Hey y'all what's up

I have something to share

I'm a fucking person again

. . .

Few people understand how bad ME/CFS is. My case, which has prevented me from working or living a normal life, has been *relatively mild* for most of the past 5 years. It can get so much worse.

In the last few months, I experienced the worst health of my life, by far. I descended from mild/moderate ME/CFS to moderate/severe ME/CFS. I would crash for days after a 5 minute conversation with a friend. I couldn't kill much time watching TV because any form of prolonged focus could wreck me. I started getting incredibly sensitive to light and sound. One night, the sound of Sam gently getting ready for bed was so stressful that I cried.

I knew that if I needed to get healthcare for any urgent, unrelated problem, I'd be fucked. If I fell ill with anything, I would not be ok.

I felt like I was looking down the barrel of a gun. Things kept getting worse. I was spending most of my time in bed. I held onto gratitude that I was still able to get up to use the bathroom, but I looked into buying a bedpan, trying to be prepared for when I'd need one. And I told myself: at least I can still eat solid food.

There was a chance I'd become "severe" or "very severe" — very severe ME/CFS is extremely bad.

In September 2024, before my descent, I spent 41 hours socializing. That was my baseline. In January 2025, I socialized for 81.5 minutes. 3% of my pre-decline capacity.

. . .

On February 9th, I had a friend over. I felt strong. I felt like things were really turning around. I thought: I bet I could talk for *40 minutes* today.

We talked for 214 minutes.

I thought: Ok. Wow. Even if I feel horrible for days, it is amazing that I could talk for this long at all.

I settled into resting by myself — sometimes the crash doesn't kick in until I settle down.

And then
an hour went by
and I still
felt
fine

Do you know what that's like?

. . .

My step count data can be used to make a nice chart showing my energy level over time. You can see that things got worse, and worse, and worse — and then better.

My improvement does not seem random. My body did not fix itself just as mysteriously as it broke. My improvement seems to be a result of my actions.

I hesitate to explain those actions here, because what helps one ME/CFS patient rarely helps many others. And what I did was complicated. (A mix of many pills.)

But I'm telling you this, because this is good. When you know why you're feeling better, you have a much better shot at staying healthy.

I'm still very limited. I've *been* very limited, for years, and I'm not even back up to the health I had in October 2024. But I'm no longer so scared that I'm about to be stuck in a state of living death. (And that's all that matters, right?)

Optimistically, I'm hoping I can use what I've learned to recover from ME/CFS more fully. I think I have a shot.