What improved and what did not

Started 20 June 2026 · 13 replies · 75 hearts · read 1.6k times

TallisEly, UK · 20 June 2026

4 weeks ago

A question rather than an update: What improved and what did not

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this.

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.

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.

Sorry to be graphic. If anybody has had this, I would rather hear it plainly than politely.

WilfStoke, UK

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

RowanInverness, UK

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.

KikiFacilitatorGlasgow, UK

Before anyone offers a remedy: what has been described in this thread is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

9me too 5

BoWhitby, UK

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

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

RonanBelfast, NI

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

RillaAberdeen, UK

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

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.

DuncanPerth, UK

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

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.

NikitaYerevan, AM

Marking that I am here, in case that counts for anything today.

5me too 9

NkemPort Harcourt, NG

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.

6me too 8

WellsChester, UK

#10

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

SaraOslo, NO

#11

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

KikiFacilitatorGlasgow, UK

#12

Speaking as a facilitator: a symptom that is frightening you is a reason to ask, regardless of whether it turns out to be anything. Nobody qualified will think you have wasted their time.

12me too 9

TacitaRome, IT

#13

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.