Sunday, May 8, 2016

A pain day in the life


I decided to scrap the video for this post. I don't make much sense and spend a lot of time not speaking. It's junk.

I don't think people get it when I talk about it, but I'm in pain pretty much whenever I'm awake. It's usually manageable, and I function just fine... my standard analogy is to compare it to snow on an old television: annoying when you notice it, but the brain easily learns to tune it to the background. Most days, if I think about it, I can usually estimate it at a 2 or so on a pain scale... bothersome if I notice, but it doesn't interfere much with my day-to-day life.

I'm not even sure how to measure it relative to other people. This is how I measure it compared to my experience with pain. I've dealt with this my whole life, since middle school, and I didn't even realize what I was dealing with WAS pain until someone described this kind of discomfort as a kind of pain. The best way I can think to put it is kind of like muscle fatigue and joint pain, and kind of like being on fire; I burn. I always feel like I'm radiating it.

It CAN be distracting. Left to my own devices with nothing to take away from it, I tend to spend part of my thoughts on managing it. My body doesn't like to be still if I'm not completely comfortable and at rest, so I can get fidgety trying to find a comfy position. Some days, certain parts of my body can be more sore than others, or "bug out" (I can't think of another way to put this) because of my tremors and hurt//tremor without warning. This is especially distressing when it happens with my eyes (it'll cause vertigo and disorientation), my mouth (which will often lead to me biting my tongue or lip if I'm speaking or eating, and can make me stammer), my hands (this is usually when I flat-out drop or break something I'm holding) or my chest (in larger muscle groups, there's usually more musculature around to make up for dysfunctions, but chest pain is just alarming as a rule; it's made weirder when it also involves twitching).

Being a computer nerd (albeit one that's a bit out-of-date and out of practice), I tend to think of mental resources like CPU processes. In this case, I have a process I call painmanagement.exe, and it's usually pretty tame, but there are days where it'll eat a lot of resources. If I seem both distracted (I'm often distracted) AND uncomfortable, this is probably why.



Today, though... today, I hit a 4. EASILY a 4. I'm going to call it a 4 to be safe, but it could have peaked at 5, it's hard to estimate at this extreme because it happens rarely. I'll have 3 days, where I'm uncomfortable but functional, but days like today are both rare and miserable.

It's not just the scale of the pain; it's duration. It's an endurance trial. I'm awake, I'm functional, but ALL THE MUSCLES hurt and won't stop. There is no alleviation, nothing really makes me comfortable and nothing is working quite right. My spatial recognition is out of whack and I have to WORK at all those lovely motor functions that were old hat when I was three years old: walking, especially, is an exercise in supreme coordination. It's like herding cats.

I walked to PS1 today, just to see if the Bluesmobile (the car we're gonna be working on) was available to check out. It wasn't in yet, that's cool, no big deal, but I had hoped the activity and some sunshine would head off the pain. It didn't. Even caffeine didn't help; it didn't make me jittery, it just made me feel more... radioactive, for lack of a better term.

I spent the entire walk there and back concentrating on making everything do what it was supposed to do, consciously moving my feet ahead of each other, trying to not stumble. Am I lumbering? Am I walking a straight line? People probably think I'm drunk. Wait, I'm hunching my back; stop that, stand up straight. What are my shoulders doing? I think they're hunched, too. No, now they're slumped down. Pull them up and back. Hey, the neck is hunched, too. Yeah, but that's to control the head; earlier, it was nodding around like we were some kind of bobblehead. What the hell are the arms doing? They're hardly swinging! Well, earlier, they were kind of flailing around. Guys, we're starting to goose-step, reel it back a bit and pretend to relax. Can we manage a "stroll?" Let's try singing a bit as we go, that usually helps. Nope, not enough breath to spare. The fingers are splayed, let's bring them in... we're not ACTUALLY radiating heat, y'know, that doesn't really help. HEY! Breathing! You have to exhale as much as you inhale or we'll end up holding our breath! Dammit, we're lumbering again and it's pissing off the right knee; bring it in line, people! Alright, what the hell is the face doing? We were scowling and scaring people, so I pulled the ears back and tried for a neutral face. Well, lets try to keep the brow from furrowing, but relax the ears, that's starting to cause a muscle tension headache in the temples. The mouth is closed, right? Okay. Stop flaring the nostrils so much. Guys, we're wearing sunglasses, we don't need to narrow the eyes that much. DAMMIT now we're staggering around again. KEEP IT IN LINE!!!



I had thought maybe problems I'd developed were due to trauma; after my first up-and-over on DeKalb St in '94, I had started experimenting more and more with what I could survive because, apparently, I'd spent my youth afraid of pain when I actually had quite a knack for dealing with it. The doctor that diagnosed me, however, pointed out nerve damage too systematic to be from trauma, and we had a lengthy discussion about the possibility that the widespread metabolic damage from decades of untreated Graves' may have resulted in this nerve damage. There was supposed to be more investigation, but... well... that stuff is for people with money and a supportive partner. All of my money was being funneled into an increasingly disinterested partner, so, y'know, screw me.

Days like this... they're rare. I had a lot of them a few years back, to the point that I experienced personality changes (which, sadly, nobody around me could be bothered to notice, let alone be worried about. I REALLY wish someone had, but hey I always have hindsight!), but, nowadays, they happen very occasionally. But, with one happening today, it gives me a first-hand chance to illustrate to people just how bad it can get, and talk about how this stuff affects my day-to-day behavior. I know I can seem disinterested, distracted, irritable, but be aware that it's often because of this, not you. If more people understand that, and understand that people can be sick and in pain without actively missing limbs or being on fire (or having to yell "CANCER!!!"), it creates a better environment for those afflicted. I don't like being shut out just because my behavior is misinterpreted, and I spend a lot of my internal resources just coping with it and making myself presentable.

I forgot where I was going with this, except to illustrate a strong pain day firsthand. I guess I'd just like people to recognize that I'm not as anti-social as I may seem, I just have a constant something extra to deal with and sometimes it can get hectic. Pain is difficult to express, especially when you start life dealing with it naturally, and I know plenty of solipsists who can't be bothered to think of what dealing with this kind of thing is like if they don't deal with it themselves. Social stigma for chronic pain is problematic... express yourself and fight it. You're human, too.

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