My fatigue clinic's view on all this

Started 31 January 2025 · 17 replies · 212 hearts · read 3.4k times

OllyReading, UK · 31 January 2025

1.5 years ago

My fatigue clinic's view on all this Writing it down partly to work out what I actually think.

I have avoided asking about this for six weeks out of pure embarrassment.

I want to describe this accurately rather than politely, because the polite version is what I said at my last appointment and it got me nowhere.

My pharmacist has been helpful and my question has now outgrown what she can answer at a counter, so I am asking here while I wait for an appointment.

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this, because I would rather go in able to describe it properly.

Thanks in advance. Even a one-line "yes, me too" would help more than you would think.

TemSouthend, UK

What I could not tell apart was medication fatigue and my usual fatigue. My notes eventually showed a pattern but it took four months to see.

MairéadMayo, IE

The thing I had to learn was to stop before I felt like stopping. Everything I did up to the point of tiredness was borrowed from the next day.

KikiFacilitatorGlasgow, UK

Slowing this down for a moment. The question asked was whether this is ordinary. That is not the same as asking what to do about it and we have answered the second one.

PatrickLimerick, IE

Coming back to what Tem wrote further up, because it is the bit I keep thinking about.

My clinic was cautious and involved, which I would recommend asking for. Doing this without them in the loop would have been much harder.

11me too 8

HalCambridge, UK

The hardest part was other people's timelines. Everything written about this assumes a body that recovers overnight and mine does not.

NolanHalifax, CA

Heart rate as a pacing tool was more useful to me than how I felt, because how I felt was a lagging indicator by about a day.

HarriSwansea, UK

Nolan, thank you for that. It gives me somewhere to start from.

I want to say plainly that this has gone well for me, slowly, over two years, and that slowness was the ingredient rather than an obstacle.

10me too 3

NkemPort Harcourt, NG

What worked was splitting everything into halves. Half a shop, half a walk, half an evening, and stopping at half even when it felt unnecessary.

RonanBelfast, NI

I had to renegotiate work, which was frightening and turned out to be the single most protective thing I did.

OllieCardiff, UK

#10

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

Rest that is actually rest turned out to be a skill I did not have. Lying down with my phone was not rest and it took me a year to notice.

8me too 2

NadineLyon, FR

#11

The overlap in symptoms means I check anything new with my clinic rather than assuming it belongs to one story or the other.

8me too 9

RowanInverness, UK

#12

Nothing here is medical advice and with this combination I would say that more firmly than usual. The pacing has to be built with somebody who knows you.

HarlanDenver, CO

#13

Saying it out loud helps other people say it too. Thank you.

WinnieCarlisle, UK

#14

Mine improved to a genuinely better place over eighteen months and I would not have believed that in month two.

AleksLjubljana, SI

#15

Coming back to what Rowan wrote further up, because it is the bit I keep thinking about.

Coming back at two years to say I am considerably better, that it was very slow, and that the slowness is the part I would keep.

KikiFacilitatorGlasgow, UK

#16

A standing thank-you to anybody who returns to a thread with the outcome. Threads that simply stop are the ones that leave the next person stranded, and one sentence months later prevents it.

29me too 4

TabbyMargate, UK

#17

Pacing was the whole thing for me. Everything I have managed in the last two years came from doing less than I could on a good day.