I understand that I am one of the lucky ones.
I have a boyfriend and a Mom who really watch out for me. I have rarely dislocated my joints, and my subluxing is under much more control since starting Pilates in 2012. While my digestive system is weird and supplements are a given, I can eat most things and don't have to be fed through a tube. While I had to give up my beloved career, I can still help others to create Art in limited doses when my body is up to it. I get to travel safely because Rick makes sure of it. I don't have to worry about going hungry, or without healthcare, or without a home. I am lucky. I know that.
And yet. And yet. My choices most days boil down to a choice between pain and pain...
Do I work through the pain of the aftermath of Pilates or a bike ride, or deal with the pain I'll have later if I allow my abnormal muscles to decondition (which they do rapidly for us EDSers)? Do I enjoy the bike ride (it's the only way I get to see the world, since walking is painful), or cooking a meal, or rehearsing a new piece for a reading, knowing that I will likely pay with spasms in my legs all night? Do I go out with Rick for a romantic walk in the snow, all the while afraid that an ankle will twist and tear and knowing how much pain the cold causes in the muscles of my thighs?
My friends tell me I'm brave. That they admire me. It's really kind of them. But am I to be admired if - since both my choices cause pain - I choose the one that also provides some pleasures?
Yes, I'm very lucky. Lucky enough to have resources and help to change my lemons into lemonade. But truly, how much lemonade can you drink before your mouth just feels sour?
I have a boyfriend and a Mom who really watch out for me. I have rarely dislocated my joints, and my subluxing is under much more control since starting Pilates in 2012. While my digestive system is weird and supplements are a given, I can eat most things and don't have to be fed through a tube. While I had to give up my beloved career, I can still help others to create Art in limited doses when my body is up to it. I get to travel safely because Rick makes sure of it. I don't have to worry about going hungry, or without healthcare, or without a home. I am lucky. I know that.
And yet. And yet. My choices most days boil down to a choice between pain and pain...
Do I work through the pain of the aftermath of Pilates or a bike ride, or deal with the pain I'll have later if I allow my abnormal muscles to decondition (which they do rapidly for us EDSers)? Do I enjoy the bike ride (it's the only way I get to see the world, since walking is painful), or cooking a meal, or rehearsing a new piece for a reading, knowing that I will likely pay with spasms in my legs all night? Do I go out with Rick for a romantic walk in the snow, all the while afraid that an ankle will twist and tear and knowing how much pain the cold causes in the muscles of my thighs?
My friends tell me I'm brave. That they admire me. It's really kind of them. But am I to be admired if - since both my choices cause pain - I choose the one that also provides some pleasures?
Yes, I'm very lucky. Lucky enough to have resources and help to change my lemons into lemonade. But truly, how much lemonade can you drink before your mouth just feels sour?
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