A peer support community, independent and not for sale. Since February 2024.
Two health boards and a postcode boundary Writing it down partly to work out what I actually think.
Money post. No apologies, this circle is for it.
I have written down what has actually happened, in order, because I find that more useful than my summary of it.
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.
75
Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.
10me too 9
Building on what the opening post wrote rather than answering the original question.
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.
11
Please do not read the comments under news articles about this. I lost a fortnight to that.
7
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.
21
Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.
10
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
the reply above said something I want to sit with for a second.
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.
7
Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.
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
I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.
11
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.
15
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.
12me too 8
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?
16
the reply above said something I want to sit with for a second.
My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.
11
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.
8me too 3
Gently disagreeing with the reply above, or rather adding the other half of it.
Yes to the burping. It is real, it is unbeautiful, and it does settle.
13
Building on what the reply above wrote rather than answering the original question.
It got worse before it got better for me, which I wish someone had said. About ten days of worse.
10
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.
22
Reading the reply above, I recognised more of that than I expected to.
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.
7