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Why the units did not carry across

Started 21 January 2025 · 21 replies · 239 hearts · read 3.8k times

MaeveSligo, IE · 21 January 2025
1.5 years ago

Starting a thread on this because it keeps coming up in ones and twos: Why the units did not carry across

This is the boring administrative kind of problem, which I gather is the kind that actually gets solved.

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.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

80

SaskiaThe Hague, NL
#1

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

6me too 9

OrlaithDonegal, IE
#2

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.

13

PetraFacilitatorMelbourne, Australia
#3

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.

17

NúriaBarcelona, ES
#4

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.

12

SunnivaBodø, NO
#5

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

11

AurelBucharest, RO
#6

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

14me too 9

RuaridhFort William, UK
#7

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

9

XanBerlin, DE
#8

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

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.

11

BoazHaarlem, NL
#9

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.

13

MaeveSligo, IE
#10

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.

9

SaskiaThe Hague, NL
#11

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.

10

OrlaithDonegal, IE
#12

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

7

DevManchester, UK
#13

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

13me too 4

NúriaBarcelona, ES
#14

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

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.

6

SunnivaBodø, NO
#15

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

AurelBucharest, RO
#16

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.

9me too 8

RuaridhFort William, UK
#17

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

XanBerlin, DE
#18

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

9

BoazHaarlem, NL
#19

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.

10

PetraFacilitatorMelbourne, Australia
#20

Gently disagreeing with the reply above, or rather adding the other half of it.

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

28me too 2

SaskiaThe Hague, NL
#21

Gently disagreeing with the reply above, or rather adding the other half of it.

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

9