Implementing Pacing for Chronic Illness | The Chronic Illness Management Programme: Section 3

In Section 3 of our Chronic Illness Management programme we explore the ways you can implement pacing into your daily life. Considering the different types of energy, and practical steps you can take to make daily tasks, such as chores, more energy efficient, so you have capacity to do the things you want to do. It is the third step in our 9 section programme designed to empower chronically ill people to manage their health and live fulfilling lives. It was created in partnership by Elizabeth Curtis and Occupational Therapist, Jo Southall.

🏘️ You can join our discord server to chat to others taking the programme here: https://discord.gg/CQJMmgYPVY.

📰 For summaries of the programme sections visit and subscribe to our newsletter: http://alivewithchronicillness.substack.com/.

If you found this programme helpful and you would like to donate to the project and help fund current and future resources you can do so here: buymeacoffee.com/alivewithchronicillness.

To learn more about Jo and her work visit her website: https://jboccupationaltherapy.co.uk/.

Please note this Podcast is provided for general information only, it does not constitute as medical or professional advice. The views expressed by guests on this Podcast are their own, their inclusion in this Podcast is not an endorsement.

Music by audionautix.com

[Image description: At the top, teal text states "produced in partnership with occupational therapist Jo Southall". On the left there is a simple teal line drawing of a calendar with a clock overlaid. To the right is the programme title "The Chronic illness management programme: Pacing Theory" in large teal and black text. Beneath it is a teal play button icon next to a soundwave [Image description: At the top, turquoise text reads: “Produced in partnership with Occupational Therapist Jo Southall.” On the left is a large turquoise icon showing a clock and stopwatch with a circular arrow, representing time management and pacing. On the right, the title reads: “Alive with Chronic Illness – The Chronic Illness Management Programme,” with the subtitle “Implementing Pacing” displayed in turquoise below. Beneath the title is a turquoise play button next to an audio waveform, indicating podcast or audio content. At the bottom of the image is a circular Alive with Chronic Illness logo containing a photograph of treetops against a blue sky, set over a soft banner image of clouds and sky.]graphic. At the bottom is the circular Alive with Chronic Illness logo, featuring a photograph of tree branches against a blue sky, set above a soft blue sky background strip.]

Transcript

Elizabeth 

Welcome to Section 3 of the Chronic Illness Management Program. In this section, we explore how you can implement pacing into your daily life. This lived experience-informed program has been designed in partnership by Elizabeth Curtis and occupational therapist Joe Salford. It is provided for general information only and does not constitute as medical or professional advice. I thought what I would speak about a little bit is just how I approached pacing when I was looking at it from my own personal experience and how I tried to get an idea of what was working for me. And I came from it from a point of thinking, I actually don't really know what energy I've got and where it's all going, but it's going somewhere. So what I did was I used an app and I basically just put a time wrong when I did activities. So at the end of the week, I had an overview of what I was doing for how long and when. And I also made a note at the end of the day just to say how I was feeling, like a bit of journaling, how do I feel, how do my energy levels feel. And the idea was I didn't have to put pressure on myself to start trying to pace straight away. It was just noticing what I was doing. And I kept doing this over a few weeks until I got an idea of patterns and I could see what I was able to consistently do. And I could see on which days I was feeling better, which days I was feeling worse. And then I could start adjusting those different categories. And thinking about things in categories is heavily how I pace. And I think very much in terms of things such as like your social energy, what's taking away from social energy, what's giving back. Because I think the giving back was something that earlier on in my journey I just ignored. I didn't think about the fact that things would revive me. It was just this constant like take that it's just energy is taken. But there's so many things that do revive me. So I do think about in those categories of like social, emotional, cognitive, physical. And interestingly, I think When I first started my pacing plan, I thought it would be all of the physical tasks that would be the most draining. And I didn't actually acknowledge the role that emotional tasks were actually having on my energy levels and how that kind of worked in combination. So I found that really interesting. And then I just sort of stuck to that. And now I just have a color-coded digital calendar with the different colors for each category. And I can see at a glance, oh, that's what I'm doing this week. There's a lot of like heavy emotional tasks. I think I might need to revisit that. Can I cut them down Or can I change a few things around to give myself more space? 

Jo 

I definitely love the starter process for that, just learning to understand what it is you're actually doing and equally which bits of that are currently a problem. I think I call it survival mode, but where you're in a situation where you just kind of plod along and you've got no capacity for improvement and you don't really know how you get from day-to-day except that you do, mostly fueled by caffeine and determination. In those situations, when I ask people, what needs to change, what's working, what isn't, more often than not, I don't really know. So actually, you're right. Step one isn't pacing. Step one is understanding what it is you're trying to pace in the 1st place. And the other point I love that you made there was that the different kind of categories, I guess, of energy. Quite often, there's a perception that physical tasks use energy. but that thinking doesn't. So I get people to split activities between physical and cognitive and then restorative things that kind of give energy back or help you find joy or de-stress. But actually cognitively, it takes a massive amount of energy to do intense cognitive tasks. So even if you're very comfortable, you're sat down, you're supported, you've got your adaptations, your cushions, you are burning energy by doing these cognitive things. And that I think is a tripping point for a lot of people in factoring where the energy has actually gone. Because there's this perception that thinking is supposed to be easy somehow, but it's really not. 

Elizabeth 

Yeah, and I think when you then... acknowledge that, you can think, actually, I didn't really identify why I was like my experience. I was like, why am I having these really bad days? I couldn't figure it out. And then I realized it was like the emotional element and I saw and I could see it because it was there in front of me. And I'm the kind of person who I'm very visual. So I like to be able to see it and then I can analyze it. I like to analyze and see it. And that's kind of my approach to life actually. But it helps because then you see the things that you might have missed, but also the things that fill you up as well. So you might think, oh, that actually is giving me, making me feel better. It's giving me a bit. I'll put that in a bit extra. Let's find some more time for that. 

Jo 

Yeah. The other thing I think that's particularly relevant there is that it's not all about energy. So things that give you back can sometimes be giving you back physical symptom relief as well. So if we're talking about like activity alternating, which is one of the strategies I teach. So you might be doing something cognitive. This recording right now is cognitive. I'm sat very comfortably. I've got my feet up, but my brain is working. quite hard. After this, I'm going to need to not talk to anyone for a bit. I'm going to need to like power my brain down. But physically I would benefit from getting going again. So alternating something like this, something conversational with something that just allows me to kind of work on standby mode, but to physically get moving is really, really helpful for me. And particularly for anyone who struggles with the kind of the coat hanger pain. So like the top of your neck, top of your shoulders sort of tension and stiffness, particularly from computer work, little movement breaks can actually be quite restorative. They're giving you back some kind of movement. They're getting rid of tension, particularly if you're prone to tension headaches, that kind of thing is really, really important to factor in with your pacing. 

Elizabeth 

Yeah, I think that's a really important point there. Thinking about those other elements as well and thinking about ways you can adapt tasks and switch tasks so that you still, because rest is very challenging in general. I find that I find it difficult because I do get bored very easily. So I'm not the sort of person who could just sit and listen to an audio it for 10 minutes. I wish I was. I want to be that person. I'm just not. So I think it is nice to think about, okay, you've done this one activity, but it doesn't mean you have to have complete rest. You can look at something else that works for you can switch to something else as well. 

Jo 

Yeah, definitely. I think you're not alone there at all. I speak to a lot of people who feel guilty and annoyed about the fact that they can't do total rest unless they're asleep. And it's one of my big issues with the sort of approach to pacing, which is like do a thing, have a rest. It's boring. It just is. So unless you're physically so exhausted that you don't even have the energy to be bored, that kind of pacing can actually end up doing more harm than it's worth because you're getting stressed about the fact that you're forcing yourself to sit and do nothing. when you've got this to do list where you can see 10 jobs in the same room you're in that need doing. So yeah, finding tasks that are restorative for you. I love reading as one of my like recovery tasks. I will lay down, my partner calls it my book nest, but I'll just tuck myself up in a little blanket with a little book, but I reread books. that were easy reads the first time around because that's much less cognitive energy than trying to learn new characters and new plot lines. So you can kind of grade a task to be harder or easier. Arts and crafts is another one. I always have more than one knitting project on the go. I will have something that's like chunky, very simple, no pattern, not very technical. I just need to move my hands to keep my brain occupied just enough to take the edge off of the boredom. And then I've got something that's a little bit more technical and requires a pattern and requires me to actively concentrate. And if somebody talks to me while I'm counting, I'm going to yell at them. But having those different options means that if knitting is my restorative task, I can grade that depending on how much energy I've got for that task at any given time. So it might be the really easy option and it might be the slightly more technical option if I've got a lot of energy and I'm feeling pretty good. 

Elizabeth 

I like that. I like the idea of having a couple of different projects so you can kind of switch between them. I like to do that with craft and because I enjoy doing craft, but things like knitting are very difficult for me energy wise. Whereas something like painting in particular, if I do digital art, there's so many different ways you can do it. And then you can just scale it up or down depending on the capacity you have on the day. And I think that's quite empowering because you still get to do the thing you want to do and you still got that time for yourself, but you can make those adaptions and those changes. 

Jo 

Yeah, definitely. Things like baking as well. You can get like ready-made cake mixers. 

Elizabeth 

Yeah, love those. 

Jo 

So you can bake, but you haven't got to do the from scratch measuring, lifting, carrying, sorting everything out, 10 different mixing bowls to wash up afterwards stuff. Pretty much every baking recipe I've done in the last decade has been all of the things go in the stand mixer and then all of the things go in the oven. Do you know? And it works for me because it's less tidying up afterwards and less cognitive effort and less chopping and changing. So, you know, working out how to reduce the amount of effort required to do a thing is a core part of pacing. And I think it's oversimplified to just look at how much of a thing are we doing? Actually, sometimes it's worth doing something, but can we maximize our gains from that by simplifying the process or speeding a bit up or Even slowing it down. So I like cooking, but I'm horrendously heat intolerant. So I need breaks from the kitchen on a regular basis, even if I'm wearing like cool vests and I'm using all my adaptations and stuff. So I use a slow cooker for pretty much everything. Or I'll cook in winter with the windows open and then do like preserving stuff for the rest of the year. So I've modified when I do it. I don't really cook in the height of summer at all. I've modified using a slow cooker because it means that I can take an hour long break in between ingredients and it doesn't matter. And that makes the task so much more accessible for me, but it also makes it easier to pace. 

Elizabeth 

Yeah, that makes sense. You can still do it, but you've just adapted it and you found ways of doing it. And I think things like cake mixes that you highlight there are something that I use a lot. and just recipes that don't need too much. Like I like to make tiffin and that's, you still have to weigh out a few ingredients, but I can make a lot of it in the microwave. Like I can mix the butter and the sugar all in the microwave. I'm not sure if you're supposed to actually, but I do. And it works. It comes out good. I'm still here and I just ate some yesterday. And I love that though. It's sort of being able to still do the things that I enjoy, but then I don't feel bad afterwards because I don't feel like, oh, I didn't do it the right way or I. it doesn't feel, it's achievable. Whereas when I first started my pacing journey, I would think, right, well, I want to be able to do what I used to be able to do before my health declined and got to a different level of normal for me. But realistically, I'm not going to be able to do that. But I can do new recipes that are different. And then you finish it thinking, oh, I've achieved this rather than finishing it thinking, OK, I'm going to have to lay down now for two days. 

Jo 

Yeah, different isn't necessarily a bad thing. And that's I think when you start being able to put things back into your life after a period of really ill health, that's I think for me is a really like validating and really kind of important step in your rehab. It's not all about physical rehab. It's not all about like endlessly striving to be as fit as we used to be, because for a lot of us that isn't achievable. But if you can find ways to bring quality of life improvements, you're on the right track. And what you said there is really interesting. I'm not sure if you're supposed to with regards to like microwading recipes. There are so many like societal and gender norms and things that we just feel like we have to do them a certain way. And a lot of it when it comes to like housework as an example, we just stole the habits our parents had. Or like if you grow up with grandparents, you do things the same way they did. Like you wash up at certain times or do laundry at certain times. Why? It doesn't matter. Like it really genuinely doesn't. So one of the things I try to get people to do is to recognise patterns in their functionality. So I know I'm a night owl. I know if I fight that, it's 10 times as much effort to do things in the morning as it is in the evening. And the quality of work I produce is naff compared to what I could have done at 1am. So I just learned into that. I moved my working hours. I send emails at 2am, but with schedule send functions so they appear in somebody else's inbox at 9am. Like leaning into that and just giving myself permission to exist differently from what society deems to be the norm has been so helpful for me in terms of things like getting housework done or getting rehab done or creating routines, even things like meals. There's this the habit in the Western world of three square meals a day. But that's not a universal standard. That's like some kind of weird cultural societal thing. So I spoke to a nutritionist about this when I was referred years and years ago. And it was basically just as long as you're getting the right amount of calories and the right range of nutrients, the way you distribute that throughout the day doesn't really matter. So if getting three meals a day works for you, fantastic, but it doesn't for me. I'm a grazer and then I'll have one big meal a day and I'll have an hour long crash afterwards. But it's chosen specifically to be a time where I can have an hour's rest and it doesn't matter. So sometimes we'll eat at weird times, sometimes we'll eat irregular times, sometimes we'll eat really late, but that's what works for me to maximize how functional I can be for different aspects of my life. And part of that process is working out what works for you. When are you functional? Do you have natural patterns as a day where you're cognitively really alert first thing in the morning or physically more functional later in the evening? And then work out ways to do that. So I know I'm a night owl. I will set the washing machine, the dishwasher, sometimes even the slow cooker on like delayed timers. And then they'll start without me in the morning. I'll stagger out of bed at 11am and begrudgingly admit that I need to do some housework and I'll deal with it then. And that's so much better for me in terms of quality of life than trying to force myself to do laundry at 9am because I feel like I should. 

Elizabeth 

Yeah, and trying to fit into some predetermined mould that I say, who even sets things moulds, who even decides what you should or shouldn't do. Yeah, I think that's really important. Even with things like the laundry, like I used to separate everything because that's what my mum did. And then I just had a day and I thought, no, and I just put it all in and it was all right. And I thought, right, that's it. And that's what I do now. So I do a lot less washes because I thought, right, it's all just going in. That's it. If it goes pink, it goes pink. It's going to be pink now. And that's it. 

Jo 

Likewise, like if you know that laundry is something you struggle with, choose your clothing choices. accordingly. So in my reenactment habit life, basically, it's always like a linen under layer and then a wool over layer, right? And the idea behind that is that wool doesn't tolerate the same level of rough and tumble cleaning that linen does. So the layers that go close to your skin need to be things that you can shove on a hot wash with no prep whatsoever, all together in the same load, and they all come out fine. And then you might have a few nicer pieces that actually need looking after, but you wear them over layers that it doesn't matter so much. So they're not getting as much like armpit exposure. And like that level of logic stolen straight from the Vikings and Saxons has radically changed how I dress myself during the day. And it's really increased the amount of wears I can get per item before they need to go in the wash, which I think is really useful for me. But, you know, it's also a sustainability thing and it's also meaning that my clothes last longer. So yeah, it's just, I think things like that, there's a lot of experimentation to do to work out what works for you and the way that things used to be done maybe aren't quite in keeping with what we need life to be at the moment. 

Elizabeth 

And also things change. Probably the washing machine, the washing machines we've got now are going to be massively different to the ones we had 20 years ago. So the capabilities and the things like that change enormously. Even like with the dishwasher, and this is going to be my last thing I'm going to go on about now with the household stuff. But even with the dishwasher, I don't do a pre-soak. I just put it in the dishwasher and let it run. And it's absolutely always been fine. I've never had an issue. 

Jo 

Yeah, we do the same and we'll just clean the dishwasher slightly more often or occasionally run it empty. 

Elizabeth 

That's all I do, just run it empty. 

Jo 

All good. 

Elizabeth 

At this point, I think the pre-soak is a myth. I don't know who invented it, but never needed it. 

Jo 

No, me either. If in doubt, run it twice. Nothing wrong with that at all. 

Elizabeth 

Just run it again. That's fine. 

Jo 

You know, you're probably going to get a load of call-ins from angry dishwasher repair people now, but. Yeah. My one thing I will kind of share, I think because it's relevant, is the micro break. So all I recommend with this is like 10 to 30 seconds of not doing the thing you're currently doing. And in those 10 seconds, stop and actually check in with your body. Because I think a lot of people, particularly with chronic pain and chronic fatigue or any kind of long term injury, If you haven't had appropriate support and your only coping strategy has been to systematically ignore all sensory input from your own body, you get really good at ignoring things. And ignoring things like pain is kind of sort of okay. if it's like not an acute injury, there's nothing going on that's inflammatory, or you've actually tried modifying things and you've done the appropriate treatments and now you're just trying to get on with your day. That's kind of okay, we can live with that. But what we don't want to start doing is ignoring things that actually require treatment. remind you that you need a drink or you don't want to be ignoring the need to go to the loo or anything like that. So I think just taking 10 seconds regularly throughout your day to check in with your body. If there's nothing wrong and you're in kind of acceptably functional condition, great, crack on. But if you do find something there that's a little bit off, stop and deal with it because the sooner you deal with symptoms, the more effective your management is going to be. 

Elizabeth 

Yeah, I think that's a really good way for us to come to an end of this episode is to give our little homework of try and take some micro breaks and just identify what's going on with your body. Thank you again for coming on. 

Jo 

Thank you so much for having me. Looking forward to the next one. 

Elizabeth 

You can join in the conversation with others taking part in the program using the link in the description. Likewise, if you're listening to this program as it's released, you can sign up to receive the accompanying newsletter. But an archive of these newsletters will be available for those listening to the programme after it's been released. If you found this programme helpful, you can donate to the project via the link in the description. 

Please note this transcript is automatically generated and many contain errors.