Living with Chronic Fatigue

3896 words | ~ 19 min read | Jul 3, 2020 | last modified Jul 22, 2020 | disability

I was diagnosed with my chronic illness (being a bit vague for the sake of privacy) in the fall of 2015. I’m still not great at coping with it, but I have learned some things. To some extent, this post is what I wish I’d told my past self five years ago – except that I’m not sure my past self would’ve listened. To some extent I wrote this for myself in order to process my feelings. If any of this is ever useful to anyone who isn’t me, I’ll be delighted.

“Normal” isn’t coming back

Some part of me was, and continues to be, convinced that if I can just perfectly calibrate my medication then I can continue to do all the same dumb shit I used to do and have as much energy as I used to have. Spoiler alert: no. Even properly medicated, I’m still kind of tired a lot of the time, and I’m never going to have quite as much energy as I feel like I “should” have. I did also have to make some lifestyle changes: I can no longer eat soy or gluten, since the former does long-term damage to my body and the latter makes me tired as all hell. Also, (shockingly!) having a regular bedtime and getting adequate sleep has helped a lot (unfortunately, I go to MIT and I have a horrible tendency to procrastinate and then pull all-nighters1).

But, you know what, even the oft-doctor-touted lifestyle changes won’t fix everything. I’m always going to be chronically fatigued. I keep burning out because I try to push myself past my limits (see: that one semester when I tried to take five classes plus a UROP plus two of the classes are grad classes so they’re on the schedule where they give you no homework one week and then send you to hell the next; also see: how I got my knee injury). MIT has a lot of demigods who can, seemingly effortlessly, keep on top of a crushing workload. That’s never going to be me, for several reasons – but one of them is that I just don’t have that many hours in the day where I have enough energy to do stuff. And that is incredibly and endlessly frustrating to me!! I want to do stuff! Desperately, agonizingly, I want to make things and build things, but I have remarkably little time to do it in because I spend so much of my time sitting around doing nothing because I literally don’t have the energy to do anything else. And that’s not going to change. Picturing a godlike being of pure productivity when I make my to-do lists doesn’t make me any less of a lump. The only thing I can do is plan very carefully so I can try to use my limited energy to the best of my ability. Although this sounds kind of stupid and obvious as I write it, it truly has been the hardest thing for me to accept. There’s no sneaky way for me to become more than I am. I am always going to be chronically fatigued, and I will have to make the best of that, and make peace with the knowledge that I will die unsatisfied.

A man’s reach must exceed his grasp, or what’s a heaven for?

(Edited to add: Some things I’ve read that I have found helpful for thinking about this include thingofthings' On Laziness and theunitofcaring’s executive dysfunction tag. Although ADHD and depression are not the same thing as fatigue, all of them affect your ability to Do Things in a way that you largely can’t overcome by adding Willpower.)

Okay, that one was depressing. I promise the rest of these are real tips.

Pay attention to your body and limits

I’m very bad at paying attention to stuff that’s going on with my body, to the point where I’ve configured my computer to send me a push notification every hour reminding me to check if I have a headache. Unfortunately, while this skill is important for everyone, it’s way more important if you have chronic fatigue. In the evenings, I often won’t notice that I’ve run out of energy until I’ve, uh, run out of energy, at which point I no longer have enough energy to go to bed. This isn’t a problem I’ve totally solved yet, but some things help with it:

My medication is a fucking lifesaver, but it also makes me overheat very easily. I reach peak functionality in a very narrow temperature range, and if it gets too warm, my energy just melts away. (I used to take a lot of pride in how well I could withstand hot temperatures, but in hindsight it’s not clear to what extent this was an untreated symptom of my illness.) I keep a CO2 monitor with an internal thermometer in my room, so that at least I’m fully informed when I need to make the tradeoff between closing the window so the A/C can keep up and opening it so my room gets below 1000 PPM CO2.

More seriously, I also have a hard time realizing when I need to tweak my meds. You’d think it’d be easy to notice that gradually over a period of a few weeks I’ve started sleeping 10-11 hours a night, spending the day slouching in various chairs aimlessly browsing the Internet, and getting grouchy/depressed on a hair trigger. Especially since I theoretically know that I always need to tweak my dose around halfway through a semester because of the changing seasons. Unfortunately, you’d be wrong – my internal experience just feels normal. Since the shift happens so gradually, it’s kind of a boiling frog situation. This leads me to my next point…

Collect data on important metrics, and pay attention to it

The important metrics for tracking my particular illness are resting heart rate, average hours of sleep per night, subjective fatigue level, and subjective mood. To solve the first two, I got a Fitbit a few years ago, and it’s one of the most impactful decisions I’ve ever made about managing my chronic illness (the other one was “let me try quitting gluten for a month to see if it helps”). The last two are less solved, because I kind of definitionally have to spend some time at the end of the day recording my subjective fatigue level somewhere, and as I’ve explained, any task that I have to do right before bed every day is going to be first against the wall whenever the delicate systems keeping me functional get slightly out of whack. But to the extent that I’ve been able to maintain that habit, it’s been helpful. I’ve also told my roommates to keep an eye out if I seem more lethargic than usual, and to some extent I can look back on my to-do list for the week, compare the ratio of completed tasks to postponed tasks, and take a wild fucking guess as to why that ratio seems kinda low.

This is one of those things that probably seems stupid or obvious or dead-simple before you’ve repeatedly had the experience of [being horribly behind on psets, skipping all social events and still not getting ahead, sleeping so much you keep sleeping through commitments so now all your friends think you’re a flake, etc. for the past month] and suddenly realizing OH FUCK I KNOW WHAT’S GOING ON THERE I NEED TO EMAIL MY DOCTOR. Learn from my mistakes. Figure out your important metrics, figure out how to track them, and check up on them once in a while.

Use your ingenuity to route around obstacles

The other day, I suggested to my roommates that we put in a conveyor belt for transporting empty tea mugs from my room into the kitchen – or, barring this, a robot that I could summon to carry them. These particular suggestions were vetoed, but I think the mindset is important. I don’t want to waste my precious, limited energy on doing stupid shit like carrying mugs around (and remembering that the mugs exist and setting up meta-systems so I remember to take care of the mugs, at some time when I have the energy for it, before I run out of clean tea infusers). I want to save it for the stuff that matters, which I can do precisely to the extent that I can leverage my engineering skills to make basic life tasks go away.

I tend to forget to drink water and get dehydrated, so I collected a bunch of water bottles from career fair that I keep filled in a bag by my desk. Music helps give me energy and keep me focused, so I have an elaborate system of playlists for every occasion (now what I need is for my Fitbit to be able to automatically trigger one when I fall asleep at the wrong time). I have ten identical boxes of microwave enchiladas lined up in the freezer, and I eat one for lunch every day, because they take like no effort to cook and I’ll always find them appetizing enough to eat, so I also don’t have to spend any cycles deciding on a lunch. I keep my meds and a leakproof water bottle in a three-compartment pencil cup that’s attached to my bedframe by a C-clamp, so I can swallow my meds as soon as I’m half-awake enough to realize my alarm is going off. More generally, organization of my desk and my room more broadly is super important to me, because I want it to be falling-off-a-log easy to put stuff away right after I use it (because then I don’t have to spend as much time on a weekly/monthly basis organizing). I could go on about the many, many things I do in very specific ways for very specific reasons, but I think I’ve gone on long enough. It’s worthwhile to spend some energy upfront putting these systems and habits in place so that future me can save it for more interesting activities.

Don’t waste energy on your infrastructure

This is kind of the inverse of the last point, but I want to illustrate it with a story.

My mom has a set of family-heirloom antique bedroom furniture, consisting of a vanity and a chest of drawers. The drawers don’t have glides; they simply slide in their slots, and frequently this motion is less of a gentle slide and more of a desperate jerk because humidity has caused one component or another to swell up. (And this is in California.) When I was a kid, for some reason my parents decided that I should have this furniture in my room2. I couldn’t physically pull open many of the drawers, and others were too tall for me to see into. Unsurprisingly, if anything I needed to access frequently was stored in these drawers, pretty soon it would instead be stored all over my floor. I spent years and years just coping with this by letting my mom store my least-frequently-accessed items in them. Finally, when I was about fifteen, I realized that, although this was the way things had always been, it was not the way things had to be; furthermore, I did not like this situation, and I didn’t want to live like that anymore. So I traded the antique furniture for one of my parents' chests of drawers and an additional drawer unit from Ikea, and now it lives in my parents' bedroom.

Lots of your routines, accreted over your years of existence, may be something like this. You may be doing things because it’s the way your parents told you to do them, or because you got into the habit a long time ago when it was actually adaptive to your environment, or because you read a blog post about it, or just because. I’m here to tell you: you don’t have to live like that anymore. Be ruthless in cutting the crap. If you can spend a small amount of money on a problem that makes it go away and never bother you again, do that. (This is why there are minimum two trash cans in every room of my house.) Inspect all your routines, particularly the ones you don’t think too much about anymore. Think about the way your stuff is organized and the way you use it – is there any way you can do a one-time reorganization that permanently reduces the number of steps in some task?

I find that aesthetics are often the cause of inefficiency in my personal routines. I have never particularly been infected with the notion that my home needs to be Pinterest-perfect in order for me to invite company over, but if you are: your friends want to see you, and they probably don’t really care about the state of your house. If they do, get better friends. I like looking at fancy bullet journals on social media, but my planner is always going to be a mess, because I need to be able to scribble stuff down in it right now before I forget, and if I have to think about handwriting or highlighter colors at all in order to use my planner, eventually my to-do list will end up on sticky notes stuck to my monitor (or, worse, totally forgotten). I’m all about messy-but-it-works-for-me.

(Not, of course, to be confused with messy-and-I-pretend-it-works-but-it-kinda-doesn’t. Or with so-messy-it’s-distracting. I care about the aesthetics of the spaces that I live and work in exactly to the extent that those aesthetics make my spaces more pleasing and functional.)

Consider mobility aids (and other physical accommodations)

Maybe a wheelchair (manual or powered) or a cane or a walker will make it easier for you to do the stuff that matters to you! Or maybe the mobility aid you want is not one of the classic medical ones, but a scooter or electric bike or something else of that nature. Maybe you need to get a tall stool so that you can sit down in the kitchen while you cook. Maybe you want a shower chair. Maybe you want a rolling cart (with the nice trefoil wheels so it can go up stairs) so you can carry your groceries home without feeling completely wiped afterwards. Personally, I really want to build a big hexapod robot with a chair on it that I can drive around MIT when I’m going to classes on bad knee days (part of the reason for the legs is for stairs, but mostly I just want to skitter about like a large, horrible insect).

It’s easy to think something along the lines of – “well, I don’t need any of those, I’m not actually disabled”. That’s internalized ableism, baby! Energy is a precious resource, and anything that can help you save it for the stuff that matters is worth trying.

Sheer productivity is not the ultimate measure of a human being

Too often, I tend to judge myself by grades and productivity and stuff I did, and of course by these standards I can always be found wanting. But there’s much more to life! Sitting and thinking, relaxing, admiring the view, smelling the roses… even if I’m short of energy for everything else in life, I still have art and beauty. I believe I am worth more – that we all, by simple virtue of being humans, are worth more – than the “productive work” that can be extracted from our bodies and minds. I have found that, to the extent that I can internalize this, I am happier. Maybe this mindset can help you, too.

Codas for the abled, mostly unrelated to each other

We disabled people have invented various metaphors to describe what it’s like to have a limited reserve of a precious resource that you need to manage because you can’t Do Stuff when it’s exhausted (and, yes, getting dressed and cooking food and basic hygiene count as Doing Stuff, even if you never think about them that way). Most famous of these is the Spoon Theory, but we also have the Forks Model, a different Fork Theory, and Battery Theory. (There is also “Knife Theory”, which is what you use when you are out of spoons and some well-meaning abled person tells you to do yoga about it.) I’ve glossed spoons as “energy” in this post, but it can have multiple meanings – perhaps after some threshold of physical activity you’re in too much pain to continue, or you run the risk of permanently (further) damaging your body.

A couple minutes ago I read about the related concept of neutral hours and the three-resource model of Doing Stuff – the resources being Time, Money, and Energy. I like it as a formalization but I think it could be improved by the addition of probabilistic reasoning (if you are programming, your estimate of what you’ll accomplish in a specific hour is subject to some amount of randomness, for example if you run into an unexpected bug; if you are doing a recuperation activity, it has some risk of failing to actually recover your energy – see the Forks Model above).

My chronic illness is an autoimmune disorder, and while I’m not per se immunocompromised, my immune system still behaves in weird ways. One time I caught a cold that was going around campus that caused fairly mild symptoms in everyone else – while I had all the same cold symptoms, I was also so fatigued that I spent three days in bed. I can’t totally pin this on my chronic illness since I was also very stressed and sleep-deprived due to final projects, but this experience is part of what’s informing my very paranoid approach to COVID. I’m not ready to die yet, and the last thing I need is more chronic health issues; please wear a mask, and keep your distance if you see me on the street. (You’ll recognize me because my face mask is made of fabric printed with blue and purple cats.)

When I first got my diagnosis, multiple people expressed their condolences. To me, this seems like entirely the wrong sentiment. It’s as if they think that the diagnosis causes the illness: no, I was already sick! It’s just that now I know what’s wrong with me, so I can start fixing it! The software engineer’s analogy to a diagnosis might be finally figuring out the cause for a subtle bug, maybe involving concurrency or something gnarly like that. Also, for many chronically ill people, getting diagnosed is an uphill fight through a long series of doctors who think you’re faking it or drug-seeking, and it’s not uncommon for this to take 5-10 years. I got lucky here in that I only really had to suffer the untreated side-effects of my illness for around a year. In my case, these side-effects were depression and extreme fatigue as my body slowly shut down with me in it, and (inconveniently) they reached their peak during my senior year of high school. I don’t want to dwell too much on that wretched experience, except to note that getting diagnosed and medicated was nothing short of miraculous.

  1. This isn’t relevant, but who am I to turn down the opportunity to tell you about the worst all-nighter of my college career? I’d actually pulled two back-to-back all-nighters because I had to finish a very long paper about Thelonious Monk for my jazz class and also I think a nasty controls pset where Matlab had done its level best to send me to hell, so during the preceding 72 hours I’d gotten maybe 6 total hours of catnaps in. After putting a bow on my paper I was mostly oriented well enough to stumble to class and attempt to write notes; unfortunately, the first class of the day was in fact my jazz class, where we spent the whole period listening to incomprehensible free jazz and I drifted in and out of lucidity and consciousness.

    (If you are unacquainted with free jazz, please go look some up on Youtube, and play it as you read the rest of this story for atmosphere. If you are acquainted with free jazz and are vibrating with the urge to explain to me how I Just Don’t Get It, please contain yourself.)

    My handwriting always gets dramatically less legible when I’m sleep-deprived, but even without that factor, my notes from this class period were fully incomprehensible because some guy with a saxophone was doing his level best to eject me to another plane of reality. Normally I took 3-5 pages of notes in jazz class. My notes from this date are limited to one page, where I dutifully copied down the timeline the professor wrote on the whiteboard and wrote disjointed words next to it, devoid of context or reason. “Commodity” is in quotes in the middle of the page, with no obvious physical or contextual relationship to anything whatsoever. I’ve never been on acid, but if it’s anything like not sleeping for 72 hours and then spending an hour trying to remain awake at all costs while listening to free jazz, I would prefer not to try it.

    Eventually I was released, blinking, into the rare sunlight shining down on Killian Court, with just enough time to grab an unsatisfying sushi lunch from the stud[ent center] before my controls class. No notes from this class were ever uploaded to the course website, so I was normally pretty religious about going to it, but I decided after some introspection that I had better book it back to my dorm room for a nap instead before I fully passed out. In the end I barely made it through the door, dropped my backpack uncaringly on the floor, and collapsed onto my bed fully clothed, with my feet in their boots sticking off the side because I didn’t have the energy to kick them off (the boots, that is; not the feet). The nap was, indeed, delicious.

    Don’t do this. ↩︎

  2. Surprisingly, I never even significantly damaged the furniture. There’s a water stain in the shape of a hair clip that was inflicted by my mom’s younger sister, and a light spot in the shape of a bottle cap due to the contractor who redid our bathrooms when I was about nine, but nothing from me. I don’t think most children are like this – and I certainly damaged plenty of other furniture (mostly desks, by scratching doodles into them). For multiple reasons, I can’t recommend giving your child antique furniture. ↩︎