Category: me/cfs journal

The ringing in my ears doesn’t stop. (Except when I stop taking the only medication that seems to help a bit against the constant bone-deep exhaustion.) These days, I can measure my exhaustion levels by how dry my mouth gets; I’ve never in my life been as thirsty as I get now after walking up… Continue reading May 12, 2025, 22:45

Aaaaaaaaaah. I’ve been unable to sleep for over 2 hours. An annoying detail that’s too big is that because my body’s temperature regulation is so messed up, I can’t share the bed with my partner anymore, or at least shouldn’t if I want to sleep at all. I run insanely hot, yet feel cold all… Continue reading May 11, 2025, 23:47

All I can feel is the high-pitched tinnitus, like the sound our old television used to make when turning it off, just permanently and with a tilt to the right. I spent the afternoon trying to remove mold from hard-to-reach spots in my ceiling. I’m exhausted during and after. I call it a day when… Continue reading May 9, 2025: The Embodiment

I’d read this book about Buddhist teachings applied to chronic illness, I learned a lot from ot, and for a few weeks, I really thought I had it, that I’d moved more towards acceptance and loving gentleness towards myself. Idiot. For the last few days, I’ve been back to aggression, frustration, hopelessness. One part of… Continue reading May 8, 2025: For A Few Weeks, I Thought I Had It

It’s 01:45am. I’ve been in bed for two hours, later than my usual time, and much later than the should-time. I’m wide awake, which is highly bewildering given that I’m also intensely tired and have been all day, and have already taken more than one sleep medication. I just tried a sleep meditation and it… Continue reading May 7, 2025: The Nonsleeping

It takes an unmusterable amount of discipline to be sick: Breakfast must not happen until 20 minutes after round 1. Two medications smell and tastes disgusting, and, even better, you don’t just have to swallow them, but NO THEY ALSO GIVE YOU STOMACH GAS SO YOU HAVE YOUR BURP A LOT FOR THE NEXT 7… Continue reading May 6, 2025: The Disciplining

There’s a way where being chronically ill removes humanness from you, peels it away like onion layers.  I saw a screenshot of a tweet on Reddit earlier today that went something like, “you go see a doctor, tell them you’re sick, and they go, ‘ughhhhhhhhh’,” and I think that’s not funny because it’s true.  On… Continue reading May 5, 2025: The Unhumaning

One late fall morning, you wake up and everything is the usual, until you want to get dressed and realize your entire life has gotten so small, you don’t fit into it anymore, no matter how much you wiggle and squeeze and tuck and suck in your belly. And yet, it’s still the only life… Continue reading April 22, 2025: The Smallening

The helplessness  The first one to say it was my general practitioner, a young, blonde woman with hair in a ponytail, oval glasses, and eyebrows that are always raised in an inquisitive facial expression: “I don’t know what to do at this point.” The next was my therapist, in a highly uncharacteristic Columbo moment, only… Continue reading April 15, 2025: The helplessness