GoKawiilOne of the first major crashes I experienced as a chronically ill person happened on an unusually sunny January day in New York City. It was 2023, and I was riding my bike with a friend, flying high from the exercise. We’d covered just over 40 miles on mostly flat ground, a longish ride, but not out of ordinary for me. And that’s when it started. About 15 minutes from my apartment, my body gave out.
At first it was just my head — it grew hot, and within minutes, my brain felt like it was on fire. Pretty soon, the rest of my insides were burning up, too. As the skin on my arms and face turned red, and my limbs grew heavy, I felt bewildered. I was fine just minutes ago, I thought. I was tired, but the ride didn’t feel that hard.
“I think I need to stop,” I told my friend. I couldn’t think. I drank some water, ate a snack, and tried to compose myself alongside the bike path on Eastern Parkway. I don’t know how long we stayed there, but my condition didn’t really improve. Eventually we got back on our bikes and pedaled, much slower than before, to my apartment. I turned 34 that day, and what I remember most is the time I spent in bed after the ride, while my immune system went berserk. My spouse was in Vancouver, Washington, visiting family for the holidays, and I was on my own. So I just laid there, barely able to move, until the following evening.
Three years later, I barely crash anymore. I’m still chronically ill; I have long covid, and two other conditions: postural orthostatic tachycardia syndrome (POTS), which hinders my ability to stand for long periods, and mast cell activation syndrome, which can cause my body to randomly react like I’m allergic to something even when I’m not. This means I have to be careful about how I spend my time and what I eat. But as I write this, I can’t remember the last time I spent an entire day in bed. “Sheer luck” is probably the best way to talk about at least some of the improvements I’ve experienced. “Privilege” is another. I was able to see curious and knowledgeable physicians early on, and I have insurance that covers most of the meds I take.
Arielle Duhaime-Ross at their home. Photo by Evan Ortiz / The Verge
But at least part of the credit for the stability I currently enjoy goes to an unlikely tool: the fitness tracking devices that I purposefully “misuse” every single day. Because over the last nearly three years, fitness trackers have helped me do the very opposite of what they were originally intended to do. I use them to do less — not more.
The proper way to talk about what I’m doing is to say that I use fitness trackers to “pace.” Pacing is an energy management technique that involves balancing periods of activity with periods of rest to avoid physical and mental overexertion. The idea behind the practice is that by carefully planning and prioritizing the tasks and activities you do throughout your day, people with energy-limiting conditions like mine can avoid falling into a cycle of repeated crashes or worsening symptoms. Pacing isn’t a cure or even a way to improve your overall condition, at least not inherently. But for many people with these conditions — folks with ME/CFs (formerly referred to as “chronic fatigue”), POTS, fibromyalgia, or even Parkinson’s, for example — pacing can make life a little more predictable.
Arielle Duhaime-Ross’ Whoop arm band. Arielle uses their health trackers to “pace” and manage their chronic illness. Photo by Evan Ortiz / The Verge
“It’s energy conservation,” says Raouf Gharbo, an osteopath at Virginia Commonwealth University who specializes in rehabilitation. Gharbo often tells his patients that pacing can look a lot like “spoon theory,” where a disabled person understands that they have a finite, but variable number of “spoons” — a proxy for a unit of energy — that they can “spend” in a single day. With pacing, the idea is to avoid running out of spoons by carefully budgeting them.
Pacing is hard to learn and even harder to do consistently. And if you ask me, that’s because pacing honestly sucks. It means learning to pay close attention to how your body responds to every little thing you do. Making peace with holding back, slowing down, being patient, and saying “no” to things you might enjoy. Not to mention having to learn to ask for help if it doesn’t come naturally. Plus, your condition is likely always evolving, so you also have to adjust your pacing technique to match it. Something as simple as a change in the weather might alter the number of spoons you have to spend.
... continue reading