Eighth Dimension: #72 Slender

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With the weather changing and warmer seasons coming in it would be nice to get out and about more. Hopefully with better weather will come an easier time walking and getting around town Being stuck in one room isn't good for me, yet all the places I would normally go to in town are the other end of the city - I live where all the takeaways and clubs are. So when I'm tired from a particularly raucus night outside, standing up in the kitchen is painful and Kev is too tired from work... the temptation to just give a call and qait fifteen minutes is always there.

I tried looking up excersizes reccomended for disabled patients at both the NHS website and the BBC website. I was appalled by the results. Searching around other sites lead to pretty much the same results (wheel yourself instead of going for a walk, roll around on the floor, resistance band excersizes or weight training.)

The only sites I've found that have been halfway helpful? Aimed at elderly people in wheelchairs or Chronic Fatigue Syndrome which pretty much advises a few example excersizes I've noted down and can do from a seated position or gives advice on not pushing yourself too far.

Then there's the 'advice' pages of those who believe everyone with my condition should excersize for half an hour every day minimum have constant physio therapy and wear braces if they can't manage the exersizes on their own.

Seriously.

If perhaps you don't see anything wrong with the statement, allow me to illustrate.

Some days I wake up paralysed or with so many muscular spasms in my body moving is a no go for that day. EDS stops the body healing properly. It's a condition where injury from doing absolutely nothing is common. Several times I've been tempted to keep a camera around with me just to catalogue bruises, cuts, dislocations that I wake up with or happen spontaneously. Too many awareness sites for EDS include photos of the condition in the form of people doing tricks to exemplify what the condition means, or particularly BAD bruising from minor surgical procedures. There is never an every day record, usually because 'every day' means being on your own trying to keep house, hold down a job or just lie in pain waiting for someone that can help you to drop by. Your first thoughts are to try and push through and worry about all the things that need to get done.

EDS type three is particular for its joint dislocations, while joint pain and less frequent dislocations or subluxing is common in all forms of EDS it tends to be the ones with types 1&2 that make comments on constant physio and 'not letting EDS win' then you get the ones with EDS 3 who were diagnosed 'early' and push themselves every day to stay active and 'not let EDS win'

The average age for diagnosis with EDS is around thirty-five. I don't know why it is so late, but speaking to sufferers it seems to be most get their symptoms starting in their late 20's when it starts to become a problem. Some even have had several children before realising anything serious is wrong with them. I was diagnosed at twelve because I had been stuck on crutches for five years and was on painkillers seasoned adults couldn't usually handle. I did my best to stay active, I used to do physio every day, and I hated it - and it ended up damaging me. I would get lectured that I "wasn't trying" and was "wasting my life and the doctors time" because I didn't put the 'effort' in to do half an hour of tedious, repetative, painful exersize every single day. I was expected to do them even when I had been in hospital with yet another major dislocation and it ended up just pushing me too far.

As for braces? Tried them, most don't fit properly where my joints don't line up correctly. This means wearing braces on a majority of my joints either pushes them out of joint or are too flimsy to do anything helpful. If you are lucky enough to find braces that help you, good for you, putting others down because they don't have that fortune and acting superior for the sake of being the physiotherapists favourite patient is hardly beneficial to anyone.