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Texture changes nobody warned me about

Started 22 May 2026 · 13 replies · 93 hearts · read 1.9k times

NixLeith, UK · 22 May 2026
2 months ago

Starting a thread on this because it keeps coming up in ones and twos: Texture changes nobody warned me about

This is a difficult one to write and I have deleted it twice.

This is difficult to write and I have deleted it twice. I am posting it now mostly because leaving it in drafts has not made it any easier to carry.

I have been sitting on this for a month and it has not got smaller, which I gather is how these things usually go.

Thanks. Saying it here first has made the idea of saying it to somebody else considerably less impossible.

31

EsmeAix-en-Provence, FR
#1

I found the unpredictability harder than any individual difficulty. Knowing what to expect is worth more to me than the thing being easy.

8me too 4

KikiFacilitatorGlasgow, UK
#2

Facilitator note: the agreements for this circle are stricter than the sitewide ones and they are stricter on purpose. They are linked from the circle landing page.

9

TobiasHamburg, DE
#3

No wisdom, just: I am sorry. That sounds genuinely hard.

9

SoniaValencia, ES
#4

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

My notes are the only reason I can answer questions about myself. Without them I would have nothing to bring to a review at all.

6

GwilymCaernarfon, UK
#5

Coming back two years on to say the system held, that it is elaborate and it works, and that I no longer apologise for how elaborate it is.

7

AnnikaStockholm, SE
#6

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

Interoception is the whole thing for me. I have never reliably known when I was hungry, and a change in appetite signalling was always going to be complicated.

3me too 8

LeifTrondheim, NO
#7

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

The thing I would flag is that a change in routine for any reason has knock-on effects for weeks. Plan for that rather than being surprised.

6

TarqWindsor, UK
#8

Nothing here is medical advice, and interactions with other medication are a real question worth taking to a pharmacist specifically.

7

WilfStoke, UK
#9

Sensory change was real. Textures I had eaten my whole life became impossible for about two months and nobody had warned me.

2

TacitaRome, IT
#10

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

Executive function was where this got hard. Not the doing, the initiating, and building a rigid structure around it was the only thing that worked.

8

Bryn MNeath, UK
#11

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

The hardest part was that advice kept coming in the form of listening to my body, and my body does not speak clearly enough for that.

8

KikiFacilitatorGlasgow, UK
#12

Noting for anybody reading later: if the person who opened this has come back, their own words are worth more than any reply to them. It is easy to read the top of a page and stop there.

13me too 9

EsmeAix-en-Provence, FR
#13

I found appointments difficult for reasons unrelated to the subject, and writing everything down beforehand solved most of it.

7