what it’s like to be in an ME/CFS crash

trigger. can be something “small”. In my case it was crying for a few hours because of long covid symptoms

about 8h later, I started getting very intense waves of visceral nausea radiating from my head and neck, and any light, sound or speaking made it even worse. I managed to fall asleep but I knew I had fucked up. Full of the terror of knowing what’s coming and not being able to do anything.

I woke up the next day and felt basically catatonic. Muscles too weak to sit up or roll over. I couldn’t speak out loud, the sound of my voice felt like it was tearing into my brain. I struggled to drink water with a straw from my position and laid in my silent blacked out room with my eyes closed falling in and out of delirious half awareness. It felt like my body was legitimately dying and shutting down and I was afraid my heart would give out because of how weak I was. Breathing was harder, digestion was off the table.

I “fell asleep” at some point, but it felt fragmented and like intermittently blacking out.

Continued to barely move the second day, but was able to drink some lentils through a straw and somehow stagger over to the bathroom. Sitting up slightly made me feel like I was going to pass out, blinding neck pain, felt like my head was going to fall off my shoulders. Nearly blacked out standing but too weak to crawl.

Repeat variations of this day for the next 3-4 weeks. I was able to use my greyscale phone with my blue light glasses for a few seconds every few hours in the beginning to ask for food, meds, water, and as the crash progressed this became a couple minutes every 40 mins. If I overdid phone by a few mins, it felt like my brain was being fried / bathed in acid, and would take 2-6h of no stimulation rest to recover. and tbc when I say phone use it was low contrast text-only short messages or twitter to keep me from hallucinating/actually going insane (happens in v severe crashes)

I ate around 500-600 cal a day worth of liquid food for the first 10 days, because my digestive system was too slow and fragile for more to not worsen the crash. Chewing was also intensely nausesting- it took 2 months for me to be able to chew food that wasn’t liquid/soft again.

I did a lot of daydreaming and half aware delusional thinking. Mostly just taking it one minute at a time, waiting for “sleep” so I didn’t have to be conscious. I had some migraines and very bad neck/back pain, as well as general non-pain physical suffering around my head (severe nausea, allodynia, dysesthesia). I tried focusing on breathing or whatever but really you want to be dissociated as possible, meditation not conducive to that.

After 1mo I was able to sit up a bit, but still extremely light and sound sensitive, struggling w phone use (up to a few hours a day). Still struggled to speak out loud for more than 5-10 seconds, still was not able to stand up, open blinds and see sun at all, or really turn on lights. could not watch videos, even short ones, or listen to audio, or read long text for more than a few minutes.

After 1 more month of this I regained ability to eat more, some light, speak out loud, short videos, read easy fiction, sit up for 1h or so a day. Thats where I’m at rn. I did get a really unpleasant sleep disorder and return of my weird mystery neurological symptoms tho, allergies, chronic neck pain, joint/nerve issues. But that’s long COVID side, back to baseline ME- symptoms wise after 8 weeks. From like 4h(?) of crying ONCE, I got what little life I had fucking bulldozed.

I’ve had ME for 11 months, and had 3 crashes about this bad total (the first one, which made me severe, was going out for my birthday, the second was going to the mall for a few hours on a good day, and then baseline decreased enough that for the last, crying was enough, and was literally my worst crash ever).

about half the time I’ve had ME was either in acute crash or in very light/sound sensitive chronic migraine-y recovery state.