Batch cooking on good days for bad days

Started 11 February 2025 · 20 replies · 242 hearts · read 5.1k times

WinnieCarlisle, UK · 11 February 2025

1.4 years ago

Batch cooking on good days for bad days — putting it in its own thread so it does not get lost in the check-in.

I have avoided asking about this for six weeks out of pure embarrassment.

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.

I have written down what has actually happened, in order, because I find that more useful than my summary of it.

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.

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

NazneenDhaka, BD

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.

PeronelCanterbury, UK

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

CloverTotnes, UK

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

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

KikiFacilitatorGlasgow, UK

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.

NkemPort Harcourt, NG

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

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

BoazHaarlem, NL

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.

TallisEly, UK

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.

13me too 8

RonanBelfast, NI

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

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

NellFrome, UK

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

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.

MapleToronto, CA

#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.

FitzLimerick, IE

#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?

10me too 5

MaritGroningen, NL

#12

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

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

PersisBristol, UK

#13

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

HuwWrexham, 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.

SaraOslo, NO

#15

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

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.

BunnyWeston-super-Mare, UK

#16

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.

PatrickLimerick, IE

#17

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

TommieEly, UK

#18

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.

10me too 6

KikiFacilitatorGlasgow, UK

#19

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

RillaAberdeen, UK

#20

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.