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5:34am March 17, 2013

gibzblog:

Sometimes I wish I could swap bodies with someone. Not so they could see what it’s like to be chronically ill, but so I could see how sick I am, because I can’t remember what healthy feels like.

I couldn’t.

I have trigeminal neuralgia. Once, someone did a nerve block that only lasted a couple hours. It totally removed the pain in one of three parts of my trigeminal nerve.

It was horrible. I suddenly had a basis for comparison for pain that I was used to, but that went from seven to ten on the pain scale routinely. The nerve block showed me zero.

When the nerve block went away, it was like feeling a wall slamming down between me and the world. It was the cruelest sensation I have ever felt. I had two months before the real treatment started. Those two months I lived on a friend’s couch because that and one other related event had made my pain feel so strong I wanted to die. And I wasn’t even depressed.

That two hours of lacking pain in that one branch of that nerve taught me how things should be. And that was a horrible thing to do to someone in severe pain with two months before treatment could start.

I don’t just have TN. I have neuropathic/central pain just about everywhere. I have joint pain from several sources including hypermobility syndrome, with some body parts worse than others. I have TMJ from a skeletal deformity. I have several injuries from falling all the time, that never totally heal because I can’t handle the physical therapy. I have something going on with the nerves coming out between my neck vertebrae on the right side. And a lack of neck curvature. And tendinitis. And spasticity. And stuff I’ve forgotten. And stuff that we don’t have a name for yet.

The idea of swapping bodies with a nondisabled healthy person intrigues me in many ways. But when I think of what it would be like to go to the body of someone who knows what 0 on the pain scale really is. Bone-chilling terror. I like my body. I would want to go back to it. But the amount of pain I’m in. And that amount of pain shown as it really is, with a basis for comparison. It horrifies me. I don’t know if I could take it. I have never not been in a lot of pain. I can’t imagine losing it all then coming back to it. All my coping mechanisms thrown to pieces. I just… I can’t. I know it’s imaginary but it’s still scary as hell.

There’s one other thing that scares me. And that is oddly enough, being out of touch with the parts of reality that truly seem to sustain me. Since I am cognitively disabled, the nondisabled person would likely lack my cognitive traits that mean a lot to me. That tells me something though, that it goes both ways. They wouldn’t want to trade places with me either, because of cognitive traits they hold dear. I think I could handle that for a short time though. And even be curious about it. But I wouldn’t want to live there, I’d be relieved to get back, and I think I’d feel a little trapped while I was swapped into their body. Because I value the way I think as much as they value the way they think. And it may be fun to find out about how others think. But there are certain very specific parts of my thinking I hold very dear, and wouldn’t like letting go of.

But it’s the pain that’d get me in the end. There’s nothing worse than a short reprieve from severe pain, only to go right back into the pain at the end. It destroys every coping mechanism it’s taken years to build up. It’s horrible. And thus, I don’t want. ARRRRRGH. Bad.