How I explained pacing to a well-meaning GP

Started 8 July 2025 · 18 replies · 192 hearts · read 2.2k times

RonanBelfast, NI · 8 July 2025

about a year ago

How I explained pacing to a well-meaning GP 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.

My pharmacist has been helpful and my question has now outgrown what she can answer at a counter, so I am asking here while I wait for an appointment.

I am not looking for reassurance particularly. I am looking for somebody to say either that they had exactly this, or that they did not, because both would help.

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

AleksLjubljana, SI

Nothing here is medical advice and with this combination I would say that more firmly than usual. The pacing has to be built with somebody who knows you.

KikiFacilitatorGlasgow, UK

Facilitator note: if any of this has landed close to home while you were reading, our support resources page lists the kinds of service worth finding.

HuwWrexham, UK

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.

14me too 1

CloverTotnes, UK

Coming back at two years to say I am considerably better, that it was very slow, and that the slowness is the part I would keep.

LilPreston, UK

What Kiki described happened to me too, in a slightly different order.

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

TobinCork, IE

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.

AshSunderland, UK

Well said, and thank you for taking the time over it.

TallisEly, UK

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

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.

BevanSwansea, UK

My clinic asked me to change one thing at a time with four weeks between changes, which felt glacial and was completely correct.

9me too 4

BridieWexford, IE

#10

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.

PatrickLimerick, IE

#11

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.

IdrisCardiff, UK

#12

Read, understood, and glad you are here.

11me too 9

HattieExeter, UK

#13

Coming back to what Patrick wrote further up, because it is the bit I keep thinking about.

The overlap in symptoms means I check anything new with my clinic rather than assuming it belongs to one story or the other.

CassWakefield, UK

#14

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

OllieCardiff, UK

#15

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

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.

LandoLeeds, UK

#16

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.

KikiFacilitatorGlasgow, UK

#17

Gently noticing that we have drifted from the symptom that was asked about to a different symptom that two of us have. Let us come back to the person who opened the thread.

OttolineEdinburgh, UK

#18

Reading Lando, I recognised more of that than I expected to.

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