Monday, November 21, 2022

A Disease of its Own Kind 

Tormentors in the eighth circle of hell? Yes, that seems about right.

They call it chronic spontaneous idiopathic cholinergic urticaria.

Chronic, meaning, you’ve got it for good, mate.

Spontaneous, meaning it can happen at any time.

Idiopathic, meaning without rhyme or reason.

Cholinergic, relating to nerve cells.

Urticaria, that’s the hives bit.

Put it together and what have you got? Bibbidi-Bobbidi-Boo. No, you do not have bibbidi-bobbidi-boo. You’ve got terrible hives that can happen any time, without a reason, forever. That’s what I’ve got. I recently read about a woman’s experience with this strange condition that essentially is your immune system going all batty, firing off an allergic reaction to things that shouldn’t cause allergic reactions. Things like cold, heat, vibrations, loud noises, looking at goldfish for too long… OK not that one, but all the others, yes. What I could relate to more than anything in this article wasn’t the hives itself, or the confusion of why she was getting them, or even the suddenness of its appearance, what I could really relate to more than any of that, was how trivial everyone else seemed to treat it. Not just that being a bit itchy was trivial, but that the whole thing was somehow funny, unlikely, unbelievable and completely misunderstood. No matter how many times she told people, and no matter how she explained how she felt, the closest anyone came to anything approaching understanding what she was going through was confusion and disbelief.

I’ve described the worst of my hives as some kind of strange electrical storm that took over my skin and was a combination of psoriasis, eczema, the worst sunburn you’ve ever had, with occasional bouts of being attacked by murder hornets. I would be lying if I said there weren’t moments I was brought to tears, panic, and sheer anger. There was a period of several months where I doubt I slept more than an hour at any time. Weirdly, I thank all the gods for the pandemic because just as the world came to a standstill, when were were told to stay inside, avoid other people and when work slowed to a crawl, that was exactly what I needed. When wearing clothing is painful, or you are embarrassed by just how much of your skin is falling off your forehead, or when your eyelashes are full of dead skin, or your arms are covered in claw marks like telltale signs of self-harm, the one thing you don’t want to do, is see other people. Other people can go to hell.

Being in nearly constant pain or discomfort had other side effects. Sleep deprivation was the primary one but also an undo amount of anxiety that I still struggle with now, even two years after receiving a sort of miracle drug that I receive monthly (it’s also the sort of miracle drug that costs about $18,000 CAD a year to get, so no, I won’t be leaving my benefits plan… um, I mean job, any time soon). The anxiety I felt was whenever I would get warm and begin to perspire, the hives would begin. For me, over heating is or was, the trigger for my hives. Not simply getting warm, but right at the point of perspiration. At least it was. Now it can be triggered by any old thing (see, spontaneous, idiopathic). For me, having some sense of control did help the anxiety that at any minute I might burst into flames of itchiness but for the irrational part of the mind the thing that actually helped was cannabis. The active ingredient of THC helped tremendously. The lesser non-hallucinogenic component CBD, didn’t help me at all. As this is all perfectly legal in Canada, this is great, yet, my allergist has suggested I stop using it (without a good explanation I might add). They also suggested I stop drinking alcohol, which makes sense because within minutes of drinking any alcohol I become itchy. Alcohol causes blood vessels to dilate which is akin to opening a gate allowing histamines in the system to flood in. He also recommended I stop taking a probiotic/prebiotic supplement which I was taking to improve my gut flora and by extension my immune system (his reason: we have to eliminate anything that might have an effect). I’ll probably stop taking the supplement because after almost nine months I haven’t noticed any significant difference. The fact that I have also not noticed any effect by not taking THC also gives me all the argument I need to tell the allergist/immunologist to stuff it and that after months of abstaining, I will begin using it again, unless they can give an actual reason to stop. Well, even if he had one, I wouldn’t because whatever the reason it doesn’t compare to my “lived experience”, which I will use as outstanding evidence against his complete lack of evidence.

I’m not sure writing this is anything other than cathartic for me, and I don’t expect a wave of sympathy or understanding. What I’ve learned is that when someone offers me a drink, I’ll simply say no thanks and ask for an alternative. I’ve also learned that if I have to leave somewhere to deal with an outbreak of hives (stripping off all my clothing, cooling down and drying off seems to help after about 30 minutes), I don’t need or even care to explain myself. You do you, I’ll do me. Mostly, what I’ve learned is that you are the only person who has to live in your skin and you can’t expect others to understand it, so you shouldn’t put too much weight in any need you may want for that understanding.



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