Pacing Theory for Chronic Illness | The Chronic Illness Management Programme: Section 2

In Section 2 of our Chronic Illness Management programme we explore the pacing theory and how it can support chronically ill and disabled people to better manage their energy, making sure you have the capacity to do the things you need to do but also the things you want to do, an important step in building a sustainable fulfilling life. It is the second 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.

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Transcript

Elizabeth 

Welcome to Section 2 of the Chronic Illness Management Program. In this section, we explore pacing theory. This lived experience-informed program has been designed in partnership by Elizabeth Curtis and occupational therapist Joe Southall. It is provided for general information only and does not constitute as medical or professional advice. Thank you to this section's sponsor, Be Adaptive, for helping to make this program possible. Be Adaptive helps you look good and feel good with adaptive wear that is designed for modern life. They offer a range of clothing, from boxers to joggers, all designed for comfort and accessibility. Well, thank you for joining me again, Jo, for our second week of the program. 

Jo 

Thank you for having me back. 

Elizabeth 

We had a bit of a chat last time about getting started, thinking about ways you might want to look at your systems and the structure you have in place if perhaps you have a change in symptoms or a new diagnosis. And this week, we're going to look at a key part, at least I think a really key part of getting started with anything. And that's looking at coming from a basis of pacing. 

Jo 

Yeah, pacing is always the foundation strategy for me. Everything you do, everything anyone does, even if it's not about chronic illness, it's about workplace efficiency. I think pacing should be everyone's foundation point. 

Elizabeth 

Yeah, and I think pacing, and we were just talking about this before, is different for everyone in terms of what our immediate thoughts might come to mind when we think of the word pacing. And it might be shaped by your own experiences, maybe things you've been told by doctors, maybe things you haven't been told by doctors. 

Jo 

Yeah, I get a lot of, oh, I was just told to pace myself. Nobody actually explains what that means or what it looks like day-to-day. And you're right, it does look different for everyone. But I think there is a bit of a, almost like a fundamental issue with pacing. And it gets a bit of a bad rap because people associate pacing with doing less. You know, take more breaks, do less things, commit yourself to less stuff, have less fun. But for me, pacing is about doing more, but it's about doing it sensibly. with the overall aim of you being more consistently functional and more able to engage with the things you want to do, but with less of those kind of consequences that come from doing stuff. 

Elizabeth 

Yeah, and I think a lot of time you do think about hasting, you think about sacrifice, think about having to cut out things, not do things that you want to do. And for me, the way I look at pacing is I do it so that I can consistently show up to the things that are meaningful in my life. So those things that I love, I can still make time for them. Because without pacing, it is just an element of burning myself out, getting back in the boom and bust cycle endlessly and then actually doing a lot less than I would be able to if I was able to be more consistent and overall quality of life, if I can have a routine, is a lot better for me. 

Jo 

Yeah, definitely. And for me, it's the sustainability of that routine is a really important part. So, how many of the things that you do now are you going to be able to keep doing for 10, 20, 30 years versus if you go with the kind of burnout approach, sure, yeah, you'll have a great time in the short term, but you're not going to be doing this when we look in 20 years in the future kind of thing. So for me, it's basically a sustainability principle. 

Elizabeth 

Yeah, so a very key part of when you're thinking about what your health might look like in the future when you're planning ahead, thinking about if I can make something that's sustainable for me now and it's adaptable for me. So as my health changes, I can adapt. That's gonna mean that I can still use some of these key principles in five years time, in 10 years time, no matter where my health takes me. 

Jo 

Yeah, definitely. And I think this is why I'm a big fan of teaching the theory of pacing rather than teaching So a lot of the time, the traditional kind of OT way of teaching pacing is to work with somebody to work out how to pace an activity, which is fine, but it relies on that person getting your input for every activity. Whereas I tend to teach the theory and then let people apply that to whatever they want to do with the intention of them being able to keep applying that for the foreseeable future, regardless of whether they're getting any ongoing therapy input. So I think when you understand the fundamentals of something on a theoretical level, you can then apply that knowledge to whatever situation you find yourselves in. And it may be that your situation changes, you might pick up a new hobby or, you might move house or get a new job or get a pet or, there's all kinds of things that can change our routines. So even if you have been self-managing really effectively and really efficiently for a decade, there will come a point where something requires you to reevaluate that. 

Elizabeth 

Yeah, and when you've got those fundamental skills, you can apply them to different situations. And I like your approach of the education and the taking it from that theoretical approach is really empowering because it gives the knowledge to the person who's going to be using that in their day-to-day life. And it allows them to decide what pacing looks like for them. And I like that rather than being told you should pace yourself in this way or you should do it this way, it's these are the fundamental skills. Think about your situation, think about the scenarios and you decide what works for you. Yeah, I think that is a very, it's very empowering approach. So I guess we'll talk a little bit more about the theory behind pacing and how that tends to work. 

Jo 

So you mentioned boom and bust earlier, and that's always my starting point in terms of just understanding how we use energy. And I think the modern, certainly the modern Western approach to life, less so in other kind of cultural areas, but you know, I think it's geared towards boom and bust. So you work five days and you crash at the weekend. Literally everyone lives in boom and bust all of the time. And it is exhausting and it isn't sustainable. And we know that because of the high burnout rates we have across pretty much every industry at the moment, particularly like healthcare industries, actually burnout rates among healthcare professionals are terrifying, frankly. So this pattern of boom and bust is where you get periods of really intense activity. followed by a crash to recover from that. The difficulty with boom and bust is that when we are in the kind of really intense activity bit, it feels super efficient. It feels like this is a great way to live. We're getting everything done, we're taking on the world. And then the three days in bed you spend afterwards completely make you reevaluate that. But it's really hard to change that behavior when you're having a good day. So it is quite a difficult thing to want to change, I think, until you get slightly further down the burnout rd. And that's where we start seeing people having more bad days than good. Or the good days aren't quite as good as they used to be. Or you may find that the crashes are, you know, you're more symptomatic or you're picking up new symptoms to go along with the fatigue as an example. So I think that that pattern is something that most people I work with recognise. It's definitely something I recognise in myself. I'm working to change it, but it's an ongoing process. The other thing with boom and bust is that it's really kind of easy and obvious to spot if it's like Monday was busy, so Tuesday I was a zombie. But it's not always that simple. So parents and teachers, students quite often boom and bust over term times. as an example. So you might get a couple of good weeks and then a really intense crash. Or you might drag yourself out of bed feeling surprisingly good, try to clean the entire house and by two in the afternoon you're done for. But it is that pattern of doing all the things followed by doing all the recovery that's the problem. 

Elizabeth 

And as you highlighted there, the way we are built within society and the way society is structured is very much like you today work five days, crash on the weekend. And I think that's quite powerful to look at it in the sense of that even non-disabled people can be in this cycle and think about how it might affect if it's really difficult for someone without a health clinician without a disability to be able to manage a full working week and they then need to rest and recover at the weekends. have a lot of empathy for yourself and understanding of yourself if you're struggling. Because I hear from that a lot, like when I'm working with people, I hear people say to me that they feel bad or they feel they're not doing enough because they can't work full time and this is something they really want to aspire towards. But realistically, I don't think that our current full time work is actually sustainable for anyone. 

Jo 

No, I completely agree. I don't think it is. And I think the amount of people Long COVID is a great example of this actually, that people will get COVID, be off sick and then push themselves to go back to work too fast, too hard, too soon, and are paying for it with 18 months, two years, three years, five years worth of disability afterwards. And we don't really know what the picture of that looks like in a decade. We can extrapolate based off ME and POTS and MCAS and all the other chronic conditions that are similar, but I don't think we've seen the full impact of that. yet. And it is that attitude that's really quite pervasive. And I think you also see that with things like coming back off maternity leave and being expected to drop straight back into your full role immediately with no phased return. Or, you know, you've had, I don't know, you caught flu or something and you were off work for two or three weeks and then you don't get a phased return when you come back and it's just too much and you will find yourself really unwell again. And I think it is something that is really quite a problem just in society as a whole, but it's particularly a problem for those of us who start the day with less energy. So we're not going to get as far. We're not going to be able to work full time. I definitely don't work full time. I don't think I ever will. I think in my entire life so far, bearing in mind I'm in my mid 30s now, I've done one week of full time work and it took me 3 weeks to recover from. So, it's just not worth it. And I think what we need to do is work on finding that balance where you are functioning in a sustainable way, but that also allows you to feel productive, to have enough money to live off, as an example, and to have a little bit of balance where you do have things in your life that aren't just self-care and work, because we do need that. We need the joy. 

Elizabeth 

Yeah, and that's a really important part, I think, at the pacing, when you're thinking about your activities and thinking about things that bring you joy and make sure that if you do decide, actually, I'm going to, and maybe I'm doing something and it's overextending my energy right now, so I'm going to scale it back a little bit while I get to a better balance, make sure that you're not just scaling back all the good bits, all the fun bits and things that fill you back up again. 

Jo 

Yeah, definitely. There's a strong correlation I've noticed between steep decline in your emotional wellbeing and mental health. and a previous habit of getting rid of all the things in your life that bring happiness. So yeah, it really is important that we are finding time for joy. There are proven scientific benefits to happiness. And if we're living in lives where we are functioning in a high stress situation and actually being chronically ill is inherently high stress, your body faces more stresses than it should just through existing. You need things that balance that or you're going to end up with all this kind of chronic inflammationy, stress hormony, cortisol type issues. And the way we balance that out is with happiness effectively. So yeah, it is really important to be factoring that into your pacing as well. For me, I mean, this comes back to sustainability again, but what we're aiming for is to take those extremes, that pattern of like really high energy versus crash, and just to level it off. So we're aiming to do vaguely a similar amount most of the time. A lot of people when they talk about pacing talk about baselines. And it's this idea that if you can find a level of activity that's always okay for you, that can be your baseline level of function. I never do it, ever. I think baselines for people with variable conditions are actively unhelpful. And we can spend so much energy trying to work out what our baseline is that we've missed the opportunity to do a load of stuff in the meantime. So I think for me, if you are going to rain for some kind of baseline, there's going to be some fluctuation. Everyone everywhere has good days and bad days. So recognizing that you are going to have a little bit of up and down, a little bit of, you know, stress one day versus it's much easier the next day. There is going to need to be variation in your routine, particularly if you have a couple of conditions that are maybe interlinked or variable or tend to change seasonally as an example. 

Elizabeth 

Yeah, and I think the baseline was something when I first ages ago started looking at pacing, I really struggled with because I could never figure out what mine was. And I think for me, I just have this vague idea of what I can roughly do within a week at the current time. And I'm very open to that that will change and I try and Because I talked about this before, but I'm very big on time blocking works for me. I give myself bigger blocks of time than I might actually think the task takes just because then if my health fluctuates and I need a bit more time, I've got it. And if I do it faster, then great, I have a bit more time for something else. But I kind of have this idea of like, this is how much I think I'll be able to do in a week. I'm not going to fill my schedule to that amount. I'm going to give myself a lot of wiggle room. And I try and I mean, ideally, I'd love to sort of get to a situation where I'm only doing like half of what I feel like I'm going to have the energy for, just because then there is space. If something goes wrong, like if I have a flare up, then I've got space for that. And then I can do extra stuff if I have the energy. But it's sort of the ideal is that I'm always working about half capacity just to allow me to consistently do things. 

Jo 

Yeah, that's spot on. And that's actually What I say to pretty much everyone I work with or we're talking about work, whatever the maximum amount of work you can do is, don't do that because that only works if things stay the same and you're currently functioning fairly well physically. As soon as you have something in your life go a little bit wrong, that will falls apart, you know? And when that falls apart, there's obviously a massive amount of like guilt associated with that. We don't want to be letting people down, we don't want to be cancelling things, but realistically, if you're living with a body that is not designed to function within the society that we currently have, there are going to be some conflicts there. And the way we get around that, as you've said, is to have that little bit of extra wiggle room. And it may mean from a prioritising point of view, there do need to be times where we will cut back on certain things in order to do other stuff. So this process of prioritising and pacing is not a fixed situation. You don't just decide, here's how I'm going to pace for the rest of my life. It's a process that needs constant review. I use the Finch app quite a lot for like my day-to-day listing type, you know, just anything I can automate gets out of my brain and frees up cognitive processing speed for something else. But I have a reminder on there monthly to just review what I'm doing, what like priorities, work, life. Am I happy with my current work performance? Do I feel like I'm burning out a bit or is this a sustainable pace? And that will change constantly. I'm about to start work on my dissertation. As a result of that, I'm going to have to cut back on some other stuff. And I've already had that kind of planning meeting with myself five or six times about what gets cut back and when and how I can modify my life and Part of the process for that was getting a cleaner in every other week because I need more time. And for me, looking after the house is the thing that takes a lot of time and a lot of energy. So if I can prioritize my way out of that, but then that became the process of financially does that work? And if it doesn't work financially, what needs to change at work to allow that to happen? So it is a constant process of adjustment. Anyone who thinks that they've got self-management nailed, is in for a rude awakening the next time something goes wrong, because it will go wrong. That's part of human nature. We live in a complex, interlinked kind of situation where there are a lot of variables at play, particularly variables we don't have control over. So there are always going to be things that you need to tinker with to kind of maximize your efficiency. 

Elizabeth 

And I think being ready or going into pacing and going into planning anything with the idea that this is the plan, but it might not happen like this. And we might have to revisit the plan, we might have to review it a few times, things might have to change, timelines might have to adjust. And having that flexibility so that you're going into it with that mindset of, so you don't get into the situation thinking, actually, this isn't working. I thought I could do this amount, but actually I think I could do it less. And then you end up feeling like you can't scale back if you need to. 

Jo 

Always give yourself a little bit of wiggle room in everything, whether it's the plan, the pacing, the energy, the rehabilitation, everything. Yeah. 

Elizabeth 

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