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The alarm-based system my occupational therapist suggested

Started 17 April 2026 · 13 replies · 79 hearts · read 1.3k times

NixLeith, UK · 17 April 2026
3 months ago

The alarm-based system my occupational therapist suggested Writing it down partly to work out what I actually think.

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

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

I have written down what has actually happened, in order, because I find that more useful than my summary of it.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

I will report back either way, because I have been helped by other people's follow-ups more than by their questions.

26

Bryn MNeath, UK
#1

What helped was lowering my own expectations of the week rather than trying to hold the week together.

6me too 6

KikiFacilitatorGlasgow, UK
#2

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

11

EsmeAix-en-Provence, FR
#3

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

8

GwilymCaernarfon, UK
#4

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

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

6

TarqWindsor, UK
#5

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

6

SoniaValencia, ES
#6

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

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

5me too 2

AnnikaStockholm, SE
#7

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

5

LeifTrondheim, NO
#8

Please do not read the comments under news articles about this. I lost a fortnight to that.

4

ObieNashville, TN
#9

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

6

WilfStoke, UK
#10

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

2

TobiasHamburg, DE
#11

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

5

KikiFacilitatorGlasgow, UK
#12

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

9

Bryn MNeath, UK
#13

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

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

6