From dread to ritual over about five months

Started 20 June 2024 · 24 replies · 272 hearts · read 2.9k times

NadirCasablanca, MA · 20 June 2024

2.1 years ago

From dread to ritual over about five months — putting it in its own thread so it does not get lost in the check-in.

I have avoided asking about this for six weeks out of pure embarrassment.

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.

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

DelythBala, UK

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

EsiFacilitatorToronto, Canada

the opening post said something I want to sit with for a second.

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.

IvesPenzance, UK

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.

GwynforLlanidloes, UK

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.

PerrineStrasbourg, FR

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

TabbyMargate, UK

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.

Ozzy GWalsall, UK

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

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

8me too 2

GaelanInverurie, UK

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?

OmarAmman, JO

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.

OttaviaBologna, IT

#10

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

BrodyDunfermline, UK

#11

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.

11me too 8

OrlaithDonegal, IE

#12

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

GavinDundee, UK

#13

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

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

TedIpswich, UK

#14

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.

BrackAlnwick, UK

#15

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

NylaNairobi, KE

#16

Reading the reply above, I recognised more of that than I expected to.

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.

SableCape Town, ZA

#17

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

CatoAntwerp, BE

#18

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

16me too 9

SaraOslo, NO

#19

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

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

IslaOban, UK

#20

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.

NadirCasablanca, MA

#21

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

DelythBala, UK

#22

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

12me too 6

EsiFacilitatorToronto, Canada

#23

If any of this has landed close to home for you while reading, our support resources page lists the kinds of services worth finding. No obligation and no drama.

IvesPenzance, UK

#24

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

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.