A How-To Guide: Living in A Chronically Ill Body
Arden Reynolds
October 14, 2022
1. Levoxyl, 75 mcg The first thing you do upon waking is reach over to the bedside table, unscrew the clunky CVS bottle, and take out a smooth grey pill shaped like an hourglass (an unusual shape for a pill, but this is the *brand name*). You pay extra, both with time and money, to get this version, because you think it works marginally better, but maybe that’s just placebo. You likely don’t feel rested, even though you slept for nine hours (maybe more—you would easily sleep up to 14 hours a night if you could), and your brain is probably still foggy, but this medicine is supposed to help with that. Supposed to. As you shake out one pill from the bottle, you wonder how much the medicine really does, though, because you still have so little energy throughout the day. Most days you feel like Every. Single. Cell. in your body moves through molasses, each movement slow and draggy, heavy, as if you’re carrying around all that extra weight with you. Throughout the day, you marvel at how easily other people seem to do things like walk across campus to get to class. For most people, it seems so effortless, and yet when you walk the half mile and 2 flights of stairs to get to your English class in Smitty B 206, you wish you could sleep for at least an hour afterwards to recover. But you don’t get to sleep in class, so you spend the rest of your precious energy trying to keep the fatigue at bay and pull thoughts out of the molasses. By the time you leave class, you are utterly exhausted, and you start to count down the hours until you think it’s late enough to justify crawling back into bed. You think about all of this in the morning when you wake up, wonder how much the medicine really helps, and figure that—maybe—you would be even more tired if you didn’t take it. So you pop the pill into your mouth and down it with a swig of water. 2. Water, 8oz You drink this to ease the nausea that comes with waking up. It doesn’t matter what you’ve eaten the day before—it’s always there. It’s literally gut-wrenching, and it feels like everything in your stomach is spinning round and round and round, as if on a never-ending, slightly wobbly merry-go-around. It makes you dizzy. The glass of water slows the merry-go-round to a lilt, slow enough that you can go about your day without noticing it very much. After you’ve drunk the water, the nausea pales in comparison to the fatigue. 3. Prozac, 10mg Every morning, you debate whether or not you should actually take this medication. It works wonders with the anxiety. Without it, the voice of doubt in the back of your head never stops, commenting on your every action: – Wow, did you really just say “you’re welcome” when the cashier told you to “have a nice day”? – Maybe you shouldn’t have said that you’re only available on Wednesday afternoon. What if they need you Thursday morning too? Boundaries are important, but what if they cost you this relationship? – What if she thinks I’m needy because I texted her back too quickly? – Do you think I scared him off by telling him that I loved him too many times? With the medication, that voice gets quieter, comes less often. But the trade-off is that you think it makes the brain fog worse. The brain fog is the most debilitating aspect of your pretty debilitating body, and it makes everything difficult. It makes you feel discombobulated, like you’re not in your own body, that you’re simply floating above it and your body is going through the motions without you. At the moment, you take the prozac on and off depending on how clear-headed you feel in the morning. You’re pretty sure you’re not supposed to do that. 4. Yoga, >30 minutes You’ve had to stop running. You thought that you used to love running, but upon reflection, it was probably more of a compulsion than a passion. And so your body made you stop. When you ran, you used to get horrible headaches and fevers during and after the run. Yet you kept running for a long time. (Fatigue comes from the Latin roots “fatis”—break down—and “ag”—to drive/run. Thus fatigue literally means “to drive your body to the point of breakdown.” You have done this for who knows how long. Once you reach the point of breakdown, can you become unbroken? Or is there just dysfunction forever?) Now, though, you’ve finally listened to your body. Or at least you’re trying to. Yoga has been a reprieve, and you get to keep moving without destroying your body quite as much. Movement is a tricky one because you need exercise to have energy and feel good in your body, but when you do too much of it, you wear yourself out. A paradox. “Yoga” in Sanskrit means “unity.” The idea is that you practice movement in order to create unity between mind and body. You wonder how much of that is possible, because it feels like your body is constantly waging war, making it hard for your mind to be in union with your body. Or, more likely, it’s your mind who’s waging war. The rational part of your brain telling your body to do what it cannot realistically do, over and over and over, until breakdown. Running the extra mile because you said you would run 10 miles, regardless of how your body feels at mile 9. Following through on helping your friend move because you said you would, ignoring the fact that you feel feverish and achy and know that you’ll be knocked out for days to come. Saying yes to every opportunity that comes your way, even though your body begs you to say no, because otherwise you won’t feel like enough. That seems more like it. That your mind, your expectations for yourself, your ideas of success keep you from that union. (The roots of heal and healthy mean the same thing—whole. A healthy body is whole, in union.) You wonder what that would feel like, that sense of oneness. 5. OT/PT exercises “Trust that life is bringing what is next for you to learn” your counselor reminds you. Maybe the car accident and broken pelvis, the broken wrist, the infectious diseases can all be reminders for you to slow down. Maybe these things have come into your life as a way to force you to pay attention to your body, because otherwise you will not. (Why not? You don’t have time for that. Life is too busy to pay attention to yourself.) *** “I admire how little you let life slow you down when it comes to doing the things you care about,” your mentor comments a few weeks after you break your dominant wrist. He means it as a compliment. He is genuinely impressed that you have upheld all of your responsibilities, asked for no accommodations, not slowed down at all, despite the fact that it takes you an hour longer than usual to get showered and dressed in the mornings. At first you feel affirmed, but when you think about it longer, his comment worries you. Why can’t you slow down? Why won’t you ask for accommodations when life gets hard? Maybe because you like the feeling of gratification that comes when someone else notices you working hard. Maybe because you feel like your sense of self-worth comes from how much you can do—so much so that the cost of doing doesn’t matter. Maybe because you don’t know what to do with yourself if you’re not constantly busy. And so you continue to fill your Google calendar, leaving very little white space. Your broken wrist requires you blocking out many blocks of purple (the color for health-related activities, doctors’ appointments and OT and such. Your calendar always has several blocks of grape each week), but you just schedule these early in the morning so that you don’t need to cut down on anything else that you’re doing. Instead of slowing down, the injury actually makes your life busier. And you wonder why you haven’t felt good in months. Life might be bringing what’s next for you to learn, but you are stubbornly refusing to learn it. And your body pays the price. 6. Magnesium Taurate, 125mg You take this because one of your doctors recommended it to you. It’s hard to know who to trust when you have three different doctors who all tell you different things. It’s also hard to trust your doctor when you’ve had so many doctors who have led you astray, who’ve caused more harm than good with their endless prescriptions. Western doctors who have told you over and over (so much that you’ve internalized it) that there is something wrong with your body and that it needs to be fixed. Doctors who have told you that your under-active thyroid has nothing to do with your over-active digestive system, which has nothing to do with your painful menstrual cycle, and there’s no way to address all of these things at one time. Doctors who have told you that you are a “medical mystery” and that maybe your symptoms are really just in your head. Doctors who spend 5 rushed minutes with you in a white-washed, soulless room before recommending you an over-the-counter medication that you’ve already been using for years, a medicine that just addresses the symptoms and not the root causes. Doctors who have told you that your top priority of all of your health challenges must be to get you well enough so that you will be able to have children (when you tell him you don’t want children, he assures you that you’ll change your mind). But you want to understand your body better, to figure out things that you can do to feel better some of the time (often you also want to “fix” your body, because you’ve internalized that there’s something wrong). So you keep trying new doctors, hoping that some of them will be helpful, will have some insight that you can piece together on your own. It feels like trying to navigate a foreign landscape with a faulty compass, and you just have to hope that this time the compass will point true north. 7. Gan Mao Ling, 1140mg You take this because your best friend’s Jewish, Trump-supporting, Chinese-herbalist grandmother recommends it, and hey, why not try it? At this point, you’d try most anything. 8. Work, 2 hours After all this, you’re probably ready to start working. Do what you need to do early, cause you’ll likely run out of energy in a few hours. You can probably get in a good two hours before your body shuts down and you need to switch into full time care-taking mode again. The problem is, even when you have enough energy to sit down and start the work, the brain fog is still there. It is so hard to do the work that you’re expected to do at college when you can’t form thoughts coherently, because it feels like your brain is filled with wet cotton balls. In OT you did an activity with Theraputty where your therapist hid pennies inside putty. The putty was a bright teal color, as viscous as it could be without being solid. You dug through the putty with your semi-healed hand and pulled out the pennies one at a time. When you found the smooth surface of a coin, you grasped onto it with your thumb and forefinger (a grip that caused a jab of pain to shoot down your wrist), and teased it out slowly. The putty hung on in thin tendrils, and you had to pull the penny far out until the tendrils became thin enough that they snap, freeing the coin. A lot of days, this is how your brain functions. The pennies are thoughts, few and far between, and you must work diligently to pull them out of the putty of your brain. Assignments are hard to finish when they’re made from pennies. 9. Lunch, 2pm Exactly four hours after you’ve had breakfast, you’ll need to eat lunch. You can’t wait too long or the nausea will come back with a vengeance. Worse, though, is if you get too hungry you won’t be able to stay on top of your hunger for the rest of the day. Hunger feels like a snowball effect—it starts off as just a collection of a few snowflakes, and then it rolls and picks up speed and mass until it is way out of control and there’s nothing you can do but watch the snowball go careening down the mountain, destroying anything in its path. The problem is that sometimes you don’t notice the snowflakes accumulating until it’s too late, or sometimes you try to ignore the small snowball because you’re in the middle of class and you’re not supposed to eat. Sometimes you notice enough in advance, but you’re out and don’t have access to food that works for you (drug stores are sorely lacking in foods processed without soy). Ideally, you’d have prepped all of your meals for the week on Sunday, and have had the foresight to carry enough food around with you for the day. Often, though, you are too tired on Sunday to spend all day cooking, or you need to catch up on work and don’t feel like you can afford to take the time off. Or you’re rushed in the mornings because you woke up later than intended because you were tired because you had insomnia because you took an afternoon nap because you were tired. And so you often don’t have enough food with you, and the snowball gets away from you. This happens with lots of things—your body requires so much, and it’s hard to stay on top of everything you need to keep yourself feeling good. You feel like you have to be perfect in taking care of yourself or else you won’t feel good, but you’re not perfect all the time. You make mistakes: you forget food, you nap later in the afternoon than you’re supposed to, you forget to take medicines. You think that maybe being such a perfectionist might be a problem in the first place, because in striving so hard to be perfect you wear your body out. But you also want to feel good. You wonder what it might be like to just accept the fact that you have chronic illness, accept the fact that you won’t always feel perfect. What it would be like to accept the fogginess and fatigue instead of trying to fix yourself. Maybe you would live a lot more sustainably, because right now you’re operating according to how you could feel, rather than how you do feel. Acceptance—what a concept. 10. B12, 3000mcg The last time you didn’t take B12 for an extended period of time, you suddenly lost the ability to control your left hand. You remember lying on the couch reading a book, and when you went to turn the page, you couldn’t move your hand. The signals from your brain just no longer connected to your body. You freaked out and rushed to the Emergency Room, where they did an extensive slew of tests—ECG, bloodwork, cat scan. (Ironically, you freaked out when your body ignored signals from your brain. But every single day for as long as you can remember, your brain has overridden signals from your body. You’ve been carefully trained that these signals don’t matter, and are to be ignored. This doesn’t freak you out as much as it should.) You’ve been through this routine more times than you care to remember—countless ER visits because you didn’t know what was happening to your body, just knew that it was bad. Visits for paralysis, for mystery fevers, for fainting, for stomach pain, for heart palpitations. Each time (and at many regular doctor’s visits), you’re told that the tests show nothing wrong, that everything seems to be “normal”. You’re told that your symptoms can’t be explained, and so you walk out of the ER even more unnerved than when you walked in. What does it mean to have a body that no one understands? If your body can’t be understood, can you ever be seen? Can you ever heal? 11. Iron, 100mg For the anemia, which is just one more symptom that can’t be explained sufficiently. You’ve been taking iron for years and your levels are still lower than they should be. So you keep taking it and make peace with the mystery bruises that appear all over your body. 12. Vit D, 1000IU Does this help? Who knows? Also, what is an IU? 13. Omega 3, 1000mg You once read an article that said fish oil can cause cancer because it’s not regulated by the FDA most of the time. But, it’s supposed to help with immune function, and god knows you need that. You asked your doctor about the cancer issue and he recommended a brand that is supposed to be high quality, so that it doesn’t contain the carcinogens that fish oil from Walmart might. This fish oil he recommends comes in a carefully-crafted brown glass bottle that has heft to it, with a pretty floral design on the label. It stands apart from the other plastic bottles on your medicine shelf, and so carries (in your mind) some authority, some reassurance that it (probably) won’t cause cancer. It also costs $45 per bottle. $45 that you don’t really have, on top of the $70 copay for your weekly OT sessions, the $160/month for the holistic doctor, the $100/week for high quality food that meets your allergy needs. You still get a monthly bill (that you’re pretty sure you’ve paid) from Miriam hospital for $378 left over from your car accident in September of 2018, as if the other $20,000 in medical expenses wasn’t enough to pay on top of breaking your hip. It is expensive to be sick. So you feel pressure to work two jobs on top of your school work, to try to make enough to cover these doctors’ visits. Because taking care of yourself, even though it’s a full time job, doesn’t earn you money in this society. You wonder if maybe you would save more money by not working at all, because with more rest you might not need to spend as much on doctor’s visits. Maybe. 14. Nap, 20 minutes You know by now that you need to lie down and close your eyes at least once during the day. Ideally, you’d take a 20-minute rest after every “strenuous” activity (walking to class, class itself, socializing, working, doing laundry, going to the grocery store, walking up a flight of stairs, going to pick up prescriptions at the pharmacy), but that’s not possible. You often are on campus in the middle of the day when you need to lie down, and going all the way home would wear you out more than rejuvenate you, so you find random places to nap on campus. On pulled-together chairs in an empty classroom in Page-Robinson. In the back of the stacks at the Rock. On a gross couch in the lounge of a dorm. On the carpeted floor of Barus and Holley with your beanie pulled over your eyes to keep out the fluorescent light. (You wish Brown had a nap room in the middle of campus you could go to.) You know that lots of college students sleep in all kinds of weird places, but you can’t help feeling embarrassed by lying down in public. You worry that people will judge you, or that people will think less of you if they know you can’t make it through the day without a nap (when other people nap, you assume it’s because they have a “legitimate” reason like only sleeping 2 hours, as college students are wont to do. But this logic doesn’t apply to you. You don’t have a legitimate reason, in your mind.). You worry a lot about being truly seen as you are in this body, worry that if people really knew how you felt most of the time, that they would think that you aren’t qualified for life at an Ivy League (or elsewhere). (This is projection—you worry that you aren’t qualified. You think frequently about what life you can have with this body. Will you be able to work? Are there any places that can accommodate you? Or will you have to live on a disability check if you don’t figure out how to feel better?) You worry that people will see you differently, will pity you. And you don’t want to be coddled, or receive sympathy. Your independence is important to you. (Why? Because you’ve been told to value it above all else.) You feel like you already ask for too much support when you’re really down and out (you’re trying to disentangle the idea that support is transactional or conditional, but that’s deeply ingrained), so you have to appear strong the rest of the time. At the same time, you so deeply long to be truly seen as you are. 15. Gratitude Journal, 15 mins You try to appreciate all the other wonderful parts about your life, even when your body makes life hard, so you spend the evenings (when you have enough energy) writing out things you’re thankful for. Sometimes, you even try to extend some gratitude towards your body. There’s a lot that your body does for you. Even when you don’t feel well, you live an incredibly full life, and your body takes you through all of that. She also is teaching you how to slow down (if only you would listen). You told your therapist that your body is the best accountability partner you could ask for on the journey to living a more sustainable life, and you meant it when you said it. Sometimes (often), though, you think that’s bullshit, and you wish you had a different body. 16. Zinc, 60mg There are so many supplements and medications and tinctures, and you have to take most of them separately. Fiber will block levoxyl absorption, iron will compete with zinc, magnesium and calcium don’t interact well. When you remember to, you check off each medicine dutifully on a big spreadsheet you keep in your notes app designed to help you keep everything straight. You also try to keep track of your sleep quality, your exercise, what you ate, your energy levels throughout the day, your mood, and your physical symptoms. Most nights, you open the spreadsheet for the first time when you take your zinc at the end of the day, and struggle to remember what you actually took (there are all sorts of reasons you don’t take all the medications you’re supposed to—you forgot to order them in advance so they’ve run out, you forget your pill box at home, you don’t want to pull out your big-ass pill box in front of your friends at lunch, you just forget). Later, though, the empty holes in the spreadsheet make it hard to draw patterns between the things that you do and the way that you feel. Are you tired because you forgot to take the B12? Because you exercised too much? Not enough? Because you couldn’t sleep? Figuring out the things that work and don’t work is hard when there are so many pieces (too many pieces for you to keep track of). 17. Valerian, 400mg Ironically, even though you have so much fatigue that all you can think about past 4pm is how long you have until bedtime, you often can’t fall asleep at night. You lay in bed for an hour or more, growing increasingly frustrated at the litany of thoughts your brain throws at you, compiling a giant to-do list that you doubt you’ll have energy to get to tomorrow. The valerian helps sometimes, but sometimes it’s not enough and you have to take something stronger. Your regular doctor (one of the three) recommends that you go to a sleep specialist to look into the insomnia and restless sleep. So now you add to your to-do list to find a sleep doctor in-network, make an appointment (probably for three months from now), and figure out a time to fit it in during the two weeks you’ve given yourself off for the summer (“breaks” are almost always filled with doctors appointments). You’re growing tired (but not tired enough to help you sleep, apparently) at having to see so many doctors, but good sleep would help a lot, so you add it to the bottom of the list. 18. Sleep, 8:30pm You know not to push this time. Go to bed later and you’ll wake up feeling exhausted tomorrow, no matter how long you sleep in. It doesn’t matter if your friends are having a get-together or your cousin is getting married or you have more work to do that you haven’t finished. You’ve learned the hard way that your body requires you to miss out on some of the traditional types of fun at college (the last time you drank alcohol you had an allergic reaction and fainted), but it’s still hard to drag yourself away from your living room while your roommates laugh loudly as they play Bananagrams. You wonder if maybe this causes the loneliness you often feel—the fact that you don’t have much overlap with most of your friends’ schedules, that you often have to say no to social events, that you can’t share a lot of experiences with them, that they can never really understand your experience of your body. Maybe that’s why, when you feel good, you try to be extra social, planning three or four social events in a day. You’re starting to realize that this much socializing might actually wear you out more than you thought, which means you might need to tone it down a bit. But that feels scary, because that means you have to be alone with your body. When you’re with other people, you can at least pretend to be distracted from the pain and the fatigue. As you drift off to sleep, your last thought is that tomorrow you will have to get up and do everything you did today all over again. Even thinking about it exhausts you. Appendix—contingent medicines to have on hand: Imodium, 6mg You carry a giant bottle of Imodium with you at all times for any time your stomach gets out of whack. This could be because you ate too many chickpeas or onions, because your period will start in anywhere between the next 2-10 days, because you’re stressed, or just because your gut feels like it. The last time you went to a GI doc to investigate why you need Imodium so often, and he told you (after a 3 minute conversation) that there was nothing wrong with taking Imodium as often as you want. “You can take up to 8 a day. So just do that. I see about 10 patients a day your age who have symptoms like you, and honestly there’s no way to cure IBS. But 8 Imodium should fix you right up.” He neglects to mention the bloating and discomfort that comes with taking Imodium, nor the unnaturalness of shoving 8 pills into your mouth just to get through the day. The appointment ends quickly, and you think you have a “solution,” so it’s not until later that you wish you’d thought to push back a bit more. To ask why, when he makes six figures a year and specializes in gastroenterology, that he doesn’t have a better option for all these young people who come into his office every day. To ask why he thinks so many people experience these symptoms, and if it has some correlation to rising anxiety levels. To ask him to spend more time with you and not give you a cookie-cutter bullshit option for “managing your symptoms.” To ask him why he gets to make so much money, gets to wear a white coat, when you actually know your body so much better than he does. All these questions don’t occur to you until much, much later, but you wished you had asked them. Ibuprofen, 600mg You don’t include this in your daily routine, but you might as well given how often you take it. You need ibuprofen to get through most days, to get through the tasks that this life you’ve chosen demands of you. You keep a bottle of ibuprofen with you in any place you might need it—your backpack, your purse, your car, your bedside table—so that you can quickly pop 2 or 3 pills (almost always 3, given the severity of your headaches). You do this so often that you don’t stop to think about it most of the time you take it (when you think about this, the lack of thinking terrifies you). All you think about is that you need to get to your next class and that you can’t justify skipping it because you’ve already missed too many classes and your professor might not like that (though you haven’t tried asking). So you take the pills. In this act, you are purposely ignoring your body’s inflammation (Ibuprofen is an anti-inflammatory), inflammation that might be an important message from your body about the pace of your life. A message from your body asking you to stop and think about what it means to have to recover from your day-to-day existence. Asking you to think about what it means that your life is so much, so overwhelming, so unsustainable, that your body is constantly inflamed. You wonder what would happen if you listened to this inflammation, if you tried to proactively keep it from happening rather than just addressing the symptoms. But that feels scary, because you’d have to do things very differently. If you really paid attention to your body, you wouldn’t be at Brown. You wouldn’t try to do 5 extracurriculars. You wouldn’t care about keeping your 4.0. Up until now, you’ve internalized that these external “successes” are worth more than your health. You’re starting to wonder if that’s true. Elix For the dysmenorrhea. This is at least an exciting condition, because the symptoms change every month. Sometimes you get nauseous and dizzy (sometimes with fainting), sometimes you get worse headaches, sometimes you get insatiably hungry (this is your favorite one because then you allow yourself to eat carbs with an abandon that you never do otherwise, because despite all your health challenges, you’re still concerned about your body image). You saw an advertisement for Elix in a YouTube yoga video and you thought you’d try it, along with acupuncture. Western medicine has pretty much failed you, has actively harmed you, so you’re branching out and trying some new things (though of course insurance doesn’t cover these “alternative therapies”). Both your online diagnostic test for Elix and your acupuncturist tell you that you have “stagnant qi,” which means that your energy is being stored in a place where it can’t be accessed. You do have energy in your body, they tell you; it’s just hiding away (maybe because you’ve scared it by asking for too much). And so there is no “problem” with your body, nothing to be “fixed.” There is simply a matter of redirecting energy. You like this framing of your body, but you find it hard to internalize.
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