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Recovery-aware circle

What being challenged in this circle was like from the inside

Started 14 September 2024 · 24 replies · 263 hearts · read 4.3k times

RenataKraków, PL · 14 September 2024
1.8 years ago

Something I have been sitting with: What being challenged in this circle was like from the inside Not looking for advice so much as other people's experience.

Not asking anyone to fix this. Mostly saying it out loud somewhere it will be read kindly.

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.

Thanks all. Genuinely.

88

QuinGuildford, UK
#1

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.

6

JonahFacilitatorCork, Ireland
#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.

23

GrizelKirkcaldy, UK
#3

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.

7me too 2

OrlaithDonegal, IE
#4

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

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

11

OsricSalisbury, UK
#5

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

12

RunaAarhus, DK
#6

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

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

NanNeath, UK
#7

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

15

OllieCardiff, UK
#8

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

8me too 7

BroganCumbernauld, UK
#9

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.

10me too 3

PádraigGalway, IE
#10

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

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

8

SableCape Town, ZA
#11

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.

7

SadieSalford, UK
#12

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.

15

BramwellNottingham, UK
#13

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

10

RenataKraków, PL
#14

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.

13me too 4

QuinGuildford, UK
#15

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

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.

8

GwionBangor, UK
#16

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

10

GrizelKirkcaldy, UK
#17

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

6me too 9

OrlaithDonegal, IE
#18

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

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

12

OsricSalisbury, UK
#19

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

14

RunaAarhus, DK
#20

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.

7me too 7

NanNeath, UK
#21

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

12

OllieCardiff, UK
#22

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

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

5

JonahFacilitatorCork, Ireland
#23

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

If any of this has landed close to home for you while reading, our support resources page lists the kinds of services worth finding. No obligation and no drama.

20me too 5

PádraigGalway, IE
#24

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

14