Pacing - what do you do/how would you describe it?

Inspired by a number of conversations I've had recently, the increased interest in pacing from people suffering post-Covid19 issues and a tweet from a member of @PhysiosforME
https://twitter.com/user/status/1284433331984248834

what is your best description of how you pace and how you know when to pace?

N.B. I know pacing is a regular topic for us but I'm not sure we have, and I couldn't find, a thread that clearly discusses our collective personal general tips, tricks and tactics.

For reference, we do have these threads Pacing - definitions and sources of information and Using Heart rate monitoring to help with pacing..

 

I have a much more casual attitude to pacing than most of you, and a one-off monitoring device that has so far proven to be utterly reliable. I do things that I enjoy, or even things that need to be done, until I get the first hints of weariness, then stop. That's about it really. My trustworth device, otherwise known as Kathy, has been known to intervene when I have got too involved in something enjoyable and not noticed that I am flagging. I have learned to obey.

I know this is utterly useless to others, but it works, and it does mean that the actual amount that I can do on different days does vary. But of course, you do have to be utterly insensitive to other people's expectations, and I can do that.

I get it wrong at times, but only by small amounts, so the payback is bearable.

 

For me the main principle is rather simple: with ME/CFS it feels like there's an amount of energy expenditure that you could do (it doesn't take that much perseverance or effort to go beyond it) but that results in you becoming more ill in all sorts of ways. If you go beyond it, you get worse and it takes a long time to recover from it. So with ME/CFS It feels like you are inclined to be careful not to go beyond that energy expenditure limit because you'll pay for it later, big time. Naturally, you would like to do as much as possible so you'd rather stay just below the limit. So, pacing is about finding a balance between those two: being as productive as possible without relapsing.

Pacing is often discussed in relation to exercise, probably because that's a quick and easy way to go beyond the energy expenditure limit and crash. But for me personally, the mechanism is similar for cognitive exertion or other things that require a lot of energy (like being in a crowded, noisy room or travelling).

The principle sounds simple, but with ME/CFS it's quite difficult to know when you overdo it because the post-exertional malaise mostly comes a while after the overexertion. I feel bad after overexertion, like a normal person does, but it's the worsening one or two days afterwards that's unusual and that takes a long time to recover from. So the signalling that you're exceeding your energy expenditure limit isn't great. There's usually a time-lapse between the overexertion and post-exertional malaise. That's why, I think many ME/CFS patients find it useful to use other means to detect they are close to exceeding their energy limit, for example by using activity diaries, heart rate monitors or simply from experience of what you can and cannot manage. I had a period where I used to time with my cellphone how long I was doing high-energy activities like reading so that I could better estimate how close I was to exceeding my energy limit and causing PEM. At the time I had no idea 'pacing' was a thing within the ME/CFS community or that PEM Is often delayed. So It isn't something I started doing by talking or listening to other patients.

 

I think there's a concern among doctors and healthcare professionals that patients might become trapped inside the energy envelope, as Peter White once phrased it. I understand that concern, but I don't think it works that way for most patients. There are all sorts of events in life that force you to go beyond that energy expenditure limit anyway - things you can hardly avoid - from doctor visits, problems with insurance/money/housing, to an important family gathering where you try to be part of to the best of your abilities. So you are frequently forced to step outside the envelope and are normally quite aware of what your energy limit is and what it feels like to go beyond it.

I think for many ME/CFS patients social occasions (meeting up with family, loves ones or friends) are instances where, despite the harsh setback afterwards, it is worthwhile to overdo it sometimes, otherwise you become very isolated.

EDIT: also ME/CFS is such a debilitating illness that for many patients their energy expenditure limit is incredibly low. The envelope feels like a prison from which you long to escape even if it is only for a brief moment. That's why, I think, it is difficult to pace, despite being such a simple principle and why patients still frequently overexert and experience PEM.

 

That's such an important point. Pacing is a way to do as much as is possible.

 

I have recently been reading a lot of the early advice. Pacing was never intended as an excuse for idling the rest of your life away. It recommended gradual increases in activity, just as GET does. The fundamental distinction was the reaction upon exacerbation of symptoms. Pacing said stop and rest until symptoms have reduced sufficiently. GET says ignore the symptoms and plough on. In effect that is meaningless. Plough on far enough and long enough and you are forced to stop anyway.

There can be no definitive advice. Everyone will find their own limits, and these may differ from day to day, hour to hour.

Just don't keep going and expect to force ones way to recovery. It won't happen. Probably.

 

I don't think it should be spoken of as a therapy. I don't know if that's what anybody is trying to do but I would discourage that angle.

Everybody naturally paces themselves as the result of intuitive cost-benefit calculations. There's probably more precise philosophical vocabulary to express this but the important point is that everybody is always doing it. It's just that PEM is an abnormal, potentially extreme cost.

 

The analogy is getting into debt with a loan shark. You might manage if you only go a little over, but if you go too far ....

 

This

Also here is my 'twopenneth'
Pacing, it's ruddy awful, takes huge self control & is a right pain in the arse. But essential. You need a lot of will power to resist doing what you really want/need to do. It's been nearly 20yrs & i STILL find it hard to resist the idea that i can just control this thing with my will & dominate it with pure strength of will & determination/bloody-mindedness. I know that i need to pace myself, but honestly i hate it. I hate every moment of the 'i need to stop now'. I do it despite the fact that i despise it, because the alternative is so much worse. But i fail at it regularly, same as i eat too much chocolate.

I think of it like a budget. mainly because exertion is cumulative. So there is an amount of exertion i can expend over a week/fortnight.... It includes all exertion... including talking, reading/watching TV, listening to music, processing of sensory input like vibration from nxt door's hot tub or drilling & lovely aromatherapy smells, as well as all types of sound. As well as standard physical energy like holding self upright in chair, washing hair, standing up, climbing stairs, brushing teeth etc, & cognitive like working out how to make the ready meal instructions make sense & remembering what day it is, plus answering emails, texts & internet use like what i'm doing here. You work out how 'expensive' particular activities are for you as you go along. There is no longer anything that you can just do without thinking about it. IT all draining the budget. It's like going from being a millionaire & only having to really consider when you spend £1000 to being on benefits & having to watch every 10p.

Usually the stuff you enjoy the most is the stuff that costs the most & is often completely out of your price range now, because thats just how life is

But each activity costs a certain amount so the trick is to decide what is most essential & make sure you got enough for that, then anything else (that is a non survival activity & a choice, gets fitted in afterwards, in order of priority). So you dont for example do non necessary things if you know you got a big important thing the nxt day. Same as if you knew the electric bill was due & not certain how much it going to be, you dont spend money on trivia/non essential stuff until you have paid the bill & see what you got left over.
The complication is life throws unexpected stuff at you, & also the more activity you've done the more things cost. Eg the 'cost' of watching TV when well rested, is significantly lower than it it will be after you talked for 30mins on phone. Oh & 'exciting' tv costs more than a nature programme.
If you spend too much you'll be punished, it's as simple as that. If you start to feel that weird feeling in your body that you feel unwell. Stop what you're doing. Immediately.

@JemPD please read the above sentence

It's really hard, especially if you live alone & so no one to deal with the unexpected. People who never had to do it have no idea how hard it is, so if you're new at it, dont beat yourself up if you struggle with it.


Also this leaflet from Ellen Goudsmit & WAMES, although old, is very good i think.

 

Pacing requires a lot of discipline and planning ahead. It will be difficult for ppl who are new to this to understand until it affects them negatively over time. An ME specialist advised me to pace decades ago, and it went right out the window as soon as I left his office.

 

For me, it was just one simple sentence I read back when I fell ill in 1983, from a book called The Mile High Staircase by Toni Jeffreys (1982) which I had just serendipitously stumbled upon in my local library. It was the autobiographical account of a New Zealand woman with ME, and the first time I'd ever heard of the disease; I'd been having no success getting a diagnosis for my increasingly disabling illness and found that her symptoms were a match for mine, so the book finally gave me a potential diagnosis to follow up with my GP. The sentence was: "We need to find the limits the disease imposes and live within them, not up to them.' So simple, but so true.

 

@NelliePledge , that is me to a T

 

For me pacing takes the form of continuously interrupting any activity after 10-15 minutes and lying flat on my back for a while. Then I resume another 10-15 minutes and interrupt and lie flat again.

I can’t do this all day however. At one point I have to stop all activities for good, there is a cumulative effect and any new activity, be it just 2 minutes long, will push me beyond my limit.

The hardest part is to learn that I can’t rely on my body to send a sign it’s time to interrupt, because the minute I do feel such a sign, it’s too late, I went beyond, and that sign is really a sign PEM will come inescapably. I have to stop based on what I know from past errors, not on what my body tells me.

That’s why I find one of the most useful pacing advise to be: if you feel you can do x amount of activity, do half.

(the hardest part about that is, of course, wishing and wishing to do more…)

(ok time to lie flat now)

 

Pacing is easy - if I feel significant vertigo, or one side of my body stops responding, I should have stopped everything 2 hours ago.

Not that I do things for hours you understand, I do little sub tasks, preparation etc, and split tasks into multiple bits, resting in between, but I still frequently over do it, because if I paid much attention to more minor warnings, like dizziness, fluey type symptoms, difficulty standing or moving without collisions, then I'd never get anything done.

So my pacing currently is just try and avoid doing stuff at a level that would leave me unable to manage the minimum I need to do to continue living. e.g. 2 days ago I didn't get a needed bath because the vertigo was significant, and trying to get a bath whilst everything is spinning and sliding in 3 dimensions, when I literally can't trust my body to know where it is, or what way up it is, is no longer entertaining, and often has negative consequences.

Sometimes I push, sometimes this, experience has taught me, is inadvisable.

All weighted by the importance, and urgency, of what needs doing.

As well as my ability to actually start.

ETA - I suspect that the problem isn't with how I do things, over the years my ability to pace has become okay, as far as I know I know all the 'tricks'.

The problem is that even using everything I know I simply do not have enough resources to live and stay out of PEM, so it's become a matter of managing the PEM, trying to keep it from getting completely out of control, rather than trying to avoid PEM full stop.

Of course bonus extras, like my GP, the DWP, having to deal with changes caused by the pandemic, and my sister (who announced she is coming down and staying a £45 taxi ride away) - all do not help when I'm struggling anyway.

ETAA - I suppose, in the spirit the of the thread title;

Minor warning signs include;
Dizziness, headache, lower body flueiness, walking into walls, door frames, etc., IBS, inability to coordinate hands (e.g. to wash/dry things, get plates out of cupboard in a 'proper' manner), minor (for me) cognitive issues (who needs a brain for most tasks anyway lol) - safe to complete small tasks, as needed, until escalation.

More significant warning signs;
Vertigo, some types of gastric sensations that resemble poisoning, falling into walls/ door frames (hitting the obstacle at a lower height with same body part, which is suggestive that I was falling and only checked by it, even if I wasn't aware I was falling), escalating and relentless pain levels at rest, some signs of immune activation distinct from normal flueiness, cognitive issues beyond normal, virtually instant fatigability with trivial things - time to lie down but if I am engaged in a very short task, like getting a drink, or making a simple sandwich, then stop, wait it out and, when it decreases, that's fine to complete. Repeated/multiple occurrences are bad and should prompt a day or 5 of rest.

Urgent warning signs;
Vertigo at rest, dizziness and vertigo that increases when standing, even if given time to stabilise, lack of control and cooperation from more than 1 limb (normally it's my left side that decides to go on strike), rage, for no obvious reason, different type of poisoning sensations, or escalation of the other type. - stop immediately and rest, normally bed rest.

This can go one of 2 ways, either a few hours bed rest and drugs, followed by a few days of no non essential stuff will stabilise it, or it's an indicator that a crash is imminent and it's too late to stop it.

Basically with any of these more serious warning signs I am going to be unable to complete even simple tasks so...might as well rest, wait, and see if things improve, as if I don't my body is going to make life pretty miserable anyway and i'm probably going to not just not achieve anything but have to make good and redo anything I try.

Further refinement of this stage is needed but TBH I rarely push things this far, it mainly happens by 'accident', as a result of multiple smaller infractions, and I'm not generally in a state to make close observations.

 

Over the past 36 years "pacing" has been the central strategy that I've adopted for trying to manage this illness while trying to have a life. As a tangent--like many of us (I'm sure) I felt I "invented" the concept of "pacing" (if not the term) independently way back in the early days of my illness, as the natural consequences of "not pacing" are a harsh alternative.

In my own case, I (consciously or not) do a quick assessment upon rising every day as to where (for lack of a better term) my "energy levels" are for that day. There is nothing that's quantifiable (or scientific) in this assessment, but my body gives me very good feedback about "where I'm at" on any particular day.

And I do mean, "on that particular day." The severity of my illness varies daily, so my activity (degree of pacing) needs to respect how I'm doing on that day. Almost always, how I feel upon rising--in terms of energy--holds for the day, but in recent years there have been days that have unexplainably gone south over the course of a day. But that's atypical for me (and I make no claims that my case is typical or representative for those with ME/CFS).

On days where I feel my best (which always carries a level of fatigue and cognitive impairment which can be termed "mild" only in comparison with those who suffer more greatly), I try to get things accomplished. We have a pretty home in a nice neighborhood and on good days I get out and garden. But I work slowly. Always mindful to work within my limits.

Not always true. There have been times (generally of crisis) when I've basically said "fuck it" and braved the consequences of over-doing it because the circumstances have demanded the sacrifice. I pay for such decisions.

But in the main, I try very hard to listen to the feed-back my system offers me. I will exert myself (slowly) and then rest on good days, rest more on "not so good" days, and on occasion rest entirely.

It isn't a perfect system, as I can still have crashes (and am unfortunately doing very poorly today), but "pacing" has allowed me to have a more "normal" life than I might have otherwise.

Having once been "severe" (early stage) I also know that pacing is not a panacea if just getting from one's bed to the toilet takes more energy that one can spend without a high cost. I never forget that level of severity and my heart breaks for those who are afflicted so profoundly. Pacing as a tool works only when one has some energy to expend.

Sorry to blather on so long.

Bill

 

This is why I do more as soon as I can ... I do not even have to think about it. Its automatic. Holding myself back is harder. This feeling is partly cognitive, but also partly a feeling in my muscles ... more energy than I am used to makes me want to use them.

This discussion arises every few years or so. One quick test for some is this ... if I start breathing hard, panting etc., then I have already overdone it.

More insidious is the slower type. Like @Graham, if I am doing something I like, usually a computer game, I can do it for far too long. Once I realise I have gone over my limit, however, I have a nap, rest, or change activities. At that point however it takes me a day or three to recover, and some more to fully recover.

One of my friends and I rate computer games for how many unproblematic hours we can play. Some games its minutes. Even the best ever is only six hours on a very good day. Most games cap out before three hours, even those chosen for their low demand on energy.

If, and I stress IF, ME is related to poor circulation or hypoxia, and we are adapted to producing more lactic acid, we can go a fair bit over our limit before we notice we are in trouble. However we don't want to lose too much muscle tone either, if we can avoid it.

So for patients who are not very severe it seems to me that pacing is about threading the needle between doing too much and doing too little, only the thread is thick, the needle hole is small, and we cannot see the needle. Every day it might be a different amount of activity, or a different type, that pushes us over. I do think we have to consider physical, cognitive and emotional energy expenditure. If we have to do too much on any of these, I think it prudent to cut back on each of them as much as possible for a day or two.

For the very severe just breathing, eating and engaging with the world seems to be a painful marathon. Pacing is just survival at that level.

PS Since I fully got into pacing, and used the hard breathing rule, and switched activities often, I have crashed very rarely. I used to crash several times a week when I was not pacing.

 

The other aspect that I failed to mention was switching: from say a cognitive problem, to some walking, to something that involves arms, back to cognitive etc, all in shorter bursts. I seem to be able to maximise total activity that way. Or I might be kidding myself.

 

Ditto.

 

Even when I'm puttering in the garden, I find myself doing one job (say one that involves bending over) and then shifting to something else, then something else, and so on. Trying to mix up the types of exertion.

My wife sometimes wonders if I'm just highly distractable, but there is a method in my madness.

Bill