Eating enough on a bad week when cooking is impossible

Started 14 May 2025 · 20 replies · 214 hearts · read 3.2k times

GroverPortland, ME · 14 May 2025

about a year ago

Starting a thread on this because it keeps coming up in ones and twos: Eating enough on a bad week when cooking is impossible

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

I have had a fortnight of this and then three good days and then another fortnight, and the pattern is the bit I would most like to understand.

I want to describe this accurately rather than politely, because the polite version is what I said at my last appointment and it got me nowhere.

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.

Not after remedies particularly. Mostly I want to know whether this is ordinary and how long it went on for.

TamGlasgow, UK

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

KikiFacilitatorGlasgow, UK

A note for anybody arriving at this thread mid-way: if what you are experiencing is frightening rather than merely uncomfortable, that is a reason to ask somebody qualified this week rather than to read further.

15me too 7

BrunoMilan, IT

Not a solution, just company.

SolomonManchester, UK

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

TychoLeiden, NL

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.

HuwWrexham, UK

The thing I underestimated was cognitive fatigue as distinct from physical. A demanding hour of thinking cost me the same as a walk.

BunnyWeston-super-Mare, UK

Huw, thank you for that. It gives me somewhere to start from.

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

HarriSwansea, UK

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

HarlanDenver, CO

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

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.

TemSouthend, UK

#10

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.

AshSunderland, UK

#11

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

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.

HollyBath, UK

#12

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

MaisieScarborough, UK

#13

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.

TeganNewport, UK

#14

Recognition rather than advice, if that is any use at all.

5me too 2

WystanCheltenham, UK

#15

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.

FitzLimerick, IE

#16

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.

NorahDerry, NI

#17

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

Rest that is actually rest turned out to be a skill I did not have. Lying down with my phone was not rest and it took me a year to notice.

9me too 7

MaritGroningen, NL

#18

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

KikiFacilitatorGlasgow, UK

#19

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.

CassWakefield, UK

#20

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.