How members read the vendor reference pages

Started 8 October 2024 · 20 replies · 217 hearts · read 3.5k times

OsipTbilisi, GE · 8 October 2024

1.8 years ago

How members read the vendor reference pages Writing it down partly to work out what I actually think.

Putting this here because I do not want to be sold anything, I want to know what is actually established.

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.

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 have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

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

TaviaPalermo, IT

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.

SaskiaThe Hague, NL

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.

SunilFacilitatorBirmingham, UK

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.

NolCork, IE

the opening post said something I want to sit with for a second.

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

11me too 6

GittaBonn, DE

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

12me too 2

ShadeIbadan, NG

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?

LucasSão Paulo, BR

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

TamsinRedruth, UK

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

NazneenDhaka, BD

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.

PerrinNice, FR

#10

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

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

6me too 7

GwionBangor, UK

#11

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

14me too 5

SindriReykjavík, IS

#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.

BramberSteyning, UK

#13

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

Ollie OPeterhead, UK

#14

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.

NylaNairobi, KE

#15

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

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

OsipTbilisi, GE

#16

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

TaviaPalermo, IT

#17

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.

SaskiaThe Hague, NL

#18

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.

13me too 6

SunilFacilitatorBirmingham, UK

#19

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

NolCork, IE

#20

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.