In 2013, I unknowingly acquired Myalgic Encephalomyelitis or "Chronic Fatigue Syndrome" (ME/CFS). The onset was gradual, and no one knew what was happening.
The act of thinking became difficult; I would stare at work emails until my head filled with white noise. I found myself stopping to catch my breath while climbing the stairs. I tried to work out a little, but the following day I'd be unable to get out of bed, feeling sore and achey as though I had the flu.
My condition continued to decline. I resigned from the Washington Post, and began working part-time. I stopped that and went freelance. Eventually, I couldn't work at all.
I saw sleep doctors and learned I had sleep apnea and idiopathic hypersomnia (daytime drowsiness that doesn't improve with sleep). I've likely always had these conditions. They gave me stimulants and told me to push through my tiredness. My body seemed to balk at the idea, but I didn't know what else to do. Shortly after figuring out I had ME/CFS in late 2017, I managed to push my health right off a cliff.
I abruptly became (mostly) bedbound and began getting migraines. Light & sound were unbearable. Reading & writing became impossible. Screens immediately provoked migraines. Everything seemed to break me. 2018 was dark.
I've made small improvements since then, but the disease is still quite severe. I get migraines constantly. I haven't seen a sunset since 2017.
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. This is called Post-Exertional Malaise (PEM); it can occur days after whatever triggered it, and it's a primary feature of ME/CFS. If you push and crash often, your illness gets worse. I spent about five years pushing and crashing, which led to my current, severe condition.
Some of my symptoms:
- Frequent migraines.
- Extreme light sensitivity; I can handle about 40 watts on a good day, and if I leave the house, I wear blindfolds.
- Extreme sound sensitivity; I wear earplugs 24/7 and keep a white noise machine on in my room.
- Physical stamina; I can walk about 40 paces without resting--if I leave the house, my boyfriend pushes me in a wheelchair.
- Cognitive stamina; I crash if I read too much, listen too long, or look at a screen too often.
- Postural Orthostatic Tachycardia Syndrome (POTS); this is well-controlled with atenolol.
- General muscle pain in my limbs; gabapentin and baclofen mostly contain this.
- Random muscle twitching; some days are better than others.
- Aphasia; usually only during a crash or a migraine, but it varies from a stutter to difficulty finding words to being completely unable to speak.
- Paralysis; usually just during a crash, I completely lose the ability to move anywhere from a few minutes to a few hours.
- Sleep disturbances; I have a number of night meds, including Ativan and Low Dose Naltrexone (LDN), but adequate sleep is increasingly difficult to obtain.
- Brain fog; sometimes it's just difficult to think clearly.
- Gut trouble; probiotics and fiber help.
- Temperature sensitivity; if my bathwater is too hot, I crash.
- Phone trouble; verbal conversations are taxing for me, especially phone calls, which I limit to Brendan (my partner) and telehealth appointments.
I'm currently working with an ME/CFS specialist, as well as several neurologists. I have a good team of doctors, but there is no cure. I've tried many treatments, and there are always more to try, but full recovery is rare. I'm doing my best to live within very tight limitations.
If you'd like occasional updates about my health, you can follow me on Patreon. Skip the subscribe options, hit Follow, and every month or two you'll get a message from me in your inbox.
Want to learn more? There's a lot of misinformation out there; here are some sources that I find helpful:
Quick Facts from #MEAction
Unrest: an accurate and compelling Emmy-nominated documentary about the disease; this is honestly the best place to begin.
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 to #MEAction in my name