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Nights, then a wedding, then nights again

Started 1 October 2024 · 23 replies · 277 hearts · read 2.7k times

KezWigan, UK · 1 October 2024
1.8 years ago

Nights, then a wedding, then nights again — putting it in its own thread so it does not get lost in the check-in.

Practical question, and possibly a silly one.

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.

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.

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

92

BoazHaarlem, NL
#1

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

10

BrackenHexham, UK
#2

Reading the opening post, I recognised more of that than I expected to.

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.

12

KikiFacilitatorGlasgow, UK
#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.

25

SunnivaBodø, NO
#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.

15

AshSunderland, UK
#5

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.

10

PerdyShrewsbury, UK
#6

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

6

HollyBath, UK
#7

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

12me too 5

HuwWrexham, UK
#8

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.

7

TobySwindon, UK
#9

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

11

SamPortland, OR
#10

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

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

9

NorahDerry, NI
#11

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

11

OssianTromsø, NO
#12

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.

16

BrennaEnniskillen, NI
#13

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

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

9

OdileMontreal, CA
#14

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.

14me too 7

TorinBelfast, NI
#15

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

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.

10

LulaBournemouth, UK
#16

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

9

TychoLeiden, NL
#17

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

8me too 2

OrsolyaBudapest, HU
#18

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

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

MattNottingham, UK
#19

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.

10me too 5

RenataKraków, PL
#20

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

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.

8

PrueChester, UK
#21

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.

12me too 4

KikiFacilitatorGlasgow, UK
#22

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

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

30

NolwennRennes, FR
#23

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

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

11