Ehlers Danlos Syndrome Looks Like…

When I tell people I have Ehlers Danlos there is always much  confusion. EDS affects my connective tissue it makes me “flexible” which seems to be all the rage as of late.

Flexible for me means chronic dislocations and extreme joint pain. It isn’t a gift nor is it something that I like. I find myself sitting in odd positions that others comment on. “That sure looks uncomfortable.”

The way I carry myself and sit are uncomfortable but when I sit a specific way sometimes it helps ease my pain.

EDS has many complications. One of which I have experienced recently, the bleed in my brain. You can read about this here: https://annawerrunblog.wordpress.com/2016/07/25/the-brain-bleed/

Ehlers Danlos has no cure. It is not something I enjoy having because it hurts me. I dislocate at the most inconvenient times, like being on the toilet and having my pelvis decide it wants to be outside of my body instead of in. Thus causing me to be stuck on the porcelain throne. I call to my husband, “come thither.” I wish that is what came out of my mouth but it is more of a shriek that comes out.

My husband helps me get off the toilet and situates me somewhere else. This hurts everytime. Dislocating isn’t ideal as the more I do it the more pain I am in. Like I have said before the pain is like being deboned alive.

I recall another time when I dislocated my ankle. Everytime I stood it up it rolled out from under me and I crumpled to the floor.

My husband was at work, I ended up stuck on the couch for four hours. When my husband arrived I asked him for water and my crutches that were in the room. Days like this remind me that I need more help than I care to admit.

Ehlers Danlos is a life of pain. It is incurable, it will never give up fighting against my diseases. I will forever keep on pushing forward in hopes of better tomorrow’s.

I remain hopeful always.

Anna

 

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