Slowing the schedule right down with my prescriber

Started 6 March 2026 · 18 replies · 135 hearts · read 2.1k times

TabbyMargate, UK · 6 March 2026

4 months ago

Slowing the schedule right down with my prescriber Writing it down partly to work out what I actually think.

I have avoided asking about this for six weeks out of pure embarrassment.

It is not severe. It is relentless, which turns out to be a different problem, and one I have found much harder to describe to anybody.

I have read the guide on this and it covered the ordinary version. Mine is not quite the ordinary version and that is why I am asking.

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this, because I would rather go in able to describe it properly.

Thank you for reading something this unglamorous. Any experience welcome, and timescales especially.

IdaRotterdam, NL

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.

5me too 5

KikiFacilitatorGlasgow, UK

I want to say that the honesty in this thread is exactly what makes this circle worth having, including the parts nobody enjoyed writing.

PatrickLimerick, IE

I went extremely slowly, agreed with my clinic, precisely because a crash would have cost me a fortnight rather than an afternoon.

NkosiJohannesburg, ZA

Ida — yes, and the bit that took me longest to accept was the next part.

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.

FionnualaDundalk, IE

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.

MaritGroningen, NL

The thing I had to learn was to stop before I felt like stopping. Everything I did up to the point of tiredness was borrowed from the next day.

NkemPort Harcourt, NG

Picking up Marit’s point rather than starting a new one.

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.

NolCork, IE

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

6me too 9

BibiRabat, MA

The hardest part was other people's timelines. Everything written about this assumes a body that recovers overnight and mine does not.

HattieExeter, UK

#10

Heart rate as a pacing tool was more useful to me than how I felt, because how I felt was a lagging indicator by about a day.

DillyNewport, UK

#11

Hattie said something I want to sit with for a second.

My worst weeks all followed a good week. That pattern was so consistent that I now treat a good week as a warning rather than a permission.

TeganNewport, UK

#12

Something practical: I schedule nothing for the day after, ever. That single rule has prevented more crashes than anything else I do.

OndineLausanne, CH

#13

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

PersisBristol, UK

#14

Tegan has already said most of this and I want to add the one part that was different for me.

I want to say plainly that this has gone well for me, slowly, over two years, and that slowness was the ingredient rather than an obstacle.

8me too 2

BramSheffield, UK

#15

The advice to exercise gently is complicated for us and I would say be very careful with it. Mine went badly and my clinic explained why afterwards.

4me too 1

NazneenDhaka, BD

#16

Gently disagreeing with Bram, or rather adding the other half of it.

What helped enormously was writing down what I did each day, not how I felt. Feelings lagged; activity was the leading indicator.

KikiFacilitatorGlasgow, UK

#17

Gently: nobody in this circle is being dramatic. A symptom that is taking up your whole week is worth raising, and this circle will never tell you it is too small.

AleksLjubljana, SI

#18

I found the guides here more realistic about energy than anything else I have read, because they do not assume a body with a reserve.