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Sep 2023
6:07pm, 6 Sep 2023
48,151 posts
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DocM
20 plus years ago when ME was not very widely accepted, one of the clinics I worked in I had many ME patients, whilst spoon theory wasnt a thing then, its very much the way we helped the patients manage their lives. its very easy with a post viral condition, to be sitting in your chair and think, "well i feel fine sitting here, so I'll just go and do such and such", but then to be paralysed with exhaustion after just starting the task. So often it comes down to, if I want to do this,I must not do that, as doing both will be too much. It requires support and understanding from those around you.
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Sep 2023
6:18pm, 6 Sep 2023
13,783 posts
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Little Nemo
I did a form of this when I was struggling with long covid. Some of it was simple stuff - only put what I absolutely need to carry in my rucksack, no more just-in-case things. Taking the lift or escalators instead of stairs. Some of it took a lot more organising like wfh 4 out of 5 days, leaving all the hoovering to others. The biggest problem I found was saying no when I was asked to do things I couldn't easily manage. I felt very guilty but I knew I had to do it to get better. Finally it was accepting that the house and garden were going to be shitheaps until I was recovered which was not a great state to live in!
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Sep 2023
6:31pm, 6 Sep 2023
7,403 posts
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Helegant
Back in the early days of Covid I returned to work in the hospital and struggled with extreme and sudden-onset tiredness. I remember saying to one of the OTs that I did what I could when I could and then when I ran out of energy I rested (no choice). She agreed with the approach and said that most of her working day was spent trying to teach people to find that balance.
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Sep 2023
8:52am, 7 Sep 2023
169 posts
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Rascal
SteveNR, Thanks for the spoon PDF link. I can identify with that and it will help explain to family & friends. Those who are irritated with me & say 'you just need to get back to normal, it's mind over matter' 🙄
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Sep 2023
12:47pm, 7 Sep 2023
13,785 posts
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Little Nemo
I ended up having an argument with my best friend because she kept telling me to be positive. I had to explain that this doesn't work for me and just became an extra thing to stress about. I'm a pessimistic realist so I needed to find my own way of dealing with long-term illness.
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Sep 2023
1:13pm, 7 Sep 2023
110,261 posts
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Hanneke
I hate the "pull yourself together" "be positive" brigade. I am perfectly capable of pulling myself together and am the eternal optimist. If I cannot get off the sofa because of post viral fatigue or chemo side effects, I cannot!
Tell them to F.O.!!! Sorry to be rude...
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Sep 2023
1:19pm, 7 Sep 2023
110,262 posts
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Hanneke
And I think we can safely say of all of us on here: don't you think we'd rather be running? Working? Enjoying life in full fitness?
I remember my GP saying: you are making yourself ill, it is all in your head, take anti depressants, see a shrink.
Me: depressed??? I am the least depressed person I know. And I am desperate to be able to get back out into my beloved hills on foot and bike and stand on those podiums again 🤬🤬🤬
I am trying to get better but I cannot...
He agreed in the end.
It transpired it wasn't post viral fatigue, nor fibromyalgia, nor chronif fatigue syndrome or even MS. I had lyme disease!!! Took 2 years to get better from. I never fully recovered from the damage done.
NEVER GIVE UP!
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Sep 2023
1:20pm, 7 Sep 2023
110,263 posts
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Hanneke
And yes, as a naturopath and herbalist I see a LOT of people with "mystery fatigue" and it is very real!!!
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Sep 2023
3:51pm, 9 Sep 2023
1,848 posts
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beebop
I’ve just finished a fortnight of being beaten up by whatever the latest strain of corona is called. In three weeks and two days I’m booked to run Loch Ness marathon. Can’t say I feel like jumping back into training immediately. Realistically, should I wait and see how fast I improve, plan to run very easy pace, or should I just see if anyone on Fetch wants to run it? Can’t postpone or swap to another race, because the company has rules about that. Any comments or suggestions welcome. I’m not a speedy marathoner at the best of times. Training was a bit off because I handed it over to an app and it kept me at a very slow pace - I feel silly, but I didn’t spot that until six weeks out because I’d basically wanted it to think for me so I could get on with everything else. 😖 I’m wondering whether a post-virus marathon might trigger some longer-lasting problems. Thanks for any replies!
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Sep 2023
4:17pm, 9 Sep 2023
15,431 posts
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jda
I’m no expert but that sounds like prime doing-yourself-serious-harm territory and I’d be very tempted to sack off it.
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