Am I even allowed to talk at length about my fibromyalgia? I honestly felt for a long time like I wasn't, like fibromyalgia's just a subject for offhand complaining or explaining why I can't have a job where I have to stand up for long periods. Any more than that seems uncouth, self-obsessed, whiny--any term that could connote internalized ableism.
I read an article recently (which I lost, of course) that was essentially just someone talking about what their fibromyalgia was like. It was weirdly heartening and validating, even though their experience of it was wildly different than mine. Since then, (though probably not just because of the article) I've been having a lot of thoughts about my fibromyalgia, and been wanting to write about them.
So, here I am, unnecessarily justifying myself for writing something self-indulgent and potentially a bit complain-y--which is, honestly, a quintessential part of my fibromyalgia experience, so I might as well retain this anxious justification. Here's a bunch of thoughts, in no order other than what felt intuitive, written over a week or so.
The below requires content warnings for self-harm, self-loathing, PTSD stuff, sexual trauma, as well as the more expected subjects of chronic illness and medical gaslighting. I'm sorry it's so heavy, but it's become inextricable to the subject.
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One of my early memories of childhood--I was probably under ten years old--is of watching the Disney film Atlantis, specifically a fraction of a scene or two where the doctor character (apparently called Dr. Joshua Strongbear) does a good chiropractic crack on Milo's neck. Longing filled me. Unaware of the cultural context, I asked my mother if she could do that for me, pressing when she said she couldn't until she told me she couldn't because she could hurt me.
I'm sure I sulked afterwards. My neck had that feeling, that tension, that pain, unrelenting and aggravating--I needed that relief so bad! It looked so easy in the movie, couldn't she just try?
In retrospect, there's a lot of memories like this from my childhood and teenage years. The time I couldn't sleep on my perfectly fine bed unless I piled pillows a certain way in the corner and slept on them like that. The frequent mentions of back, shoulder, and neck pain, that riddle my old chat logs. The time I went particularly hard during one of my trapeze classes and wound up so full of knots that I cried out when my boyfriend tried to give me a back rub. The teenage trips to the physio in Australia, who would knuckle my back to no avail.
Perhaps it all meant nothing, but in retrospect, knowing what I do now, it's hard not to think that it's always been there, that genetic latency that didn't fully manifest until I was in my twenties.
It's been long enough now that I can't imagine a life without pain. I can conceive of it, but those memories of pain are among the most accessible for me, when so many are blocked off and distant.
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Some nights, sleep is a task, and ordeal, which requires huge effort on my part.
Okay, I wrote that line without thinking about how it's always a fucking task. Tim usually rolls into bed and falls asleep instantly, while I need my goddamn padding, my four pillows with specific purposes, my fucking heating pad which likes to unplug itself, my box fan, my humidifier, my ear plugs, my medication, my antacids, my lamp on with a scarf over it. Then, after elaborate bedtime rituals, including cracking my hips, I can get to sleep relatively well like 80% of the time. My stock joke is that "It takes a village to make me sleep."
Some nights, that's not enough. It's been my neck lately. I keep getting this red, glossy-feeling pain, knitting my neck down towards my shoulder. This can usually be helped by not using a pillow for a bit, but I rarely wake up feeling any better. I'm just trying to sleep here--what, is that supposed to put me in less pain? What an odd notion.
The other night, it was my arm too, probably from writing down character arc stuff late into the night. My elbow hurt, like it needed to crack (I thought of Dr. Joshua Strongbear), and this seemed to be related to the band of tense muscle running down my arm. I stretched and folded it, decided fuck it, time for my muscle relaxer. I laid futilely on my side, waiting for it to kick in, while pain flared through my whole body. My back was so tight it hurt my ribs, which was translating as a sort of nausea. My legs, my ass, fucking everything, why is it fucking everything right now? I felt tempted to cry, but breathing was painful, so what's the point?
The muscle relaxer kicked in finally, and my muscles creaked as they released some of their pressure. I flipped onto my other side, wondering if I'd forgotten to take my nightly medication. Tried to figure it out with high brain, decided it didn't matter--this was hitting fast, I was becoming soup, I was so tired and almost-comfortable. I'd figure it out when I woke up to pee.
I woke up and peed at 4 AM. My stomach hurt now, and I laid there non-commitally in bed as the pain subsided. Fell asleep until 4:50 AM, when I woke, neck hurting like crazy again. Set myself up with the heating pad under my neck. There it was again--that all over pain, my back, my ribs. Fuck it all.
When Tim got up, I took a shower, still high as fuck and slurring my words, but in so much pain regardless. I sat under the hot water (I can't stand--my circulation is poor, and my legs get red as lobsters and itch like crazy, something which started with my accumulation of huge amounts of self-harm scars), half-asleep, waiting for something to give. Afterwards, I had to get Tim to put lotion on my back (a post-shower necessity in Colorado), because I knew if I tried to do it myself I'd fuck up the delicate relief I'd found.
As I laid back down with my heating pad and the tail end of The Golden Compass, I felt like I was in Perth again. Was it the wind rushing outside? Was it dawn's slow coming reminding me of nights when I'd lie in bed and not sleep until the sun rose? Was it reading The Golden Compass for the first time since 2010? Was it my mind, sedated and exhausted, stirring subconsciously over something I can't even remember?
I fell asleep sometime after 6 AM, and slept like a rock until 11 AM.
This isn't even that bad, honestly. It's not good, either, just kind of average to below average. I have difficulties like this two to three times a week, I think. Depends on the week. I don't know what I'm going to do when I have a job again.
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What is fibromyalgia? That's a damn good question, because as far as I can tell, no one has a good answer. I'm not a doctor, but I can repeat what I understand of the science around it. No one knows for sure why it happens, though the classical hypothesis involves central sensitization, meaning one's nerves are extra sensitive to pain for whatever reason. It's associated, whether as a cause or an effect, with physical abnormalities and changes, such as reduction in total gray matter in the brain, sleep abnormalities, abnormalities in small nerve fibers, muscle fibers...and more! There's still no confirmed way to test for fibromyalgia (though a blood test is in the works, apparently), and there's plenty of doctors who think it's all made up, it doesn't exist because one can't see it.
The central sensitization theory irritates me, and it was a moment of validation for me when a study came out this year suggesting that fibromyalgia does have an autoimmune component. It was an exasperating read--of course it's not just central sensitization, like some sources say. If it is, why do people with fibromyalgia so frequently develop costochondritis, which is an inflammation of the sternum? Why are fibromyalgia and IBS often comorbid? Why are elimination diets recommended and often effective for fibromyalgia? Why have I seen so many people in my fibromyalgia groups talking about their lymph nodes swelling? Why are the apparent causes of fibromyalgia not just injury and trauma, but also Epstein-Barr and Lyme disease? Why do we have high counts of white blood cells and cytokines?
Even if central sensitization is the cause of all this, I don't think it's fair to insist that it's just the nervous system misinterpreting signals. It might be that pain changes the body, directly and/or indirectly, but after the point, it's not just the pain--it's the body too. It might be that the triggers associated with fibromyalgia cause more than just central sensitization.
This is just idle speculation. I want to emphasize, strenuously, that I'm not a scientist or anything remotely similar, and I'm not here to promote any conspiracies. This is the kind of stuff I think about when I can't sleep. Part of it, for me, is that fibromyalgia is just not well understood, and not well studied; pain in general isn't well understood or studied, and neither are the effects of trauma and illnesses on the body.
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I know what fibromyalgia feels like to me. It feels like my body hates me, and is attacking me constantly. It feels like those days when I get tired two hours after waking up, trying to fix it with 95% dark chocolate and gingko tea, and finding myself alert, jittery, and heavy-headed with exhaustion. It involves pissing twenty times a day, and diarrhea that isn't quite bad enough for me to be worried about IBS. It entails long winters of being unable to stay warm, the inherent cold of every object triggering allodynia, my feet sweating through my socks so they can be trapped in their own clammy coldness. It has the funny side effect of my body forcing me into almost complete teetotaling--from alcohol, which makes me anxious and gives me a headache, to caffeine, which will keep me up for 18+ hours; from cannabis, which puts me in more pain somehow, to all but the mildest prescription drugs.
It feels like it involves inflammation, even though it shouldn't. My muscles are full of piano wire and spitting, oozing knots. Though, maybe I have myofascial pain syndrome too, and that's why. It feels like a disease that doesn't allow me to function. My life is a dance between movement and non-movement, sitting and standing, because both sides hurt me, and I can never guess which days are moving days and which aren't. I just have to find out.
It feels frustrating and absurd that fibromyalgia isn't considered a worrying pre-existing condition in COVID-19 times. Don't you know I have so little left, that I could lose it all?
I know that sometimes, it feels like the fibromyalgia is my fault, like I could have chosen to be some other way.
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My brain is a weird soup when I'm trying to sleep. Who knows what might float up? I often wake up to pee thinking about whatever writing I'm working on, often coming up with an answer to some problem as I stand up. Lying in my bed of pain as the sun rose, I thought about this planned blog post and thought about the question: "Would I wish fibromyalgia on my worst enemy?"
Uh, fuck yeah I would. When Trump was in office, I imagined what if I had the superpower to temporarily inflict my fibromyalgia on others. Trump would suddenly feel as hit by a train as I have all day, and he'd deserve this, because part of the stress on my body is his goddamn fault.
I was thinking--what if I got to decide to give people fibromyalgia? I could halt someone's career. Because, let's be honest, and not worry about how palatable of a statement this is: I lost a lot of capability and functionality with fibromyalgia. I used to want to work only part-time so I'd be able to work on my writing. Now, it's a necessity that I don't work more than part-time because I can barely balance life working 30 hours a week. I can only imagine where my writing career would be if I hadn't spent two years trying to figure out what was wrong with me and what to do about it, and if my brain was more ready and able to sort through the complexities of worldbuilding and character arcs.
This is a nuanced point--it's not like people with chronic illness can't accomplish things in life, or have a successful career. Lady Gaga has fibromyalgia (this fact often surprises people), Laura Hillenbrand wrote Seabiscuit while bedridden from CFS.
I'm working hard. Still, it's thrown a huge roadblock in the dream I've had since childhood. Why do I get the roadblock while fascists don't? It's not fucking fair.
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So, you can't see fibromyalgia in the body. Can't you? I fling my arm out in a specific way and my shoulder emits a loud crack! I flex my shoulders, stretch my neck from side to side. I sit for extended times in weird, cramped positions, then stand up suddenly. My knees, my ankles, my feet, crunch as I walk down the hall.
I only wear loose-fitting clothes, I can't wear a bra any more, and I can feel make-up on my face, which makes my pain worse, so I mostly don't bother. I sweat more than I used to--my hair gets greasy faster because I so often sweat through the night. I stand with my legs far apart and dip my torso from side to side, each hip clicking audibly. "That sounded metallic," people have said, "It sounds like a ping pong ball. You're like a clock--tick tock!"
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As a teenager, I slept on floors, drank unreasonable amounts of coffee, sometimes didn't sleep at all. I was surprisingly resilient, even though I always paid for it with aches and anxieties. I miss when my nerves were coarser.
My family moved to Australia in early 2010, when I was 15 years old. I didn't receive the news well--the story I told was that I barely stopped crying for 24 hours after I heard. In the months between the news and the move, my little snowball of trauma (sexual and other) rolled down the hill, accruing mass. By the time we got to Australia, I really wasn't doing well. I wasn't equipped to handle this different society, where I didn't feel free to be myself, where I was bullied by teachers, where we had to read a bunch of books about rape for class.
I spent the first year relatively social, dating, but repressing certain parts of myself for public consumption--such as my legs, which were quickly acquiring the appearance of an old cutting board, such as what I was realizing had happened in my childhood bedroom on August 26, 2009.
I couldn't manage this the second year. There were circumstances--I don't want to moan too much--and I stopped trusting everyone around me. I spent seven or so months deepening my isolation, went so long without human touch I started hallucinating what it would be like for someone to hug me. My only friends were online, and I missed them so much it was a physical pain. Often, my body would give up, and I would paralyze in place, my disobedient hand heavy on the desk, my legs two slabs of useless meat.
I barely remember this period of time, and when I do, it's not real. My brain thinks it didn't actually happen. What I know of it is carefully reconstructed through reading my writing and messages from the time. That's how I found out that I was apparently dissociating for much of it ("My body is not my own./All these cells/are not connected to me.") This, with the attempts to forget it all as soon as I was out of that situation, probably explains why I don't remember much.
In lieu of any life outside my suffering, I curled in on myself like an ingrown hair. I attacked my own body with all the weapons I could find. I stopped eating lunch, perhaps in an attempt to deprive myself of verve so I wouldn't do anything anyone would notice. I wrote a set of rules for myself, the first of which was "YOU ARE SCUM." It seems I thought if I hated myself enough, I would tamp down the unruly weed of my personality and I would be acceptable again--to me, as well as everyone else. These were the tools I had. I didn't know how to self-love my way through it, I only knew how to apply my self-loathing with increasing intensity.
I can't let this story stand on its own, I always feel the need to qualify it with "others have it worse, even at this moment," because I've never trusted any of it was real enough to count for anything. It's probably not the therapeutically right thing to include this qualification, but I know I'll delete this post if I don't.
So I'll get to the point, which is that according to the documentation, this is when I started experiencing a lot of pain, e.g.:
"I'm just hauling around this sack-of-shit body, a collection of aches and pains, a bunch of disconnected limbs. This is a baby I no longer want to care for--these stone-heavy ribs, this spinning head. How can I think like this?"
Wow, that sounds familiar.
It's strange because, after I left Australia and went to college, I didn't feel like that all the time. I did have an unusual amount of back and neck pain. Going to a reading-focused school didn't exactly help with that. Still, I was surprisingly functional until the winter of 2016, when my sacroiliac joint started kicking its first fit. This reprieve from pain mirrors a lot of my college experience. I went there, forcibly forgot everything except for when my odd moods overcame me and I wandered around the dorm at 2AM, weeping.
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The science shows that PTSD could be a cause of chronic pain/chronic illnesses, though in the case of fibromyalgia, genetics/epigenetics may also play a role.
I'll stop dancing around the obvious point: it's clear that my fibromyalgia probably had something to do with all this. It's a complex dance between nature and nurture, of course, and I'll never know what my quality of life might be right now if things had been different.
There's a deeper feeling I have about it all, though, this little twist in my chest, like a wry smile. I hated myself so much in 2011 I can't even express it. Self-loathing and associated activities were my primary preoccupation. I would literally lie in bed and hate myself. I wanted to destroy myself in a fundamental way, depriving myself and mutilating myself until the marks would be on me forever. That 16-17 year-old Lyra--well, she succeeded, didn't she?
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Haha, well that was fun. I don't usually talk about this stuff without finding some way to joke about it. Imagine this with more finger guns and jokes about my proficiency in Self-Loathing Sciences. That's how I keep myself from feeling the way I do now, namely worn out, scared, my nerves buzzing with that specific ambient pain.
Here's another fun fact: about a month or two after getting of that Perth Extended Misery Experience TM, I got mono. The day I was diagnosed, I posted a bunch on Facebook about the unpleasantness I was expecting. I got that, sure--my mouth dried out while I was sleeping, I could barely swallow, blah blah, but I otherwise had a lot of fun. I read Marcel Pagnol's L'eau des Collines, watched There Will Be Blood in a haze, and wrote a lot for the roleplaying forum I'd just joined. It was a romantic time, weirdly, and the worst of it was over in a week.
Took me a while to recover though--I was weak and tired for some time. I took milk thistle supplement, on the speculation it would help my liver recover. In this time period, I exchanged a funny little message with a friend:
LMAO.
What does it matter where it came from? I'm in it now, nothing to do but deal with it.
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Uhh, shit, is this useful to anyone? Is it relevant? Does it have a purpose in this world? Maybe there's an off-chance an able-bodied writer will read this and get some insight on how to write a character with fibromyalgia--rather than assuming that it's all malingering and manipulation and Munchausen's.
The stereotype is real, and frightening. Here's a cute thread I found while Googling things related to this. Here's another great one. A lot of these opinions hit me like a punch. I feel a bit shaky looking at them. I hope, after reading all that, you get how it might feel.
My takeaway is that there's a big problem where people who have no earthly idea what it's like to be in pain 24/7 aren't considering what's cause, what's effect, and how some things can be loops. It's like Aristotle looking a slave twisted up by hard labor and deducing they're physically inferior.
In the latter thread, there's a lot of people suggesting that fibromyalgia is somaticized depression. I mean, I just wrote a bunch up there suggesting that this is so, and yeah, it might be the case. Still, the correlation doesn't slide in as easy as some people think, as plenty of commenters reveal. Mental illness isn't the only suspected cause of fibromyalgia. Again, genetics and diseases have also been linked to fibromyalgia.
In my experience, I can be in a good mood on my worst pain days, and be in a terrible mood on days where my pain is negligible (always nice, because it's hard to think about your feelings when you can't lie down for more than five minutes). And--wouldja look at that! I continue to get deeper into therapy, and my pain remains about the same.
Also, fibromyalgia is a depressing circumstance, and depression is part of the effect. You mean this is it? The rest of my life? I'm going to be in pain and forgetting how to make pasta for the rest of my fucking life?
Same goes for accusations of malingering and manipulation. I had a doctor's appointment yesterday, with a new pain doctor because my usual one left the practice. I put a lot of thought into the outfit I wore (Should my scars be showing or not? How put together should I look?), mentally prepared myself for like a week, came with questions to tick off on my fingers. You get used to being gaslit and disbelieved. Is it manipulative to come in prepared for that? How much of this supposed malingering is just someone trying to get treatment from an unsympathetic doctor?
I see talk about weight a lot--a common story in the fibro group I'm in is "The doctor told me to lose weight? Will this actually help?" My mother, my sister, and I, are all skinny, and have been our entire lives. Our bodies also all self-destructed in our mid-twenties. I don't get shit about my weight because I don't have any to lose, and there's plenty of people who lose weight and find no difference. It's not the fucking weight that's tearing up your nerves. Besides, it's hard to lose weight when you can only do low-impact exercise; namely, your choices are walking (not even doable for some), expensive and bulky exercise equipment, or swimming (also expensive).
Understanding fibromyalgia is going to be hand-in-hand with understanding that mental harm is physical harm. Someone can be suffering because of something in their mind, and that's valid and not a reason to pitch blame on someone. I don't think it's as easy to choose what's happening in your mind as some people would have you believe.
Not that this mental illness is necessarily related to all cases of fibromyalgia, and that's the other part of the matter. If we want to understand fibromyalgia, it's going to be about understanding that bodies are fickle, and being abled is tenuous, even temporary. I wonder how much of the resistance to the idea that someone can be suffering from pain for no obvious reason is because people would have to realize it can happen to them too.
Another part of it is a lot of this will get better if we realize the value in supporting to people to just live, not withholding the necessities of life as a reward for hard work. For one, there's an inherent horror in wage slavery that just can't be good for the human body. (In fact, poverty is a predictor for all sorts of physical malfunction). But also, if we stop seeing work as the only valuable thing in the world, we'll stop seeing disabled people as lazy and maybe start seeing them as people again.
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Last night as I was thinking about this, I laid down with Tim and thought about people moving and not moving their bodies with ease, all the people I know who aren't secretly roiling with kaleidoscopic pain, whose nerves aren't feeling AGGRESSIVELY. ALL THE TIME. I said to Tim, "I wish people were more appreciative of not being in pain all the time."
It's not that I want you to sit around and be glad you're not me. Just...appreciate your body I suppose, and remember that ability is not a default state, it's just what you get for a while if you're lucky. Don't fear disability, which is likely to come with age if nothing else, just be conscious that it happens, and life continues afterwards.
And to my fellow disabled folk--appreciate yourselves if you can, and do something nice for yourself today. You're all valid.
I wish I could say something wiser, but I'm dissociating too hard at this point. Time to log off and spend some time with the rats.
