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The questions I now think everybody should ask first

Started 9 August 2024 · 22 replies · 257 hearts · read 3.9k times

SaskiaThe Hague, NL · 9 August 2024
1.9 years ago

A question rather than an update: The questions I now think everybody should ask first

Evidence question. I would rather have an honest "we do not know" than a confident answer.

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.

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

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

86

SindriReykjavík, IS
#1

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

10me too 9

SunilFacilitatorBirmingham, UK
#2

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

12

GwionBangor, UK
#3

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

12

TamsinRedruth, UK
#4

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.

7

ShadeIbadan, NG
#5

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?

10

TaviaPalermo, IT
#6

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

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

12

OsipTbilisi, GE
#7

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

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.

11

Ollie OPeterhead, UK
#8

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

13me too 1

NolCork, IE
#9

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.

14

LucasSão Paulo, BR
#10

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

BramberSteyning, UK
#11

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.

14

NylaNairobi, KE
#12

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

12

TemSouthend, UK
#13

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

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

13

PerrinNice, FR
#14

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

9

GittaBonn, DE
#15

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

13me too 1

SaskiaThe Hague, NL
#16

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

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

11

SindriReykjavík, IS
#17

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.

12

NazneenDhaka, BD
#18

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

9

GwionBangor, UK
#19

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

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

10

TamsinRedruth, UK
#20

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

7me too 6

SunilFacilitatorBirmingham, UK
#21

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

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

27

TaviaPalermo, IT
#22

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.

9