11:37pm January 7, 2012

Okay I really need to understand my body better.

I’d been beating myself up – and having nightmares about my physical therapist – because I just could not bring myself to do a single one of my physical therapy exercises anymore. Even though I only had a few weeks left.

Then my friend told me that people don’t generally just become unmotivated. That there’s always a reason and I needed to figure out what the reason was, because that’s important. And that I had to quit feeling guilty about it.

And I fairly quickly figured out that my back has been hurting like hell recently.

(This was, I think, the same night I went home and rapidly found my pain level was solidly 8, then almost went to the ER thinking I must have damaged some body part. Only that happened after our conversation.)

I think this is the same back pain that showed up sometime in 1999 and has periodically come and gone since then.

The original time it showed up I went to my doctor. He told me to bend over. I bent over. He then told me I was far too flexible to have back pain. Years later, during a recurrence, a doctor said he thought the back pain might be caused by something about my joints being too flexible.

I tried to go to university the first year it showed up. Throughout this time, my body kept bending itself into odd postures while walking, to try to stop the pain. I’m not someone who normally shows pain in typical ways. But during this time period I often ended up literally writhing around on the floor screaming. But I had enough perceptual and cognitive problems that I didn’t usually link that to the back pain.

I thought I was doing these things for no reason. I was convinced that if I tried hard enough, they would not happen. They kept happening so I began to beat myself up for it.

Meanwhile a lot of people around me were muttering crap like “This is what happens when crazy people go off their meds.” I half believed that too. It now angers me that I was so thoroughly steered away from seeing a physical cause to behavior that in most people would be seen immediately as a sign of severe, emergency-level pain.

I still seem to do it to myself. Hence the past few weeks of beating myself up for being “unwilling” to do my hip exercises. I always seem to take “It’s a motivational problem” as my first assumption.

But after yesterday I know for a fact it was pain.

First there was the period I talked about where my pain level was 8.

Then I thought I’d tamed it a fair amount. So I thought nothing of it when my neighbor had a mini-emergency and needed me over for 10 minutes or so to put her compression garments on so that she could get around the house without endangering herself.

First I couldn’t get up off the floor.

Then once I was able to get up (a really long process), I started uncontrollably laughing. Not because anything was funny – it’s a response I have sometimes to extreme situations that would make most people cry. I could feel my body putting out some rather futile endorphins. Then other uncontrollable noises started happening. And then the world started fading out altogether.

Friends who saw me yesterday and know how different levels of pain manifest in my behavior, put it at nine. Which means, aside from my August hospitalization, this is the worst pain I’ve experienced in years. (I haven’t had anything like this bad since before I started getting nerve blocks for trigeminal neuralgia.)

I think I believe them: All day today I’ve had that nasty feeling I get after really bad pain. Where it feels like I’m worn out through vigorous exercise, even when I’ve been lying down the whole time. I slept a large part of the day because of that.

I’m feeling better though. By yesterday evening I was in the 7-8 range and that already felt good compared to the afternoon. Which says a lot. Today it’s more 6-7. And a whole lot of that wiped out feeling.

But I think I’d better not volunteer to do anything else that involves a lot of moving around and staying in positions that aren’t lying on my right side. I had also better seek medical attention eventually. This doesn’t seem to be going away as fast as I’d hoped, and I’d like to find out if there’s something structurally wrong in the spot that the pain always starts at. I really have to stop perceiving pain as lack of motivation because then I push myself and make things worse.

And whatever asshats still think that most disabled people just need to be pushed, as hard as possible, because we lack sufficient motivation… I so much want to see them push through this kind of pain. Especially because I know they’d be unable to do much of anything – because they aren’t acclimated to severe pain and don’t have the lifetime of chronic pain that has given me coping skills they probably don’t even know exist.

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