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When the noise goes quiet

Grief at losing something I hated

Started 25 December 2024 · 17 replies · 177 hearts · read 1.7k times

TinukeManchester, UK · 25 December 2024
1.6 years ago

Grief at losing something I hated Writing it down partly to work out what I actually think.

I have been sitting on this for a month.

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.

Sorry for the length. If anyone has been here, I would very much like to hear it.

59

BramGhent, BE
#1

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

10me too 7

NualaArmagh, NI
#2

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.

9

JonahFacilitatorCork, Ireland
#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.

24

SorayaTehran, IR
#4

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.

7

OdileMontreal, CA
#5

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.

13

HannahSheffield, UK
#6

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

10me too 2

CallaWellington, NZ
#7

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

4

LenaMunich, DE
#8

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

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.

11

BronteHaworth, UK
#9

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.

9

SaraOslo, NO
#10

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

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.

11

TheaBergen, NO
#11

Reading the reply above, I recognised more of that than I expected to.

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

RinManchester, UK
#12

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.

13

OsgarKillarney, IE
#13

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

10

LuPreston, UK
#14

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

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

9me too 1

SalmaManchester, 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?

7

JonahFacilitatorCork, Ireland
#16

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

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.

11

TildaCambridge, UK
#17

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

11me too 5