Telehealth that worked, and one that did not

Started 29 April 2025 · 18 replies · 180 hearts · read 3.5k times

OttiHarrogate, UK · 29 April 2025

about a year ago

A question rather than an update: Telehealth that worked, and one that did not

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.

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.

The thing that has surprised me most is how much of this is about other people rather than about me.

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

TamarPlymouth, UK

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.

HollisBath, UK

Gently disagreeing with the opening post, or rather adding the other half of it.

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

BevanSwansea, UK

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

PetraFacilitatorMelbourne, Australia

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

CallaWellington, NZ

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

CatoAntwerp, BE

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.

DotFalmouth, UK

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

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.

11me too 2

AriaAuckland, NZ

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

OrrinGlasgow, UK

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

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.

7me too 1

OttaviaBologna, IT

#10

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.

BramwellRipon, UK

#11

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

10me too 1

OzzyAdelaide, AU

#12

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.

BodhiByron Bay, AU

#13

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

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.

TavitaApia, WS

#14

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

BronwenBarry, UK

#15

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?

9me too 5

MarenBremen, DE

#16

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

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

PetraFacilitatorMelbourne, Australia

#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.

NoraDublin, IE

#18

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