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Neurodivergent members

Two diagnoses, one prescriber, no joined-up plan

Started 6 December 2024 · 19 replies · 246 hearts · read 3.5k times

NixLeith, UK · 6 December 2024
1.6 years ago

Starting a thread on this because it keeps coming up in ones and twos: Two diagnoses, one prescriber, no joined-up plan

Not asking anyone to fix this. Mostly saying it out loud somewhere it will be read kindly.

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 have told nobody in my life about this part of it, which after two years is starting to seem like the problem rather than a way of managing it.

The figure is two and I would rather lead with it than bury it three paragraphs down and have somebody ask.

That is all. Thank you for being the kind of place where this can be written down.

82

GwilymCaernarfon, UK
#1

What surprised me was how much better I felt once one specific sensory issue was resolved. It had been draining more than I realised.

13

SoniaValencia, ES
#2

Nix, answering your question directly rather than going round the houses.

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.

15

LeifTrondheim, NO
#3

Nix, answering your question directly rather than going round the houses.

The masking cost at appointments is real and I now bring somebody with me, which halves the exhaustion afterwards.

10

KikiFacilitatorGlasgow, UK
#4

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.

33

TobiasHamburg, DE
#5

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

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.

11

TarqWindsor, UK
#6

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

7

TacitaRome, IT
#7

Reading this properly rather than skimming, which is all I have to offer today.

11me too 5

AnnikaStockholm, SE
#8

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.

11

WilfStoke, UK
#9

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

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

13

ObieNashville, TN
#10

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.

7

Bryn MNeath, UK
#11

My experience is that the medical part has been simple and the logistics have been the entire challenge.

13me too 5

NixLeith, UK
#12

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

Something practical: everything lives in one box in one place and it never moves. That single rule has prevented dozens of problems.

11

GwilymCaernarfon, UK
#13

I had a very difficult fortnight when my routine broke for an unrelated reason, and rebuilding it took longer than I expected.

14

SoniaValencia, ES
#14

Read, understood, and glad you are here.

9

LeifTrondheim, NO
#15

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

10

EsmeAix-en-Provence, FR
#16

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.

15

TobiasHamburg, DE
#17

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

I would gently say that if you need things explained differently, ask. Mine were, once I asked, and the appointments improved immediately.

8

KikiFacilitatorGlasgow, UK
#18

Stepping in to say that stepping back from this circle for a while is always allowed and nobody will ask where you went.

25

TacitaRome, IT
#19

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

What I got wrong was assuming I would remember. I do not remember. Everything that works for me is written down or automated.

10