Energy budgeting with a symptom I cannot predict

I had to renegotiate work, which was frightening and turned out to be the single most protective thing I did.

Mine improved to a genuinely better place over eighteen months and I would not have believed that in month two.

What I would say to somebody starting is that going slower than the schedule is not a compromise here. It is the sensible plan.

I keep a very simple three-colour note of each day and the pattern across a month is visible in a way that no single day ever is.

Somebody in this circle described a good day as a loan rather than a gift, and I have quoted that to about nine people since.

I had to accept a smaller week. Not permanently, as it turns out, but for about a year, and the accepting was harder than the smaller week.

My appetite changes and my energy changes interacted in ways that took months to untangle, and eating consistently was what stabilised both.

What I could not tell apart was medication fatigue and my usual fatigue. My notes eventually showed a pattern but it took four months to see.

My clinic was cautious and involved, which I would recommend asking for. Doing this without them in the loop would have been much harder.

I had one crash early on that I traced to trying to do a normal week during a step up. I have never made that mistake twice.

Temperature regulation was a thing for me that nobody had mentioned. Warmth helped considerably and it took me a year to work that out.

Pacing was the whole thing for me. Everything I have managed in the last two years came from doing less than I could on a good day.

My energy budget is a real budget with a real ceiling, and treating it that way rather than as a moral matter changed how I plan every week.

What worked was splitting everything into halves. Half a shop, half a walk, half an evening, and stopping at half even when it felt unnecessary.