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Two conditions, two teams, one very tired patient

Started 19 September 2024 · 24 replies · 297 hearts · read 2.6k times

BettinaGraz, AT · 19 September 2024
1.8 years ago

Two conditions, two teams, one very tired patient — 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.

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

I will report back either way, because I have been helped by other people's follow-ups more than by their questions.

99

BryherIsles of Scilly, UK
#1

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.

11

TomásFacilitatorLisbon, Portugal
#2

the opening post said something I want to sit with for a second.

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.

15

AleksLjubljana, SI
#3

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

13

BibiRabat, MA
#4

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.

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GethinMerthyr Tydfil, UK
#5

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

10

NoraDublin, IE
#6

I did exactly the same and felt terrible about it. You have not done anything wrong.

15

ÖzlemIzmir, TR
#7

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

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.

8me too 4

NyalaAddis Ababa, ET
#8

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.

13

BramberSteyning, UK
#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.

16

BrackenHexham, UK
#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.

8

EphraimBrooklyn, NY
#11

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

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BettinaGraz, AT
#12

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.

8

BryherIsles of Scilly, UK
#13

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

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

13

PosyChichester, UK
#14

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

9me too 8

AleksLjubljana, SI
#15

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

12

BibiRabat, MA
#16

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

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

14

GethinMerthyr Tydfil, UK
#17

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 4

NoraDublin, IE
#18

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

12

ÖzlemIzmir, TR
#19

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

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

9

NyalaAddis Ababa, ET
#20

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

12me too 2

BramberSteyning, UK
#21

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.

12

BrackenHexham, UK
#22

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

9

BettinaGraz, AT
#24

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

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.

12