Nobody warned me about being tired

Started 19 October 2024 · 19 replies · 214 hearts · read 3.5k times

DelphiThessaloniki, GR · 19 October 2024

1.8 years ago

A question rather than an update: Nobody warned me about being tired

I have been reading here for a few weeks and have not posted, so this is me posting.

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

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

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

TychoLeiden, NL

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

OllieCardiff, 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.

11me too 8

EsiFacilitatorToronto, Canada

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

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

TommieEly, UK

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.

SerenLlandudno, UK

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

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

SaskiaThe Hague, NL

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

BodhiByron Bay, AU

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

13me too 6

OsipTbilisi, GE

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

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.

CarlMiddlesbrough, UK

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.

SephNorwich, UK

#10

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

PerduMontpellier, FR

#11

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

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

CormacWaterford, IE

#12

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.

TorinBelfast, NI

#13

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

DelphiThessaloniki, GR

#14

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

TychoLeiden, NL

#15

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

OllieCardiff, UK

#16

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

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

TasnimBradford, UK

#17

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

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.

12me too 1

EsiFacilitatorToronto, Canada

#18

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.

SerenLlandudno, UK

#19

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.