‘Managing chronic fatigue is all about pace — do not go for boom or bust’ | Dr Mark Porter

[Skippa]

But the metaphore I usually use is of treading water because the unstated but very real fear is of drowing.

Love the metaphor

 

[Old Bones]

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.

Your post is timely for me, because I've been trying to ease myself into strict pacing for a couple of months now. So far, I'm still "trying" for many of the reasons you mentioned. These days, my excuse is that I'm waiting for a new strap for my HR monitor, ordered from the US six weeks ago. However, since my husband has kindly offered the use of his similar device, it really is just an excuse. Pacing is definitely much harder in reality than in concept.

Like you, my energy envelope is small -- miniscule, in fact, when just the action of attaching the HR watch to my wrist sends my HR into the 140's on my worst days.

For the last few days I have been trying to work up the energy to do some cooking.

What the proponents of pacing don't seem to realize is that for severe (but not very severe) patients, every decision we make to do a particular activity is a decision not to do something else, and that this includes not only food prep, but also eating. At least that's my situation.

I've devised a number of strategies I'm hoping will help to keep me honest, assuming I ever get started on more disciplined pacing -- both physical and cognitive. If so, I'll report later on my results.

@Richard7 I sincerely hope you start feeling better able to manage the activities of daily living -- soon.

 

[roller]

just to some others writing before:
i also refused to go to bed at daytime. whatever it took, the bed was a no-go area.
i would just sleep somewhere on the floor. mostly next to the desk.
often this tiredness gets too overwhelming, that i couldnt sit anymore.
nowadays i go to bed at daytime and i fall asleep within 1 minute. i sleep better at daytime than in the night.

in the night the worms crawl up. i still dont know why they do that.
if not, then muscle tension takes over.

 

[roller]

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.
(...)

exactly...

and when you feel a little better, then you have to do all this shit, which you missed to do:
clean the booth, all that heaps of paperwork and other embarrassing things you delayed.
and of course, you dont have the slightest idea how to explain that to the people affected.

this is, when you feel better. when you are glad, to be 'back'. out of this nightmare.
..when you think, you could go to the burger king, perhaps.
Or have a coffee somewhere.

its wearing you out.

 

[roller]

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.

there were others here, saying this.
me too. december was a month like as there was no other anymore.
i think this is something 'psychosomatic'. or psychological.

that you feel the next severe attack coming, but you dont want to admit.
because you dont want to have it. it cant be again, so soon, please not.
you may work like crazy, trying to do everything, as if there is no tomorrow.

im wondering, if there is something starting with january.
i was very sick and am still.
perhaps it was some medication i took end of december.
but - why in the first place i took it?
i was already feeling bad...

i mean, perhaps there are other factors triggering attacks.
other than b6 or low b12 levels or genes...
some outer conditions that affect our pathogens in the first place.

 

[Large Donner]

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.

This really rings true with me. People just do not understand that every single thing has to be broken into a single task that would have just been a collection or continuous normal activities to get through the day.

A healthy working person average day:

Get up out of bed easy, walk to bathroom easy, shower for 10 mins move arms and legs about easy, brush teeth whilst standing 5 mins easy, dress for 5 mins balancing on one leg at times, easy, walk down 15 steps with good balance no danger of falling easy, walk to kitchen easy, make breakfast while standing 10 mins easy, clear up some dishes easy, leave house walk 10 mins to bus easy, or drive up to an hour to work, easy, do a full days work sitting standing getting up and down all day and moving about easy, drive home easy, stop at shops easy, do some food shopping easy, make dinner easy, do some housework easy, brush teeth easy, get undressed easy, get into bed easy.

Thats just a basic day that doesn't involve socializing etc. Its just one flow of activity.

To me everyone of those basic ones like brushing my teeth whilst standing takes a massive physical effort, causes pain, dizziness etc.

This is why i get so frustrated with disability assessments that ask tick box questions like can you cook a meal, can you take a bath.

Well ye if i treat them as two separate tasks and do them days apart and don't have to do any of the other tasks in the same day from above. "Can you walk 20 metres". Staggering in pain with two sticks feeling dizzy and breathlessness dragging myself along is not walking but If i do not clarify my answer it would tick a box, "can walk 20 metres". No qualifying if i could walk back to the starting point. No qualifying if i could do it on top of basics tasks of daily living.

When I was healthy I never realised how ADL are a bunch of separate single tasks, they just all flowed into one.

Now if I cooked something in a day it would use up all my physical strength just that task alone. Each task is a task it itself and even then they are carried out with extreme difficulty.

 

[jimells]

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.

Nice phrase. Drinking coffee is one of the few things I look forward to - it always tastes good to me.

 

[Woolie]

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?

 

[Skippa]

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?

Hi, I think you may misunderstand me.

The ones that respond to GET aren't CFS patients.

Imagine an over training syndrome person. Rest for a while. Then do some GET. Fixed.

Because GET isn't just prescribed for ME/CFS patients.

 

[Woolie]

Hi, I think you may misunderstand me.

The ones that respond to GET aren't CFS patients.

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.

 

[Old Bones]

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.

Just before starting my short-term disability, proposed to be three months long, I remember sitting in a meeting, and thinking I wouldn't need that long to recover from what I assumed was merely overwork (despite a CFS diagnosis). But, I mused, I could take the full amount of time off. Just imagine how much walking I'd get done in three months. I actually remember calculating the number of kilometres on a piece of paper. It was an impressive sum. Instead, once the adrenaline required to keep pushing through the pain, fatigue and cognitive problems was gone, I crashed. I never did return to a job I loved, despite them keeping it, and my much-coveted window office, for me for more than a year. Go for a walk, feel okay -- not!!!

 

[rosie26]

To me everyone of those basic ones like brushing my teeth whilst standing takes a massive physical effort, causes pain, dizziness 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.

Because I don't use that zippered part of my purse much, it's quite hard to zip open and takes a lot of strength. I sat down to unzip it and I thought to myself - man, that would have provoked my ME trying to unzip that, will have to be careful how much more I do today. These little things are very big to us.

 

[rosie26]

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.

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.

 

[soti]

Oh rosie26 yes... digging in the purse takes so many spoons, it's crazy!

 

[A.B.]

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.

I think a hypothetical CBT and GET responsive subgroup is either an illusion generated by flawed research methods, or only exists when patients are selected according to criteria that conflate mild fatigue resulting from other problems with CFS. PACE trial doesn't contain such a subgroup. Whatever patients in PACE had, it didn't respond to CBT and GET.

 

[rosie26]

Oh rosie26 yes... digging in the purse takes so many spoons, it's crazy!

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.

 

[Skippa]

Putting on my socks!

And even worse... Taking them off again!

 

[Old Bones]

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

@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.

 

[rosie26]

Putting on my socks!

And even worse... Taking them off again!

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.

 

[rosie26]

@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.

@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.