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Amoslass
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Location: Australia
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Trig Feb 01, 2011 at 07:34 AM
  #1
I know I am not alone...there's all of us here for instance.

But ....I dunno, I shouldn't type when my pain meds are kicking in, not that they do much.

I have Ehlers-Danlos Syndrome, Hypermobile type. I'm all bendy and soft. I suffer chronic pain...everywhere. I recently went to a pain clinic and had to fill out forms. There was a picture of a person and I had to colour in all the places I hurt. I coloured in everything but the lower left leg. Funny, it wasn't hurting that day.

I look normal.I sound normal. I walk with a cane though and get sympathy from old ladies. Thecane is for balance and security. And to make sure I get a seat on public transport.

Anyhow....I am so so tired. I know I have the gift of art in me, I know I am a nice person, but why stay for everyone else? That's all I'm doing, guilt is what keeps me alive.

Pain, so much pain...since I was 12. I cry and I take too many pills and I hate being like this. I can't explain how I feel to many people because it looks like I'm weak, a complainer. No one wants to hear that.

I'm sorry, I'm rambling....I don't know how to express the pain, especially as Ehlers-Danlos is rare and noone knows what it is or how it will affect meover time (only, it will get worse). All I get from doctors is "oooo, Ehlers-Danlos! Yay, an interesting case! Show us how stretchy you are!"

A one-woman sideshow.

I want to be free.
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Ardmore
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Default Feb 01, 2011 at 08:21 AM
  #2
Quote:
Originally Posted by Amoslass View Post
I know I am not alone...there's all of us here for instance.

But ....I dunno, I shouldn't type when my pain meds are kicking in, not that they do much.

I have Ehlers-Danlos Syndrome, Hypermobile type. I'm all bendy and soft. I suffer chronic pain...everywhere. I recently went to a pain clinic and had to fill out forms. There was a picture of a person and I had to colour in all the places I hurt. I coloured in everything but the lower left leg. Funny, it wasn't hurting that day.

I look normal.I sound normal. I walk with a cane though and get sympathy from old ladies. Thecane is for balance and security. And to make sure I get a seat on public transport.

Anyhow....I am so so tired. I know I have the gift of art in me, I know I am a nice person, but why stay for everyone else? That's all I'm doing, guilt is what keeps me alive.

Pain, so much pain...since I was 12. I cry and I take too many pills and I hate being like this. I can't explain how I feel to many people because it looks like I'm weak, a complainer. No one wants to hear that.

I'm sorry, I'm rambling....I don't know how to express the pain, especially as Ehlers-Danlos is rare and noone knows what it is or how it will affect meover time (only, it will get worse). All I get from doctors is "oooo, Ehlers-Danlos! Yay, an interesting case! Show us how stretchy you are!"

A one-woman sideshow.

I want to be free.
I see what you mean, my father suffers pain all over from my of his injuries from the past, I hate seeing him like this and yet he still gets up in the morning.

Keep up your strength, I wish you luck.

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