EDS Awareness month, living with EDS

Posted: May 23, 2016 by Simone Young in Current and Active Works, Disability and depression, ehlers danlos syndrome
Tags: , , , , , , ,

Hi guys

I have mentioned before that as well as having depression and dyslexia I also have a disability too. Unfortunately the condition is genetic and there is no treatment for it at the moment. Its called Ehler Danlos Syndrome(EDS), it is a genetic condition where there is an error on the collagen creating gene that means there is less collagen in my muscles meaning i have a wider range of movements but it also means that my joints are unstable.

My hip dislocates three or four times a night, my wrists, fingers, thumbs, toes, rips, shoulders and ankles dislocate with regularity. I have a permanently partially dislocated left hip and walk with a frame for it. It also affects my digestive and reproductive system.

I have asthma and there is a chance that the EDS is affecting my diaphragm which may make my asthma worse. I am lucky that it doesn’t affect my heart but it affects everything else.

I will be talking to my Doctor about getting a support for my hip but being over weight that may have an effect on getting one so i am working hard to lose weight.

To make matters worse I have nerve damage on my left side and a few other things that are a side effect of the med’s I’m on.

I joke that if I stand my back and legs spasms, if I sit down it spasms and goes numb and if I lay down it dislocates.

There are days, as there is with my depression, that are worse than others and I hide away. The more active I am the worse it is. The more active I am the more dislocations I get.

My writing helps me so that I have a distraction from the constant pain and the fact that I am able to pick up and put it down when I have good and bad days thanks to my awesome publisher. I can’t hold down a normal job as my skills are in administration but because I can’t sit in an office chair for more than twenty to thirty minutes and then I have to lay down for an hour, no business wants that.

It also allows me to try and ignore the pain, which is sometimes successful, sometimes. I try my best not to allow either this or my depression beat me, I try to make my life a little better by managing it with my doctors help. I don’t sleep much, which is useful, but what usually happens is that I end up crashing for a full day. People have suggested things to me, some I have tried and they don’t work, some I haven’t tried but its usually down to a reason.

I have an excellent network of friends and family that are always at my side, always willing to help and I am extremely thankful to them for that.

I hope you all have an awesome week and that you are enjoying the nice weather.

Happy writing

Simone

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