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From a vial and syringe to a pen

Started 29 May 2025 · 13 replies · 145 hearts · read 2.5k times

MaeveSligo, IE · 29 May 2025
about a year ago

From a vial and syringe to a pen Writing it down partly to work out what I actually think.

This is the boring administrative kind of problem, which I gather is the kind that actually gets solved.

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.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

48

AurelBucharest, RO
#1

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.

11

BoazHaarlem, NL
#2

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.

7

DevManchester, UK
#3

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

13me too 9

PetraFacilitatorMelbourne, Australia
#4

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

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

16

SunnivaBodø, NO
#5

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?

11

RuaridhFort William, UK
#6

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

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

8

XanBerlin, DE
#7

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

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.

7

SaskiaThe Hague, NL
#8

Yes to the burping. It is real, it is unbeautiful, and it does settle.

9me too 4

NúriaBarcelona, ES
#9

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

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

7

MaeveSligo, IE
#10

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.

14me too 9

AurelBucharest, RO
#11

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

9

PetraFacilitatorMelbourne, Australia
#12

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

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.

25

DevManchester, UK
#13

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.

8me too 1