My Villain Arc

I may as well try to write my way out.

I’ve added to my list of grievances against God today, legitimate reasons for fighting him in a Wendy’s parking lot. Not even McDonald’s, I’m wanting to get fucking dirty here.

(also by the way, please don’t tell me what all the past doctors did wrong, I do know and it doesn’t help right now)

I’ve been in pain all my life on some level or another. It started when I was a teenager, in my ankles and a bit more in my knees. My doctors shook their heads and smiled and said that I just had a short tendon here and that there wasn’t anything to be done for it, I could just take NSAIDs or something. And, of course, there were the migraines that started when I was sixteen, the ones that came with a blinding aura and then knocked me out for half a day at least, usually closer to eight hours at a time, and I’d emerge groggy and exhausted like I’d just done battle.

Hormones, they said, smiling and shaking their heads. Take Tylenol and caffeine.

The pain worked its way up my body. When I got pregnant, it settled in my hips, and nothing helped. Probably it was something something round ligaments, SPD, whatever. I couldn’t sleep because it hurt so much. The pain didn’t go away when I got unpregnant. It was worse with twins.

That’s pregnancy, they said, smiling and shaking their heads. Take Tylenol.

Throughout college, I was constantly throwing out my back. It happened two or three times. I didn’t realize until much later that a healthy (comparatively) barely twenty-year-old shouldn’t be immobilized by back pain even once, never mind two or three times. 

But they smiled and shook their heads and gave me muscle relaxants.

And then it was two years ago, and the year was traumatic for everyone, and in November, something popped in my back and I couldn’t do anything but scream in agony until they pumped me full of so many painkillers that I don’t remember what I had. They couldn’t do anything else because it was still the height of Covid, and they didn’t want to admit someone who didn’t need life or death help. They just threw whatever painkillers wouldn’t mix together and kill me at the problem and once I could have a semi conversation (like… it was garbled, but it was words), they sent me home, like good luck.

Which was when the new pain started.

I was on an anti convulsant then, Gabapentin, to keep the pain at bay until I could have surgery, a surgery that never happened because insurance shenanigans kept me out of the OR until whatever popped got reabsorbed into the body, but not before I acquired some very cool nerve damage down my leg that makes me completely numb on the inside of my left thigh. And anyway, I guess the Gabapentin helped somewhat, but other pain started popping up. Ankles and knees, but the hips again, and the toes, and the fingers, and the hands. Not like carpal tunnel or anything like that, but the back of my hands. The elbows, the wrists. Everything.

And it grew and it grew and I had one doctor say that it was because I drink soda and am fat and another say that it was because I’m fat and don’t sleep right. And finally, my husband put his foot down, and the doctor who lectured me about soda referred me to a rheumatologist, and I saw her today. And FUCK but I hurt because she pressed on everything but I have a name for it now.

Fibromyalgia.

Such a stupid thing. I should’ve guessed. It’s a nerve issue that arises as part of the body’s response to trauma of some sort–lingering illness, physical trauma, psychological trauma. I had that in 2020. It makes your brain incapable of sorting out even minor pain signals or interpreting things as anything but pain, so you just have this constant barrage of pain, pain, pain all over your body. You’re exhausted because your body is just saying, “I hurt” all the time, and the treatment is basically to gaslight yourself into saying, “No, I don’t really hurt,” and then having a life anyway. Like there are medications, but when you talk to the rheumatologist at first, they say, “oh, cognitive behavioral therapy and exercise are the first line of treatment.”

It sounds like autism if autism hurt all the time, which I guess it does now.

And along with the relief at finally naming the fucking thing I am having so many emotions, because here’s this stupid disorder that’s very real, that people think is completely fake, that has no easy fix, that basically means I’m going to be in pain until the day I die on some level, that seems to elicit a lot of loud shrugs from researchers. There are medications that might work? They’ve worked for people I know, but the two first medications you’d be prescribed for it are medications I already take, and god, I’m already so fucking tired. 

And like. Regular painkillers don’t do a whole lot because it’s not pain caused by inflammation or injury, it’s just your nerves being like “hello, also fuck you.” And not a whole lot of medications do much with nerves because the brain and central nervous system are this big stupid mystery that nobody understands because we’re all just stupid jellyfish wrapped in bone and meat or wHATEVER

So. Angry is one emotion.

And then I’m like. Mourning, I guess. I don’t know if that’s the right word for it. I’m sitting here feeling unworthy of a lot of things. Not because I did anything wrong–like you don’t CHOOSE to get fibromyalgia, you just kind of get fucked–but because I realize that I’m officially Chronically Ill, and mentally, I know that doesn’t mean I’m worth any less and I’d punch anyone for saying that about my friends, but it’s me, and I don’t have self esteem. Like everyone else with chronic illness and chronic pain is worth time and love and affection, but even though having a diagnosis has changed exactly nothing about my situation whatsoever, I’m still like “hahahaaaaaa now I’m worth less than a penny!” 

And it’s stupid, and I KNOW it’s stupid, and I’d fight anyone who said that about my friends who are chronically ill or deal with chronic pain, but again: it’s me, and it’s much harder to look in the mirror and be like “you are so much more than what you are capable of doing without pain” (which, for the record, is zero things, so it’s not exactly a high bar to clear but still).

And I’m afraid of the rest of my life hurting, and I’m afraid of my kids being afraid to hurt me or something like that, I’m afraid of bad flares and drugs not working and exercise and I don’t even know. I’m afraid of a lot. 

But mostly I’m just. Really angry. Really bent out of shape. Like I was in pain before, but knowing now that it’s something that’s not curable and knowing that it’s something that doesn’t really have a lot of reliable treatments, that’s kind of brought the emotions to the front. I could’ve dealt with a chronic illness that has a reliable treatment. And I WILL deal with this, and I will punch it and/or God in the dick, and I will probably start doing that tomorrow, but right now, it’s just all very raw. I’m self pitying. I probably should’ve poked my crush and said I wanted to watch a horror documentary like they offered a couple of nights ago, but I’m also not feeling worthy of horror documentaries. 

Mostly, I think I’m just going to hibernate for a minute or two and then I guess emerge from my chrysalis to be a Sith or something. But at the moment, I feel bruised. Literally and figuratively.