A peer support community, independent and not for sale. Since February 2024.

GLP CircleA peer support community

Neurodivergent members

How I rebuilt a reminder system that actually works

Started 3 May 2026 · 18 replies · 114 hearts · read 2.4k times

ObieNashville, TN · 3 May 2026
3 months ago

Starting a thread on this because it keeps coming up in ones and twos: How I rebuilt a reminder system that actually works

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

I do not think anything is wrong exactly. I think something is different and I have not caught up with it yet.

What I would find useful is knowing whether anybody else has felt this way about it, because from inside my own head it seems like an unreasonable reaction.

I would like to hear from people who found this hard rather than from people who did not, which I know is an odd thing to ask for.

Thank you for reading. I am not expecting anybody to have an answer and I feel better for having written it.

38

TarqWindsor, UK
#1

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

KikiFacilitatorGlasgow, UK
#2

Facilitator note: nothing in this circle is treatment and nothing here is advice. The people who know your history are the ones to speak to.

16

AnnikaStockholm, SE
#3

Somebody here suggested writing my own protocol as a document, and I did, and it is now four pages and it runs my whole week.

5

EsmeAix-en-Provence, FR
#4

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 2

WilfStoke, UK
#5

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

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

5

TacitaRome, IT
#6

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

LeifTrondheim, NO
#7

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.

4me too 6

Bryn MNeath, UK
#8

This is the honest version, and the honest version is harder to write.

6

TobiasHamburg, DE
#9

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

5

GwilymCaernarfon, UK
#10

My routines carried me through the first year. The parts that were routine were effortless and the parts that required judgement were exhausting.

4

SoniaValencia, ES
#11

What I found was that the general advice assumes you can tell how you feel and act on it, and that assumption does not hold for me.

4

ObieNashville, TN
#12

I have nothing to add and I did not want to leave it unanswered.

5

TarqWindsor, UK
#13

Building on what Obie wrote rather than answering the original question.

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.

3

NixLeith, UK
#14

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

8me too 9

AnnikaStockholm, SE
#15

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

I set four alarms and it is not excessive, it is what makes this possible, and I have stopped feeling odd about it.

5me too 8

EsmeAix-en-Provence, FR
#16

Something I did not expect: my safe foods stopped being safe for a while, which was much more destabilising than the medical side of things.

5

KikiFacilitatorGlasgow, UK
#17

Speaking as a facilitator: I am leaving this open. Some threads should not be closed neatly and this is one of them.

12

TacitaRome, IT
#18

What Kiki 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.

7