[blog] walk, don't run: living with me/cfs

ME/CFS is one of the most annoying acronyms imaginable. First, you say it with this weird split where the slash rests — emee sieefess. Then people are like, "What does that mean?" and you say, well, ME stands for myalgic encephalomyelitis. Then they're like, "What does that mean?" and you're like, the CFS is chronic fatigue syndrome, and they're like, "Oh, so you're tired all the time?"

And I AM, to be clear. I am so freaking tired.

In friend circles I tend to refer to it as the "I'm Tired" disease, not because that really captures the half of it, but because it makes up 90% of my responses when my partner asks how I am. I would like to talk about the other half and change today, as well as some common ideas in ME/CFS medical spaces and communities, in case this sort of thing is new to you. Or if it isn't, and you're desperately scouring the web in search of someone to tell you that you're not crazy. I promise, you aren't.

So we should start with what ME actually is. It's a chronic (stubborn, recurring) disease that manifests in multiple systems (parts, organs, processes) of your body, and yes, the definition is that deliberately vague because it looks so different in everyone. ME can result from post-viral infection — maybe you've heard of, or know some people with, "Long COVID". It can come about after major trauma or a series of minor traumatic incidents. It might be genetically influenced. We don't really know. ME is a differential diagnosis, which means that when you go to a doctor about your symptoms, they narrow it down to ME by ruling out anything else that could be wrong with you. (If this sounds tedious, by the way, I live in America. It's probably worse than you're thinking.)

What we do know is ME's flagship symptom: post-exertional malaise (PEM). I'm a writer for #MEAction Network, an organization that funds research and collates resources for people living with ME, and I really like how they sum it up: "PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting ~24 hours after the triggering event." In short: do things and you can get worse in fun, sexy new ways. "Doing" and "things" can encompass a lot, too. We'll get to that in a bit.

I have "mild" ME, meaning I live a ~high-functioning~ life where I am mostly able to work, provide for myself, and engage with the world. Moderate or severe cases of ME can result in someone making 24/7 use of mobility aids, experiencing debilitating "brain fog" (confusion and cognitive exhaustion), or being completely bedbound and unable to speak or move. And to be clear, all of these things can affect anyone with ME. Mild people just tend to get them in episodes, or "flares", that they can tolerate without too much interruption to their life.

I'm not sure when I started thinking about ME as fire, by the way. I tried to write out my day-to-day experience to capture what it was emotionally, metaphorically like, and I ended up with this: Every cell in your body is flammable and being held to a flame. You are in a constant, unfair cycle of combustion and regrowth. Unfair because the conditions never settle enough for you to make a full recovery.

I want to specify what I mean by "recovery", though, and this will be from the perspective of someone from mild ME — remember, it's different for everyone. Some people, and I must emphasize this word, have some say in their cycles. This is called pacing. Pacing is when your mind and body work together to delegate energy over the course of a given day, week, month, et cetera. "Energy" could be social, emotional, cognitive, physical, spiritual, or all of the above. "Delegating" can mean breaking up the time into tasks, then allotting each task a certain amount of energy. It can be a very administrative thing.

One helpful concept in pacing is "spoon theory" (greetings, fellow neurodivergents!), where you imagine your energy is a handful of spoons. Spoons are currency; you can trade them in to complete a task. The number of spoons needed for each task will fluctuate day to day, as will what counts as a task. Some days you wake up with three spoons, and your plans for the day require four at least. If you have the ability, you can go into debt, like when you really want to see LE SSERAFIM in concert. You decide to give your day plans (the concert) all three spoons, and promise one more later.

But now let's talk about tasks. You wake up with three spoons, and you have a four-spoon task: go scream your lungs out at the concert. Cool, you'll go one spoon into debt and deal with it later. Except maybe you wake up with three spoons, and it's two spoons to get out of bed, two spoons to get dressed, one spoon to brush your teeth, to make breakfast, to text your friend. Well, now you have some decisions to make.

For chronically fatigued people, the spoon economy is in shambles. We don't really get a say in how high the "cost" of different tasks will be, and if we're in any debt, that cost is jumping with a vengeance. We're pretty much always trying to make up a deficit. That's how the exhaustion gets worse. Over time our bodies pay and burn, pay and burn.

People with mild-to-moderate ME can keep coming back, but we're in a little deeper every time. Moderate-to-severe people risk going scorched earth. Pacing can affect how these things progress, but other times it really is just completely random. Some people get a bad lot. Some people get better ones. Anything can change, anytime.

Does this sound like a harrowing way to live? It is. I've heard ME called a "dynamic disability", which sounds really fun and Broadway in stark contrast to what it is: never having anything promised. You can't know what tomorrow will be like. You can try listening to your body, but your body doesn't always feel like talking. One day you can be dancing, the next you can be fainting out of bed. You have no idea.

And let me be clear, because this isn't a carpe the diem sort of situation. If you carpe too much diem, it can have a permanent effect on your health. You're constantly weighing the present against the future. Running the numbers you have, not knowing if the spoon economy is headed for a crash or not.

When you're mild, like I am, it's a weird way to be disabled. Sometimes you have to say something like, “I would love to do this thing, and I have the energy to do it now, but it’s going to put me in a deficit for later and I can’t afford that.” You really, really tune in to your body’s limits. If the ME is generous, like mine, you get a warning shot — dizziness, leg pain, pins and needles, any number of signals to back off before you do something stupid.

Since we’re humans and have free will and all that, we can still choose to do the stupid thing and suffer the consequences. I certainly have. “Push and crash” refers to that endless loop of expending your energy, being forced into resting mode, expending your energy, cue forced shutdown, and so on. Of course it’s better to rest before you get to that point. But will we? Will I? Who knows. Anyway, disability will do that to you: make you confront what you take for granted in an abled body.

If any of this sounds familiar, I would like to encourage you to check out #MEAction, ME Research, or, and I am not clowning you, the r/mecfs subreddit. Yes, I am telling you to log on to Reddit. Yes, I am sorry. It's one of the best hubs for anecdotal evidence and community support I've found.

If you have comparable symptoms you plan on bringing to your doctor, my advice is: keep a symptom diary. Jot down anything you notice about how you feel over the course of the day. Dizziness, increased or decreased appetite, that weird twinge in your knee — everything counts. You are still the arbiter of your body. I also can't tell you to record interactions with medical professionals, but if you'd like something to refer to later, check recording and consent laws in your state, province, or country first. California is a two-party consent state, so when I saw the doctor who diagnosed me with ME, I asked her if I could record the conversation, and she said yes.

Finally, I hope this has been helpful, informative, entertaining, or distracting. I've been dying to talk about this. ME is so strange and isolating. It makes you rethink your relationship with life and society and productivity, your dreams for a legacy, your dreams for the future. It's scary, but there's also a big, wonderful community of people out there who have all decided to be scared together. They're hilarious, compassionate, and courageous, and I want to be like them when I grow up.

If things have been especially weird for you lately, or you're having some freaky revelations about now, I'm on IG @doll.diarist and happy to listen. I also repost resources for living with chronic fatigue.

Take care, and thank you for reading.

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