10:55pm December 21, 2011

Wordbrain and post-nerve-block pain crap

Okay. In the interests of “This is me the REST of the time.” (As in, not on my main blog doing bloggish authorish things.) This is a post I’m making because when I’m stuck in language mode I sometimes can’t shut up.

Okay every single thing hurts. Like every single thing. Including things that aren’t even part of my body, because… who knows. And normally all or most things hurt but this is like ratcheted up a lot from what’s normal these days. It’s warping my perceptions, my personality, everything. And it’s worse because I wrote something really really long today so my brain hurts too.

And I am amazed that I know one person in the world who would know all of that in detail even if I sent her an email about something unrelated to pain. That means a lot because most of the time I don’t talk about pain I just live it day in and day out and anyone who knows what to look for can probably see it all over me. But I don’t know that many people who know what to look for to such an extent that they can divine it from a two sentence email about an unrelated topic. Or even email me saying “Are you okay? Something seems wrong.” Most people can’t tell that stuff.

I’m also trapped a bit mentally. All the writing has given me a massive case of word brain. What does word brain feel like? For me it feels like this painting. Which is horribly orange with letters floating all over it. And it feels like disconnection from life and hope and love. Fortunately it never lasts long but when I do it’s like a prison.

This is the kind of pain where there’s this wave effect. When I first tried to describe it to someone she said that’s definitely how severe chronic pain works but that people used to milder or acute pain don’t expect it. It’s like you’re constantly running through various endorphin levels and dissociation levels and whatever else makes experience of pain change. So that one second you’re utterly immersed in your body and another you’re incredibly uncomfortable and yet floating off in the comparative distance and it just ebbs and flows back and forth. And sometimes you get so mixed up that you see your body doing some kind of behavior that indicates pain (groaning, holding body parts, becoming stony-faced and monotonous, whatever – pain responses are very individual) and you go “Why is my body acting like it’s in pain?” And then you try to stop and you can’t, or not very well, and you get frustrated with your body for acting in a way you don’t want it to act but it keeps on doing it even as you’re going WTF. And at some point you realize that you’re doing this because you’re in a fuckton of pain, and that you could not possibly get this confused about the matter if you weren’t in a fuckton of pain.

This past week or two my body has decided that laying on my left side causes a lot more pain than laying on my right side. But then it becomes difficult to persuade my body to just fucking flip over already so I end up spending most of the day and night on my left side. I don’t think I could write this if I were on my left side though. As it is every single movement hurts. I am using the most painless typing I am aware of: My iPod touch. But just barely touching my finger to the screen hurts the whole hand. the air coming out of my bipap is mildly cold but it’s searing everything it touches.

I don’t normally talk about stuff like this for several reasons. One of the foremost is that concentrating on pain usually makes it worse for me. But right now I seem to be of the opinion that not talking about it isn’t so much better than talking about it and that for the moment I’d rather be open about what things can be like. I made this tumblr for things I don’t normally blog about including day to day personal stuff like this. Also another reason I don’t normally talk about it is people see it as whining or a sign of weakness. So normally the only people who know the full extent are my friends – every single one of which has chronic pain and Gets It on a fundamental level. I don’t have to say a lot to them. Can just be a few words. Or a number. My friends and a website (Comparative Pain Scale) have finally got me as close to mastery of the 1-10 pain scale as I’ll probably ever get. So all any of us has to do is say a number and the other person will generally know intimately what’s involved.

Since the nerve block I’ve frequently been between 6 and 8. 6 is “Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain.” 7 is “Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.” 8 is “Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.”

(Note: Many pain scales warn against including ideas about suicide in pain descriptions because each person has a different level where they think of that. When I’m at 8 I sometimes think of suicide but other times just plain fall into this state where… sometimes I don’t want to exist, but not in a suicidal way, just in a “get me the fuck out of this or let me disappear or something” way. I have not contemplated suicide at all recently and don’t expect to. The month or so before my first ever nerve block, on the other hand, I could not promise even myself that I wouldn’t panic and throw myself out a window. But since psych treatment wouldn’t help, and would in fact make the feelings worse, I knew to keep my mouth shut and hope I could hold out. That was a lengthy period where stuff never hit below maybe 7.5 though, which is enough to fuck with anyone’s head. Oh and also keep in mind that pain scales are algorithmic. Which I don’t know what the word exactly means but in practice it means that it’s similar to the Richter scale of earthquakes, where each level is twice as bad as the last, rather than all in even segments from 0 to 10.)

At this level of pain, pretty much all pain gets amplified. Because you run out your own inner resources to diminish pain. So then even little pain hurts more. So this isn’t just the burning of nerve pain, it’s also a scraping sort of pain against any surface I touch, a grinding sort of pain in digestive sorts of areas, and all sorts of other little things made into much bigger things.

I am so glad that word brain is temporary. Because if this lasted forever if be miserable. I was amazed to read someone’s post where a medication fucked with their connection to words and to them that was like denying them the essence of life and they felt horribly cut off from joy and messed up by it. I’m like the polar opposite of that. If I don’t get away from words a certain chunk of my day I become miserable. Joy is gone, life is gone, love is gone, and the world is distant and carved up into horrid little blocks with the insides gutted and trashed. It’s the closest I can still get to what depression felt like when I had it. Not that I’m trying.

And the weird thing is when I get this trapped in words it becomes a compulsion. I can’t stop making words. Even as it feels worse and worse and I know I’ve got to stop. It takes a huge effort of will to pull away and force myself to do nothing until the real world comes back.

There’s this time period where my brain does… language monkey things. Like putting together blocks with its hands because it can. And then finally, it stops. And I feel the full brunt of the exhaustion, physical and mental, that word brain has caused. But the world is back, more so at least, and that makes me happier than being energetic in the midst of language hell.

Now I’m going to do everything in my power to allow that to happen so I can finally get some peace and quiet in this brain. And hopefully once I quit talking about pain it will get just a little bit less. This, though, is a good idea of the aftermath of writing – the stuff I don’t always talk about but frequently happens.

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