One of my toes hurts. It doesn't look bruised, and palpation suggests it's not broken or dislocated. It's just sort of a stabby-yanking pain, like the high-tension wire-pull feeling you get when you try to stretch a muscle that doesn't want to cooperate, only it happens kind of at random.

Moving it doesn't help. Neither does not moving it. Pressing on it, not pressing on it, elevating it, dangling it off the edge of the bed, keeping it warm, keeping it cool, and knocking back more Aleve don't do anything, either. The pain is neuropathic, an adjective formed from the roots neuro-, "nerve", and -pathy, "with which something has gone wrong". A nerve has become angered for mysterious, inscrutable nerve reasons, and now my toe hurts.

This happens a fair amount. Normally my brain just sort of edits it out. I pay attention to things that change state with stimuli. A foot that twinges sharply when I put weight on it or head pain that lessens when I turn off the lights are things I can affect, and I'm not dumb enough to do things that make parts of me hurt more. Some aches are in a gray area; I can't really stop using my knees or my back, but I make an effort to be nice and not bang them up any more than I really need to. Things that take up hurting for no real reason, don't progress to hurting more in a way that suggests damage is being done, and don't stop hurting when I stop using them, I ignore.

The toe doesn't really hurt that much -- it's not to the point where I can't just quit paying attention to it -- but it annoys me. It's the standard bearer. When one thing knocks me out of whack, my nervous system basically just throws its metaphorical hands up in the air and gives up trying to maintain homeostasis. Sort of like Boston PD Parking Enforcement on Allston Christmas. Do whatever you want, try not to break anything important, we'll sort things out tomorrow.

I don't necessarily have a lot of reserves for dealing with stressors. It's always seemed to me that with other people, if their friends were a 2 on the stress scale, and work was a 3, and maybe this one specific day they had bad hay fever that hit a 4, they'd be suffering to the tune of 2 + 3 + 4 = 9 and be able to drag themselves forward whilst complaining, whereas I'd end up at 2 x 3 x 4 = 24, and it would tank me completely. Whether this is down to health issues or inborn temperament, or if I'm just a morally-deficient parasite, depends on who you ask. Regardless of the reason, it is what it is, and I've been this way as long as I can remember. Getting shouted at has never done anything to fix it, so I try not to make it anyone else's problem. I shout at myself enough for everybody.

Right now I think the immediate cause is that the weather took a sharp left turn at Albuquerque, and went from 'quite nice, really' to 'unbearably hot in between bouts of violent rain' over the course of about 24 hours. I deal with heat poorly at the best of times. Growing up in Phoenix was fun. I had no idea why anyone would ever enjoy anything about summers until I moved to New England and realized I wasn't at risk of heatstroke every time I went outside, and that non-Bermuda grass is soft and pleasant to walk on.

I kept track of all of the random bodily malfunctions for a while, thinking I should probably have some kind of journal to show a doctor. There were a depressing number of entries on the spreadsheet, none of which I could do anything about, so I quit. A similar fate befell the records when I tried keeping track of how much I was eating. The sheet says I only cracked 1600 calories a day two or three times over a couple of weeks, so clearly something went wrong there. I'm still walking around and my clothes still fit reasonably well, so I suspect the problem was less that I actually eat that little and more that I was too lazy to measure anything and guessed at portion sizes by eyeball.

People complain about the aches and pains of getting older, so I assume some amount of this is expected when you hit your mid-thirties? I really have no idea how normal it is or isn't. I'm unlikely to need any kind of hard proof in any case. There is technically a genetic test I can take that will show if I have any of the polymorphisms associated with Ehlers-Danlos, but in clinical practice nobody is going to argue with me after I've hooked my fingers on the edge of the exam table and bent my hand backwards.

It's amazing how much less flack you get for self-diagnosis when you can put on a live demonstration. I would have been casually swinging my foot over my head twenty years ago if I'd known it would magically make people fucking listen. Not my mother, obviously. She bends the same way (AFAIK, most of the family does, on both sides; the inheritance pattern for EDS is autosomal dominant, albeit with variable penetrance) and she for some reason thinks she's normal. But, you know, medical personnel who still reside on Planet Earth are remarkably attentive after I've pretzeled up in their office.

The best (read: most irritating) part is that this chaos in the central office also sets off basically the entire alarm panel, and I can't shut any of it down without also knocking myself into a coma. I gave up on talking to Jazmin the other night because I couldn't tell if the interaction felt off because she was tired and didn't want to chat, or because I felt lousy and that was overriding any real feedback. It's kind of like checking yourself for injuries with broken fingers -- if touching everything involves an OW, no matter what or where it is, it might actually be your probing hand that's busted.

[There's a similar story, probably apocryphal, that goes around in IT circles. A new hire comes bursting into the central networking office of some global conglomerate shouting that everything is broken, their Big Board O' Status Lights has gone completely red, outages all across the world, nothing is responding to anything, complete collapse. The old-timer in charge looks up and calmly asks, "Has global thermonuclear war broken out?" Well, no, says the n00b. "All right, then," says the greybeard. "Go reboot the status monitor." And after stabbing the reset switch on the machine that produced the outage reports, all was well again.]

I know things are getting unpleasant when I start wanting to lock my bedroom door. I know full well this is not going to do anything. If anyone knocks, I'm just going to get up, unlock the damn door, and open it. It's more that I'm burrowing in and trying to prevent anyone from bursting in and startling me, in the hopes that if I can just avoid making any sudden moves or having any unnecessary sensory input my headache will go away and random body parts will stop complaining. This is also ridiculous. One, my roommates aren't that rude, and two, by the time I've had that thought I'm already unhappy enough that the sound of a knock alone is enough to make me jump out of my skin.

Two and a half, most of the sharp noises in my immediate environment are produced by either a food bowl or an indignant rat getting shoved off a shelf and landing hard on the floor of their cage. Locking the door doesn't ward them off; they live in here with me.

Comments

  1. Pain and heat are terrible things. I hope tomorrow will be better.

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  2. I cannot comment on phantom pain really (other than I deal with much as you do, as much as you do), nor am I particularly flexible (save the completely fucked right shoulder), but I can comment on this:

    "There's a similar story, probably apocryphal, that goes around in IT circles."

    This it not apocryphal. It is quite normal in IT circles. It also speaks volumes to just how much realtime monitoring systems utterly suck.

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  3. "People complain about the aches and pains of getting older, so I assume some amount of this is expected when you hit your mid-thirties?"

    Not so much. These days the people complaining tend to be at least a generation older than you, or are magnifying the wear and tear by chronic sleep-deprivation and general neglect of systems maintenance.

    In your case, you've been under considerable chronic stress for a long time. That kind of thing is known to produce random, mysterious aches and malfunctions which spontaneously clear up once the stress is removed (divorce goes through, horrible job ended, etc.).

    So probably this kind of ache also will get better when everything else gets better.

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    Replies
    1. All of ye random shit that hurts for no reason is the kind of ye random shit that is expected to hurt sooner or later in Ehlers-Danlos patients. You know how when you've had a cold and coughed so hard you basically sprained your abs, and subsequently discover how very many unexpected things you use your abs for every day? You would be amazed at how many things in your body use the same kinds of connective tissue. Go ask Google, M.D. about it and you'll find loads of super-fun symptoms.

      Normally I actually shy away from self-diagnosis, as it's unhelpful about 90% of the time, but at this point it's either "I have a kabillion weird and unrelated things spontaneously wrong with me" or "I have Ehlers-Danlos, hypermobility type, and in retrospect so does the entire goddamn family". Stress doesn't help, but even if I had the cushiest life possible, I would still be like this, to a considerable extent.

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