Am I supposed to feel guilty about this

Started 20 August 2024 · 23 replies · 248 hearts · read 5.1k times

TychoLeiden, NL · 20 August 2024

1.9 years ago

Starting a thread on this because it keeps coming up in ones and twos: Am I supposed to feel guilty about this

I have been reading here for a few weeks and have not posted, so this is me posting.

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

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

Not looking for a plan. Just company and whatever anyone has found.

SerenLlandudno, 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.

CarlMiddlesbrough, UK

Building on what the opening post wrote rather than answering the original question.

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

EsiFacilitatorToronto, Canada

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.

SaskiaThe Hague, NL

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

13me too 4

TorinBelfast, NI

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

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.

CormacWaterford, IE

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.

BodhiByron Bay, AU

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

11me too 1

DelphiThessaloniki, GR

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

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.

OsipTbilisi, GE

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

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

15me too 4

TasnimBradford, UK

#10

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.

PerduMontpellier, FR

#11

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

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

11me too 3

TommieEly, UK

#12

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

SephNorwich, UK

#13

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

TychoLeiden, NL

#14

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

SerenLlandudno, UK

#15

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

CarlMiddlesbrough, UK

#16

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.

OllieCardiff, UK

#17

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

SaskiaThe Hague, NL

#18

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

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.

12me too 7

TorinBelfast, NI

#19

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.

CormacWaterford, IE

#20

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

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?

BodhiByron Bay, AU

#21

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

EsiFacilitatorToronto, Canada

#22

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

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.

OsipTbilisi, GE

#23

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