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Ten years recovered and the caution I still keep

Started 3 February 2025 · 21 replies · 231 hearts · read 4.1k times

GrizelKirkcaldy, UK · 3 February 2025
1.5 years ago

Starting a thread on this because it keeps coming up in ones and twos: Ten years recovered and the caution I still keep

Not asking anyone to fix this. Mostly saying it out loud somewhere it will be read kindly.

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.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

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

77

NanNeath, UK
#1

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

11

BroganCumbernauld, UK
#2

Reading the opening post, I recognised more of that than I expected to.

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.

10

JonahFacilitatorCork, Ireland
#3

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

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

24

QuinGuildford, UK
#4

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.

8

PádraigGalway, IE
#5

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.

14

RenataKraków, PL
#6

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

11

RunaAarhus, DK
#7

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?

5me too 4

OsricSalisbury, UK
#8

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

7

BramwellNottingham, UK
#9

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

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.

9

SadieSalford, UK
#10

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

11

GwionBangor, UK
#11

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

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.

13me too 2

OrlaithDonegal, IE
#12

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.

9

OllieCardiff, UK
#13

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.

12

GrizelKirkcaldy, UK
#14

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

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

10

NanNeath, UK
#15

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.

8

BroganCumbernauld, UK
#16

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.

9

SableCape Town, ZA
#17

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

7

QuinGuildford, UK
#18

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

10

PádraigGalway, IE
#19

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

JonahFacilitatorCork, Ireland
#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.

24

RunaAarhus, DK
#21

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

11