The Short Of It
In 2013, I unknowingly acquired Myalgic Encephalomyelitis or "Chronic Fatigue Syndrome" (ME/CFS). The onset was gradual, and no one knew what was happening.
I began seeing 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, but they became my focus until late 2017, when I finally figured out I had ME/CFS.
A few weeks later, the disease abruptly changed and became quite severe. I became mostly bedbound and began getting migraines, among many other new symptoms. 2018 was dark. I've made small improvements since then, but the disease is still quite severe.
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.
My worst symptoms are:
- Frequent migraines.
- Extreme light sensitivity; if I leave the house, I wear blindfolds.
- Extreme sound sensitivity; I wear earplugs 24/7.
- Physical stamina; 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.
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. For now, 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