Health

The Story

A close up of my smiling, scruffy face, in black & white. Behind me, the last few letters of "The Washington Post," on the front of the publication's headquarters, are visible. The DC Flag is waving above my head.

Have you heard of LongCovid? The term refers to a significant number of Covid-19 patients who remain ill, long after the initial infection. This post-viral condition can disrupt lives and even leave patients bedridden. About half of LongCovid patients also qualify for a diagnosis of a disease called ME/CFS, though they may or may not officially receive that diagnosis. I don’t have LongCovid, but it nonetheless took quite a while for me to get an ME/CFS diagnosis.

In 2013, I unknowingly acquired Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” (ME/CFS). In my case, a more common coronavirus triggered it—a simple cold. Though it often occurs abruptly, the onset was gradual for me, and for about five years, no one could figure out what the hell was wrong with me.

Thinking became difficult; I would stare at emails until my head filled with white noise. I had to stop and catch my breath midway up a flight of stairs. I tried to exercise, but the next day I’d be so achey & exhausted that I swore I had the flu. Sometimes, I physically couldn’t get out of bed at all. As my condition steadily declined, I resigned from job at the Washington Post, and by 2016, I stopped working altogether.

First, I saw sleep doctors who uncovered my severe sleep apnea and idiopathic hypersomnia (daytime drowsiness that doesn’t improve). I’ve likely had those two conditions my whole life, but no doctor would agree to give me a sleep study until my health was completely falling apart. Doctors prescribed stimulants and a CPAP, which helped with the sleep disorders, but much to everyone’s frustration, my overall condition kept getting worse. Through my own research, I finally figured out that I had ME/CFS in late 2017, and a specialist confirmed it shortly afterward. But a few mere weeks after this discovery, just before Christmas, my health fell off a cliff.

I was suddenly bed-bound and began getting intense migraines on a regular basis (it took a while to get them treated). Light & sound were totally unbearable. Reading & writing were impossible. Screens immediately triggered migraines. Everything hurt me and I could hardly move. I had to lie quietly in total darkness, except for about 20 minutes a day, when I managed softly plink out a few notes on a keyboard to record musical ideas for later. It’s impossible to convey just how grim and frightening 2018 was for me. I still struggle to understand it, despite having lived it.

I’ve made gradual improvements since then, but the disease is still moderate-to-severe. I spend most of the day on the couch, and I only leave the house for medical appointments. I have to be careful about how long I participate in any given activity.

ME/CFS is a lot like post-concussion syndrome. It sets limits. If you push past your limits, you “crash” and get a painful flare up of flu-like symptoms that can last for days, weeks, or even indefinitely. If you push and crash often, your baseline gets worse. For years, doctors tried to get me to “push through” my fatigue, and that’s precisely what made my condition worse.

Some of my current symptoms: 

  • Frequent migraines; they’ve improved a little, but for years I got them on a daily basis. Sometimes they last for a few hours, other times they last for weeks. Their frequency ebbs and flows.
  • Extreme light sensitivity; when I leave the house, I wear dark sunglasses (for years, I had to wear a literal blindfold; sunglasses are a welcome improvement).
  • Extreme sound sensitivity; I often wear earplugs, because sound is often painful.
  • Physical stamina; when I leave the house, I usually ride in a wheelchair.
  • Cognitive stamina; I get worn out pretty quickly from listening to music, reading books, and watching movies. 
  • Postural Orthostatic Tachycardia Syndrome (POTS); my heart rate spikes if I stand too long, though my medications mostly mitigate this symptom.
  • Muscle pain in my limbs; this is less common currently, but it usually returns during a CFS crash.
  • Aphasia; during a CFS crash or a migraine, I sometimes stutter, or slur, or go completely mute.
  • Paralysis; sometimes I completely lose the ability to move, for anywhere from a few minutes to a few hours (this has thankfully become a rare occurrence, but it can still happen during a crash).
  • Sleep disturbances; I often have trouble staying asleep for more than a few hours, even with various medications and supplements.
  • Brain fog; sometimes it’s just difficult to think clearly or at all.
  • Gut trouble; thankfully, probiotics and fiber help.
  • GERD; I have to be careful about what and when I eat.
  • Communication stamina; verbal conversations wear me out, and I can only handle someone’s in-person presence for about an hour before I risk triggering a crash.

I’m currently working with an ME/CFS specialist, as well as several other specialists. I have a good team of doctors, but there is no cure. I’ve tried many treatments, but full recovery is rare. The safest strategy to deal with ME/CFS is called “pacing,” which just means identifying your limits and staying the hell away from them. I try to break activities into smaller chunks, or spread them over multiple days.

If you’d like occasional updates about my health, you can follow my Patreon. Skip the subscribe options, hit Follow, and every month or two you’ll get a message from me in your inbox. Alternately, if it feels right, you can subscribe to support me and my work. Disability income doesn’t even cover my medical expenses, so every patron makes a big difference.

Resources

Want to learn more? There’s a lot of misinformation out there! Here are some resources that I find helpful:

#MEAction: quick facts; dig deeper into the site, and you can also find a doctor locator, activism events, and LongCovid info

Unrest: an accurate and compelling, Emmy-nominated documentary about the disease—this is the best place to begin—unlike many other medical docs, this one is genuinely a good film too

Do I Have CFS?: help figuring it out

CFS Self-Help: advice on managing activity levels to minimize symptoms, also known as pacing

Health Rising: the latest ME/CFS-related news

Open Medicine Foundation: cutting edge ME/CFS research

MEpedia: a patient-run resource

Phoenix Rising: smart & deep patient forums

r/CFS: quick, newbie-friendly discussions & chats

Clinician Coalition: information for healthcare providers, including free CME credits

Donate: give to #MEAction in my name