I remember predicting when we moved into this place that I'd spend my bad days sitting in bed, staring out the window at Dorchester Bay. Right now I'm staring at where the bay would be, were it not for the intervening fog, but otherwise my guess seems to have been rather accurate.

My left hip hurts. I'm not sure if it's something in the joint or in my lower back that's objecting, but it's doing so vociferously. It has the same peculiar electric quality as the moment you bash your funny bone, or bite down on tinfoil with a metal filling. It's not the dull throbbing red ache or the sharp stab of having actually injured myself; it's the pointless pain of a nerve that is holding a grudge over something, possibly something imaginary, and doesn't want to let go.

It started before Arisia, but I had a show to do, so I ignored it until I noticed it was starting to make my gait go funny on stairs. Funny thing about neuropathic pain; even if it didn't begin with you actually injuring something, your body responds as if you had, by knotting the muscles around the sore spot in order to protect it. I wanted to put my foot sideways and tip my knee in so I could pull myself up stairs with my thigh rather than push from behind, even though that did nothing to change the way anything felt. Survival instincts are odd sometimes.

In any case, walking cockeyed like that will eventually do real, tangible bad things to your knee. So I made myself locomote normally until I got home from work on Friday. I made sure I had nothing to do over the weekend. I think I had a peanut butter sandwich for dinner. And then for the next two and a half days, my meals consisted of tea and painkillers, because fuck me. Certain kinds of movement help, but shockingly enough, there is a limit to how much hula hooping I can do in one go. I don't know what it is, because I make myself stop at the end of the movie, but I assume this limit exists, especially when I'm getting most of my calories from instant Thai tea mix with "cream" (read: dried milk solids and non-dairy coffee creamer powder) and sugar (amazingly, real sugar).

I've spent most of the rest of the time trying to pull my left knee over my right shoulder. Me being me, I am having an unreasonable amount of success at this, but can't get anything new to pop, so as soon as I let go it goes right back to hurting.

People ask me, "How much does it hurt?" I don't know. More than 'ouchie' and less than 'I can't stand up'. The standard pain scale that runs from "happy face" to "crying frowny face" isn't very useful for chronic things. It's more good for acute pain of recent onset, where you can compare how much something hurts now to how much it didn't hurt before. If you were fine 48 hours ago and now you're doubled over and begging for a morphine smoothie, that's important diagnostic information. If it's hurt the same for a week and a half... maybe that's normal? Who knows?

This is more useful. It ranks pain by how much it affects your ability to function, rather than how it 'feels'. This is something I can note intellectually even when my internal monologue is mainly reminders to smile at others, interspersed with a lot of free-floating, family-unfriendly words. I have a rule that says I am allowed to think whatever I want, as long as I behave like a civilized human being. I routinely do not notice how much something hurts until I realize that, while I've been physically negotiating the T like a normal member of the herd, I have been fantasizing about kidney-punching every. single. person. in front of me until the fucking crowd fucking moves fucking faster go just go what is the fucking matter with all of you JUST GO.

According to that chart, I have learned how to compensate for up to about a 6.5. I don't know how seamless it is; I can't tell from inside, because it is an altered state of mind, and it's distracting when every other thought you have is ow fuck i want to go home. Probably if you knew me well you'd notice I wasn't the zippiest I've ever been, but for people who aren't accustomed to me and my big mouth, it would be undetectable. I hit 5 regularly, usually with musculoskeletal stuff that makes moving uncomfortable. I kept putting off a trip to the supermarket, because while walking down to the T stop would be moving and therefore better, exiting both the house and the station at the other end would involve stairs, and being on the train would mean sitting or standing still for a while, both of which made things much worse.

I can do certain things up to about a 7, especially if nobody bugs me to take my hat or sunglasses off. (Those are usually either from migraines or eventually bring one on, so light is my mortal enemy.) I have to be given time to make a plan, and then allowed follow through on it without any interruptions or alterations. I don't have enough capacity to recalculate if something changes, or make any new decisions, however small. If you try to force me to do either of those things, I deadlock and fall apart. Being sick will also grind me down that far. I remember a time, years ago, when I had the honest-to-God flu, and a roommate who was trying to be nice asked me if I wanted her to leave the windows open or closed when she left for work. I hauled the blankets over my head and wailed at her not to make me responsible for the state of the windows.

Around 8 is when I start bowing out of plans on the grounds that I am 'sick'. At that point I am not physically capable of giving a shit about consequences anymore, so I just send out cancellation messages and go to bed. You could set the house on fire around me and I'd just curl up tighter in bed and think 'huh. fire now. okay i guess'. A guy on reddit recently illustrated how depressed he'd been in the past with the story of how a guy with a gun jumped out at him one night and demanded his wallet, and he just said, "No." The mugger was very confused and eventually went away, but the point wasn't that he was stalwart or brave or fierce; it was just that was in such a state of shutdown that he had no feelings left one way or the other about being shot, and lacked the energy to be robbed properly.

[I don't recall ever hitting 10, but I may have hit a 9 when I was five and broke my forearm. The part I do remember is that they kept giving me IM Demerol, and I kept telling them it wasn't doing anything. They finally topped me out and had to set the bone no matter what. I don't recall that specific chunk of the night, which is probably a thing my brain has done on purpose. I'm told I went dead white and nearly passed out. I definitely hit a 9 the time I cracked a molar and exposed a root, which was infected by the time I could afford to go to the dentist. It is the only time I have ever seriously considered banging my head against the floor until I passed out, because the initial bottle of Vicodin and the later bottle of Percocet did not work. I coped by sleeping as much as I could, titrating myself full of NSAIDs, and knocking back DXM until I was no longer aware of having teeth.]

People also ask me why I keep doing stuff, if things hurt 'that much'. Firstly, define 'that much'. Nobody ever tells you when that is, or gives you any good criteria for deciding for yourself. If you're sitting down, it doesn't hurt 'that much' and you're a lazybones who should be working like everyone else. If you're still doing things, then it's your fault for not taking care of yourself by sitting down when it hurts 'that much'.

I do it for the same reason I walked home last night festooned with four bags of groceries and two hula hoops, in sleet and wind gusts of up to 40mph: There isn't another option. I was at the T stop. I needed to be at home. So I walked. It was unpleasant. Lots of things are unpleasant. You learn very quickly that your feelings do not matter. The universe is a cold sociopathic kidnapper holding a gun to your head and telling you that you will do the thing or you don't get to survive. So you do the thing, and shut the fuck up about it before worse happens. If you're incapable of doing the thing, you might get mercy the first couple of times, but it's at the whim of your captor. Someday they're going to run out of whims. You trudge home in the sleet anyway, in case that that day isn't today.

I hope that didn't sound inspirational. It wasn't meant to be. I am incredibly cranky right now, and that was meant to be an illustration of my current mood, and why I have given up and decided to just spend the day in bed crying. I do not do things while I am in pain because I am strong or courageous or whatever. Don't kid yourself. I do things under duress. 


  1. And yet, like any good account of strength under adversity, it is at least somewhat inspirational. Rest assured you have also managed to convey your cranky mood.


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