The Wolf

The actual reason it's called lupus is because of the malar rash, which is odd, because we actually call that, colloquially, the "butterfly rash." One of the first people I ever told about my lupus (when, by the way, I was fourteen, so we're talking five years in and 3 people knew besides my family) joked that maybe it was called lupus because it feels like a wolf attack.

I have never tried to write while actively in pain and as a consequence it's been very hard for me to describe how it feels. To quote the pain scale, eh, again, "My nerves cannot, or will not, imagine past pain - and this, I think, is for the best. Nerves simply register, they do not invent. ...I have discovered that the pain I am in is always the worst pain imaginable."

But at this very moment I write to you in not the worst pain imaginable. Even though I cannot, perhaps, exactly remember what worse pain feels like, I know that this is not the worst. But it is something more than "usual" - I can't sleep, and thinking this post out is hard. But I am so used to writing abstractly about my disease and I want to try and write something in the moment. The description will be crude, most likely.

My wrists have sharp pains that feel like they're going inward, towards the center. They feel warm but don't look swollen. My fingers are tight and they shake when I try and straighten them. I'm holding my shoulders even higher than usual and I can't really tell why, except that my left ear has a cold pain deep down and perhaps it is a reaction to that. My lower back is sore, probably from my mattress. I finally put my mattress pad from school on one half of my full sized bed, and hopefully that will help. My back pain radiates to my abdomen, and I have had "cramps" for three weeks, though my period ended two weeks ago. This is a warm pain and it's not new tonight. My hips have a sharp pain, mostly going outwards, like a spike but smaller, and I can't seem to satisfy them. My knees and ankles have shooting pains going down. My right knee, on the outside, feels like I've knelt on something lego-shaped, but there's no mark. I also have a headache and my eyelids are clicking when I blink, which my mom says is because I'm dehydrated.

I don't know how much of this is normal. It may all be from my mattress, from exhaustion, from the kid I babysat for who coughed on my face multiple times: it could be a virus. My wrists and fingers and elbows could easily be from how much typing I've done for internship lately (once they found out that I'm a pretty freakishly fast typer when I need to be they started giving me long-ass transcriptions) because the keyboard is a little high up for my wrists and the keys need to be pressed just a little too hard.

I once got up the courage to be pathetic and I asked a friend if he ever felt 100% comfortable, and he told me no. So I'm not sure where I can get off whining about "chronic" pain when most of the time it is no more than a heaviness in my body. Even when I go to the doctor, unless something is bad enough that I need medicine for it (and I do not take painkillers unless I HAVE to), when they ask if I've got any pain I say "no." Sometimes I'll try - "my fingers hurt" "rate that" "5" always five, the middle. They've never offered much of a solution, so I mostly don't do it.

Anyway, that's a little window into the Here and Now of this crazy condition. Even though I started telling people about my illness once I started college (ages 9 - 18 very VERY few people were told; I was embarrassed) I still have trouble talking about it when it is acute. I don't mind people knowing the abstract, but I dislike the particulars. I find them slightly tedious and endlessly obnoxious. But hey, it's the internet, and it's hard for people to understand a disease when what it feels like is never explained.

But again, this isn't a terribly bad night. I will fall asleep eventually. It's just a matter of knowing how to make yourself tired enough to drift off before the wolf bites.

(that was very artsy and dramatic, eh?)