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Birthday cake and not wanting to make a thing of it

Started 5 August 2024 · 21 replies · 241 hearts · read 3.6k times

ZenBristol, UK · 5 August 2024
2 years ago

Something I have been sitting with: Birthday cake and not wanting to make a thing of it Not looking for advice so much as other people's experience.

Anyone else navigating this? I feel as though every piece of advice I read was written for someone with a completely different week.

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 read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

80

MarkCoventry, UK
#1

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

8

WrenFacilitatorLeeds, UK
#2

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

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.

25me too 9

NanNeath, UK
#3

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.

6

OskarWarsaw, PL
#4

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

10

BramwellNottingham, UK
#5

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.

14

SalmaManchester, UK
#6

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

9

BobbieRochdale, UK
#7

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

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

12

SindriReykjavík, IS
#8

I did exactly the same and felt terrible about it. You have not done anything wrong.

10

LuPreston, UK
#9

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

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.

11

OrphBath, UK
#10

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

9

IslaOban, UK
#11

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.

5

PoppyLeeds, UK
#12

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

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

13

HannahSheffield, UK
#13

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?

15

NualaArmagh, NI
#14

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

11me too 5

PipBristol, UK
#15

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

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

13

TasnimBradford, UK
#16

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

8

CarlMiddlesbrough, UK
#17

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.

12me too 1

GillyWorcester, UK
#18

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

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.

10

NemoneLewes, UK
#19

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

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

13

WrenFacilitatorLeeds, UK
#20

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.

16

ZenBristol, UK
#21

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

11me too 4