13:37 minutes until the rhubarb cobbler is ready. I spent another hour or so trying to draft a message to send to the people who used to be my closest friends and who I need to tell somehow what’s been happening to me. I’ve been working on seven versions of it for four weeks, since… Continue reading May 17, 2025, 20:35
May 16, 0:33am
Yesterday from 1pm throughout all of today was supposed to be my free time. I was hoping I’d be able to paint a little, I have ideas for my current paintings and at least two new ones. Instead, I had to spend the entire time lying down. Multitasking has evaporated from my life. At this… Continue reading May 16, 0:33am
May 16, 2025, 0:33
Yesterday from 1pm throughout all of today was supposed to be my free time. I was hoping I’d be able to paint a little, I have ideas for my current paintings and at least two new ones. Instead, I had to spend the entire time lying down. Multitasking has evaporated from my life. At this… Continue reading May 16, 2025, 0:33
May 13, 2025, 19:32
There are days when I still feel like an imposter, like I’m making all of this up. It’s 8pm and I’m so exhausted, I feel like I’ve been poured on the ground. My heart rate is at 98 beats per minute; I’m resting. 15 minutes ago, I got up to get water; I almost fainted,… Continue reading May 13, 2025, 19:32
May 12, 2025, 22:45
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
May 11, 2025, 23:47
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
May 9, 2025: The Embodiment
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
May 8, 2025: For A Few Weeks, I Thought I Had It
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
May 7, 2025: The Nonsleeping
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
May 6, 2025: The Disciplining
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