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Sleep and fatigue

The tiredness has a shape and I mapped it

Started 5 October 2024 · 16 replies · 182 hearts · read 3.7k times

NorahDerry, NI · 5 October 2024
1.8 years ago

Something I have been sitting with: The tiredness has a shape and I mapped it Not looking for advice so much as other people's experience.

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this.

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.

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.

Thanks all. Genuinely.

61

KezWigan, UK
#1

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

8

HuwWrexham, UK
#2

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

15me too 5

NettieBarrow, UK
#3

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

10

KikiFacilitatorGlasgow, UK
#4

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

26

TychoLeiden, NL
#5

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

11

TorrinAberdeen, UK
#6

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

7

OssianTromsø, NO
#7

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

11

RillaAberdeen, UK
#8

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.

6

SamPortland, OR
#9

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?

8

GildaTrieste, IT
#10

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

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

11

HollisBath, UK
#11

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

9me too 2

NikolaiSofia, BG
#12

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

14

PeggyRotherham, UK
#13

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

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.

7

NoahHull, UK
#14

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.

12

KikiFacilitatorGlasgow, UK
#15

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.

19

AshSunderland, UK
#16

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