Category: me/cfs journal

I went to a professional networking event earlier this evening, I showed up a fashionable 49 minutes after it started (in my defense, the organisers had described it as “drop in whenever”). Having spent the 6 hours before it in my hotel bed, blackout curtains shut, the sunlight and voices of a good 100 people… Continue reading June 15, 2025, 22:35: The Networking

I have a big presentation early next week. This used to be something I’d get nervous and anxious, but most of all excited about. Now, the logistics alone give me nightmares: How will I manage to drink so much throughout that I can’t handle my dry mouth and still speak, while ideally not having to… Continue reading June 13, 2025, 22:43: The Braining

As I was going to bed, I thought, huh, how it’s become so normal for me to stay in bed all day, or at least just home. The weirdest part thats impossible to describe is how you can feel entirely incapable. Unworthy, unloved, unexciting. Close to not human.

The tinnitus is back, it’s very loud and very unnerving, and sounds just like our tv at home in the 90s when it was turning off, just as a permanent ringing. I would like to feel just once again what it’s like to not be bone-tired all the time, bone-tired because it’s such a deep… Continue reading June 10, 23:58: The Tinnitus, The Sweat, The Heart

Over the weekend, the air in my stomach got so bad that I ended up throwing up multiple times. Food just coming back up over and over and over again is incredibly triggering for me. (It’s also very exhausting, a few times I felt like I was about to choke on my vomit.) Because of… Continue reading June 10, 2025, 00:01

I haven’t written in here for a few days; I even drafted this note in the bathroom while brushing my teeth. I’m very busy with work stuff and mundane adult shit like paying bills and finding workarounds for my home internet now being out for 11 days, and have been sewing a lot outside of… Continue reading June 4, 2025, 23:29

The weather has been getting warmer. I like to sit in my West-facing kitchen and looking at the late afternoon/early evening sunlight. I usually sit in a way that makes the window frames block the actual sun; sometimes I sit there with sunglasses on. It’s not a spot made for casual hangs, but I just… Continue reading May 31, 2025, 23:01

I’m so done talking. It just feels so pointless. Especially now that it takes me so much energy and willpower to squeeze the odd thought out of my dried lemon of a brain, it just doesn’t feel worth it.

I was done with work for today by 5pm. Since then, I’ve been trying to muster the [something; willpower? Energy? Wherewithal? Strength?] to do something. I really want to paint, I have so many ideas. A few times, I sat (more: Lay) down in my improvised special painting mini sofa chair. The idea of having… Continue reading May 28, 2025, 20:34

I saw my new GP today. She’s a doctor in training and took over my previous doctor’s office who had gone on in her training to pediatrics; when I last saw her I joked about sneaking in, hoping no one would notice given my height (it’s a joke because I’m tall). She didn’t laugh. Today… Continue reading May 26, 2025, 23:44