Yoga failed me. Essential oils made me break out in hives. Bubble baths were out of the question.
I sat in a dark office cubicle with my head on my desk as the morning sun grazed over the fog-laden city below me. The back of my neck seemed to scream in protest from the awkward position, and my stomach turned over and over like the world’s most inconveniently-timed washing machine. It was a comfortable 72 degrees on my floor, but my body was shivering uncontrollably.
I opened my tiny Moleskine journal and wrote with shaky hands: This is what it feels like to die.
I wasn’t dying, of course — just very, very ill, and since up to that point no doctors had been able to diagnose me, I was going about my days completely untreated. Dramatic as my note to no one seemed, the peak — or more accurately, the valley — of my chronic illness was the worst I’d ever felt. That’s saying a lot, considering I was a very sick child who almost didn’t make it to toddlerhood.
The face of my late grandfather appeared in my mind, and I thought about how sunken and gray he looked just before he died. I mentally kicked myself for comparing this flare-up to end-stage leukemia, but without a diagnosis I had no way of knowing that this wasn’t something as serious as what he’d gone through. All I knew is that he felt similarly when he was enduring chemotherapy: crippling nausea, muscle aches that refused to go away even with the heaviest dose of Excedrin, endless fatigue, and coldness — the kind of coldness that freezes your bones and circulates throughout your bloodstream like some hellish IV drip.
Blood tests had revealed absolutely nothing. I would later find out that they’d hinted at some hormonal imbalances, but since that wasn’t what I was inquiring about, the doctor would never bring those to my attention til years later when the problem was too big to ignore. Specialists chalked up my pain to stress. Male specialists attributed it to “the pressures of being a young woman in today’s society”, as if I were vomiting multiple times a day because I couldn’t get the perfect smoky-eye look the night before.
The only reprieve I would ever get from these waves of agony was in my sleep, and even that was difficult to achieve most nights. I’ve always been an eager overachiever, but that meant I felt intense guilt if I wasn’t doing something productive. Going to bed before finishing a project was out of the question. Skipping work or school for a “mental health day” seemed absurd. Getting eight hours of sleep was not only impossible to me, it was something I was convinced I didn’t need. I teetered around four to five hours during the week and six or seven on the weekends. On those rare occasions when I managed to pass out for ten full hours, I took a hearty dose of caffeine pills so I could catch up on work and projects from the day before.
Those of us with chronic illness refer to ourselves as “spoonies”, which is derived from Christine Miserandino’s Spoon Theory essay. This is the idea that chronic illness allows people a certain amount of “spoons” (representative of your total energy level) throughout the day. Each activity, no matter how small, consumes a spoon. Once you’re out, you can only recharge through sleep or rest. Otherwise, you’re unable to function and risk hurting yourself either mentally or physically. At my lowest point, most of my “spoons” were consumed by 10am.
At the time, I didn’t realize just how badly I was sabotaging myself. I was sick, but I was still going about my daily routines as if I were perfectly healthy. I would still wake up at the crack of dawn, check my email and respond to any urgent messages before I even left my bed, spend a full hour on my skincare and makeup/hair routine, down several cups of coffee before 9am, then reverse the same process at night. It didn’t occur to me how much energy I could be saving myself if I just gave myself a break.
One one particularly awful night, the pain was so bad that I couldn’t stand at my sink to brush my teeth. I sunk to the floor as my legs gave out from under me and crawled into the shower to finish the job like some kind of wounded animal. I placed my toothbrush next to me and closed my eyes.
And I slept. Like really, actually slept…on the floor of the shower. And I wasn’t even drunk!
Sore as I was the next day, it occurred to me to try something a little unconventional. It was a weekend, and I was feeling a little more alert from the extra few hours of sleep I’d gotten the night before, so I took the day to “spoon-proof” my room. I tucked my sheets into my bed so they wouldn’t move around at night and leave me freezing. I placed my TENS Machine, a bottle of water, my meds, and my phone on the windowsill next to my bed. I cleared away everything else (mainly trash, empty bottles, books I’d never read, and some wilted flowers I’d gotten weeks prior but never had the spoons to care for), thinking that the tidiness would improve my mood. I placed my floor-length mirror on the floor of my bathroom, along with my toothbrush, toothpaste, hairbrush, and just a few essential makeup products. I did a load of laundry and set aside two outfit options for the next day. I set my desk chair next to my bed as a makeshift wheelchair that could transport me the seemingly endless six feet from my bed to my bathroom as needed. A close friend gave me the idea of creating healthy meal prep boxes (read: homemade Lunchables) of pre-portioned ingredients that required very little energy to put together.
I spent the entire day either on the ground or in my bed. I didn’t open my laptop even once. Sure, I checked my phone, but mostly just to play mindless games or scroll through support blogs from fellow spoonies. I gave in to the mindfulness trend and tried some breathing exercises. Those didn’t help my pain, but they did bring me back to center and put me straight to sleep. After just one day of practicing this radical self-care, I made it a goal to do this at least once a week. My morning and night routines still took place on the floor, which was a welcome change after a long day of work and school.
Everything changed when I started sleeping better. I developed more emotional energy and confidence to be assertive in my own self-care. I stopped taking “I dunno” for an answer and began questioning any authority that claimed they couldn’t help me. I turned to the internet for answers, like many of us do, and found communities of people who had been through the same thing.
The flare-up eventually passed and I was able to function like a normal human being, which meant it would be difficult to prove I’d ever been sick to future doctors. I suspected several different diagnoses, but decided to spend more time trying to treat the symptoms than trying to find an answer. I experimented with diet changes and isolated a few foods that triggered or worsened my symptoms. I prioritized my mental health and sent a long-overdue message to my therapist that I’d like to revisit the idea of an intensive outpatient program. I cut out toxic people and made a friend who was willing to help me with my work without expecting anything in return — a nice change of pace from friendships past. I started seeing my home and my bedroom as friend and ally, not some kind of barrier keeping me from being productive or social.
Prioritizing “me” time, even when spent unconscious, turned out to be the most productive thing I could have done for treating my chronic illness. The ability to say, “I’m hurting and I need a break” is a privilege I was fortunate to be able to afford, but there are still so many people who are not in a social or economic position to assert themselves the way I did. When your paycheck is the only thing keeping you afloat and you risk losing your job or your scholarship if you dare take a break, it becomes a lot more difficult to maintain a self-care routine. Talking about the importance of sleep and proper rest is the only way to change a system that rewards a “go-go-go” lifestyle and punishes anyone who burns out.
Your body and mind physically cannot heal and repair themselves without sleep. When you continuously run on empty, you risk worsening the problems you already have: your blood pressure rises, your memory suffers, and you lower your life expectancy overall. By finding small ways to increase your down time, you can speed up your illness recovery time and even prevent future flare-ups.
I would be remiss to suggest that my chronic illness was cured just by getting more sleep. But I can’t deny that reevaluating how much time I was spending in bed (or another cozy corner, usually with a book in hand and some soothing music) impacted my mental and emotional capacity to tackle what was happening to me. My body and mind were ready to try doctor-recommended treatments and tests; before I came to this revelation, the amount of doctors visits I’d undergone had fried me and made me lose my confidence in medicine. Renewed and well-rested, I felt ready to advocate for my health even to professionals who didn’t take me seriously.
Our bodies are magical, fascinating machines with complexities far beyond our understanding. They’re built to survive and have built-in mechanisms for fighting off just about anything the world can throw at them. Even when they malfunction, they have the ability to recover when given enough time — and sometimes a booster or two in the form of more complex medical interventions. Those of us with chronic illnesses are used to being told our experiences are unreal or invalid. When we start and maintain the conversation around the importance of rest, we can advocate not just for ourselves, but for the millions of people who aren’t in a position to speak for themselves. We can create a movement of non-movement. There is power in stillness, and possibility in inactivity. We can be advocates and activists from the comfort of our beds.
With pickets in hand and a pillow in the other, we can make small but meaningful changes, eight full hours at a time.