On fatigability and rationing as improved terminology over fatigue and pacing

[Mij]

Because fatigue isn't always present. I didn't have much fatigue for most of my early years, but I did have more fatigability than normal.

Fatigue was not a defining symptom for me either, and the ME doctor didn't feel it was an important part of my diagnosis towards my disability application. Loss of stamina. For me, the fatigue came years later after I developed OI.

 

[MeSci]

Also if you said to pre-ME me,
“activity rationing”, I immediately understand. “activity pacing” sounds more like finding an efficient way to take breaks between activities while maximising the amount of activities.

Yes - unlike most people here (I've only read a few replies due to time/energy constraints) I don't really favour the word 'rationing' as it seem to mean limiting everything against one's wishes - think wartime rationing. But adding the word 'activity' makes it more comprehensible.

 

[Mij]

Rationing falls along the same line as 'spoon theory' that some already use to describe managing their energy expenditure.

 

[bobbler]

Yes - unlike most people here (I've only read a few replies due to time/energy constraints) I don't really favour the word 'rationing' as it seem to mean limiting everything against one's wishes - think wartime rationing. But adding the word 'activity' makes it more comprehensible.

I think for activities rationing is more clear than pacing which I have always had a problem with. But I go round in circles on the whole thing.

I imagine being warned by certain people who are sensibly thinking of how eg medical profession might perceive it that an issue if said wrong is if it gets twisted as if we are inferring we know or think the cause of the illness is 'lack of x'. But it is correct in what we are having to do/live in as a cage each day to 'get by'.

So the 'limit' part is key but I've been reminded again of recent weeks that this is definitely an illness not as simple as a battery thing. Then I remind myself these are component parts needed in the vocab

Is it useful for us to identify the gap it is actually needing to fill vs where it is over-stepping. And sometimes the short-term short cut to try and get some sense of understanding of one part (needed at the time) can undermine the bigger picture of what the actual illness is

So the term really needs to focus on the 'what we have to do' part? And then it gets complex as of course what we see as 'doing' takes explaining vs the what counts as 'activity' of norms. And we are into the can/can't for different severities. If in laypersons scales you have less than nothing to ration ie are bed-bound there is still explaining.

None of these yet really cover the sensory and how each task has elements others don't anticipate that make them worse or better part yet. But there is a difference between the two in getting across the broad concept (we have to ration our energy, not asking a therapist for a timetable for it) and pacing misleads in its laypersons meaning and to me in its 'what the illness is' whereas rationing at least gets across one bit even if there are actually more complexities on top.

I think @Kitty made a point regarding the issue of not always knowing what we will wake up with [to spend] and there is the 'credit card APR'. I like that this theoretically leaves room for the radical rest to visit dentist issue and doesn't have the insinuations of 'what managing yourself well should look like' or that the issue is that speed at which we do things.


I used to have to pace so that I could get to the end of the race in a good position in order to sprint. The term is used for all sorts like that like pace yourself at work or on drinking or sports or a big day out to a theme park so that you don't all burn yourselves out too early

It is also important because there is a bit more hidden in such a switch being suggested - which is that some are genuinely suggesting a specific form of pacing. Such as heart rate or some of the original pacing papers. Where rationing is just getting across something more akin to the spoon type idea where people have to agree that we do have a hard limit and we are having to work with having 'not enough'.

On instinct I prefer it to describe what I live as I have to look over a month or weeks as my day's 'ration' wouldn't cover much, but it isn't a fun way to live or feel sustainable in a 'that will keep me from getting worse' sense vs 'that's the best compromise I can do given what I have' sense.


Of course underlying this is the issue that one is maybe if taken in its perfect intended sense and where it fits for some trying to focus on the what keeps the body from feeling awful, but isn't realistic - and has a gap in communicating the hard-limit cumulatively. The other gets across the cumulative but ..

 

[Kitty]

I think for activities rationing is more clear than pacing which I have always had a problem with. But I go round in circles on the whole thing.

Yeah me too, but partly because these are terms and concepts I've never used outside the ME/CFS community. That means it's possible I haven't really grasped what the term being sought is actually for.

If it's about being unable to do something because of disability, pacing needs or the likely PEM consequences, I just say I can't manage it. If it's a suggestion about something to do in the future, I say I wouldn't be able to manage it.

That's the sort of thing I find myself encountering, and a smile and a simple "Thanks/sorry, but it's beyond what I can do" type response has always seemed to be okay.

 

[bobbler]

Yeah me too, but partly because these are terms and concepts I've never used outside the ME/CFS community. That means it's possible I haven't really grasped what the term being sought is actually for.

If it's about being unable to do something because of disability, pacing needs or the likely PEM consequences, I just say I can't manage it. If it's a suggestion about something to do in the future, I say I wouldn't be able to manage it.

That's the sort of thing I find myself encountering, and a smile and a simple "Thanks/sorry, but it's beyond what I can do" type response has always seemed to be okay.

Then there is the real world vs theory

So if you sit where I do and not enough energy before causing PEM to do all of eat and do hygiene enough and the medical things without compromise and you can’t ignore that all then it’s not sbout avoiding PEM but doing one’s best

But can do some albeit with PEM and timetabling

Then there is a difference between what would be the perfect slots of energy expenditure and rests I guess in theory - except given if I had someone caring fit me doing the teeth brushing or shower alternative it would still exert

Rationing is saying we have a limit but it really hurts the way I have to borrow to atttjd an appointment or shower but I have to make the judgement call and adapt . The shower ends up being at a point where even if showering is too much the impact from not showering becomes worse. That is all about my health (tho might have included others judgement in that which would indirectly affect decisions on me too)

Except it’s not able to stop and do what is ideal for me/cfs over all else.

I guess this in a better world would just be an issue when you get ill enough but the hostile environment means we all don’t have enough support to not be in this in some form.

I think it’s important to get rid of pacing and more different people have different approaches

I don’t think the community do enough to get across examples of the overall limits different levels live in and as a whole what that means (bring it alive to include noise and waking up ill etc and how x ‘divides up’)

The thing is I AM limited - if I didn’t choose then I wouldn’t be able to talk at that appointment because I was in PEM from doing something else that I could have timed differently. As it is even with my years of experience it’s still imperfect and either I get a surprise interruption before or I don’t and my body still doesn’t play ball and I don’t sleep the night before.

I don’t know if tationing is perfect or there is better at getting across

I do know I’d like some respect from people for what I pull off which is tenacious indeed instead of seeing me as pathetic for the grand total of what I do with my week. That to me is a type of disability bigotry of that they don’t see it as ‘overcoming a significant disability they understand’ and managing my life but being useless for not ‘casting it off’ . But we can only be heard by the good people so need to focus on getting those getting it.

And in moving people away from thinking they’ve got a therapy to offer or that one timetable works for all or micro management is the way forward. We. Aren’t free in anything by comparison their their lives so further should a and removal of autonomy on the few bits we have is bad in itself even if we put aside that each body is different in a way the adviser doesn’t understand. Every model will be a deliberate over simplification which isn’t intended to be a tyranny and yet those implementing them don’t seem to ever get they are notions not instruction manuals.

I don’t feel better for rationing it’s just a way of having any control of having ‘some for that important thing’ . But I would get quickly iller if I was forced to have more exertion than my limits. Particularly if continual or to a certain intensity. There’s no therapy or compromise around that.

I just struggle to get people to believe the level of limit I have . Perhaps because I do rearrange stuff they they get my best x mins for that phone call instead of watching me in bed in pain . But it won’t ever be how I was at my best 8yrs ago no matter how much rest. And it isn’t really just x mins because I can’t really think of a good reply having digested things without a lot more ‘showing my workings out’ these days - partly because the illness is worse no one anticipates what I will try to explain and it’s not believed at this level and I know what they are thinking. Even if it’s not about that something from my disability will need to be explained or skipped over it’s that intrusive. Partly I can’t think well and fast. So have to do the thinking as homework.

I’m really just an ill person who tries to work out how to ‘do’ things I can’t that are unavoidable and will knock me sideways. I can’t do much in a day and it’s less when I’m in PEM. I can’t avoid it.

I’m limited not ‘limiting myself’ and I guess that’s where I think we can unbundle better - we need to differentiate describing what we live under vs when something is someone ‘strategy’ and that those will vary between people and their situation and few of us are in a safe enough world we can choose based on our illness only to keep ourselves safe (but to avoid the argument or others knowing what we have we just take the hit etc)

Really at best I’m ’trying To plan how to rally my limited resources’ often to tick things that aren’t ideal me/cfs wise but are realities and important regarding other things and will impact me. Sometimes it is how to magic money tree that thing that’s not sensible energy but needs must. Like another health thing. I’ll guess at stretching to putting it in with a six week break around it ideally only be ease I can’t imagine further than that even though it probably takes more overall recovery I won’t be in bed for that but I won’t be back where I was. It doesn’t mean I can avoid showers and other things during that tho.

It’s not energy conservation but I don’t have much to ration as really what I have doesn’t cover what well people would think are the freebies before things start to count as actual activities. And yet I’m sometimes doing an appointment healthy people don’t have to endure. It’s not like my calendar marries with someone planning their work and fun diary

On the other hand someone at a different severity it might not be pure energy conservation’because you are already over’? Maybe they do have something to ration but yes the hidden extras and load will be a problem there. And they are still ‘having to choose how to spend’ not ‘choosing to ration’

Sorry just trying to think this out.

 

[rvallee]

Fatigue was not a defining symptom for me either, and the ME doctor didn't feel it was an important part of my diagnosis towards my disability application. I lose stamina. For me, the fatigue came years later after I developed OI.

Stamina, the ability to sustain effort, really seems to be key here. I can't really remember seeing it outside of a few comments on this forum. But I don't think it has much clinical meaning. Real life meaning, for sure, definitely very relevant, but not much way to get this across.

 

[AliceLily]

This is just my out loud thought processing of 'rationing'.

The ME itself has already done a major job of rationing drastically our ability to do a normal days activities. So we start at a forced level of disability and have to ration further to hold at a level or to get over a PEM and in severer levels no matter how much rationing it's still not enough and there is continuous rolling PEM.

I'm still trying to sit with 'rationing', I don't have too much objection to it. I have always expressed my pacing as a resting routine because it is mentally easier to pace each day that way and stick to it.

 

[poetinsf]

fatigability, as a replacement to fatigue,

I would add rather than replace. As problematic as the word may be, fatigue itself definitely is a prominent symptom for many patients including me. Waking up feeling unrefreshed or depleted, for instance, is fatigue rather than fatiguability.

a rapid increase in fatigue after minimal exertion, makes 100x more sense than fatigue. It also removes much of the nonsense about non-existent 'baselines', since no matter how well-rested someone is, with ME/CFS the issue is that it can be made significantly worse way too easily.

To me, fatiguability and PEM are two different things. I can predict my fatigue level based on my activities. They may be disproportional, but they still have linear relationship. Walk 1km, for example, and I could predict I'd spend x more hours lying down. PEM is when the linear relationship gets broken and I get completely knocked out.

The baseline also exists in my case and it used to be a bright red line. All I had to do was walk at 98 steps/min for 500m. I knew this because the distance from the subway station to my then gf's house was 500m. On good days, I'd walk a bit faster and then I'd get knocked out invariably the next day. I experimented, and 98 steps was the line.

I suspect the baseline is not discernible for sicker patients because they are way too sensitive to exertion and therefore, the measurement, even if they try, would have a large margin of error.

 

[JemPD]

I too exhausted now to read all the thread as my fatigueability lol has kicked in. But I am fully on board with Rationing. I saw someone on here talking of it & had serendipitously recently said it by accident with a good response - the person got it immediately.

So I already replaced all talk of pacing and energy budgets with an ‘Activity Ration’. Im finding it really useful. People seem to instinctively know what it means. Especially the over 40s who have watched enough tv about WWII to know what ‘rationing’ means.

Pacing is useless imho now it’s been polluted.

PEM seems almost hopelessly polluted too now. Just today I watched a reel on fb about how if you get tired after your long walk it’s called PEM & you may have ME/CFS. But I don’t see how a “ration” can be made to mean something else.

An activity ration that includes all types of activity inc mental and sensory, the amount of which fluctuates a little but always tiny . And you get punished severely for going over it.

I used that recently & she understood much better than anyone else had in decades!

 

[JemPD]

Oh am with you on fatigue and fatiguability too @rvallee

I like how it’s all described on our PEM Factsheet

 

[JemPD]

) I don't really favour the word 'rationing' as it seem to mean limiting everything against one's wishes - think wartime rationing.

Yes. that’s my life lol. Even when I was more moderate I had to restrict everything against my wishes. Is that not your experience?

That's the sort of thing I find myself encountering, and a smile and a simple "Thanks/sorry, but it's beyond what I can do" type response has always seemed to be okay.

Yes that’s what I do if I’m invited to something, but sometimes I need to ask someone to do something for me that I am clearly capable of doing but cannot because of PEM avoidance. Or to describe in general terms why I can’t do very much to people who I need to understand more than a friend or aquaintamce.

It depends on the situation. People who you’re asking to inconvenience themselves to help you when it seems like you can do it yourself. Exhausted doesnt cut it when they’re knackered too

 

[rvallee]

I would add rather than replace. As problematic as the word may be, fatigue itself definitely is a prominent symptom for many patients including me. Waking up feeling unrefreshed or depleted, for instance, is fatigue rather than fatiguability.

Yeah the title thread I chose kind of distracted from the point I wanted to make, which was to emphasize fatigability, which is not at all considered, over fatigue, while obviously keeping fatigue as significant, but as problematic in itself because 1) it's too common and 2) it's been completely botched to the point of being useless.

But it's really about what defines the condition. Fatigue does not define ME/CFS, but not everything is PEM, and that leaves a large gap that sets fatigability nicely.

 

[BrightCandle]

But it's really about what defines the condition. Fatigue does not define ME/CFS, but not everything is PEM, and that leaves a large gap that sets fatigability nicely.

Its really important too when some people are looking at repeat exertions like hand strength because its measuring fatigability not fatigue and certainly not PEM. We have physical measures for PEM (CPET) and fatigability (hand strength) but not fatigue. Fatigue might show up as worse performance from the outset but it doesn't seem to so far.

The high chance of muscle damage seems to go along with this fatigability. If I push to that limit I have a very strong chance of pulling the muscle at the least but its the sort of damage that takes a long time to recover from, if at all.

 

[MeSci]

Yes. that’s my life lol. Even when I was more moderate I had to restrict everything against my wishes. Is that not your experience?

Yes - maybe 'against one's wishes' wasn't clear. It's hard to differentiate between what one really wishes (e.g. if one weren't ill) and what one has to do to prevent PEM.

 

[JemPD]

Yes - maybe 'against one's wishes' wasn't clear. It's hard to differentiate between what one really wishes (e.g. if one weren't ill) and what one has to do to prevent PEM.

Ah yes I see what you mean. I guess I don’t personally find it difficult to differentiate because I can do pretty much nothing that I want. Not even personal care half the time.

And I never want to not do what I must not do if I am to avoid PEM.
so every aspect of life feels against my wishes it’s behaviour imposed on me.

But I suppose it could be said that I want to avoid PEM -although actually it’s ongoing deterioration I want to avoid not the PEM itself despite the suffering.
I’d be prepared to tolerate it if it were temporary, indeed I did, repeatedly when I seemed to recover back to my normal after each time.

But now I severe and my ration is minute and absolutely imposed not chosen. I don’t want to have to choose between teeth brushing and and a short conversation.

And it’s the only word I found so far that people seem to understand mainly I think because of WWII rationing

But I don’t think any of us should use terms we uncomfortable with that’s one of the few things we do get to choose

 

[Kitty]

sometimes I need to ask someone to do something for me that I am clearly capable of doing but cannot because of PEM avoidance.

On the odd occasion I've wanted to explain that, I've found injury pain the easiest to understand. So "It's like going out with a bad knee. You want to go, but you know it'll give you hell after."

On another point, there is something in that idea of imposition, isn't there. I went out with a bad brain last night so I can't get any further with it, but think it's worth exploring.