Category: me/cfs journal

My ability to entirely and intensely delude myself is staggering. In the end, it took me a good two weeks to fully realize that my significantly worsened physical state had been caused by the oxycodone. Already on the first day I didn’t take it anymore, I felt a lot better. What happened, you ask? —… Continue reading July 24, 23:31: My ability to delude myself

I think I’m indeed allergic to my latest medication experiment (oxycodone, for the RLS). Today, I increased the dosage as discussed with my doc; ended up nauseous all morning and ultimately throwing up, continued having intense itching all over. I’m still hoping it’s not that, because it seems to be helping. I hit my nails… Continue reading July 16, 2025, 00:54: Itching

I got excited earlier when I realized that I get to increase my RLS medication again tomorrow. My legs feel like they’re filled with led, I find it exhausting to walk and when I have to move around at home, I shuffle where I need to go. I went to the nail salon this morning… Continue reading July 14, 2025, 23:35: Excitement

One day I’ll remember that my symptoms shape-shift, and that whatever feels new and like something with an answer to it, is most likely a new shape of the same old bullshit. I’ve been having horrendous leg pain for the last weeks. It got so bad that towards the end the end of the day,… Continue reading July 12, 22:43: Shape-shifting (1)

Today was a rough day again. I slept eight hours last night, barely dragged myself out of bed, then slept another two hours. I got my nails fixed for an hour, slept another two hours and rested for two more until my only work meeting for the day. My client, who has some chronic health… Continue reading July 28, 2025, 17:49: “Lucky”

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