Activity baseline vs activity ceiling, why concepts and language matter

Well, the BPS crew will always twist our words no matter what, and if we are worried about what they think about how we describe things, the concept of keeping to our limits could easily be taken as being about us keeping to arbitrary, self-imposed limits, rather than limits imposed upon us.

Quite possibly, but we can only do so much with language, obviously what we need is research to find what exactly is up with us.

My thinking has come from pondering on how best to explain to researchers, in the various groups that I am patient rep in, our collective experience. Obviously everyone will favour a particular explanation, I've received enough feedback here to make me happy that the concept of an exertion ceiling, while not perfect, is widely recognised as doing a reasonable job, but I'm not trying to impose my way of explaining on anyone else.

One of the key things that I want to do, as much as I possibly can, is, in the groups I'm involved with, to move things away from fatigue and more towards PEM and the limits that exist on our available energy, as this is more of the central issue for us.

 

@Andy, thank you very much for all you do. As a patient rep and on this forum!

And, I agree, there are limits to language. I do think exertion ceiling is better, and as you say moving towards an understanding of PEM.

 

I think a problem is the false perception that it is linear. It's not. There is no direct proportion between exertion and consequence. There is no equation of 1 effort = 1 ouchie, as the psychosocial model assumes. The same activity one day can be absolutely fine, even almost invigorating, and another day lead to a weeks-long crash.

There is a balancing act. Don't know how to make an convincing image of it but I imagine a funambulist balancing on a ball, itself on a not-nearly-taut-enough cord. A little movement in the wrong direction may be enough to throw the ball off. The funambulist may manage to fall on the cord itself but not always, sometimes they drop all the way down. The balance is extremely delicate and tiny movements in the wrong direction may lead to a cascade that is completely out of proportion with the effort itself.

This is obviously the basis for the dumb "catastrophizing" assumption, even if there is no damn "boom" at all. Sometimes it's just cooking, or even less. It's a false perception that doesn't make the difference between a rock falling on your foot and another rock falling on your foot. It just assumes that all rocks are the same mass and since they don't understand the difference between a 1kg rock and 1t rock they fail to understand why pressing the release button that drops the rock is any different when all you did is gently pressed a button.

 

Oh, thank goodness. I've been thinking for ages that there must be something wrong with me because I've never been able to determine what this mythical "baseline" is that pacing guidelines are always banging on about.

It's wild how willing we are to blame ourselves sometimes.

 

Absolutely right @rvallee - ME and activity within the ME prison are not linear. It's not "up, up and away!" It's round and round we go! We cannot accomplish linear progression - the standard: every day in every way I'm getting better and better. Not possible at this point for most, if not all pwME.

 

I agree that the concept of a baseline is a myth. When I wake up I don't know how many "spoons" I will have that day - maybe 5, maybe 1. And sometimes the spoons I thought I would have that day disappear mid-day.

Dr. Lucinda Bateman I think described energy management and pacing as trying to hit a moving target.

 

It's the concept of fatiguability that seems so hard for people to grasp
Fatigue is not the most onorous nor annoying symptom and yet it is the most quoted / first symptom on a list.
Why?

 

I had never come across the phrase "energy envelope" before I started reading about ME. Although I understand the phrase I don't think it is very descriptive. Who wraps themselves in an envelope?

 

It's not that hard to grasp, it's been repurposed to mean anything people arguing in bad faith want it to mean. The word has almost been stripped of all meaning because of this abuse of language. It still has its actual meaning but also about 100 others, shifting based on audience and circumstances to fit the needs of people who have to fit square pegs in round holes otherwise their made-up theories don't work.

All because we have to explain feeling sick, in the same way as one would call a week with the flu feeling sick, without using the word sick. Which makes as much sense as asking someone to describe the color red without using the word red or any of its derivatives. All it does is remove clarity and some bad actors have abused the ambiguity to promote their pet theories with zero accountability. Arbitrary rules make for arbitrary responses.

 

Think of it like a verb: to envelope. So in an enclosed space.

 

Sorry, still don't like it.

 

When I first met my wife, more than 40 years ago now, she had recently learned to drive. One thing she still had trouble with was how hard/fast she could safely turn the wheel when moving very slowly, such as when doing 3-point turns - in those days before power assisted steering, you could damage the steering if you applied too much force to the wheel. Her instructor had apparently tried to describe how fast you could turn the wheel etc, but had not really helped. So the next time she needed to do this, I told her to stop the car, and I then turned the wheel as far as was safe to do so, and told my then-girlfriend to hold the wheel again, and feel the pressure she had to apply to hold it there. I then explained that so long as she did not exceed that pressure when the car was actually moving, she could turn the wheel as fast as she liked. She immediately found this a much more helpful insight and told me so, and never looked back.

The point of my little anecdote is that sometimes it helps to look at things from another direction, maybe based on different criteria. When I observe my wife and her pacing, she really does not consider it in terms of baseline, floors, ceilings, envelopes, etc (even though from my more technical perspective I might do so). My wife seems to just sense where her limits are, how much she can push them, and when not to. Sort of pacing by the seat of her pants. I do appreciate this will not work for everyone. I also very much appreciate it may be greatly influenced by severity - I imagine pacing becomes dramatically more difficult the more severe you are.

 

Aircraft have the notion of a flight envelope. There are many factors that affect what an aircraft can safely do and under what operating conditions. If you were to map out all the possible combinations of factors (air density, angle of attack, airspeed, etc, and many many other things) you would end up with a weirdly shaped multi-dimensional space, within which the aircraft could safely operate, and if it strayed close to or beyond those limits, could/would get into trouble. The notional limiting boundary of this space is deemed to be its flight envelope. The notion of envelope in this sense is applied to all sorts of things, especially where complex limits, involving multiple parameters, are in play.

 

I’ve started replacing envelope with ‘stamina’ with a clarifying statement.

How are you today?...oh ok I’m having a very low stamina day today (as opposed to just low). I’m having a stable patch or I’m not doing too well ..I’ve got less stamina to work with recently.

This seems to work. To explain that it isn’t consistent and that I’m having to manage my condition. I’m having to give indications to my boss about what sort of day I’m having (if it’s bad)

I’ve actually had a few people ask how much I can do ...it’s far more engaging to normals than taking about vague symptoms or PEM or envelopes/spoons etc.

Baseline is ok in the context of starting to get on top of symptoms when pacing starts...but once you are pacing it’s pretty useless imo.

 

great idea.

i wonder if it can be expanded to stimulation overload and orthostatis intolerance and more?

karina and many more were involuntarily subjected to increasing levels of noise, increasing levels of being vertical, and so on. this is human rights violations.

so if possible it might be good to address them at the same time as exertion? dunno if possible.

this thread lists a large number of possibilities: https://www.s4me.info/threads/does-...t-exertion-is-the-correct-focus-concept.6059/

 

Understood. I wasn't lobbying for it just thought it might explain.

 

After being sick for 28 years this is more or less how I manage. Using heart rate monitors never appealed to me; even Lucinda Bateman recommends that people try to do their best without monitors and learn to recognize when they need to slow down. The only thing that might be possible to do - for some people - is to try to make each day the same - the same activities, the same rest times, the same bedtimes, the same meal times. God forbid if there should be any change to the schedule.

 

I think the most forgotten " hole in the energy bucket" to borrow the Myhill phrase is the emotional one.
It is so difficult to predict or plan for this and it can have huge effects.

My severely ill aunt's s labrador is 13 and literally on her last legs. Everyone knows that the inevitable death of the dog will affect her badly ( as it would anyone).
The physical effect of this is worrying to think of. It could completely floor her ( she is already bedbound).
Few , outside of close family, understand the reality of where this could go.

ETA- her activity ceiling is sitting up to eat twice a day