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Fifteen months and I still take it on a Tuesday out of superstition

Started 8 November 2024 · 24 replies · 263 hearts · read 3.1k times

GroverPortland, ME · 8 November 2024
1.7 years ago

Fifteen months and I still take it on a Tuesday out of superstition — putting it in its own thread so it does not get lost in the check-in.

Long one, sorry. I have been chewing on this for a fortnight.

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.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

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

88

MairéadMayo, IE
#1

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

BenediktFacilitatorVienna, Austria
#2

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

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

23

GusStirling, UK
#3

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

7me too 7

FreyaReykjavík, IS
#4

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

11

BunnyWeston-super-Mare, UK
#5

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

12

StefanZurich, CH
#6

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

TildaCambridge, UK
#7

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

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.

15

LilPreston, UK
#8

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

8me too 3

OllyReading, UK
#9

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.

10me too 8

TedIpswich, UK
#10

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.

8

YannickBrussels, BE
#11

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

8me too 5

PriyaReading, UK
#12

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

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

11

TorinBelfast, NI
#13

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

11

QuinGuildford, UK
#14

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.

12

CoralieMarseille, FR
#15

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.

7

ClémenceNantes, FR
#16

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

9

GethinMerthyr Tydfil, UK
#17

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.

5

Bryn MNeath, UK
#18

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

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.

13me too 6

AbramAmsterdam, NL
#19

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

10

NerysRhyl, UK
#20

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

MattNottingham, UK
#21

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

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.

12

IzzyWatford, UK
#22

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

5

GildaTrieste, IT
#24

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

14