How to break the boom and bust cycle, for real this time

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

I’m so glad you’re back for part two of our pacing series. In part one, my guest Jo Southall (who also happens to be my amazing occupational therapist) explained to us what pacing actually is and how to get started with it, no matter where you’re at with your symptoms.

She gave us some really useful tips to help incorporate pacing into our lives in a way that’s actually manageable and sustainable. We’ve had such amazing feedback on the episode, so if you missed it, I’d recommend going back and giving it a listen before you get stuck into this one. 

As I mentioned in the last episode, we decided to split my conversation with Jo in two, purely for the pacing vibes! 

And a little behind the scenes fun fact, splitting the episode into two also allowed me to pace the scripting over several weeks. We’ve been pacing the recording too by taking micro-breaks, and my amazing producer Philly tells me stories in between takes! We talk more about how you can benefit from micro-breaks in part one!

I just wanted to take a quick moment to say that we have been SO delighted by the amazing response to part 1, so thank you to everyone who took the time to listen and share, and to everyone who sent an email and DM about how it helped you. 

The Rest Room can now be found on Substack (don’t worry, it’s still also on your favourite podcast app!) and we also have our very own newsletter, which I’m dubbing “slow content for chronic illness”. 

There you’ll get all the latest updates on the podcast, as well as more personal insights into the topics we’re discussing, articles on issues impacting the community, and much much more. You can subscribe for free at natashalipman.substack.com. And if you get something out of my content, and you’d like to support the Rest Room, you can also become a premium member for £5 a month (or £50 a year) – which will give you access to premium articles, chats, and more. I have a lot of plans for the podcast and the newsletter, and your support will help make that happen. That’s natashalipman.substack.com. Thank you again!

Ok, that’s all done! Now let’s get on with the show… 

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In this episode we’re going to be talking about the bane of my existence: the dreaded boom and bust cycle. We’ll also explore the importance of adapting your self-management to focus on what’s important to you, as well as confronting the fact that no matter what sometimes life just gets in the way. 

We’ll also talk about figuring out how to do stuff that you know will make you feel rubbish, no matter what…but maybe with some pacing tweaks could be more manageable.  

But first, a quick reminder from Jo about what pacing actually is… 

Jo: Pacing is basically a way of using what energy you have efficiently. 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. 

Pacing is all about developing strategies to make sure you’re maximising output whilst not using up more energy than you actually have spare. It’s 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: Now, I’ve said it before and I’ll say it again, working with Jo to introduce pacing into my life has been a real game changer. 

Before I properly understood pacing, I spent years in this awful cycle of pushing myself too far and then crashing. Over and over again. 

That’s the ‘boom and bust cycle’ in a nutshell. 

In order to break that cycle, you’ve got to learn to spread tasks throughout the day and include times to rest. It sounds so easy when you say it out loud… but believe me, it’s not. It’s a hell of a skill and there are a lot of really interesting factors to consider. 

And it’s a skill that I’ve personally spent years practising. And to be honest, I still struggle with it! I even boom and busted getting the last episode out because I decided to migrate everything over the day before and had a bit of a panic. Let’s just say, the irony is not lost on me. 

Now this idea of boom and bust really resonates with me. As I mentioned in the last episode, in the early days of my EDS diagnosis, I was told I was doing too much but also that I needed to keep active and do as much as I could. No one actually explained to me what pacing was or why I should do it, and it was all quite confusing. 

Over the years I’d learnt how to pace the big things but my life was still very much, do a thing… stop… do a thing… stop. Looking back I can see I was in that boom and bust cycle. And it’s somewhere I feel like I naturally live – a consequence of having to push through every day as a child.

I’m going to let Jo explain in more detail…

Jo: So boom and bust is a pattern alternating between periods of intense activity and then crashing out to recover. So you get periods of doing loads, followed by periods of being a human zombie and doing very little. Often, this’ll follow an across-the-week pattern. 

So it’ll be Monday, did all the things, Tuesday couldn’t get out of bed. And then, on Wednesday, you’ve got yourself convinced you’re a day behind so you force yourself out of bed only to crash even harder the next day.

You equally get longer and shorter-term boom and bust. So a lot of people, particularly if you’re a morning person, you may find you get up really early first thing in the morning and in an absolute fit of inspiration, of magical energy using powers, you get all of the things you wanted to do done. And then by 2:00 in the afternoon, that’s it, you’re out of energy, you’re ready for bed, except there are still quite a few hours to go before you can actually go to bed.

The longer-term pacing tends to trip up a lot of people, but particularly parents, teachers, university students will boom and bust with term times. 

So you’ll push yourself to get through the term. And then the minute you get half-term break or summer holidays, you crash really, really hard and recover. So for parents and teachers, it tends to be opposites. So they’ll trade-off on child responsibilities while the other party crashes. Unless of course you are a parent and a teacher, in which case you don’t get the crash period to recover at a convenient time. 

So yeah, part of that is going to be working out the person’s own life experiences and journey and what they need from it. But boom and bust is always the starting point for a lot of people.

Natasha: How can people start thinking about their own boom and bust cycles? Because I think we can often, as a survival technique or as a survival mechanism, we get into these patterns and we don’t know how to start getting out of them. 

Because we do have to, I suppose, quote unquote, live in the real world. And if you don’t have the support that you need to be able to get help or limit what you are doing, or find ways to work that are better for you, that could be a really hard place to start. And people might feel, as you said earlier, that they don’t have a choice, but to live in the way that they’re living. How do you start approaching that?

Jo: I’ve started calling that survival mode. So survival mode is where clients, people, friends, family, general, where a person is sort of okay, they’re getting through most of the to-do list. The house is functional, but not as clean as you’d like it to be. The kids are fed, but maybe a little bit too much of that is out of the microwave and you’re not happy about it. The to-do list doesn’t have anything massively urgent on it, but you never actually clear it.

It’s that state where you are getting by day to day, but you’ve got absolutely no room left physically, cognitively or emotionally for any kind of progress. And the minute you have something go wrong in your life, and it can be as simple as getting a cold, the whole house of cards comes tumbling down and it all falls apart. And that’s a really, really common situation to be in when I start working with somebody because they’ve realised that that isn’t sustainable and have sought out some support in order to change it.

Generally, I don’t go in with the hard approach. What I’ll do is say, “We’ll work through the pacing masterclass. We’ll look at all the strategies.” And I’ll say, “Pick the smallest and easiest thing, absolute smallest change you can make. And you make that.” 

And if that frees up a tiny little bit of head space and energy, you put that energy towards whatever the next change is going to be.

So I think all too often as healthcare professionals, we expect people to be willing to make massive changes immediately. And what that often ends up being is a person giving up hobbies and interests in order to make room for self-management strategies. But I don’t feel like that’s a healthy way to do things. And what tends to happen is you create this resistance towards change because change is perceived as being, “I have to give something up in my life that I love in order to be healthier.” And it’s a really backwards way of thinking and I don’t approve of it.

So typically, we start with something that is an absolutely tiny change and we will work towards making it a slightly bigger change over time.

Natasha: Whenever we talk about this, it always really resonates with me that pacing doesn’t have to be about restriction. Because as you said, if you are feeling like, A, you have to add in all of these new self-management techniques, something has to give, something always has to make way for something else. But also, if you are used to, for example I’m a writer and when I write I have a flow of writing and then hours can disappear. But I noticed last year when I was in a flare-up and I hadn’t written in three months and I was writing something for a friend, and I managed to bat out this article in 20 minutes.

And then I was like, “I need to read over it and I’ll edit it.” But like I was boiling hot and my heart was going and I knew that it’d been more than I’d done in months. And then I was like, “Oh, but I’m already in the zone. If I just edit it now, I’ll feel better if I just edit it now.” And even with everything I knew, I edited it and then I crashed for the rest of the day.

And so it can be quite hard to tell yourself, “I know that if I take a small break now, I will not necessarily feel as awful.” But when you’re in the zone of doing something, it can feel so restrictive having to stop yourself, even when you know better.

Jo: This is probably one of the most common challenges with pacing. And this is actually why, when I’m working with somebody who’s got a lot of complex overlapping medical stuff like many of us have, like I have, the first thing I do is always pacing. Because pacing is, at the same time, the most effective strategy but also the hardest one to learn.

And I think pacing is often sold as being an easy solution to things. But particularly with adults, change is not easy. If you’ve been in survival mode, unconsciously using a load of both healthy and unhealthy coping strategies for years, it’s going to take you years to form a new habit. And often people don’t talk about that. So I actually always finish a class with, “Be nice to yourself. This is going to be really hard work.”

But it is difficult. A psychologist in hospital once told me that it takes two years to change a habit. And that’s presumably with a non brain-fogged fairly functional brain. If you are brain-fogged up to your eyeballs, it’s probably going to take you a lot longer. Because what tends to happen when you’re running in survival mode, when you are brain-fogged, is that you run an autopilot for a lot of your life. Because so much of your conscious thought process is dedicated towards symptom management.

So if you’re constantly concentrating on not falling over, not falling out of your chair, not knocking your drink over, not getting a shoulder injury trying to operate a cardigan, there isn’t that much head space left for change. So you have to have realistic expectations about how difficult it’s going to be.

Natasha: For me, the pandemic really changed how I approached pacing. I was forced to reevaluate my priorities and decide which activities were “worth” my energy. 

And I think that’s true for so many people, whether they live with long-term health conditions or not. 

We were all forced to slow down, and for me that meant a chance to break the boom and bust cycle. It was going super well…until life got in the way and resulted in the worst flare-up I’d had in a long time. It was demoralising, especially since I’d had the best few months I’d had in years. 

Pacing, for me at least, requires constant work, adjustment and compromise. 

I’m now a few weeks into being a freelancer, and it has been a hugely interesting process, as I figure out how to balance all of that. 

I definitely spent my first couple of weeks being a bit overambitious and by the end of the day I was like a zombie. But, I’ve used the skills I’ve learned to reflect and adapt. And I’ll continue to do so.

Basically, I’ve got to the point where I like to think of all of this stuff as a bit of an ongoing experiment.

And, as Jo says, it takes time to figure out what works for you… 

Jo: It’s so, so variable that you can’t just go, “Okay, I’m going to be really prescriptive. Everyone gets a basic maths class, and then everyone gets these three bits of equipment, and this is how we’re going to work.” 

It’s not like that. Part of the reason why self management is such a long process, and we are talking years, is that finding the right combination of stuff, people and methods, takes a heck of a lot of experimentation. 

If you’ve got very little energy to experiment with, that takes years, and it is years. But what tends to happen is that eventually you’ll get to the point where you think, you know what? I’ve kind of got my life in order at the moment, and it sneaks up on you and it’s always a real surprise. I feel like that’s happening to me now.

I mean, I’m 31 now, I was diagnosed with hypermobile Ehlers-Danlos at 19, and then developed POTS when I was 21. 

Aged 21, I was at university training to be an occupational therapist, having realised at age 19, that my chosen career of outdoor adventure was not sustainable as a part-time wheelchair user, with chronic fatigue. 

So, I’d very quickly gone from rock climbing three nights a week, working in the forest, to actually being quite dependent on my mum for basically all of my meals, struggling with my mobility, falling over multiple times per day, unless I was sat down all the time. Regular joint dislocations, my decline was quite rapid, it was probably 12 months really. 

While I was training as an OT, there was the whole POTS issue, and then I had a migraine thing develop and there was another health crash there, that landed me in hospital for six weeks.

But what I’ve learned every time from this, is that the process of recovery is different for everyone and it’s different every time. But I have gone from, at one point was in hospital, couldn’t sit up on my own, was requiring two members of staff to get me to the loo. Six months later, I was sort of using a walking frame and getting around on my own mostly, or on crutches with lots of rest breaks, to now getting to the point, six years later, where my partner and I have our own home. I grow a decent amount of our fruit and veg in the garden. I’m running a team of hedgehog rehabilitators, and I’ve got students on placement with me learning to be better healthcare professionals. Every once in a while, I’ll just look at this and go, “I don’t even recognise what my life used to look like.”

And it really hits me and I’ll have these moments where I think, I can imagine what my life would be if it weren’t for key people in my life, teaching me the stuff that I now teach others. 

It’s a very emotional subject, and I think we often feel like having had a big decline, it is an impossible road back to recovery. Sometimes it is, but often it’s just a very, very difficult poorly documented, completely lacking in signposting road back to recovery. 

What you see as recovery changes as well. So, I’ve had this discussion quite a lot with the Long Covid community when I’m working in appointments with people who’ve got Long Covid, but for somebody who doesn’t have that long term experience of chronic illness, often recovery looks like fit and healthy, back at work, nothing wrong with me anymore.

Whereas for those of us who have been at it with appointments with doctors for years, decades in some cases, recovery is, I want to manage these things slightly better and be slightly happier. The thing that I work towards with my clients is actually, I cannot necessarily get rid of your symptoms, you will probably have these symptoms for the rest of your life. 

But it is possible to be symptomatic and happy. It is possible to be symptomatic and increase your productivity. It is possible to improve your quality of life, without finding a cure for what ails you. That’s what I work towards, because I think it’s realistic. It is achievable for a lot of people.

Natasha: One of the things I mentioned in the last issue of my newsletter is how so many of the medical interventions for long-term conditions are seriously lacking. 

This is, of course, due to a number of factors: from lack of research and lack of interest, to lack of resources (to name just a few). 

There can be significant limits to what medical interventions are possible, and even if there are some interventions that can help, it’s not a given that people will be able to access the care and support that they need.

A few years ago, during a flare-up induced mental health dip, I said to my GP “I really wish that there was somewhere I could go to get treatment. To get looked after. I’m so tired of doing all this myself”.

His response? “Unfortunately, most of it is down to you and your own self-management”.

And I knew that he was right. Up to a point.

Professor Rodney Grahame, a rheumatologist who specialises in hypermobility once wrote that EDS doesn’t have to be as disabling as it is.

And it seems like this is the case for so many conditions, too. After all, if people had access to timely diagnosis, adequate care – although really it should be excellent and exemplary care, as well as long-term support, I firmly believe that the rate of suffering and debilitating symptoms would be significantly less. We can’t talk about the role of self-management without this.

But for so many of these long-term conditions, finding ways to live, truly live and be happy, isn’t just about medication and physiotherapy. But the majority of 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. 

And that’s what is so often missing from these conversations, isn’t it? The actual living.

That’s what I love about people like Jo, and Clare who I worked with on my movement series and our episode in January about flare-ups (which I highly recommend, by the way). Their starting point is what is important to you in your life. And how can we find ways to get you towards that? 

Jo: There’s a lot of misconception around what occupation means. An occupation to an OT is anything you turn your mind to. So my occupation right now is podcast. That’s an occupation. That’s what we’re doing. Knitting is an occupation if you do it to enjoy it or to produce something. You are creating something, whether you sell it is completely irrelevant. It’s an occupation.

If I was to ask you personally, what brings you more joy or more value to your life, what do you get more therapeutic benefit from, your job or washing your hair? What would your answer be?

Natasha: It would’ve been my job, but I just left my job. But I suppose working on my projects and doing these things, I find greatly energy-giving up to a point when I’d start overdoing it and then it could be an issue. 

But I was talking to a friend the other day, we’ve launched a language learning newsletter, and he was feeling very poorly and you could see on camera he wasn’t doing very well. And then I had an idea for something, and he physically sat up straighter like he’d got that burst of inspiration when we’d started talking about something. And the physical change that came over him, was so interesting. You could physically see it. Although I have to say, when you have had dirty hair for a very long time, having clean hair can feel absolutely life changing.

Jo: Exactly. So it’s not necessarily about what’s more important or less important. It’s about, in the most general sense possible, what is my client’s priority? What do they want to do? If they want to be able to wash their hair more easily, we will talk about coping strategies for that, absolutely. But if the most important thing in the moment for that person is being able to crochet, that is what we will talk about. I think it’s very, very difficult to prioritise things for other people.

I can take a guess at…if I was to take every job you do in a week, every task, every whatever, I can guess what your priority list would be like but I don’t actually know. The only way I know that is to ask you. 

Even from your perspective over time, your priorities shift. It may be that if you’ve got a project that you are absolutely loving, writing content for that is such a high priority, but editing you’re less enthused about. These things change over time. So it’s very difficult to come in and go, “These are the three things we can talk about. Everything else is irrelevant.” And what if it isn’t?

So, I’ve learned in my job that being able to adapt quickly. If I can work with a client and we plan to talk about fatigue management and then they turn up to that appointment with tears streaming down their face having just struggled with a massive anxiety attack, I’m not going to go, “Okay, but that’s irrelevant because we planned to talk about something else.” We’ll address the issue that’s most important here. We’ll talk about the biggest thing in their life. And at that moment it would’ve been anxiety.

So, these things shift and change over time and that’s natural and normal and completely should be expected for anyone in their life to be having changing priorities. So it’s very, very difficult to kind of, in a general sense, lay out exactly what I do in a situation because it’s all individual. 

What works for one person doesn’t work for somebody else. And what works for me will be very, very different to what works for every single person I work with or interact with on a weekly basis.

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Natasha: Today’s episode is sponsored by Abnormal.

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Natasha: As much as I love talking about pacing, it’s important to remember that it’s not all rainbows and butterflies. While it’s an amazing tool, it’s not a magic cure.

If you live with persistent pain or chronic fatigue, you’ll know it’s often unpredictable. You can do all the pacing, all the planning and all the work to avoid a flare-up, but ultimately sometimes life just doesn’t go to plan and you will still face set-backs, big and small. That absolutely happened to me last year.

Jo: You can pace like an absolute pro. You can pace so well, you can write a book on pacing and there will still be times in your life where it all just goes a bit wrong through absolutely no fault of your own.

We do not have control over everything. Flare-ups sometimes just happen for reasons that medical science has not fully explained yet. These things happen. It is not on you. It is not your fault if everything goes wrong. I literally teach pacing for a living and yet still overdo it. I will still mess it up. I will still do too much, or not enough, or not schedule things sensibly and end up brain fogged, and exhausted, and tucked up in a duvet for a week.

It happens. What we’re working towards is being slightly better at it, having slightly more consistent symptomatic-ness, having slightly more consistent energy levels, and a slightly better ability to predict how functional will I be on Tuesday next week. 

If you are making progress, fantastic. Bravo. Round of applause. It does not have to be perfect in order to be good or better than where you were before. It will take you 10, 15, 20 years. Every single time something changes in your life, you have to slightly rejig your pacing, your thought processes, your coping strategies. It may be that I could pace to a microscopic level. I could be super organised, but I would still need to use a wheelchair to get to the Co-op because I still get tendonitis from walking.

These things happen. And pacing alone, it’s not designed to be this standalone solution. It’s designed to be part of a network and part of a system of people and strategies and equipment. 

So I pace a lot, like a lot, like on a daily basis. It’s my normal, but I still need splints and braces, tape, pain medication, anti-inflammatories, wheelchair, beta blockers, heart rate monitor. 

I still need all of these things to kind of boost me up because pacing alone is not enough. So I think it can be very, very difficult to kind of balance all of this stuff, but it does get easier with practice, right up until there’s a global pandemic and all of your routines fall apart and you lose access to your healthcare professionals. And then you have to start again.

There’s no shame in that. That’s normal. That’s life. That’s what happens. And I think all too often, healthcare professionals put it across in a way that kind of internalises a lot of this guilt around, I haven’t been able to manage, so I failed at self-management. You haven’t been able to manage because you’re living with something unmanageable. Complex, longterm, unpleasant health conditions are a challenge and it’s an ongoing, constantly evolving challenge.

So if at any point in your life you go, you know what? I can’t solve this problem on my own. I need an OT or a doctor or a physio. Get one. That’s what we’re here for. It’s okay not to get this perfect on your own 100% of the time. I would be astounded to think that any of my clients would never, ever need help again. Like it is mind-boggling to me. I’ve still got my own network of healthcare professionals I fall back on. 

I’ve still got a rheumatologist I can call or an orthotist or a physio or whatever. This is about creating a system that allows you to live to the best of your abilities the majority of the time-ish. And it may be that sometimes actually the best thing for you is to curl up under a blanket in a ball and live off microwave food for a month because you just need some time to curl up into a ball, under a blanket. We all have days like that and times like that.

Natasha: Honestly, as I was writing the script for this and listening to that clip from Jo, I got a little teary. Because she’s right. Living with chronic conditions is bloody hard.

Life happens. And we can’t perfectly control all our circumstances to make them ideally suited to managing our health as well as possible. It just doesn’t work like that.

Speaking of life, how does pacing work when we want to do a THING that we know might just be a bit too much? 

Jo: If you are thinking about doing the thing, so let’s just say it’s a wedding as an example, if you are thinking about going to a wedding and you know, you know you do not have enough energy to safely get through that day with spare room and you think, “Okay, how on earth do I manage this?” you start planning your entire week. So for the kind of week running up to the wedding, a few days running up to the wedding, do absolutely everything you can to prepare.

And that may be batch cooking meals for afterwards, laying out your outfit, pre-selecting your shoes, having your makeup, if you’re going to wear any, laid out in the exact order you need to apply it. You can pre-pack your handbag. You can get pillows in the car. 

I would set up an autoresponder for your email saying, “Leave me alone. I’m in bed.” You can turn off all your social media. You can get prepared in every single way possible so that on the day of the thing, of the wedding, all you have to focus on is getting through that day.

What you then do is look at how can you adapt that day in order to get through it as best as possible. So do you have mobility aids and yes, you can coordinate them to your outfit, but they might still be useful. 

In between the ceremony and the meal, do you go find somewhere quiet and lay down for 10 minutes with your eyes closed, listen to a podcast? Do you find somebody who can be your person? And you just say, “You know what, when I give you the nod, get me out of here and lay me down somewhere quietly.” Do you in advance speak to the bride and groom and say, “If I’m laying down in your ceremony, I’m really sorry, but I need to be prepared for it.”

Do you take a different pair of shoes with you because you know that you’re not going to tolerate a whole day in the same pair of shoes? I was a bridesmaid recently for one of my best friends. I bought slippers specifically to coordinate with my outfit to wear after the ceremony. So I wore heels until they were married and until the photos were done, and then I wore silver sparkly slippers for the rest of the day. That was one of the things I put in place to modify the event to meet my needs. So that kind of thing.

The final part of coping with that is looking at how you can use your green activities, your recovery activities, the things that don’t cause you too much exhaustion to pace the day. 

So often there’s a tendency for big things for us to go, “I will get there. I will do the thing. I will get home as quickly as possible. And I will curl up in a ball.” 

Often, if you make an event longer, it’s easier to pace. So if you were to leave early, arrive at your destination and then lay down for 10 minutes, would you be going into the event more refreshed than if you’d just driven there and got straight out of the car?

Do you actually, after the event, think, “You know what? I’m going to have a 90 minute nap before I drive home, or I’m going to go and lay down and just listen to an audiobook or read a book, or do a crossword, or do something away from people to recover,” before you tackle the going home part. You may have been out of your house for longer, but what you’ve done is turn one big activity into a series of slightly smaller, more manageable ones, which tends to work a little bit better.

The other thing to think about is your recovery period afterwards. So if you know you’re going to cause a crash, this happens, we know it does, plan a realistic recovery period afterwards. 

So if I have gone to a conference, I know that I will need to have probably two fairly easy days afterwards. The first day of that is going to be pyjamas and blankets. Non-negotiable. If I had planned: walk the dog, spin class, an hour long webinar and meal out with a friend, the first thing I would’ve had to do in the morning is cancel all of that. And that’s a really awful way to start the day. From a mental health perspective, getting up and then immediately having to admit you cannot handle what you have planned feels bad. That’s not a good feeling.

However, if you have planned a realistic recovery day, so your entire to-do list is Netflix, pillow fort, Ben & Jerry’s ice cream, microwave meals and you get all of that done, congratulations. You’ve cleared your to-do list. Isn’t that a good feeling? It changes how you feel about rest if you go into it knowing that that’s what you’re doing, that it’s a conscious decision rather than your body going, “Activities? No, no. Good try. Get back in bed.”

Natasha: You were talking about some of the prep work that you would do for an event like this. Would you recommend that people also take into consideration the activities that they do beforehand? So would you recommend that they kind of taper down activities a little bit, not doing anything too much, maybe too many social things beforehand, in terms of like the bigger activities. What would you recommend?

Jo: Absolutely. And sometimes it’s tapered down as in do less. Sometimes it’s modify as in make it easier. Social events are a good one. Often social events, even just entertaining friends at your house, can be exhausting for a lot of people. Completely overwhelming. 

When I think about the percentage of my life when I could manage to host a dinner party, it is small. There are not many days where I think I could cook dinner for friends and get all dressed up and lay the table. In fact, we don’t even own a dining table anymore. There aren’t many times when I could have like a fancy meal type thing. But there are quite a lot of days in my life where I could invite friends over for takeaway pizza. And we do it on the sofa, under a blanket in pyjamas.

So modifying the activity to be effectively a pyjama party allows me to maintain a social life. It’s now got to the point where if I invite friends over to my house, probably 85% of the time they turn up in pyjamas because they know that that’s the level of activity that we’ve settled on. 

So that’s the expectation. And actually it works really well because my friends all work full-time, so they’re normally at the end of the day or the start of the weekend, the idea of having a pyjama party for them sounds pretty good. It’s like a relaxation thing. 

So often the things we do day-to-day to manage are actually quite applicable to somebody who’s just had a long week at work. So actually, yes, I’d like to see you, but it will be for an hour, no more. At an hour, you get out of my house. And it will be done in pyjamas. It’s okay to set firm boundaries and to modify things to meet your needs.

Natasha: Yeah, those firm boundaries, literally everyone I know, they look at me sometimes, they’re like, “You want me to leave?” I’m like, “Yeah, get out my house. Like just leave.” Or they’ll know that I’ll just disappear into my bedroom for a while and then I’ll come back out again. It’s nice having those boundaries where you can literally just look at someone and be like, “I love you. Fuck off.”

Jo: Yeah, absolutely. Yeah. There is a very particular look that says, “I love you. Get out of the way. I love you but go away.” 

And that’s a really, really useful thing to have. And actually communication is a really key part of this. So don’t try to convey that when you are at your absolute worst and you are really, really struggling because you won’t do a good job of conveying it. 

But if you’ve discussed this in advance when you are well, when you’re relaxed, when you are not brain fogged up to your eyeballs, when you are functional and you’ve had that discussion and said, “Look, in future, if we are having a social event and I give you the look, it means I love you, get out of my house.”

Jo: So being able to kind of pre-plan that and pre-communicate that means that when you are less able and you are really struggling, people know what these messages mean. They understand how to support you because you’ve planned it in advance.

Natasha: There were so many helpful and practical tips from Jo sprinkled throughout this episode, I know that I’ll come back to listen to it whenever I need a reminder! 

If you missed part 1 of our deep dive into pacing, do go back and check that out. 

In it, Jo gets to the heart of what pacing is and more importantly WHY it’s such an important tool for those of us living with long term conditions. 

I really cannot express how much Jo has changed my life. She’s amazing at what she does and I can’t thank her enough for taking the time to share her knowledge with us. I’ve linked her website in the description if you want to book in a session with her. I do this once a year or so for a check-in and find it incredibly helpful. 

A special thanks to our sponsor Abnormal. For a 7 meal free trial of abnormal worth £23.99, visit abnormal.io and use code RESTROOM at checkout.

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