What is Ehlers- Danlos Syndrome?

I have Ehlers-Danlos Syndrom type III with types I and II characteristics. I struggle with my disorder every minute of every day. It affects everything I do. It is a loose joint, collagen and tissue connectivity disorder. I dislocate frequently, My skin cannot heal properly from wounds, chronic fatigue, chronic pain, collapsing spine, fallen arches, blah blah blah. I don't like describing it because I sound whiny. But if you want to know more, Wikipedia offers a great explanation and so does the EDNF website.

But just to let you know about my personal battle with it, I'll tell you a little bit of what I experience on a daily basis.

We'll start with the morning. When I wake up I take about 5-10 minutes to move my body with small movements to see if I have dislocated in the night. Usually I have dislocated my shoulders, but occasionally my knees and hips are dislocated. I have to do this because if I JUMP out of bed it is extremely unpleasant to discover a dislocation that way. So I spend some time putting myself back together and then giving myself a few minutes to let the pain of that subside. Then I slowly go about my morning business. Holding a toothbrush and hair brush is painful.  because my finger joints feel rusty and ungreased. (My hands and hips are the worst problem areas for me).

As I go throughout my day I have to be mindful of wearing shoes with arch supports because I have fallen arches and plantars fasciitis. I have to be conscious of not injuring myself because wounds don't heal properly. I also wear very little make up because our skin is like elastic and what happens the more you tug and pull on elastic? It wears out and becomes loose! So I avoid wearing makeup so that my skin doesn't stretch when I spread makeup on it.

I struggle with every day tasks like opening the fridge door, opening a car door, gripping a steering wheel, gripping a grocery cart, etc because my hands are so bad. I do wear finger splints to relieve some of the pain, but there's just some pain that you can't do anything about.

At night when I sleep I wake up every time I turn over because as my body subluxes it is prone to dislocations and I have to be careful to turn carefully to prevent that from happening. Plus pain keeps me awake.

I do not use pain medication of any kind. I use strength training machines to help strengthen the tissue around my joints to keep from dislocating and then just stay active to prevent myself from subluxing. And every other pain I just deal with. It does take a lot of time out of my day to remain active and stay strong. People ask me how I can take 2 hours out of my day to do that. Well, if I don't do it I go back to walking with a cane and a walker. And then I can't do anything at all with my kids. So I am becoming a better parent and person by taking those two hours every day to make sure I am functioning at the max for the remaining hours of the day.

There's more, like my spine is collapsing on itself, the mental sideaffects of EDS go unnumbered and my C-section and appendectomy scars could supply a hooror film with great images! But whatever. I talk about that a little on the blog, so whatevs.