A peer support community, independent and not for sale. Since February 2024.

GLP CircleA peer support community

Sleep and fatigue

Fatigue plus nights plus a toddler

Started 26 August 2024 · 15 replies · 184 hearts · read 3k times

TorinBelfast, NI · 26 August 2024
1.9 years ago

A question rather than an update: Fatigue plus nights plus a toddler

Something is going on with my body and I would like to know whether it is ordinary.

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.

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.

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.

Sorry for the length. If anyone has been here, I would very much like to hear it.

61

HollisBath, UK
#1

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

13

KikiFacilitatorGlasgow, UK
#2

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.

19

KezWigan, UK
#3

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.

15

TobySwindon, UK
#4

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

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

10

PeggyRotherham, UK
#5

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

9

BassCoventry, UK
#6

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

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

7

NkemPort Harcourt, NG
#7

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

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.

11

Ollie OPeterhead, UK
#8

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

8me too 1

GethinMerthyr Tydfil, UK
#9

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

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.

9

RillaAberdeen, UK
#10

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

13

MarenBremen, DE
#11

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

15

TorrinAberdeen, UK
#12

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

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

10

RunaAarhus, DK
#13

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

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

KikiFacilitatorGlasgow, UK
#14

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

21

SunnivaBodø, NO
#15

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.

13me too 9