On convalescence & chronic illness

This is the transcript for our convalescence episode of The Rest Room featuring Jo Southall.

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Natasha:

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

What do you think of when you hear the word “convalescence”?

To me, the word conjures up visions of an escape to the seaside, a chance to breathe the fresh sea air, holing up in some calm forest somewhere, relaxing with the view of trees and greenery. Or, if you’re really fancy, heading to the mountains in Switzerland. It’s the opportunity to disappear from the world and actually focus on rest and recovery, until you feel better.

But, we live in 2023 and the idea of “going to take the air” somewhere when you’re ill isn’t exactly how we conceptualise recovery and convalescence. And what does convalescence even look like in the context of chronic illness when a full return to “health” isn’t really on the cards.

Part of the reason I’ve been thinking a lot about convalescence is because I’ve been told that it’s something I need to do by my doctor. And it was the first time it was said to me explicitly. And as soon as I heard that, many months ago, I felt incredibly overwhelmed, felt a bit dramatically existential about it, and then put it to the back of my mind. But, if I’m being honest, my health has been on a downward trend for at least half a year now, and it’s getting to the point where I’m really struggling.

I’ve known for years that I need to convalesce, but stopping, really stopping, is something I’ve never been able to let myself do. I was always able to stop when my body forced me too, and I would rest just enough to get back to kind of overdoing it again. And even during that “stopping” time, I didn’t really think much about true rest or true convalescence.

I became able, over the years, to manage these ups and downs much better, thanks to things we talk a lot about here on The Rest Room: pacing, planning and prioritising. But there are times when external things happen beyond our control or things just get on a bit of a downward spiral and something needs to give.

And I’ve realised that, for the first time in my life, I need to take convalescence seriously. So, after this episode goes out, that’s exactly what I’m going to do.

It seems fitting, then, that the theme of today’s episode is convalescence. I’d actually booked this interview with my amazing Occupational Therapist Jo Southall months before I made the decision to take time away. I’d been thinking a lot about the concept of convalescence since my chat with Dr. Gavin Francis last year about his book ‘The Lost Art of Convalescence’ and I was sure that Jo would be able to put a practical spin on it, as she always does so brilliantly. And now selfishly I’m hoping I can take some of what we learn in today’s episode with me into my period of rest.

Something I learned from reading Gavin’s book is that in the founding constitution of the World Health Organisation, health is defined as:

“A state of complete physical, mental and social well-being and not merely the absence of disease and infirmity.”

But what if you have a long-term condition where a complete state of physical, mental and social well-being isn’t possible? Does recovery solely have to mean a total absence of ill-health?

To start our conversation, Jo told me how she contextualises “health”.

Jo:

I think health is sort of as being this fixed ideal point at which all of a sudden you become well and you realize your potential to be a healthy person, but it’s not how it works. So I think of health as a sliding scale and along that scale there may be different slider bars. Think of it like when you adjust your audio on a computer or like a phone and you can turn down notifications or turn up media. That’s the kind of thing I think of for health. So I may be physically well, but mentally and emotionally not having such a great time, or I could be psychologically feeling absolutely fantastic and physically it’s a disaster. Sometimes, often quite rarely those two things coincide for me to feel pretty good in most ways. Those times are really fantastic and amazing, but I’ve learned to adapt in different ways for the different things my body needs.

So when I talk to clients about this one, I talked to friends about this, it’s recognizing that although yes, you do have a chronic illness, you do have a chronic condition, there will be some element of baseline within that, and it might be a very wiggly, very chunky, very hard to decipher kind of baseline. But I think if we are really analytical, certainly looking backwards, if not looking forwards, we can figure out times where we were more or less well within that. And those are the things we need to start looking at and trying to spot, because actually a lot of the times we get very focused on the chronic illness component and maybe don’t pay attention to the bits of us that don’t have a diagnosis attached. So you can be managing your chronic illness very well, but if it’s wrecking your mental health in the process, then that’s still a problem. It’s just a problem on a different sliding scale.

Natasha:

So, if we are struggling and need to think about rest and convalescence beyond the day-to-day, how can we start thinking about incorporating that into our lives when we live with a long-term condition…

Jo:

I’m reading a really interesting book at the moment, and it is on the Lost Art of Convalescence. It very much talks about the things that you started off talking about, that we used to be able to go places and do convalescing. You were sent away or spent some time on a sanatorium, or family members waited on you hand and foot.

We’ve almost gone too far into the modern medicine way in that the mindset of modern healthcare is very much like science will fix everything. And if science doesn’t, then two weeks off will probably do the job. But for those of us who don’t find a handful of pills and two weeks off work is enough, there isn’t really a facility to go somewhere anymore. And that’s a crying shame to be honest, because those institutions did serve a purpose. But yeah, it’s a very interesting topic, and I think a lot of the time it is a mindset you have to get into, “I am doing a convalescence now.” Because you don’t have the ability to change your environment.

And changing your environment is a really easy way to get your brain switched onto a different mode. Do you know? So you go from work mode or home mode, you go to convalescing mode because you’re somewhere different. In the same way that you allow yourself to relax and have fun when you’re on holiday because you’re in holiday mode. I think trying to find a way to make that work, to make that shift in mindset is really, really important. This is something that I think a lot of people relate to with like home working as an example. So at the start of COVID, an awful lot of people had never worked from home and suddenly found themselves having to. They had very kind of similar issues often. And it was things like not being able to switch off at the end of the day, or accidentally working five hours longer than you should because you’re at your laptop, sitting at your kitchen table. It doesn’t feel like you’re at work, or not getting the same amount of work done.

It’s because of that mindset shift that it’s so difficult to switch from work to home mode when you are in your own home for both.

So finding ways to very definitively move yourself from one mindset to another is really important. And sometimes it can be really tiny, symbolic little things. So, I work from home. I will take my hair up or put my hair down as a change when I go to work. So for me, I’m putting my hair up in a bun, putting lipstick on, I’m ready for work. It’s like a uniform. It works in the same way. I’ve got myself in work mode and I’m ready for action.

So with convalescing, a lot of it is that mindset shift and giving yourself permission to say, “Okay, I’m in rest mode now. I need this and I’m doing this deliberately and it’s a choice and I’m in rest mode.”

Natasha:

I really relate to what Jo was saying about shifting your mindset into rest mode. When Sebastian and I went on honeymoon last year I was sure that it would be my two weeks to convalesce – to switch off and dissolve away all the stresses from the previous months. The reality was, even though we had a really wonderful time, part of me was waiting and expecting to feel better just by being there, and I couldn’t help but feel frustrated that I couldn’t bring myself to rest and relax.

And it can be even harder to give yourself permission to rest when you’re not by the sea in the South of France!

So how do we start to give ourselves permission to rest? And how do we understand what kind of rest is restorative?

Jo:

That is a very difficult series of questions to answer, because I think rest looks different for everyone, and what I find relaxing might be incredibly stressful for somebody else.

I think we often think of a chronic condition as being totally different from an acute condition. There’s an expectation that a chronic condition has an element of continuity where you just exist in a state of, “I’m not well,” perpetually. But actually, I think we can sometimes start thinking about a chronic illness as having acute phases, and in those acute phases, you sometimes need to treat it like an acute illness.

So I recently got out of the habit of wearing pajamas for long stretches of time. This was something I did during lockdown. I made a move towards having regular people clothes, but comfortable enough that I could rest in; that I could be comfortable in. And part of the reason for this was that I found myself blurring the line between rest days and work days, and rest time and work time, because I would find myself wearing pajamas as an easy way to save energy in the mornings so that I could put that energy towards work, and that isn’t necessarily a healthy mindset to be in.

So now, if I’m in convalescent mode, if I’m in rest mode, if I’m in my pajamas, I won’t just open my laptop and do one email. I’m in rest mode. There is no working. And I think being really firm with myself about that has been really useful in terms of that permission to be unwell, because I think we often think with a chronic illness, we’re not allowed to be unwell with it. We’re supposed to manage all the time this expectation that we’ll get to grips with it and then everything will be okay.

But actually, sometimes it isn’t like that. Sometimes it’s just really freaking hard, and you actually just need somebody to look after you for a little bit, or just take some time to be unwell, play the sick-person role, do the rest things, eat the good nutrition, get some fresh air at a window, and just not do work. And by work, I don’t just mean the thing you get paid for sometimes. I mean the everyday admin work, the adulting, the stuff you have to do to stop your house from falling apart.

Natasha:

One thing I have a bit of a bad habit of is pushing myself so much that I crash so badly that I have no option but to give myself the time to stop and rest for months. It’s something that I’m slowly starting to shift, but I find it so much easier to see rest as a means to an end. So, I was interested to hear from Jo how to go about starting to change that mindset…

Jo:

I could very easily get up on a soapbox and tear down the entirety of capitalism and society and how we’ve kind of ruined ourself with productivity. And we used to think about the fact that with the industrial revolution, all of the machines would do the work and it would allow us to have lives of leisure, except that the machines do the work and we’ve just filled other jobs into it, so we now work more.

It’s really interesting that quite often when I talk about pacing and convalescence, and actually convalescence is an extension of pacing to a certain extent, if you have to pace for productivity, because you cannot justify it to yourself in any other way, convalescence can be justified the same way.

So if you recognize yourself looking at those sliding scales and you’re sliding down to the, “I’m not well,” end, proactively taking time off, going to your GP and saying, “I need to be signed off sick, or I’m going to burn myself out,” is a thing you’re allowed to do. And the benefit of doing it that way is that you don’t burn yourself out.

And speaking as a voice of experience that I wish I had never experienced, recovering from burnout is really, really, really hard work. Really hard work. And I don’t ever want to get to the point where I have pushed myself so hard for basically no reason, other than I didn’t think there was another option, that I land myself in hospital again. I don’t want to do it.

And actually pushing myself to the point where I was that unwell because I didn’t feel like there was another option cost me a whole year at university. It extended my degree by a year and a half, because I just pushed myself so hard that my body throwed an enormous temper tantrum and decided not to function for a little while, and that was that.

So I think if you factor in the possible risks associated with not looking after yourself, with not pacing, with not taking that time, it’s much easier to justify. Because two weeks off work now, four weeks off work, six weeks off now is still better financially, responsibility-wise and health-wise than wrecking yourself and having to spend a year clawing all the pieces back together, into some kind of semblance of function.

Jo:

I think for a lot of people there’s an element of kind of escapism here. We need a distraction from how unpleasant things feel physically if we start actually analyzing that. And this is why distraction is such a fantastic pain management strategy because it takes you away from pain. Same for fatigue, same for all kinds of other symptoms. We need some kind of distraction, or what we’re left with is, wow, I feel really terrible right now. Everything really hurts. I’m exhausted.

That’s not a fun thing to recognize, but it sometimes is an important thing to recognize. I think there is an element of kind of workaholic nature for some of us. As an example, you’re told you need to convalesce and your gut responses to produce a podcast about convalescence. I’m not invoicing you for this afterwards, but a therapy mode is engaged.

But yes, I think there is a lot of us, we kind of have a bit of a weird reaction to rest and that we feel like it has to be justified or quantified in some way. And sometimes you just need to try it and see how you feel. And there isn’t an exact science as to if I was to take any random person who’s currently a bit burn out. I can’t quantify how much rest they need and in what way they need to do it because of those personal individual differences, but also because of the way our bodies process stress differently.

Some people will have a much bigger tolerance for putting up with stuff than others. A lot of us with chronic conditions, our bodies are already pushed quite hard and our time is pushed quite hard, and psychologically there’s a lot going on. So there’s a limit to how much extra stuff you can pile on top of that before function starts to decrease and we start to not be able to do things quite as well.

And I think we often go much too far down that road before doing anything about it because we’ve got used to tolerating a certain level of putting up with stuff. But what I see so often in my work is that we start putting up with stuff that’s actually fixable. So I have chronic low back pain, I have had since I was 13 or 14. That doesn’t mean that I don’t modify my behavior for a severe back pain flare up. What it means is there’s a baseline level of kind of background noise unpleasantness.

When there are peaks and flares in that I will do something about it. So I will actively go and manage my pain. I’ll go and get a tens machine. I’ll change how I’m sitting, I’ll fidget. I will do my physiotherapy exercises. I’ll wear sports braces, corsets, all kinds of other stuff. I’ve got medication to deal with that.

All of these things are a response to that symptom and they’re still worth doing, even though that symptom probably isn’t ever going to go away, but it makes it manageable. So I think we need to take that approach a little bit here in that what is a manageable amount of stress in our lives, a manageable amount of stuff to put up with. And be really, really proactive about keeping that manageable.

Rather than letting things slip a little bit and then reactively trying to claw that back again, getting on top of things and saying, actually, I can see the warning signs here and there will be warning signs. We just gloss over them. So from a fatigue management perspective, one of the things I’ve noticed about myself is that my typing gets much less accurate when I’m tired or when I’m pushing myself past my limits.

So one of the things for me that indicates that I am pushing myself consistently too hard is that when I first start typing, when I first open a document, it starts out inaccurate. And that to me is a sign that I’m not giving myself enough time to recover. I’m just constantly working at a kind of push past my limit state. That’s a really simple obvious thing because you can type a page, look at a Word document and go, wow, that’s nothing but red squiggly lines, and where it isn’t red, it’s blue.

So it’s like a visual thing for me that red squiggly lines is now a measure of my fatigue and the stress that I’m walking around with. And there will be things in everyone’s lives that do that. You just need to learn to work out what they are.

Natasha:

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Natasha:

I want to start seeing convalescence as part of a wider strategy when it comes to my overall health. A chance to get back to a baseline that feels more manageable for me. And Jo says to achieve that, I should start by thinking about three things…

Jo:

There are three things to consider here. So the first one is presenteeism, the second one is the benefits of a plateau, and the third one is the stress bucket. So presenteeism is basically the opposite of absenteeism and it’s where people, particularly chronically ill people, turn up to work when they really, really shouldn’t. And I’ve spoken to so many clients and so many friends who have gone to work when actively very, very unwell, because they feel like they have to. And there’s this level of expectation that you should be able to cope with a new illness because you’ve coped with a chronic one. But that’s really, really not how it works.

And actually, a lot of that is we get so good at masking how unwell we are. Our managers, our colleagues, our peers have absolutely no idea how awful we can feel and still be in the office. So when you feel absolutely horrendous because you are used to hiding symptoms, you continue to hide that, and nobody turns to you and says, “Go home, you look like death warmed up. Just go look after yourself.” Whereas somebody who doesn’t have that chronic experience doesn’t mask, doesn’t have the coping strategies, goes into the office, pours himself a cup of coffee and spends 10 minutes detailing how awful they feel because that’s the normal human way to deal with feeling awful.

Natasha:

There’s also something on that, and I don’t know how often you’ve heard this with people that you’ve worked with. I found that actually that pushing through and using my adrenaline was also a huge coping strategy because I knew if I stopped pushing, that’s when I crashed. So I would do everything in my power to keep pushing through and keep pushing through and keep showing up, because it was a way for me to kind of be a little bit giddy on my adrenaline. Which helped me manage and ignore how I was feeling, but also because it was a way of putting off that inevitable crash, of showing up, not even for other people, but showing up for myself because I didn’t want to crash. Over time, learning that that would make the crash worse. But it was the only way that I felt that I could have semblance of what I wanted to have as a normal life in my early twenties.

Jo:

And this is very much linking in with the whole stress bucket thing, which was the second thing, third thing, it was one of the things I wanted to talk about. So the stress bucket, when we think of carrying stress around with ourselves, and a brilliant, brilliant colleague of mine, Kim Clayden, kind of told me about this and I think it’s fantastic. So the stress bucket, we talk about imagining a bucket and every little stress that you have fills this bucket up a little bit. Now, living with long-term conditions adds a considerable amount of stress to a body. And we’re not just talking about, “Oh, I feel a bit stressed because work was busy.” We’re talking about biophysiological stress on your body, the impact on your body of running on cortisol, adrenaline, caffeine, and determination is not good. And it’s documented in an evidence-based way. There is scientific backing that tells us we shouldn’t be doing this long term because it’s bad for us.

When you’ve got your stress bucket chronically three quarters full, and you get a cold, that’s enough to push you into a major crash. Because your stress bucket is three quarters full already, it doesn’t take much to tip you over the edge. Whereas if your stress bucket is mostly empty, a cold is a minor inconvenience. And I think this goes some way to explaining why people who have long-term conditions, particularly anything that impacts your energy levels, really, really feel it when they get ill. And it’s because they’re working at such a highly stressed rate and they’re expecting so much of themselves. And part of that is unavoidable that a little stressor for a regular person is just too much. And I’ve certainly kind of noticed this personally. The more I learn about my body, the more I work within my limitations rather than pushing them. The better I cope with being regular unwell, like muggle illness, do you know, cold sore throats. The sorts of things that regular people get sick with, not the random things that require a specialist referral.

And it’s really interesting that actually you can function for a really long time at high stress levels. A lot of people do, but if you push that consistently for a really long time, the crash at the end of it is going to be horrendous. Whereas if you can consistently keep your stress bucket fairly empty… By fairly empty, I don’t mean, oh, you’re never going to be stressed again, but just enough that you can survive a cold without any major repercussions. Yes, you might have a bit of a blip here or there. You might need the odd day off or the odd two weeks off, but it’s not going to be six months off or a year off.

And I think it’s being proactive about that is really, really necessary, particularly for those of us with long-term conditions, because we are so close to crash at any one point. And I did spend a decent amount of my life being one cold away from needing an ambulance, but I don’t feel like I’m there now. And because I’ve been so proactive about it, I’m now able to do more without fearing those big crashes, because I’ve emptied my stress bucket effectively. And that kind of gives me a bit more wiggle room for disasters. I’m not fully expecting every single disaster to wreck all of my coping strategies anymore.

Natasha:

So everything you were just saying, is that also something that we should put into our conceptualization of convalescence? It’s not just about taking the time at the end. It is about this wider understanding.

Jo:

I think so, yeah. And I think particularly for chronically ill folks, for those of us with stress buckets that are very full. And that’s not necessarily just illness that fills your stress bucket up. It’ll be things like being a family carer, or having to work a lot, or being worried about your bills. All of these things are stresses and they can become chronic stresses if you have have to live with them for a long time. So if you’re in a situation where you have chronic stressors on yourself for whatever reason, you do need to be a bit more proactive about taking little, tiny breaks. And that may just be finding 30 minutes to laugh so hard you think you’re going to pass out with a friend. And actually, finding ways to decrease that stress is such an important part of life. And we often in times of stress default to self-care and productivity, we don’t leave time for leisure.

And I often hear people go, “Oh, I haven’t got time for that.” Make time for it, because if you don’t make time for it now, you’re going to need to make an awful lot more time for it at some point in the future and that won’t be as fun. But the other thing here is what I was talking about before is the benefit of a plateau. So I think there’s often this perception that you have to have a constant upward drive towards increasing levels of health. There’s a lot of pressure to keep doing the rehab, keep doing the physio, keep being fit and healthy to the point where nobody ever told me I was allowed to opt out of getting any more better. And I’ve spoken to clients about this as well, but you are allowed to just decide you’re better enough and you’re happy maintaining things.

You are allowed to opt out of rehab. And I think often through no fault of their own, healthy people who work as healthcare professionals have a very idealized view of rehab in that they expect it to be a somewhat smoother process than it actually is. And they expect the end point to be returned to perfect physical health. Not everyone, people that have worked in rehab for a long time, have seen this, but again, it’s something where nobody ever told me I was allowed to just decide I was better enough. So now that I have decided I’m better enough, it’s given me a lot of freedom to choose activities and to choose ways of doing things that work for me. So walking was a key example of this. I felt like I had to constantly push myself to be able to walk further, to be better at it, to achieve more, to get to the corner shop, to be able to walk faster.

So I would push myself not hard, but I would just keep a consistent level of upward trend of how far I was walking and how often I was doing it. And every single time I tried to do this, after six months, I would end up with bursitis in both hips, which would then mean that I couldn’t walk at all or I couldn’t walk very far. It also ruined my sleep. And then I ended up needing steroid injections. So there was a waiting list for that and a risk for having the things done. The third time round on that constant loop of bursitis, I decided that I wasn’t going to make myself walk, I was going to make myself exercise. So I’ve stopped pushing myself to walk. It remains a thing I suck at, but it’s been a thing I’ve always been a bit naff at.

So that’s not a massive adaptation. So I will use my wheelchair to get to the corner shop so that I can do Pilates when I get home. I’ll use my wheelchair to go to a hospital appointment so that I can do gardening. It’s that compromise of, yes, I’ve plateaued my walking, but I’m still improving my physical fitness. So recognizing that kind of plateau, being able to go actually, okay, I’m all right here. I don’t need to be on this constant upward, exhausting effort of rehab. I can just maintain and then focus on another area of my life for a little bit. You’re allowed to do that, and it’s actually really beneficial.

When I head off shortly for my period of convalescence I won’t be moving to the seaside to breath in the sea air or escaping for weeks to the middle of nowhere (as dreamy as that sounds). Instead, I will very much still be at home, in my bedroom – where I am right now recording this podcast.

When we talk about convalescence at home there’s a big elephant in the room that I felt was important to address in this episode… technology! It’s so easy to pick up our phones, scroll through Instagram, flick through the endless amount of TV channels, listen to a podcast! Of course technology has wonderful benefits – we’ve seen that more than even in the last few years – but has it destroyed our ability to convalesce? And has tech impacted our ability to tolerate boredom?

Jo:

It’s really, really interesting that boredom came up because one of the things I wanted to get into this talk somewhere was that boredom is a really useful indicator of health. So I found during my kind of worst fatigue periods, I’m so tired I don’t experience boredom. Because what my body and my mind needs is less of everything, and I don’t get bored. And for me, it’s almost become an indicator that I’m on the mend. I’m on the upswing of this flare up when I start getting bored, and that’s a really nice indicator that I should maybe go and do the thing. And it’s just really interesting that I think we often see boredom as a really negative thing, or we see it as a void that needs filling. But sometimes boredom can be quite useful in the sense that it is an indicator that your capacity to do is maybe greater than what you’re doing. And that’s actually a really useful piece of information.

But I think technology is almost a separate issue in that we can, and this is often true for people who stay home a lot of the time, whether that’s for fatigue reasons, whether that’s for social reasons, whether that’s for work responsibilities or budget or whatever. Technology fills a lot of different roles. So I use technology massively for work. When I am convalescing, I don’t want to use technology for work, but I absolutely do want to use technology to fill the social aspect. I want to catch up with friends. I want to hear how people are doing. I maybe want to learn a new craft skill, or I want to improve my creative projects. So YouTube can be really useful.

But the difficulty with things like major social media platforms is that a lot of us have rolled all of our life up into one. So you go online to look at social stuff and there’s work stuff right in front of your face, and it’s very hard not to accidentally reply to an email, even though you’re not really supposed to be doing that today. So sometimes I think it’s something as simple as actually, if I really am in proper rest mode, I sometimes leave professional Facebook groups temporarily and then I’ll come back two weeks later. But it just means that my timeline doesn’t have work mode in it. My timeline is full of friends and hobbies, and that makes social media a much less daunting place to go because it means that it’s just the elements of that that bring me joy.

Equally, I’ve seen quite a lot of people do this with some success is just get rid of an app but keep messaging. So friends can message or the other way around, get rid of messaging and keep apps so you can doom scroll. Part of it is about working out what you are getting out of it and whether or not that’s beneficial or if you’re getting it because it’s necessary for work mode or productivity mode or whatever. And actually it’s okay to experiment with getting rid of bits of that and keeping other things. I certainly, looking at social media, there are some platforms that are for me in my brain associated with work and others that are associated with rest and joy. So I’ll often kind of wander between things so that I’m using one platform more than another. If I’m in work mode, I’ll kind of professional persona goes on and I’ll do professional stuff.

But that doesn’t mean that I stop using social media and I stop using tech when I’m in rest mode. What I will sometimes do is just shift to other tech. And it may be that actually reading is one of my key restorative activities. I love books. I absolutely love it. And for me, you can almost get that same escapism from, you can travel through reading. You can learn things. You can experience things through reading or through audiobooks, or even through just a really good Netflix binge. Maybe that’s our low energy way of getting off to the seaside and convalescing like the Victorians did. Maybe that’s how we do it now in a high-tech kind of way.

Natasha:

And also I find that reading, especially with books, is it’s not fragmented. Doing anything on my computer, even if I close the apps, it’s so easy to open another browser window. It’s so easy to open up your chat apps again. It’s so easy to do that. And I find that a big sign for me actually that I need to step away is that I become more fragmented. I become quicker at switching between things, and I’m going from one thing to the other more and more often. And that fragmentation that I get from my phone and I get from my laptop makes me feel worse. But the worse I feel, the more I do it. And so breaking that cycle is such an important thing for me. And even just recognizing it I think was really helpful that it was this habit that I found so easy to fall into and one that made me feel so much worse.

And so having things where you just focus on one thing at a time was really, really important for me. And I think because books, if you’re reading, as soon as you look away from the page, you’re not reading anymore. So just being able to have that focus, even if it’s for a short amount of time also felt like an escape. I can’t visualize, so I can’t escape to the seaside in my brain. But I could still be out of this kind of click, click, click, click, click world and just focus in on one thing. Whereas if I was reading that on my computer, I’d be reading three different things concurrently, talking to three people, checking my emails, waiting for a notification. Oh, FaceTime’s popped up on my screen.

Jo:

I completely agree. And I also wonder if there’s an element of fight or flight in there when you start running off nothing but stress hormones. Except the flight is just an never-ending flight between different social media apps. But yeah, I do think finding a way to switch off just a little bit and to get outside of stresses can be so useful. And my partner, bless him, he laughs at me because I’ll cry at TV programs all the time, and it’s because I’m so invested in that program. I have moved out of my own life and I’m living life alongside the TV characters. So I will laugh and I’ll cry and I’ll experience a full range of emotions along with the TV characters.

And my partner thinks it’s hilarious that I can just sit there and get so upset about something that is fictional. But actually because I’ve used it as an escape from my own stresses and my own dramas and my own whatever, I am more emotionally invested in it because I’m entirely invested in that program. When he watches TV, it will be like doom scrolling, app, watching a bit of TV, also checking the score for something, flicking between programs, going to go and get a cup of tea, come back again. It is that fragmented, bitty approach. Whereas when I need it, I can fully just immerse myself in a program and then that’s it. That’s where I am now.

Jo:

There is one thing that I think is worth mentioning and that is something that an awful lot of people with long-term conditions do, and that is to not bother telling their GP about half of the stuff that’s going on. There’s just an inherent kind of, “I’m going to self-managed this,” to the point where your GP, who is your primary gateway to all other healthcare and all kind of social support, GPs are there for that purpose a lot of the time, has absolutely no idea what your normal day-to-day looks like. And the difficulty with that is that when you go to a GP and say, “I think I’m a bit burnt out. I really need some time off,” they don’t have the context of your life needed to make a clinical decision about that. I think it’s really, really useful for healthcare professionals in general to know what’s going on in your life, even if it’s not fixable. It gives context for clinical decision making. This is one of the really interesting things about my work when I take new clients on. I’ll ask a whole range of questions and it is things like, “What’s your social life like? What’s your relationship like?”

Things like physical intimacy are really important questions. Things like what you do as a hobby, what your priorities are. Often, within the NHS, healthcare professionals don’t get that context. When you’re saying you are really, really struggling, what they’ve got to go on is how many appointments you’ve had, how many prescriptions you’ve got, how much work you’re missing. They don’t have how many hobbies you’ve given up in order to make room for work. They don’t have how much of your free time is taken up with health homework, rehab type stuff. I think it’s often quite limiting and it adds an awful lot of pressure to doctors who have to make these decisions about whether you are signed off sick or not. The information they’ve got to make that decision with is massively incomplete. One thing I’ve often asked my clients to do and I’ve set it as homework, because sometimes you just need to be told you have to do something in order to give yourself permission to do it. And the homework will be, “I want you to write an update for your GP and just email it to them or post it or leave it at the doctor’s surgery. Because even if it’s not fixable, if there is nothing they can do to improve your life in any way, shape, or form, they should still know how difficult it is.”

Natasha:

That’s so interesting, because also if the last time you saw your GP because you don’t bother going was two years ago and you were on an upswing, the last piece of information they have from you is like, “Oh, I’m doing really well comparatively,” but they still don’t know what that means in relation to everything else. No, thank you for including that. I think that’s amazing.

I wanted to end on something practical. If someone was coming to you… And it doesn’t have to be me, but if someone was coming to you and said, “Jo, I’ve been told I need to convalesce. Jo, I feel like I need to convalesce. Jo, it’s all too much. I know I need to take a step back.” But it’s something that they really, really struggle with and it’s something that they can’t go off to Switzerland or go to a forest or it has to be within the context of their everyday life, to some extent they’re in their own home. How would you start working with them and what are the first things that people should start thinking about if they want to or need to start? I can’t think of any other word than convalescent journey and I hate the word journey, but just if they want to get started on a period of convalescence, where do they start?

Jo:

I think the first thing to consider is that recovery of any kind always takes longer than you think it’s going to. A lot of people try to get by with two weeks off work or four weeks off work and then they’ll go back. But what happens is they’ll have two weeks off, that’s just about enough time for them to sort of get into convalescent head space, to sort of start getting rid of some of that stress bucket, and then they immediately go back to working the same number of hours they’re left on. I’ve seen so many clients do this, where it’s little bits of time but they’re never giving themselves and never been given enough time to properly get out of work mode, to properly de-stress, to properly take the time to work out what they actually need in terms of convalescence, and then to actually do that.

Once you’ve done that, there should be a phased return. I genuinely think anyone who’s off sick for any more than a week should have a phased return to work. I mean like a properly phased, agreed with HR laid out phased return and maybe some people don’t ever get back to what they used to do and that should be okay. I think things like people who are dealing with things like Long COVID. An awful lot of the time, you’re off sick, you’re very unwell, and then you’re expected to just drop yourself back into an office space and function as if you were never gone. Having spent two weeks not getting up at the same time, not having meals at the same time, not having to wear work clothes, not having to deal with an office full of loud people and the sensory processing required to have a phone call whilst typing. All of these things are skills that you can lose over time.

There is a period of convalescence where you need to not do those things, but you should also take the time to learn to do them again slowly. That phased return is as important as the actual convalescence. Whether that’s work or not, a phased return to doing things is the same thing. Things like, I don’t know, gardening… I absolutely love gardening. I spend half my life in the garden when it’s not freezing outside, but I fully expect in spring it will take me quite a long time to get back up to my previous levels, because in winter I haven’t done it. As much as I’ve stayed physically fit-ish, I haven’t used the same skills, done the same tasks that I was doing. In convalescence, yes, there is a necessary need to stop doing the things, but you also need to think about how you’re going to start doing the things in a way that does not immediately fill your stress bucket back up again.

I think often the reason we can’t get out of everyday life mode and into convalescent mode is that the little voice in the back of our head goes, “Well, you’ve only got two weeks and then you have to go back to work. You’ve only got X amount of time, then you have to go back.” Letting yourself have that conversation about, “Actually, if in two weeks time I’m not ready, can I have more time?” And the answer quite often is yes. Thinking about actually not giving yourself a hard deadline in which time you need to be well can be really, really useful.

Like you were talking about with your honeymoon. It’s only, two weeks, that’s lovely for somebody who’s got a low stress bucket and can immediately switch themselves into holiday mode. But if it takes you a week and a half to wind down, you get quite a little break and then you need to psych yourself back up again to rejoin the real world. Sometimes it’s about giving yourself more time and not having that really hard deadline of “I must be ready in two weeks. I will go back and I’ll do the adulting.” Maybe just have a conversation with the people around you about actually not having that hard deadline and giving yourself time to plan a return in a reasonable way so that you are not constantly thinking about the return while you’re trying to get into the right head space to do the rest.

This conversation with Jo really helped me to put a lot of things into perspective when it comes to thinking about what a realistic convalescence can look like when you live with a long-term condition.

I wanted to end this episode with some wise words from a couple of my Substack subscribers, Bryony and Bea, about how they integrate concepts of convalescence into their day-to-day lives with chronic illness. Let’s hear from Bryony first.

Bryony:

I’d always assumed that convalescence was a move from complete illness to complete wellness, but now I think that convalescence is more of a shift away from the intensity of my symptoms into a gentler relationship with them. Convalescence for me is very much a time of supported restfulness that prepares me to reengage with my normal activities. As an example, I had a bad night the other day and decided to have an extra hour of rest in bed first thing. And yes, I could have pushed myself to get up, but that was my specific convalescence this time, and without a doubt, that extra rest time really helped me have a better day in general.

Bea:

Hi, this is Bea. So, I’ve had an energy limiting medical condition for two years. While I hope that I’ll get my previous energy level back one day, I’m also working on accepting a new reality for my body. Convalescing is more of a process or a daily practice than a one and done, rest and recover, boom, you’re fine.

I guess for an example, I had COVID last summer. I was in bed for a week, really sick, slept a lot, rested a lot, drank loads of water. And then when I started recovering from COVID, I actually burst into tears because it was amazing to feel my body becoming well in the way it’s supposed to. Whereas with ME/CFS an for the past two years, I haven’t experienced, that no matter how well I take care of myself.

So for me personally, right now, convalescence means getting enough rest, sleep, nutrition, activity, things that feed my soul to keep my health stable so that I can live well every day. But I think self-care or personal responsibility is just a tiny portion of what you need for convalescence. It’s much more structural and cultural.

I’m able to make convalescence a daily practice because I have lots of support. Not only from friends, family, and my amazing partner, Mike, but also because I have resources like private health insurance and income protection from my previous job.

So, I live in the US where that sort of late capitalist productivity obsession, extracting value from every moment is a real thing. So, at first it was helpful to think of rest as productive, recharging my energy to get more done in this sort of productivity cultural way. But I think I’d like to see a cultural shift and a value shift away from productivity where we all value doing nothing as part of a fulfilling life, and where everyone is supported to take care of themselves when they need it.

Natasha:

A huge thank you, as ever, to my Occupational Therapist Jo Southall for taking the time to share her wisdom. As always, I’ll link her details in the episode notes if you want to learn more about her work.

And I just want to take a moment to say thank you to everyone who has supported The Rest Room and my writing on Substack over the last year or so. The truth is, I don’t know when I’ll be back, but I hope the content we’ve created has made some small difference to your life.

I’ve written a little bit more about going on convalescence on my Substack, which you can read at natashalipman.substack.com.

Thank you again to TGA Mobility for supporting The Rest Room. Learn more about the new, foldable, Whill F powerchair, and their other models by visiting tgamobility.co.uk. And get 10% off new scooters and powerchairs with code RESTROOM10.

Aaand that’s all from me… for a little while at least. Thanks so much for joining me in The Rest Room. Ta ta for now!

On convalescence & chronic illness

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