Category: me/cfs journal

I’ve been awake (“awake”) since 5am. I’m infinitely tired. My head hurts so bad, I’m wearing my sunglasses inside my apartment. My lymph nodes in my throat feel like burning hot potatoes. The worst though, by far, is my stomach. It hurts so much. It’s so bloated that I could barely close my widest pants… Continue reading June 25, 2025, 17:49

I’m so exhausted that I can’t sleep. My muscles and joints hurt so much that I groan into my pillow whenever I move. I take some ibuprofen in hope it’ll take the edge off. I can’t find a blanket that works, I sweat like I’m melting, but at the same time, any air that hits… Continue reading June 24, 2025, 21:54

I saw my psychiatrist this morning. In my 30 minutes in the waiting room, I overhear four phone calls that his receptionist answered, apologetically, along the lines of “I’m afraid we can’t accept new patients at this time… yes, it’s awful, I’m sorry… no, unfortunately I don’t know of another practice that does.” She sounds… Continue reading June 24, 2025, 20:54

The violent burps and air in my stomach are back. Over the weekend, I had to throw up a few times over it. Even if I try and cast the triggering aspects aside, it’s still exhausting, so exhausting. And disgusting. The only thing I found so far the helps a bit is pausing the off… Continue reading June 23, 2025, 23:09

I spent 5 days on a business trip to another country (<2 hour flight) and I knew it would wreck me and it did and it was way less worth it than I thought it would be. I’m on day 5 of PEM and have to be back to (my <8 hours per week) work… Continue reading June 23, 2025, 00:56am

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