What I wish someone had told me on day one

Started 22 January 2025 · 19 replies · 201 hearts · read 2.5k times

OllieCardiff, UK · 22 January 2025

1.5 years ago

What I wish someone had told me on day one Writing it down partly to work out what I actually think.

Writing this partly to ask and partly because writing it down usually tells me what I think.

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.

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.

The thing that has surprised me most is how much of this is about other people rather than about me.

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

SerenLlandudno, UK

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

EsiFacilitatorToronto, Canada

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.

CarlMiddlesbrough, UK

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.

TychoLeiden, NL

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.

DelphiThessaloniki, GR

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.

CormacWaterford, IE

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

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.

TorinBelfast, NI

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

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

OsipTbilisi, GE

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

9me too 3

TommieEly, UK

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.

TasnimBradford, UK

#10

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

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

12me too 4

PerduMontpellier, FR

#11

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

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

12me too 5

BodhiByron Bay, AU

#12

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

SaskiaThe Hague, NL

#13

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

OllieCardiff, UK

#14

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.

SerenLlandudno, UK

#15

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

SephNorwich, UK

#16

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

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.

9me too 8

CarlMiddlesbrough, UK

#17

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.

EsiFacilitatorToronto, Canada

#18

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.

DelphiThessaloniki, GR

#19

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.