Category: me/cfs journal

The other day, I found out about a choir project that I’m curious about, they run large-scale choir rehearsals and performances on a project basis. I LOVE to sing, I used to take singing lessons and perform in various choirs and ensembles. (Three personal highlights: 3. I joined a senior choir in my home village… Continue reading July 02, 04:06: Sing It Out

2336 used to be our home phone extension when I grew up. My best friend’s was 7926. (Yes, that’s how you know it was a very small place and the 80’s.) I still remember my dad’s old extension at work, 9—2486. Maybe I should memorize some people’s phone numbers? This reminds me, I need to… Continue reading June 30, 2025, 23:36: Get back to me later.

I’m in so much pain. My muscles and joints are screaming.. Today, I stopped the tilidine altogether – I suspect increasingly that it’s behind the insane tiredness, but also that the intense itching all over my body (head! Fingers! Legs! Back! Head again!) is caused by it too. (For the last week or so, I… Continue reading June 30, 2025, 14:48: Where to go

Two days ago, the low-dose naltrexone side effects got so bad that I ended up throwing up in my mouth several times per hour, even more when I’d drank or eaten something within the last 6-8 hours. I would swallow it all back down and rinse out my mouth. That was also when I really… Continue reading June 28, 2025, 18:15: Barely awake

My teeth hurt, inside and out. I order six varieties of saltines and a bunch of other food for delivery (hummus! Carrots! Bread rolls!). I reheat leftovers from two nights ago for dinner, tomatoes baked with feta; once I take the sizzling food out of the microwave, my stomach turns just smelling it. I put… Continue reading June 25, 2025, 18:52

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