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Maintenance

What my bloods look like after two steady years

Started 26 October 2025 · 16 replies · 138 hearts · read 1.2k times

OttolineEdinburgh, UK · 26 October 2025
9 months ago

A question rather than an update: What my bloods look like after two steady years

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

What I would find most useful is not advice. It is somebody describing what their version of this stage was, and how long it went on for before it changed.

I have read the guides here, which were more useful than anything else I have found, and I still have a question about the timing that they do not cover.

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

I have said two in the title rather than "several", because "several" is what I said last time and it got me nowhere.

Not looking for a plan. Just company, and whatever anybody found at the same stage.

46

DillyNewport, UK
#1

I am two years and four months in and my journal entries have got extremely dull, which I now consider the best possible outcome.

6

TillyHereford, UK
#2

The thing that caught me out about maintenance was the absence of a finish line. I had built the whole thing around arriving somewhere and then arrived and found there was nothing to do.

10

TobiasHamburg, DE
#3

Year two is the part nobody writes about, and I think that is because it is not a story. It is Wednesdays. Very good Wednesdays, but Wednesdays.

8me too 4

BenediktFacilitatorVienna, Austria
#4

I want to name the thing this circle does when somebody says they have stopped: it treats it as ordinary. That is not automatic anywhere else and it is worth saying out loud here.

20

HarlanDenver, CO
#5

Honest answer to how long I plan to be here: I do not know, and my prescriber does not either, and we have agreed to keep looking at it rather than pretending otherwise.

5

RuthieLeicester, UK
#6

Quietly agreeing from the other side of the country.

8

SephNorwich, UK
#7

What surprised me was how much I still wanted a community in maintenance. I had assumed I would drift off once it got easy and instead I turn up more.

7

RomyVienna, AT
#8

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

The best description I have read of this stage was in this circle and it was simply: nothing happened again, and that is the news.

7me too 9

BirdieMargate, UK
#9

I have been in maintenance long enough to have had two dull years and one difficult one. The difficult one had nothing to do with the medication and everything to do with my life.

10me too 1

RufusGuildford, UK
#10

Birdie has already said most of this and I want to add the one part that was different for me.

What I did not expect was how much of maintenance is about other people forgetting. The interest fades and you are left doing the same thing quietly, which is fine, and is also lonely sometimes.

6

BlueStroud, UK
#11

I still come to this circle in maintenance because the newer members ask the questions that keep me honest about what I actually know.

9

TamsinRedruth, UK
#12

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

The practical shape of my maintenance is: one review a year, one set of bloods, one conversation about whether anything has changed. That is genuinely all of it now.

6

MintaColchester, UK
#13

Rufus said something I want to sit with for a second.

Something that helped: I decided to keep journalling weekly in maintenance even when there was nothing to say. Those entries are how I noticed a slow change I would otherwise have missed.

8

TildaCambridge, UK
#14

My honest account of maintenance is that it took about four months to stop bracing. I kept waiting for something to go wrong and nothing did, and eventually I put the brace down.

8me too 1

BenediktFacilitatorVienna, Austria
#15

Facilitator note: everything discussed here is a matter for you and whoever prescribes for you. We are company for the thinking, not a substitute for the appointment.

13

LenaMunich, DE
#16

My prescriber reduced me and we have held there for fourteen months. It has been the most uneventful fourteen months of my adult life and I am not complaining.

7