Pacing: A guide for people who’d rather be doing other things

Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

For most of my adult life, I was told two contradictory things by medical professionals: first, that I needed to keep as active as possible and keep as much movement and activity in my life as I could, and second, I also needed to pace and not overdo it. 

It was…confusing…to say the least! Because no one ever told me what those things actually meant or how to go about figuring that stuff out in the best way that would work for my life – and all the things I wanted to do with it.

So for years I tried my very best to juggle these two contradictory things, which didn’t work out….super…well for me. 

I would go through phases where I pushed myself to extremes, only to have to take to my bed for months on end to recover. 

But then, apparently, I wasn’t even doing that right. 

I specifically remember being told off by my physio for resting in bed but using my brain to work on projects on my computer and thinking “what does she want from me? Am I literally supposed to just lie here and do nothing?!” 

These fears were only exacerbated when a pain management psychologist told me I had to expect less of myself in my life. Looking back, it was probably a badly phrased attempt to tell me to be kinder to myself, but that’s absolutely not how I took it, and it sent me into a spiral.  

That cycle continued over and over again, and every time I crashed I felt more demoralised. 

What, indeed, did they want from me? What was I supposed to do? Should I just spend significant periods of my time literally just in bed staring at a wall? 

Jo: So I think there are a lot of misconceptions about pacing. And I also think there are a million different ways to pace because there are a million different people pacing.

Natasha: That’s today’s guest, Jo Southall. More from her in a second…but first, what actually IS pacing? 

The NHS describes pacing as ‘planning your day so that you don’t cram too much in’.

For people with chronic illness, pacing can be a really fundamental tool for self-management, and can help break that “boom and bust” cycle many of us living with long term conditions find ourselves in… 

You know the one… trying to do EVERYTHING when we have the energy (or because we have to) and then crashing from doing too much! 

And as simple as spreading tasks throughout the day and including time to rest sounds, it’s something I really struggle with. And I know I’m not the only one. 

And that’s why Jo is here with us today. She’ll be sharing some great tips on how to get started with pacing, break that horrid boom and bust cycle, and find a bit more balance in life with chronic health problems. 

Jo is actually my Occupational Therapist, and on Boxing Day of 2020, she blew my mind and helped me reformulate how I think about energy management. 

One of the things I love about Jo is that she lives with chronic illnesses too, which means she just “gets it”. 

Because for so many of us, living, truly living, isn’t just about medication and physiotherapy. But the medical interventions are so focussed on purely symptom management, and it’s not a given that they’ll work anyway, that life…just takes a back seat. 

So…if I mistakenly conceived of pacing as taking time to do literally nothing so you can recover from previously doing a thing so you can do another thing at a later date…what actually is it? 

Jo says it’s about learning to use your energy efficiently… 

Jo: So if you are severely limited in the energy department, you need to use it really efficiently, or there just isn’t enough energy to get through the day.

So pacing is all about developing strategies to make sure you are maximising output whilst not using up more energy than you actually have spare. It’s kind of part of a suite of condition management things, so pacing alone, it’s not designed to be a standalone strategy. There’s also going to be prioritising and planning mixed in there as well.

Natasha: So, speaking of using your energy efficiently, here’s the bit where I warn you that this episode is pretty long. So long in fact, that we’ve decided to split it into two, purely for the pacing vibes! 

As always, listen to what you can, press pause, and you can always come back to the rest later. I hope you do!

If you’re new to pacing, even thinking about making changes can feel really overwhelming. If you aren’t sure where to begin, I want to share a couple of thoughts from Jo about something rather micro that you can incorporate into your day, which hopefully you’ll be able to sustain wherever you are in your life with chronic illness…

Jo: Tips and tricks wise, the first thing I always talk about is micro breaks. And I talk about this in so many situations that probably people who work with me repeatedly are sick of it at this point. But micro breaks, all we’re talking about are like 10 to 30 seconds of not doing the thing you’re currently doing. There are a lot of activities when we’re in the flow where there’s kind of like dead space time. That’s like you are doing an activity, but your active participation isn’t required. And I always use emails as an example for this. So quite a lot of us will get stuck into the flow with emails, where you do an email, you press send, you immediately click on the next thing. And I found myself pressing send, watching my inbox taskbar sync, and then doing the next thing. I don’t do that anymore.

My inbox will sync whether I observe it or not. So now I’ll stop and stretch,  raise my arms above my head, roll my shoulders, get my circulation going, have a sip of drink, wiggle my toes, and then I’ll go back to work. 

I also use micro breaks to start recognising symptoms. 

So what a lot of the us do, particularly if we’ve got overlapping symptoms (and pain is a key one for this, pacing isn’t all about fatigue, it’s about things like pain as well) what we’ll do is completely ignore all sensory information from our bodies for as long as it’s humanly possible, until alarms are going off and sirens are blaring and there’s flashing warning lights about all of the symptoms we should have taken care of ages ago. 

I am constantly amazed by my client’s abilities to push through with things that would land regular people in hospital and they’ll just keep going.

But actually, if when you take a micro break, you can just spend a few seconds working from head to toe and focus on, is there anything currently occurring in my body that I could fix? When you find something, don’t ignore it, deal with it when you find it. A little bit of a niggly headache is quite often fixed with a drink, a few minutes away from a screen and a little bit of fresh air, even if it’s just leaning out of your bedroom window. 

That’s a 10 minute way in which you can make yourself feel better. If you have a little bit of a niggly headache and you persevere with four hours of academic writing, squinting at a laptop whilst Harvard referencing things, or you finish the ironing, even though you really want to lay down, the situation you’re getting into is then five hours in a darkened room and a handful of painkillers.

That’s a much less efficient use of your time and it’s also really unpleasant. So if five minutes of fresh air and a cup of tea is an alternative, take the five minutes and the cup of tea option, and then you go back to work refreshed. 

The other side of pacing from a benefit perspective, not just symptom management, but in general, is that pacing actually improves the quality of your work. 

So I did a presentation for a business conference last year, and I spent quite a lot of time reading up on productivity and the best ways that the human brain engages in things. And what I found was that optimum concentration time for humans is somewhat upsettingly low – 7-20 minutes. So after a maximum of 20 minutes, the quality of your work starts to decline.

Your mind will wander, you’ll be fidgety or distracted or less focused. You are less able to produce optimum quality work, basically. 

So if you’re in this situation where you are pushing through and you reach hour four, and you feel awful, your work rate, your work quality is going to be terrible. 

Whereas if you take a micro break, it effectively resets the clock. Every time you take a rest break, you put yourself back in that 7-20 minutes of peak productivity, that peak performance area. 

So if you take breaks regularly throughout the entire day, you really are making much better use of your time, because a greater percentage of your total workload will have been done in peak performance mode rather than long hard slog, “I can just about still type if I concentrate” mode.

Natasha: One of the things that can feel really surprising is just how much of a difference even the tiniest interventions can have in helping to make a day feel just that bit more manageable, especially at the beginning…but I must admit I’m not always great at taking those micro-breaks, even though I know I need to. 

Resting is hard – and I’ve always hated what I view to be “total rest” – just lying in bed doing nothing. And I know I’m not the only one. Turns out, it doesn’t have to be this way. 

This is where something called activity alternating comes in.

Jo: This goes back to that, do a thing, have a rest where a lot of people feel like if you have to have rest breaks regularly, you don’t want to, you kind of just push through because being in rest mode, in total rest mode, it does disconnect you from the whole world. And particularly for people with pain as a symptom, distraction is a recognised and documented strategy for coping with persistent pain.

If you remove all distractions so that you can rest, what you are left with is, oh, I’m suddenly very aware of how unpleasant chronic pain is, and actually doing nothing for a lot of people is a really unpleasant experience. 

So if we can replace the need to drag yourself off into a darkened room repeatedly with something that actually engages your brain but allows your body to recover. Surely that’s better.

So activity alternating, what I get people to do is to break their life into kind of three key categories. And there will be some activities or jobs that overlap these categories, so you just have to be a little bit creative with it. But by breaking it into kind of physical stuff that challenges your body, so you are kind of walking the dog, physiotherapy, going to the gym, any kind of, like I say, household chores, I’ll quite often put music on while I’m cleaning the kitchen so I can dance and wipe the workshops at the same time. Anything like that, where you are working your body quite hard. 

And then equally things that healthy people think of as quite normal, but like changing bedsheets is a topic that comes up a lot. Changing bedsheets is exhausting. Wrestling with your duvet is exhausting. All of these things go in your physical category and then you’ve got the cognitive stuff. And this is often undervalued I think. We don’t think about how tiring it is thinking often, but it is, it’s exhausting.

So you’ve got any kind of academic work. Online shopping, finances are often quite a kind of drain on people, dealing with money is exhausting and scary. Anything where you have a kind of complicated thought process to follow. So like recipes or knitting patterns, all of these things can be cognitively challenging. Recording for podcasts. These things are cognitively challenging.

And then you’ve got your kind of relaxation activities, which often kind of double as rest breaks. So for me, things like knitting, but I’ve learned to do it laying down, or reading a book, or watching TV, or listening to music. All of these things are my recovery activities that I do to get a little bit energy back.

If I’ve just done something cognitively challenging, like talk, improvising for an entire hour or however long, recording a podcast, doing an appointment, I will follow that with something physical but low cognitive.

So I might go and load the dishwasher because loading the dishwasher does not require massive amounts of creative thing thinking or talking. But what it does do is get my body going. 

So the kind of flip side to cognitive activities is that often they’re done sat quite still. So what I might find is that because I’m focused on talking and thinking, I don’t notice quite so much that my circulation in my feet is now terrible, or that I’ve got pins and needles because I’ve been sitting funny, or that my lower back has seized up.

So alternating to something physical allows me to get my circulation going. It improves digestion. It will help me ease that muscle tension. It will make me more aware of my body again, but without the need to stare at a screen or think about anything more complicated than which way up the forks go in the cutlery section.

It’s that swapping and changing that allows you to rest bits of yourself without having to rest all of yourself.

Natasha: ​​I’m delighted to say that this episode is sponsored by my friends over at CareCo.

A big part of learning to manage my condition has been finding the right tools to help support me on a day-to-day basis. Be that something big like a mobility aid or an adjustable bed, or something smaller like heating pads and lap trays. That’s where CareCo comes in.

Careco are the UK’s leading mobility retailer. They have a huge range of equipment, from mobility scooters to electric wheelchairs, walking frames and rollators, to daily living aids that can help make your life easier in the kitchen, bedroom, bathroom, or even your garden.

They offer room of choice delivery for larger items (so your order isn’t just dropped on your doorstep), as well as Home Assembly if you need a hand putting your product together.

They have 24 showrooms up and down the country, so you can test out mobility aids before you buy, to make sure you find the right fit for you.

CareCo are Members of the British Healthcare Trades Association and offer a Price Match Promise on every product, as well as VAT relief.

Thanks again to CareCo for supporting the Rest Room. For 10% off your first order with them, use the code RESTROOM at checkout.

Now, if this is your first time thinking about pacing, prioritisation and activity management, some of these tips (as amazingly useful as they are) may still feel quite overwhelming to you. 

But we’ve got you. Worry not! The nice thing about all of this stuff, according to Jo, is that whatever stage you’re at with your condition, pacing is always scalable…  

Jo: I’ve delivered the same masterclass to people with moderate to severe ME as I have to somebody in a corporate office to increase productivity and reduce staff burnout. 

They’re the same techniques, but what changes is how you apply them.

So from a micro break perspective, somebody who is used to working full time, but gets a stiff neck from typing for too long, maybe might just need to throw in some micro breaks. And every once in a while, take a trip to the kitchen for a cup of coffee as activity alternating and that’s okay. It works for them. They’ve made improvements. They’ve made progress. Fantastic. 

Somebody who is quite severely deconditioned, who has been in bed for a long time, who has been struggling for a long time without appropriate support, we’re going to have to take things a bit more seriously almost. It may be that micro breaks need to be slightly longer and much more regularly.

It may be that activity alternating needs to happen in much shorter time timeframes. So, whereas some of my activity alternating now, I’m quite happy going for like two hours with some tasks now. Whereas when I started doing this, every kind of 15, 20 minutes, I’d have to swap to something else. 

It may be that somebody with severe ME will have to swap every 30 seconds. It may be that your tolerance for being upright is so low that we need to modify tasks as well. 

So part of it might be pacing and part of it might be, can we get you an electric profiling bed? Because that gives you the option to work at 45 degrees rather than at 90 or laying down. 

It may be that we need to delegate tasks or bring in assistive tech. So the thing about being an occupational therapist is that one strategy alone does not solve many problems.

Often it’s about strategy plus equipment or strategy plus equipment plus another person. 

It may be that, in terms of pacing, we need to look at prioritisation. If you know there’s going to be a cost to doing an activity, for a lot of people, the gut response is, so I shouldn’t do it. So I give the same example and it usually makes people laugh. 

If I asked you to run a marathon tomorrow, what would the answer be? If I asked you to run a marathon tomorrow, but some lycra-clad CrossFit enthusiast would push you in a wheelchair the whole way, and when you cross the finish line, you’ve got a million pounds in cash and a cleaner and cook for the rest of your life.

Natasha: Ooh yeah.

Jo: So this is a different response, but the task is still the same. The task is still a marathon. What’s different is how are we approaching that and what’s in it for you? 

So the first thing I often get people to do is to start changing their decision making process around pacing, because often we limit ourselves to how much is it going to hurt and how tired am I going to be afterwards and everything else becomes irrelevant. 

So particularly for things like social events, we think it’s going to hurt to do it and I’m going to crash for two days so I won’t do it. What you don’t think of is, emotionally how much good will it do me to see my best friend get married? Or financially, if I get paid a massive amount of money for a piece of work, but it has to be at 9AM when I normally start work at 11, but that amount of money will allow me to buy new equipment which makes my job easier over time, is it worth it?

Once you’ve worked out that something is worth it, you start looking at, so how do I manage it? And it may be that you can change the task. You can commit to half of it. You can job share. You can break that task up into smaller chunks. It may be that there is assistive tech to help you do that job using voice commands. It may be that you can alternate between voice commands and typing to rest your hands and your brain, alternating taking different brain. It may be that you can set something as a long term goal and work towards it. 

So exercise is something that a lot of people go, “Oh, can’t do it. It’s impossible.” And I think that’s because society tells us that it’s not exercise unless you’re wearing Lycra and you’re sweaty. It’s just not true.

If you’ve been laying down in bed completely high horizontally for six months, exercise will be sitting up 10 degrees for 30 seconds. The next bit might be sitting up 20 degrees for 10 seconds, or it might be sitting up for 20 seconds at 10 degrees. 

You build yourself up gradually. Some of the advice I think we often don’t take into account and don’t talk about is that if you’ve been deconditioning for three years, generally speaking, we’d expect it to take three years for you to dig yourself back out of that, if not longer. 

So five years of ME, don’t expect yourself to be back at work, sitting upright in an office full of people, wearing perfume and listening to loud music in anything less than five or six years, because it’s not realistic. When you’ve worked out what is realistic and what your priorities are, then we can start to talk about how do we make that happen?

And that’s going to be a very, very individual process. In terms of the prioritisation, often adapting the task is really important. So one of the things that lockdown made me realise was that I don’t socialise very often. So all of a sudden, when everyone was socialising via voice note, I was like, “Oh, this is amazing. I can engage in conversations on my terms in 30 second increments.” It was brilliant. And then when you were allowed to see friends again, that kind of stopped happening. But I’ve continued doing that with my closer friends because that’s what works for us, because they’re busy working and I’m busy being horizontal.

Natasha: Whereas it’s quite funny because for me, I find voice notes very invasive because I read and text so quickly that if I have to listen to a three minute voice note, I could have read that in 30 seconds. So for me I find voice notes quite invasive into my life. But one thing that I remember at the beginning of the pandemic, everyone wanted to talk, everyone wanted to Zoom.

And now there’s a nice word that someone invented in Yiddish, which is oysgezoomt, which is like Zoom fatigue. I’m like over Zoomed. And one of the things that we’ve been doing is, instead of having video calls with people, we’ve just been saying, “Hey, I would love to chat. Can we just do a phone call?” And just not having to be on video means you can move around more, you can not have to think about physically performing. And the difference that that makes has been really substantial to just being social and also then not getting caught into long text conversations that can end up eating out your entire afternoon. Just say, “Hey, this would actually be quicker if we could just slot out some time and have a nice voice call every now and then.”

Jo: Yeah, that’s perfect, spot on, like proud occupational therapist moment. Working out what works for you is a huge part of self-management. And you can listen to all the advice in the world, and I encourage you to listen to advice because often there’s a lot of really good advice out there, but ultimately, if that advice does not meet your needs when you try it, try something else. What works for one person will not work for the next person, even if they’ve got very, very similar symptoms because we all have different preferences and tolerances and learning styles and needs and access to stuff.

Natasha: So you’ve taken those first tiny steps towards introducing pacing into your day… and you’ve taken time to experiment and play around with some of the tips Jo has shared… but how do you know when to scale up and when to take your pacing a step further? 

And is the concept of a “baseline” all that useful to help you figure it out? 

Jo: A lot of people at this point, if you asked a lot of healthcare professionals, I think would go, “Oh, you’ve got to find your baseline.” I hate that phrase, which-

Natasha: What is a baseline?

Jo: Yeah. How do you find that? It takes people so long, focused on, “What is my baseline tolerance for something?”, that they could have made progress or written a novel or, do you know, got a job or grown a plant or done something else with… It’s just it’s a completely exhausting concept to puzzle out and the nature of being a human being is that we all have good days and bad days, but if your good days and bad days are absolutely poles apart, having a baseline will mean that you are pushing to work too hard a lot of the time and you are massively underdoing it at other times. So I, generally, get people who come in talking about baselines because that’s what they think they have to do, to disregard that entirely.

What I instead get people to do is to start actually reconnecting with their bodies and going, “Actually, how do I feel?” And things like… And this, it is a really hard habit to break. There’s a delicate balance between ignoring chronic symptoms because you can’t fix them, and ignoring things you really shouldn’t be ignoring because that’s actually an acute problem masquerading as a chronic one.

So muscle stiffness, it’s a series of acute problems, it’s not a chronic one. It’s just that we have these acute problems so often, it seems like it’s chronic. But, actually, if you can start tackling that muscle stiffness on a regular basis, constantly chipping away at that tension, getting yourself moving ever so slightly, and that may just be shifting where your body weight is positioned. Think about how you are sitting right now. Where is your body weight distributed? I’m aware that I’m sitting a little bit too far back, now that I think about it, so I’ll adjust and sit on a different bit of my bum. I can shift that body-

Natasha: Let’s do a little stretch.

Jo: Absolutely. And I love talking about posture because whenever I talk about posture at conferences, the whole room goes, “Oh right, posture,” and sits up straight. It’s brilliant. It’s so much fun to watch. But that ability to recognise, “Actually, how does my body feel? What am I doing? How am I sitting?” For the hypermobile folks among us, are your arms and legs actually attached to your body in the way they’re supposed to be right now?

I went through a whole phase where I just wasn’t aware I had a subluxated shoulder. It was probably about six months where, about 60% of the time, my shoulder was slightly out of joint. When I became aware of that, regularly, it was because my hand had gone numb and then I’d go, “Oh yeah, the shoulder thing.” What it took in order to stop that from happening was me being constantly aware and constantly trying to reactivate those muscles and support my elbow and reposition myself. And when I was constantly aware of it, I made progress fixing it because I wasn’t just sitting with these problems for so long.

So, step one in the, “How do I scale myself up to doing more?” process is often, “What am I actually working with right now? What can I do? What can’t I do? What causes problems?” 

Symptom diaries can be really useful for this, although they’re exhausting to do long-term. But documenting and recognising the impact that activities have on your body allows you to work out, “Actually, is this a good thing right now? Could I tolerate more? Could I… Should I be doing less?”

The other thing to consider is biometrics type stuff. So every couple of months or so I’ll wear a heart rate monitor smartwatch thing for about two weeks and I track my heart rate and I track my body stress, and my body battery is the new thing that I’ve learned and it’s quite cool, but stress levels, all sorts of other stuff. And I won’t do it all the time because it’s very easy to become obsessed with this stuff and I don’t need that information all the time, but it allows me to spot patterns. And one of the patterns I spotted last year was that I can’t French plait my hair whilst standing because having my arms above my head whilst concentrating, whilst stood up, was too much. I can French plait my hair whilst sat down or with my feet up. So that really small adjustment meant that me getting ready for the day is now less exhausting.

So spotting that pattern was key to me getting through the getting dressed process without putting myself into exhaustion mode. 

When you’ve worked out patterns, start making changes, but start with tiny changes. I always, always, always say to people, “You are better off not doing enough and not getting as much benefit from something than you are doing even slightly too much and giving yourself a flare-up afterwards. It may mean that your recovery takes twice as long, but it will be a smoother recovery, slowly, rather than, ‘Yay, progress,’ followed by, ‘Oh, I’ve made a terrible mistake,’ crash,” and that’s preferable for the vast majority of people. Avoiding massive flare-ups is preferable.

So changes, just start making a teeny, tiny change. And that may be a postural change for 10 seconds. It may be, “Can you tolerate having the curtains open a bit wider, so it’s a little bit brighter?” It may be experimenting with, “Do you want the curtains open, but sunglasses on?” So those kind of adaptation things and adjustments, tinker with it, experiment, see if you can improve on a situation, but slowly. If you listen to this podcast and you think, “This is all amazing advice,” I hope you think that, but don’t come out of this and go, “Great, I’ll try it all next week,” because it will go wrong and you’ll crash.

And when you’ve made five changes, if one of them is problematic but you don’t know which one it is, you have to scrap them all and start again. Whereas if you change one thing a little bit and it causes a problem, you can change it back because you know what the problem is. Once you’ve changed it back, you can try the next thing. So it’s kind of the same way you work out dietary triggers and allergens, you test one thing at a time and if it’s a problem, it stays on the no list. If it’s not a problem, you can bring it back in. It’s that kind of experimental approach, but experiment with teeny, tiny amounts, absolutely tiny changes. 10 seconds. Do you know, if your tolerance for something is nothing, five seconds of it is a big change.

Natasha: So, we know what pacing is and we’ve learned some ways we can incorporate it into our daily lives… but WHY is pacing so important? 

I think it’s fair to say there are a few common misconceptions that people have about pacing, and it’s something Jo sees with her clients too…

Jo: Quite often, I get people when I try to convince them to take a class or when they arrive at the class saying “I don’t have time to pace” as if pacing takes up more time than not pacing. 

The reality is that pacing being more efficient is more time effective. So if taking a five minute break sooner means you don’t crash for five hours later, you actually have more time if you pace yourself rather than less. The other really common one is that pacing has to be do a thing, have a rest and it isn’t.

Natasha: So, we’re going to take Jo’s advice this episode – pace and take our time to think about the tools and advice she’s shared so far. 

That’s not the last you’ll be hearing from Jo though! She has SO much more to share with us, and I hope you’ll come back for part two where we’ll be talking more about the dreaded boom and bust cycle, exploring what that is and most importantly, sharing tips on how to break it. 

We’ll also have some really useful tips for you on how to deal with set-backs (which we all know are inevitable), among many other things

Thanks again to CareCo for supporting the Rest Room. For 10% off your first order with them, use the code RESTROOM at checkout.

If you enjoyed what you heard and want a heads up when part 2 is live, please subscribe to The Rest Room wherever you get your podcasts. 

I’ve also launched a new Rest Room newsletter, where I’ll be writing what I like to call “slow content” about chronic illness. There’ll even be some lovely behind the scenes podcast stuff on there. You can find out more at natashalipman.substack.com.

Please rate and leave a review as that really helps new people find us, and please share the episode on your social media and with anyone who you think could benefit from it. 

You can find me on Instagram and Twitter @natashalipman. 

Aaand that’s all for today. Thanks for joining me in The Rest Room. Ta ta for now!