Today's is just a short little entry.
I've realized that they told me, ages back, that most patients with spinal cord injuries can expect some changes and some repair up to a year after their injury. Some changes won't take place until nearly a year after initial injury.
However, after about a year, you rarely see any improvement. After a year, it's generally assumed that your body has regrown and healed what it can.
That's a problem for me. Intestinal function- bowel and bladder function especially- still isn't 'normal'. It isn't acceptable. It isn't regular, or predictable. It seems random, and inconvenient, and problematic.
I've been thinking, "well, it will all get better; somehow, we'll find the answer." Because so far, everything has had an answer. I recovered enough brain function and physical awareness to the point where I could talk, sit up in bed, could swallow food normally, etc. I persevered and refused to be pushed anywhere in my wheelchair so that my upper body would get stronger. I got my leg amputated and got a prosthesis to overcome the fact that a) I couldn't feel my leg, and b) I couldn't walk on my foot. So it made sense that eventually, I would figure this out; that eventually, there would be an answer.
Now, I'm not so sure.
If, as I think it is, these problems are caused by the nerve damage in my back, the time has passed when that would be expected to heal. By the books, I'm finished healing on my own; I'll have to figure out a way to live with this.
But then, 'by the books' I shouldn't be alive.
I shouldn't have woken from a medically-induced coma.
I shouldn't have been able to talk.
Shouldn't have been able to process executive functions; shouldn't have been able to swallow 'real' solid food; shouldn't have been able to stand; shouldn't have been able to walk.... I feel like the medical community just threw up their hands, and said, "Well, let's just wait and see what happens." with my case. Somehow, my body has defied every negative diagnosis handed down to it. One of the few remaining problems I have daily is the diplopia- the double vision- which I still deal with. It makes things like catching a lacrosse ball difficult, but I just acknowledge it and work around it. And since my early awareness of the issue, it has repaired itself over halfway- instead of seeing 100% double, it only exists in the left side of my vision.
So hey, maybe when I was a kid some aliens or the government did some tests on my body and I'm superhuman. Maybe I have some small but potent powers of regeneration. Who knows? Yeah, that's ridiculous, and I'm not serious, BUT! Think about it: from what I've been told, every doctor and nurse and medical report on me had one image in mind, but my body wasn't following the medical reports. It did what it did, which was to continue to defy *experts* in just about every field of medicine I've had to deal with since my injury.
So maybe I'll still get better.
I just have to ask myself: why the fuck hasn't it healed yet?!
See, with the nerve pain in my leg, I can't relax anymore. You know how, at the end of a long day, you just *collapse* into a chair, or on your bed, and let everything just drrraaaaaaiiiiinnnnn out of you? You let all the tension just seep into the mattress, and you're dead to the world for a few minutes.
Yeah... I can't do that. When I collapse onto the bed, or into a chair, I lie there for a second or two, relaxed and limp... and then my leg twinges. It spikes. It bites and tingles and bothers me. Nerve pain isn't like normal pain; there is no ignoring it. For me, there is no way to look past it. I can choose to fight it and just not move sometimes, but it's still there. At that point, I have to focus on not moving; and that isn't relaxed. No; I'm forcing it to be still.
So I can't do those periodic lazy minutes; I can't get that respite through the day.
Another time you use to simply relax and let go of all your stress is in the bathroom. Not to be gross, but on the toilet, you can relax and let things go and just... not do anything.
Not me. Not anymore. Not only does my leg keep hurting; the bathroom is actually a stressful place for me now. I have to strain to void at all- again, the opposite of relaxing. And with the issues I've been having, I'm never sure what's going to happen. If anything. So that release you get, where you get to just let go of whatever's been building up all day... nope. Not for me.
I feel like I can't relax. Ever. At all. I'm constantly clenched and flexed. I ball up and start rubbing and massaging my leg (which doesn't do anything, but I have to do *something*) every so often; I twitch. I'm told that in my sleep, I trash violently now, that my left leg doesn't sit still, and that at times it jerks so violently that I almost throw myself out of the bed. (this is a hospital bed with rails on it)
There is no 'safe place' in my body anymore. There is no quiet corner I can hide in.
And it's driving me insane. I'm exhausted and tired and sore and I just want to relax. I just want to not worry about this for a little while. But that can't happen.
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