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A question rather than an update: Prairie winters and posting medication
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.
The thing that has surprised me most is how much of this is about other people rather than about me.
Sorry for the length. If anyone has been here, I would very much like to hear it.
81
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?
8
What the opening post described happened to me too, in a slightly different order.
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.
21me too 6
No advice, just recognition. That sounds exhausting and I am sorry you are in it.
6
I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.
9
the reply above — yes, and the bit that took me longest to accept was the next part.
It got worse before it got better for me, which I wish someone had said. About ten days of worse.
9me too 3
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.
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.
7
Reading the reply above, I recognised more of that than I expected to.
Yes to the burping. It is real, it is unbeautiful, and it does settle.
13
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.
9
Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.
14
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.
10
Please do not read the comments under news articles about this. I lost a fortnight to that.
10
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.
7me too 4
Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.
13
Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.
11
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.
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.
8
Gently disagreeing with the reply above, or rather adding the other half of 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.
6
My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.
13me too 7
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.
11
Gently: you have apologised three times in a post where you have done nothing that requires an apology.
25
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.
8me too 9