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When do you tell people, if ever

Started 17 February 2025 · 17 replies · 172 hearts · read 1.5k times

TommieEly, UK · 17 February 2025
1.4 years ago

When do you tell people, if ever Writing it down partly to work out what I actually think.

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.

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

57

OsipTbilisi, GE
#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

EsiFacilitatorToronto, Canada
#2

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.

20

SephNorwich, UK
#3

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

7me too 9

CormacWaterford, IE
#4

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

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

11

TasnimBradford, 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.

11

SerenLlandudno, UK
#6

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

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.

9

BodhiByron Bay, AU
#7

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.

9

TychoLeiden, NL
#8

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

8me too 5

DelphiThessaloniki, GR
#9

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.

11

PerduMontpellier, FR
#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.

9me too 4

OllieCardiff, UK
#11

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?

10

CarlMiddlesbrough, UK
#12

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

6

SaskiaThe Hague, NL
#13

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

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

8

TommieEly, UK
#14

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

4me too 4

OsipTbilisi, GE
#15

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.

9

EsiFacilitatorToronto, Canada
#16

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

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.

23

SephNorwich, UK
#17

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

8me too 9