is actually exhausting.

Because I had taken morphine in the morning by 5 o'clock this afternoon I was more than a tad grumpy and guess what completely took it out on other half. I feel bad now about this and want to apologise and cuddle him and say how much I love him but he is asleep and exhausted and it would be cruel to wake him up. Tomorrow morning he will wake early as usual and wait until its a good time to go see his mother whom he sees every Sunday and they walk the dogs.... she is 77 has recently had a heart by pass but nevertheless is more mobile than I. Don't get me wrong I am not an envious person by nature I never have been but it does make me wonder sometimes about the cruelty of EDS. I am not feeling sorry for myself honestly just thinking and writing. I wonder what it is that makes me a half glass full type of person ... I guess its my genes from my mother's side, no matter how bad things are she always always remains optimistic. My father is the opposite. So when I eventually do go to sleep this evening I remain hopeful that the paralysis thing won't happen in the morning. I suppose I should tell the doctor about it but i doubt he could do anything other than write it down and I have done that here.

So tomorrow there is a large garden show which i hope to attend as we do every year... husband said diplomatically tonight that there is a french market in town also, which no doubt he will be thinking may be a more achievable event. i have an open mind tonight.... so we shall see what tomorrow brings, French Market or Garden Show.... bollocks to EDS.