Skippa
Anti-BS
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But the metaphore I usually use is of treading water because the unstated but very real fear is of drowing.
Love the metaphor
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But the metaphore I usually use is of treading water because the unstated but very real fear is of drowing.
I have tried dilligent pacing, and tried to get the sleep right, etc etc but really ... well the people who write about this sort of stuff (Myhill) usually seem to assume something like a steady state in which you have enough energy to cook and shop and do the laundry etc. (or perhaps have someone to do it for you. I don't live like that. I cannot live like that. My energy envelope is such a small thing that it cannot contain all I need to do to get by everyday.
For the last few days I have been trying to work up the energy to do some cooking.
This discussion of pacing is facinating to me.
I have tried dilligent pacing, and tried to get the sleep right, etc etc but really ... well the people who write about this sort of stuff (Myhill) usually seem to assume something like a steady state in which you have enough energy to cook and shop and do the laundry etc. (or perhaps have someone to do it for you. I don't live like that. I cannot live like that. My energy envelope is such a small thing that it cannot contain all I need to do to get by everyday.
(...)
For the last few days I have been trying to work up the energy to do some cooking. Yesterday I had enough energy to sit at the computer for a couple of hours (less than an hour at a time. I was reasonably alert but could not manage much time on my feet (minutes only). I'm not sure why, my POTS is about as bad as it usually is, the muscles in my feel and legs and hips hurt and twitch about as much as usual, I have not made any changes in supplements or anything I can control, but so it goes.
(...)
In december I inexplicably had more energy and the concept may have made morse sense. But january has been exhausting with feverish sensations and lots of days in bed. And I've had a couple of sleepless nights and my almost pattern of push rest rest push rest rest, has become cannot push, cannot push, cannot push, cannot push and I really need to.
But if pacing is merely management and not something that makes us better, I can at least feel better about this failling.
This discussion of pacing is facinating to me.
I have tried dilligent pacing, and tried to get the sleep right, etc etc but really ... well the people who write about this sort of stuff (Myhill) usually seem to assume something like a steady state in which you have enough energy to cook and shop and do the laundry etc. (or perhaps have someone to do it for you. I don't live like that. I cannot live like that. My energy envelope is such a small thing that it cannot contain all I need to do to get by everyday.
And Its 5pm and I am drinking coffee and hoping that I will get that boost of energy ... even though I know coffee does not really have this effect on me, and its just the best tasting variety of hope on hand.
It doesn't seem so, not from the results of PACE. If there were a subgroup improving, we'd expect better average results. Perhaps the classification problem is not the big issue we think it is here?Doctors really are seeing patients who respond to GET.
It doesn't seem so, not from the results of PACE. If there were a subgroup improving, we'd expect better average results. Perhaps the classification problem is not the big issue we think it is here?
No, I think the point still holds. Whoever we think this subgroup of responders might be, if they are well represented in the PACE patient pool, then they should be raising the averages on both objective and subjective measures. All these measures are ether non-significant or no bigger than you'd expect from placebo effects alone. So no suggestion of any subgroup responding well.Hi, I think you may misunderstand me.
The ones that respond to GET aren't CFS patients.
My feeling is, people sick enough to meet the entry criteria, that are motivated enough to undergo treatment (and all these patients are), would probably have reconditioned themselves by now if they could. Because its not rocket science, is it? Go for a walk, feel okay, go for another a little longer tomorrow, etc.
This morning I had to go out to get some milk, I took the trolley with me, (there's me looking young in summer shorts with an elderly persons shopping trolley - but I don't care, I need it) anyway I had to delve into a different zippered part of my purse to get some emergency bus money where I keep a little small change for when I run out of money on my bus card.To me everyone of those basic ones like brushing my teeth whilst standing takes a massive physical effort, causes pain, dizziness etc.
Irks me that, I know how to condition myself. I don't need to be taught that - I probably could teach some of them how get in shape - but would they be motivated enough? I wonder. hmm.Athletes (the overtraining cases you mention) are unlikely to need some PACE idiot to coach them on how to recondition themselves. GET is hugely patronising, suggesting we all need our hands held cos we just can't manage it for ourselves.
No, I think the point still holds. Whoever we think this subgroup of responders might be, if they are well represented in the PACE patient pool, then they should be raising the averages on both objective and subjective measures. All these measures are ether non-significant or no bigger than you'd expect from placebo effects alone. So no suggestion of any subgroup responding well.
My feeling is, people sick enough to meet the entry criteria, that are motivated enough to undergo treatment (and all these patients are), would probably have reconditioned themselves by now if they could. Because its not rocket science, is it? Go for a walk, feel okay, go for another a little longer tomorrow, etc. Athletes (the overtraining cases you mention) are unlikely to need some PACE idiot to coach them on how to recondition themselves. GET is hugely patronising, suggesting we all need our hands held cos we just can't manage it for ourselves.
yes, it's unreal @soti I lived in a kind of shock for about the first 4-5 years. I couldn't believe how the smallest of things like moving a heavy chair would make me so sick. Or holding a book made my arms ache and flare symptoms up nastily. It's a world never travelled before and one I never knew existed.Oh rosie26 yes... digging in the purse takes so many spoons, it's crazy!
Irks me that, I know how to condition myself. I don't need to be taught that - I probably could teach some of them how get in shape
I know... tight socks and trying to tug them off. I wear boots in winter and that's another tug of war. I get a flare up of ME when I first change over to wearing boots in winter because of the extra heaviness of them. After wearing light sandals in the summer it takes awhile to adjust to the heavier weight I have to carry with boots on.Putting on my socks!
And even worse... Taking them off again!
@Old Bones I learnt pretty quickly that trying to do a serious tone up was not a good idea. Especially doing squats, the squats gave me a hiding ME-wise. I tested the squats out another time just to check if it was the squats and it sure was because I went down again really bad.@rosie26 Irks me too. Although my job fell into the management/professional categories, I was trained to lead fitness classes in my company's in-house fitness centre, and did so on a volunteer basis. These days, I can't do more than three "pelvic tilts" lying on the floor without my muscles twitching so vigorously my whole body shakes.