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

GLP CircleA peer support community

Long covid and fatigue

Being told to just move more and how I answered

Started 24 January 2025 · 16 replies · 205 hearts · read 2.5k times

BoazHaarlem, NL · 24 January 2025
1.5 years ago

Being told to just move more and how I answered — putting it in its own thread so it does not get lost in the check-in.

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

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.

I have avoided asking about this for six weeks out of pure embarrassment, which is ridiculous given that this circle exists precisely for it.

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

68

FionnualaDundalk, IE
#1

I had to accept a smaller week. Not permanently, as it turns out, but for about a year, and the accepting was harder than the smaller week.

11

BronteHaworth, UK
#2

Picking up Fionnuala’s point rather than starting a new one.

My appetite changes and my energy changes interacted in ways that took months to untangle, and eating consistently was what stabilised both.

8

Stepping in because a question about another medication has come up. That is a pharmacist question and it is genuinely one they will answer properly and quickly.

27

PerlaManila, PH
#4

The advice to exercise gently is complicated for us and I would say be very careful with it. Mine went badly and my clinic explained why afterwards.

7me too 3

BertieHarrogate, UK
#5

I found the guides here more realistic about energy than anything else I have read, because they do not assume a body with a reserve.

12

AleksLjubljana, SI
#6

Just marking that I read this properly rather than skimming it.

9

NadineLyon, FR
#7

Something practical: I schedule nothing for the day after, ever. That single rule has prevented more crashes than anything else I do.

14

OzrenZagreb, HR
#8

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

My worst weeks all followed a good week. That pattern was so consistent that I now treat a good week as a warning rather than a permission.

11

IdaRotterdam, NL
#9

Picking up Ozren’s point rather than starting a new one.

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.

15me too 1

MorayElgin, UK
#10

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.

10

OllyReading, UK
#11

Temperature regulation was a thing for me that nobody had mentioned. Warmth helped considerably and it took me a year to work that out.

12

HuwWrexham, UK
#12

Building on what Ida wrote rather than answering the original question.

What helped enormously was writing down what I did each day, not how I felt. Feelings lagged; activity was the leading indicator.

9

NolanHalifax, CA
#13

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

Somebody in this circle described a good day as a loan rather than a gift, and I have quoted that to about nine people since.

11me too 7

MaeveSligo, IE
#14

My clinic asked me to change one thing at a time with four weeks between changes, which felt glacial and was completely correct.

10

Facilitator note: pharmacists are the most underused people in this whole business and several of the questions on this page are ones they answer in ten minutes at a counter.

24

DillyNewport, UK
#16

The thing I underestimated was cognitive fatigue as distinct from physical. A demanding hour of thinking cost me the same as a walk.

15me too 9