Health

The Story

In 2013, I unknowingly acquired Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” (ME/CFS)—if you’re familiar with LongCovid, it’s essentially the same. The onset was gradual for me, and for a long time, no one knew what was happening.

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 sore, achey, and exhausted that I couldn’t get out of bed. As my condition steadily declined, I resigned from the Washington Post, and by 2016, I stopped working altogether.

Sleep doctors 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 one would 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. I finally figured out that I had ME/CFS in late 2017, and I had a doctor confirm it shortly afterward. But a few weeks after my discovery, just before Christmas, my health fell off a cliff.

I became bedbound and began getting intense migraines. Light & sound were totally unbearable. Reading & writing were impossible. Screens immediately triggered migraines. Everything hurt me and I could hardly move. It’s impossible to convey just how dark and frightening that year was. Even I struggle to understand it.

I’ve made gradual improvements since then, but the disease is still severe. I spend most of the day on my back, I have to be careful about screen time, and I haven’t watched a sunset in years.

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. If you push and crash often, your illness gets worse. I spent five years pushing and crashing, which led to my severe condition.

Some of my symptoms: 

  • Frequent migraines.
  • Extreme light sensitivity; when I leave the house, I wear blindfolds.
  • Extreme sound sensitivity; I wear earplugs 24/7.
  • Physical stamina; when I leave the house, I ride in a wheelchair.
  • Cognitive stamina; if I read or listed too much, I crash. 
  • Postural Orthostatic Tachycardia Syndrome (POTS); my heart rate spikes if I stand too long.
  • Muscle pain in my limbs; it’s especially bad when I crash.
  • Random muscle twitches.
  • Aphasia; during a crash or migraine, it varies from a stutter to difficulty with words to being completely mute.
  • Paralysis; sometimes I completely lose the ability to move, for just a few minutes or for a few hours.
  • Sleep disturbances; I have trouble staying asleep more than a few hours, even with medication and supplements.
  • Brain fog; sometimes it’s just difficult to think.
  • Gut trouble; probiotics and fiber help.
  • Communication stamina; verbal conversations are taxing for me, especially phone calls.

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. I’m doing my best to live within tight limitations.

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 actually subscribe to support me and my work!


Resources

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

Quick Facts: concise info from #MEAction

Unrest: an accurate and compelling Emmy-nominated documentary about the disease; this is honestly the best place to begin.

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