I have CFIDS, aka Myalgic Encephalomyelitis, aka CFS -- and I’ve come to realize I’m leading a semi-closeted life, disability-wise. Even if you know me, I may be sicker than you think.
It’s partly the name’s fault. American media and most U.S. doctors call it “Chronic Fatigue Syndrome” -- does that even sound like a real illness? People have literally said to me, “Hey, I’m tired too, maybe I have that.” But if you’re not disabled from it, there’s no chance you have it. Millions of other illnesses and non-illness situations involve fatigue that is chronic.
It’s easy to understand that I’m tired. It’s harder to understand that sometimes I’m crushingly exhausted, unable to move. Here’s a big old hint: I have a day bed! It’s a single bed smack in my living room. It’s made up with sheets and blankets because I’m often sick enough to need to be in bed, which is a different level of sickness from being able to rest atop a couch. Even on days when I’m less sick, I need to be prone for a large portion of the day or I get sicker. Why a day bed rather than staying most of the time in the bedroom bed? Because big windows, tall bookcases, stereo, computer, TV: I may be sick, but I’m living my life, and that’s what the living room is for.
After the initial surprise that there’s a bed smack in the living room, most people seem kinda fond of it. Visiting children climb it. One friend recently joked about featuring it in a video game. What more could a day bed aspire to?
(Plus, my day bed leaves my real bed, my night bed, free for sleep hygiene guidelines: in the bed you use for sleep, nothing allowed besides sleep and sex!)
Another thing many people understand is what I can and can’t do. I can’t travel; I can’t ride in a car for very long because of motor vibrations; I can’t take public transit at all for the same reason. Physical pain is a large part of my CFIDS, and motor vibrations flare it up fast and hard.
I can’t stand up for terribly long; sometimes I can’t sit up. That “can’t” can mean either that I’m actually incapable right then, or that I could pull it off at the moment but the pain and illness backlash aren’t worth it. Backlash is a big thing.
Some of my day might be surprising. After showering, I need to lie down before dressing. This is an actually-can’t (even forgetting backlash): I need to lie down to find my equilibrium. Also I totally lied, I don’t shower -- standing up under pelting water makes me dizzy and there goes the next two hours. I take short, utilitarian baths. I tend to say “shower” because “bath” has a luxury connotation.
That’s a tricksy thing about CFIDS, explaining my life in ways that don’t bring on exclamations of jealousy. “Ooo, a bath!” “Ooo, I wish I slept late!” But it’s not like that. You’re wishing for those things to happen while you continue not to have CFIDS. You’re not wishing for a bath because showers make you sick. You’re not wishing to grasp desperately for wisps of morning sleep because you’ve spent decades in chronic sleep deprivation. My nights contain paltry, shallow, body-wreakingly short and nightmare-filled sleep. Sleep works best for me on a night-owl schedule; believe me, I’ve tried all the sleep schedules.
Here’s something else I do atypically: empty the dishwasher. How do I love thee, dishwasher, let me count the bowls! I never need help with any daily kitchen maintenance because of THEE! But when it’s unloading time, I need one or two rest breaks in the middle of that task. Most people can empty a full dishwasher without lying down in the middle.
The functional, concrete limitations of my life aren’t hidden, though they’re not always obvious. I think, after being friends with me for a while, people basically get what I can -- and can’t -- do. But what I’m not sure if people get? How sick I am while I am doing (or not doing) those things.
CFIDS doesn’t show. It’s an invisible disability. Occasionally I can see in a mirror or photo that I have sickface (one friend compares it with Frodo having ringface), but mostly even I can’t see it visually. Plus I have an energetic style of chat, so it’s not until I’m beyond my limit that my voice starts to actually sound different.
I‘ve been in pain for 21 years. I’ve never in 21 years not felt physically sick in some way. All the time. That’s my norm.
I’ve had 21 years of learning how to minimize its presentation. Now I do it by default, and I don’t think that’s entirely a bad thing. One reason is that I worry showing how sick I constantly feel might make people forget the other aspects of me. Another is that I don’t want people to pre-decide which things I’m too sick to do instead of asking. (Unless it’s a no-brainer, like traveling out of state.)
But for the most part, I’m simply not that interested in talking about CFIDS when we could be talking about a million other rich and juicy and fascinating things. I might sometimes mention feeling sick or sore (or let it show), especially if I trust you. But if I did that whenever I felt sick or sore, we’d all die of boredom.
Which doesn’t exactly explain why I decided to write this article explaining that I feel sick and in pain to some degree literally all the time. But I hope there’s value in this too, just because it’s true.
There are of course degrees. If I’m upright and giggling, I’m not at my worst. Usually when things are worst, I’m at home (and without visitors). Things can get really bad. Pain -- sharp, dull, shallow, deep, nerve, skin, bone, muscle, ears, lymph gland. Pain where all I can do is cry. Pain where it hurts too much to cry. And then, lower pain levels where it’s still too much pain to be productive.
There’s brain fog during which I can’t form sentences. There’s inability to swallow food, inability to get to my kitchen from my day bed (note: they’re 10 feet apart), inability to get across the lobby to my mailbox. There’s projectile barfing in the middle of the night. (You want to date me now, right?) If I sit up writing at my desk longer than I should, there are savage intestinal consequences that you don’t even want to know. There are chills. As I’m writing this, I’m wearing long underwear and fleece. The thermostat says 77.
CFIDS is kind of violent. I see it affecting my central nervous system and my autonomic nervous system. I feel it affect my balance. The first thing it did was break my body’s relationship with exertion -- that’s actually part of the official CFIDS definition. I walk some, and I exercise when I can, but I can’t build up stamina -- building up stamina is a broken mechanism in CFIDS.
Here’s a way I feel lucky: unlike my early CFIDS years (bedridden), nowadays (nowayears?) I have a fair amount of choice in when and how I use my spoons. As long as I block out periods of rest time before and after, I can do the things that mean the most to me. Please note, for context, that this is true only because I know roughly how much I can do overall, and I incorporate that knowledge into the equation. If I aim for things that are, in timing and location and nature, within my general capacity, I can save spoons for them. If something runs long, I can use some of tomorrow’s spoons or go into spoon debt. That debt will come due in the following nights and days, but sometimes I choose it anyway. I like folks, and I like doing things. I balance it best I can.
About “resting”: I’m using the term myself, but it’s kinda wrong. Resting sounds…restful. When I overexert or get socked with random bad CFIDS days, it’s not restful. It’s painful; it’s being sick. It’s more waiting-it-out than resting. It’s not luxurious, not cozy in blankets; it’s burning, tingling, queasy, chilled, molasses-brained rubbish.
People use the word “tired” a lot in reference to my health. Like “Are you tired from yesterday?” or “Are you too tired to come over?” I rather wish people would say sick or sore or unwell or out of spoons. I’d far rather a “Can you join us?” than an “Are you too tired to join us?” Tired sounds so sorta okay. I remember tired from before I was sick. Tired can feel fine if you’re lucky enough to have a bed and you don’t need to immediately do anything.
This isn’t tired. This is persistent, life-changing illness, painful and nauseating and sometimes enraging but also just a fact, around which I carve out a life of work and music and sunlight and folks.
So yeah. CFIDS goes unconquered and not-understood, medically. We know that it’s real, it’s physical, and it’s a beast. And I wanted you to know about the beast; I might want, sometimes, to vent or mention a detail. I don’t mind CFIDS questions at all (I really don’t!). But it’s already bigger than I wish it were, so let’s also talk about teevee and egg creams and color theory and gender and children’s books and love and sex and song.