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When the noise goes quiet

Thirty years of negotiation, and then silence

Started 1 January 2025 · 18 replies · 185 hearts · read 3.8k times

RinManchester, UK · 1 January 2025
1.5 years ago

A question rather than an update: Thirty years of negotiation, and then silence

This is a difficult one to write and I have deleted it twice.

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.

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.

Thanks all. Genuinely.

62

MattNottingham, UK
#1

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

8

BronteHaworth, UK
#2

What the opening post 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.

10me too 7

JonahFacilitatorCork, Ireland
#3

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

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.

13

BodhiByron Bay, AU
#4

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.

8

WinnieCarlisle, UK
#5

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

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.

8

MaryamBirmingham, UK
#6

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

11

SaraOslo, NO
#7

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

11

AnnaAthens, GR
#8

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.

12

SorayaTehran, IR
#9

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.

10

TinukeManchester, UK
#10

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

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.

6

OllyReading, UK
#11

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.

12me too 5

ClemmieNorwich, UK
#12

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

11

BronwenBarry, UK
#13

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

11

AmmiKarachi, PK
#14

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

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.

9

TansyLudlow, UK
#15

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

7

OsgarKillarney, IE
#16

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.

12

JonahFacilitatorCork, Ireland
#17

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.

14

TavishIsle of Skye, UK
#18

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

12