Most of the time, I am very much for disability pride, but the fact that I have moderate-to-severe chronic pain from fibromyalgia complicates what should be a ride-or-die sort of feeling. If my personal disability pride is a string of rainbow holiday lights, my pain and fatigue is the thing that knots those lights into a ball of awfulness. Untangling the lights takes for-goddamned-ever. Some of the lights are probably burnt out from years of use. In short, if I could get a new string of lights, I would, but for the purposes of this metaphor, I have an imperfect string of lights that is always knotted in impossible configurations and thrown in a box at the back of the garage. (I must pause and give a shout-out to Leah Lakshmi Piepzna-Samarasinha, as her most recent book Care Work: Dreaming Disability Justice provides a ton of food for thought on this very topic.)
There are times that my day or week gets ruined by pain and fatigue, and I can’t do much other than wait for my body to feel better. Often, this will happen when I am on a deadline or have to do something. When it happens, I’ll wake up in bed in the morning and feel like I am in more pain than usual. Sometimes, I will lie in bed and stare at the ceiling, like a dingus, for anywhere from 30 minutes to an hour and a half because the pain is so bad that it has either a.) sucked up all of my motivation to do anything about it (ie: taking medication), or b.) reduced me to lying in bed and staring at the ceiling, because doing anything about it would be useless.
Once I am actually medicated and back in bed with my grumpy self, it’s not uncommon for me to get a few more hours of sleep. The usual pattern is that I will emerge from that snooze cocoon at least a little more refreshed. But on my worst pain days, those lost days that refuse to leave me alone, I’ll wake up and be in a ridiculous amount of pain. Getting any sort of work done on those days seems laughable; even if I can get a half hour or so done, quality is not guaranteed. The things I can do are limited: I may be able to read a few pages if my brain doesn’t make the words look like they’re floating off the page, or watch an episode of a TV show if I’m not sensitive to sound. Sometimes I can draw, or listen to a podcast. There are things I have to do on those days: get dressed and take the dog out. I can’t guarantee that I shower every day—gross, I know—but my dog, Noodle, gets at least one long walk. If I’m having a shitty pain day, I’m spending it in bed or on the couch, which sounds boring but it is also the truth.
Being tired all of the goddamn time is another super cool symptom of fibromyalgia. I have sleep apnea, which is a super great addition to fibromyalgia because it means that I do not get enough oxygen when I sleep. The recent wildfires in my state (the Bay Area now has THE WORST AIR QUALITY IN THE WORLD, in addition to all of the destruction that the Camp Fire has caused) have impacted my nasal passages enough that no nasal spray will totally clear them. The end result is that I haven’t been able to use my CPAP as directed during the last two weeks because doing so feels like I am breathing through a cocktail straw in one nostril. It is what I imagine drowning would feel like. It is not conducive to sleep.
(Note: I’m pretty sure that at least one person is thinking, “PEOPLE HAVE LOST THEIR HOMES, WHO CARES ABOUT YOUR ASTHMA AND YOUR STUPID CPAP MACHINE?” and you’d be totally right, but instead of scolding me on the internet, you can donate money to help people who have lost their homes!)
Fibromyalgia tiredness is not the same thing as, say, hung-over tiredness or stayed-out-too-late tiredness—two types of tiredness that are under human control. It’s more like all-caps I HAVE NOT SLEPT FOR TWO DAYS AND AM HALLUCINATING tiredness, or the kind of foggy, what-the-fuck-is-happening tiredness that one experiences with the flu or a bad cold, or perhaps being on some sort of illegal substance. I imagine that CFS/ME tiredness is worse than what I experience. Having the CPAP machine OTHER than during the fires has helped, because it means that I can breathe properly most of the time, but I still experience weird bits and pieces of days where it feels like I just cannot stay awake.
Occasionally, I have insomnia, which is fun because it usually springs up for no reason at all. I also get pain-somnia sometimes, which is when I can’t sleep because of pain. I would get things done during this time, except I have tried to “be productive” when I can’t sleep from pain before, and it usually ends in a big (metaphorical) pile of shit. The best I can hope for is that I can watch some episodes of King of the Hill before my pain finally goes, “Fine, dude, you win. Go to bed,” or I can suddenly see through another dimension from staying up all night.
I am in some sort of pain all of the time. Yes, all of the time. Yes, even when I take medication that takes the pain down a couple notches. The only time I can really say that my pain level has ever been “almost nonexistent” was when I was hospitalized for pancreatitis and got Dilaudid for the pain. This is not an experience I’d ever want to repeat, but I will say this: DILAUDID IS AMAZING. (Note to drug company execs who may be reading this: I am available to write ad copy for a substantial fee!)
Okay, enough about me spending more time in bed than Sleeping Fucking Beauty and stocking a small pharmacy’s worth of medications in my bathroom cabinet. Let’s see what happens when other people offer opinions about chronic pain and/or illness!
PEOPLE SAYING ASININE THINGS ABOUT CHRONIC PAIN: A SAMPLER PLATTER OF BULLSHIT, IN LIST FORM
“You can’t be in THAT much pain!” Look, I have worked through level 7-8 pain before. One government agency where I worked was understaffed the whole time I was there, and I was doing the jobs of two or three people instead of one person—so I didn’t have a choice. I’ve had terrible temp gigs where the only option was to be very quiet about my disability so that I wouldn’t get mysteriously “let go.” I have been at family gatherings, in classes, or doing other stuff only to have my pain level shoot up so high you’d swear it was the butterfly from the Reading Rainbow theme song. So, yeah, sometimes my pain level is so significant that I just have to deal with it EVEN THOUGH I am at an event, or working, or otherwise not at home and comfortably in bed or on the couch like I should be. Sometimes you have to do stuff that requires that you work through pain, which sucks, but yes, I absolutely am in that much pain sometimes. I might be in THAT MUCH pain while talking to you, and saying something like this will only confirm to me that you are not a safe person to whom I can express that.
“Have you tried medical marijuana?” I have asthma. Smoking anything is a bad idea. Yes, I have tried tinctures and stuff. No, they didn’t all work for me. No, I don’t really feel like discussing it any further.
“Oh, I read a magazine article about that!” This feels like a conversation opener on paper, but verbally it almost always falls flatter than the aforementioned magazine page. Yes, you read an article about something that I live with; good job! Please try to contribute SOMETHING conversationally, is my plea.
“You should try vitamins/cherry juice/other untested remedy!” I’ve tried expensive vitamins and they did not do anything. I tried going gluten-free and sugar-free, and neither did anything except leave me hungry and grumpy all of the time. Do you think I have unlimited money with which to try out whatever “natural” remedy is being hawked on Instagram this week by smiling white women under the age of 25, many of whom look like they just walked out of a stock photo? I do not.
“I’m tired and have pain too–you Millennials are always complaining.” Do you want a trophy, dingus?
“Chronic pain is not a DISABILITY disability.” If I beat you to a bruised pulp with my cane, is that painful? IT SHOULD BE, MOTHERFUCKER. For the love of Bey, don’t be a presumptuous asshat and say something like this, because my reaction might get me a night in jail.
A suggestion for people without chronic pain: just try to avoid saying this stuff if you come into contact with someone who has chronic pain or illness. Trust me. We have heard it all.
I feel like I should have some sort of funny and inspiration conclusion to this that makes people want to post the party/congratulations emoji when linking on Twitter, but that’s not happening. Happy Thanksgiving, I guess.