A peer support community, independent and not for sale. Since February 2024.

GLP CircleA peer support community

UK and Ireland

What my health board actually offers, in plain terms

Started 21 December 2024 · 22 replies · 231 hearts · read 4.8k times

TabbyMargate, UK · 21 December 2024
1.6 years ago

Starting a thread on this because it keeps coming up in ones and twos: What my health board actually offers, in plain terms

Anyone else here in my part of the world? I would like to compare notes.

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

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

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

77

BramleyBath, 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.

14

GwythFishguard, UK
#2

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.

7

AdaFacilitatorManchester, UK
#3

If any of this has landed close to home for you while reading, our support resources page lists the kinds of services worth finding. No obligation and no drama.

23me too 5

KateBelfast, NI
#4

the opening post 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.

9

MorayElgin, 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.

13

DillyNewport, UK
#6

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.

8

BevanSwansea, UK
#7

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

11

NellFrome, UK
#8

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

9me too 1

BarnabyWinchester, UK
#9

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

6me too 6

JontyOxford, UK
#10

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

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

11

TobySwindon, UK
#11

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

13

TamzinPoole, UK
#12

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.

8

PatrickLimerick, IE
#13

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

10

BramSheffield, UK
#14

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.

5

SolomonManchester, UK
#15

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

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

12

BirdieMargate, UK
#16

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.

14me too 6

NkosiJohannesburg, ZA
#17

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.

10

BrammyBelfast, NI
#18

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

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.

12

GwionBangor, UK
#19

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

GwennoPwllheli, UK
#20

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

8

AdaFacilitatorManchester, UK
#21

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

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.

14me too 7

TillyHereford, UK
#22

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

9