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What was different the second time

Started 31 January 2026 · 17 replies · 135 hearts · read 1.2k times

NerysRhyl, UK · 31 January 2026
6 months ago

What was different the second time Writing it down partly to work out what I actually think.

Writing this partly to ask and partly because writing it down usually tells me what I think.

The thing that has surprised me most is how much of this is about other people rather than about me.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

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.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

45

BobbieRochdale, UK
#1

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.

8

NikolaiSofia, BG
#2

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

7

BenediktFacilitatorVienna, Austria
#3

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.

20me too 8

MableBolton, UK
#4

the reply above said something I want to sit with for a second.

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

5

OttilieCheshire, UK
#5

Building on what the reply above wrote rather than answering the original question.

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.

4

AurelBucharest, RO
#6

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

6

ZoraSarajevo, BA
#7

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

5

Gwen DAberystwyth, UK
#8

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

9me too 4

NerysRhyl, UK
#9

What the reply above described happened to me too, in a slightly different order.

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

9me too 5

BobbieRochdale, UK
#10

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

3

NikolaiSofia, BG
#11

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

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

7

InêsPorto, PT
#12

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

5

MableBolton, UK
#13

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

10me too 3

OttilieCheshire, UK
#14

Yes to the burping. It is real, it is unbeautiful, and it does settle.

6

AurelBucharest, RO
#15

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

8

Gwen DAberystwyth, UK
#17

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

6