How to survive (and enjoy!) the festive season with chronic illness

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

Since we’re now well into December, it feels (just about) acceptable to start talking about the festive season. Christmas is a weird one for me because I don’t actually celebrate it (although now I kind of do in Germany with Sebastian and his mum) but I so often get asked how best to navigate this time of year when you have a chronic illness. 

Whether you celebrate Christmas or not, there are a lot of things that can come up at this time of year. You might find your social calendar is suddenly filling up with party and meal invites, you’ve got to find time to buy and wrap presents, write cards and of course spend time with family. It can be a lot for anyone – especially for those of us who experience an increase in fatigue or pain symptoms when we do too much. 

Add to that the management of expectations: both your own about what’s doable for you, and the expectations of the people who love you and want to spend time with you. 

To help us navigate these tricky waters, I’m pleased to welcome back my brilliant Occupational Therapist, Jo Southall, who will once again be sharing some of her amazing insights, as well as tons of practical tips that you can put into action from today. 

And just FYI, we’re talking about the festive period, but a lot of what Jo and I discuss translates depending on which holidays you personally celebrate….or even just any kind of big activity that you want to do throughout the year.

So with that in mind, when we think about managing a big event or a busy time of year – where should we start?

Jo: So, the first thing I always start with is a little bit of a perception check. I think, a lot of the time, when we’ve got a busy festive season coming up, we put a lot of pressure on ourselves to do all of the things, to go to all of the places, to dress up, to make the house look like some kind of winter wonderland. And yet, the things that matter most, generally speaking, are having a nice time with family. And I think we can sometimes lose track of what is really important when we’re kind of drowning in expectations.

So, I often ask people, “If you were the healthy person, and you had a loved one with a chronic condition, and you knew that they were exhausting themselves for the sake of this perceived need to be perfectly festive, how would that make you feel? How would you talk to that person? What would you expect them to achieve?”

And I think we often have much harsher expectations for ourselves than we do for anyone else. So, often turning the situation around to, actually, not “What can I do? but “What would you say if you were giving somebody else in your situation advice?” It just helps to be a little bit kinder to ourselves sometimes.

Natasha: Why does it always come back down to that? It always comes back down to needing to be a little bit kinder to ourselves. And the last session I had with Jo, that literally was the takeaway with that in our personal session.

I think that’s a really good point. And as you said, we’re always a lot more unkind to ourselves than we are to anyone around us. I think one of the challenges with something like Christmas or birthdays or weddings or anything that is a “big event” is that often they’re things that we really want to participate in. They’re things that we want to be able to take the most advantage of and do all of those things, like decorating the house and having a big meal and preparing things and spending time with the family.

So, how do we, whilst trying to be kind to ourselves, how do we then also balance, not just the expectations of others, but the expectations and the desires that we have to be able to participate in these things?

Jo:

I think a lot of this comes down to compromise. So, do you need to decorate the entire house, or can you decorate the room you are likely to spend most of Christmas in? Or do you need to dress up in a fantastically festive series of sparkly, ornament-based accessories? Or can you just have festive pajamas?

If you start to think about what you want to retrieve, a friend gave me some brilliant advice, and it’s about maximums and minimums. So, if your ideal version is to have your entire house looking like Santa’s grotto, what can you do as your minimum? And if your minimum is just putting a wreath on the front door or lighting a few candles, great. You’ve got that as a back-up option. But actually, if you can do a little bit more of that, what’s the next step up? How do you kind of bridge that gap between the absolute minimum you can achieve and what you really, really want as an ideal scenario?

So, it may be that you just decorate one room. It may be that you decorate a hearth or a fireplace, rather than bringing in a six-foot tree from somewhere. I think this is particularly important if you’ve got kind of mixed festive seasons going on.

So, I personally celebrate the winter solstice on the 21st, which gives me a very short recovery period to be ready for Christmas with the rest of my family a few days later. And actually, having thought about that, the things I like to do for the winter solstice are very much revolving around comfort and relaxation because, for me, that’s what’s important this time of year, is having that ability to relax and recover and reflect on what I’ve done so far this year and what I’m going to do later on and just spend time with the people who matter.

So, I’ve modified what I want to achieve, to make it a little bit more pajama-ry than it would typically be because that allows me to do multiple celebrations in a short period of time. Whereas if I was dressing up like I was heading out out, I probably couldn’t do two events that close together.

Natasha:

How do we deal with expectations of others during this time? From a lot of people that I’ve spoken to, because I don’t celebrate Christmas, this isn’t really something that has ever bothered me, but there is, for a lot of people, an expectation that you need to go and spend a whole day with the family, a few days with the family. You have to sit up at a table for a long meal and then do more social things. And as we know, for a lot of people with chronic pain, chronic fatigue, that just is not feasible.

So, I think there’s two conversations here. There’s the conversation about, practically, how do we get through some of these events, which I think we can talk about after. But one of the things that I have seen come up again and again and again whenever I put questions out to people is, “How do I deal with the expectations of others that don’t understand my condition, that think I’m being antisocial, that think I’m being rude, that think I am not doing what I should do?”

And we can talk about the shoulds obviously, but this is something that I think, for a lot of people, even if in their head, they want to be kind to themselves, if they have these expectations coming from others, how do they go about trying to navigate that?

Jo:

I think a lot of this often is exacerbated by the tendency of chronically ill people to pretend to be much healthier than they actually are, 95% of the time. So, part of the difficulty when you get to expectations of any kind is that the vast majority of people in our lives have absolutely no idea what our day-to-day reality looks like. And they certainly have no idea what the recovery period from trying to be normal for a 24-hour period looks like.

So, the starting point is often having a really honest conversation and explaining the ways in which the ideal social event is really not ideal for you at all. And if you can get that information across, what the question basically boils down to is, “Do your loved ones want you to physically suffer for Christmas?” And that’s the question you have to ask them.

And I think sometimes being really blunt about that can be useful because people often don’t think about it in terms of actually, “I want you to join in with this social event because I love spending time with you.”

But if that’s not in your best interests, actually calling somebody on that and going, “Well, you saying you love me, but you want me to be in horrible pain for eight hours, and you want me to eat food that’s going to make me unwell?”

And I think sometimes, making the consequences of these events really clear can be very useful. I definitely used to try to do all of the things. I would try to be involved with the entire festive season. I would bake, when I don’t normally bake, for a whole myriad of reasons. I would try to do all of the social events. And actually, the older I get, and actually COVID has been really useful for this for a lot of people, we’ve lost the ability to mask how difficult things are. A lot of people have come out of lockdown going, “You know what? I’m not doing things that make me unwell anymore. I refuse to be miserable all of the time.” And I actually kind of look at that as a silver lining at times.

I don’t put that pressure on myself, and it means that I’m able to be happy for the entire day, and I’m able to follow the conversation for the entire day, and I’m able to stay a few hours later, because I expect to go in and slink off to another room, or I expect to go in and wear pajamas, or I expect to wear clothes that feel like pajamas but look slightly more like I’m actually dressed.

So, it’s been a lot, in terms of readjusting my own perceptions about what is actually needed. Do you need to be part of a conversation or can you just listen and laugh? Do you need to be in the room? But can you be in the room, laid on a yoga mat, in a nest of pillows, under a blanket? It’s often about finding that compromise again. And you can’t compromise unless you know where both sides of the argument are coming from, where both sides of the discussion are sat.

And this is often best done in advance. So, when people start planning what they’re going to do for an event, get in at the planning stage and say, “That sounds wonderful, but I am going to need to be able to just leave for a little bit.” Or “That’s lovely, but can we set a firm end time, so I know when I can go home?”

Or just be honest with yourself. Write yourself a list of things that absolutely must happen for you to stay well and stick to those, but you can stick to them in a way that is still you being engaged, and it’s you being festive and you being celebratory.

I think it’s really important to keep in mind that actually the people that love us will want us to be happy and healthy. And if that’s not how that discussion is coming across, is that a situation you actually want to be in?

Natasha:

Christmas aside, this communication piece is such an important one, and it is really difficult for a lot of people because I remember when I used to do Q&As on Instagram a lot of the time, or I’d get messages from people, saying that “My family don’t do what I need them to do to support me.” And a lot of the cases, this happens for other reasons, but quite a few times I had said to people, “Have you told them what you need?” And they hadn’t.

And I think part of the issue is knowing how to be able to tell people, because step one of that is understanding that yourself. So, I suppose there’s two parts to this. How can we, as people with chronic illness, with fluctuating conditions, who might not necessarily be the most self-aware, because that does come with time, figure out what it is that we need, in order to manage our conditions in the best way possible? And then how do we communicate that to people who fundamentally don’t have an understanding of these conditions because, for example, they don’t live with it. But also, if we’ve never been able to communicate that to them, that, in and of itself, is then a big new thing that can be difficult.

So how do we navigate this? And I think, obviously, this isn’t something that is just useful for Christmas. This is a skill that I think is absolutely invaluable throughout an entire life of living with chronic illness. It can touch everything from your work, to your hobbies, to all of your relationships. So, how do we go about building that?

Jo:

There is a really beautiful quote by the wonderful Maya Angelou, and it’s “Planning for the worst, hoping for the best, unsurprised by anything in between.”

And that’s a process I’ve included in more PowerPoint presentations than I care to think about at this point. There is a fairly large subset of my social circle that jokes about me being a prepper, but it’s actually not that inaccurate. In terms of managing my health, I have become a health prepper. I will have scenarios and back-up plans and contingencies for every single thing my body could possibly chuck at me, so that I can get through the things that I want to do, in some capacity.

In terms of applying that to kind of the bigger festive events, that may actually include things like knowing I’m going to exhaust myself and planning for the three days following that, so that I know I’ve got enough microwave food in the house.

It’s sometimes about working out what it is that you are actually dealing with. It’s a complicated process, getting to know yourself, when you are learning to live with a long-term condition. And part of that is recognizing, “What’s a flare-up? What’s my normal?” And part of that is realising that that doesn’t actually matter all that much, as long as you’ve got a plan for both scenarios.

In terms of communicating that to other people, yes, the chronic illness experience is fairly unique, but there will be elements of that that people do have at least a limited understanding of.

So, most people, by the time they reach adulthood, have sustained an injury that causes pain. Most people will have had an illness that very temporarily gives them fatigue. Most people will have had an upset stomach and not trusted themselves to eat their favourite foods. Most people will have, usually from sports injuries or the like, temporarily had a loss of confidence in their own mobility.

Draw on those experiences and explain that, just because you’ve kind of got used to it, doesn’t make it automatically not a complication anymore. It is still something that causes problems. It’s still something that limits you. It’s still something that challenges you. And there’s a lot of pressure on the workarounds to always come from the individual, but actually, sometimes group problem-solving is really effective. So, call on those workarounds from the whole family and see if they can come up with things that might help.

Natasha:

I love that as an idea because so often we talk about self-management. And we did an episode about what are the problems with the concept of self-management, and where does this leave patients off and feeling like they’re entirely responsible for everything?

So, I really love the idea of, can you bring in your loved ones? Can you bring in your family and your friends to say, “I really want to be able to participate in this. How can we make this happen, as a group? How can we make this work?”

So, let’s think about some practical stuff. I’m going to come up with a scenario right now. I don’t know how relatable the scenario is, but let’s go with it as our scenario for today.

December is a festive month. Somebody who celebrates Christmas, and Christmas is very important for them and their family. Say, they live in London, but their family lives several hours away. They have to travel to stay with that family. They have to buy presents and write cards, and they know that there’s going to be a family get-together on Christmas Eve at one person’s house, and then, at their family home, their family are hosting Christmas dinner, Christmas lunch. On Boxing Day, there’s something else.

There’s going to be people around the whole time. There’s going to be a lot of food that people really struggle with. There’s going to be people who don’t understand their condition there. And then, after that, they still have to stay at their parents’ house before going back home.

That’s a lot of different things, especially if you are going into a home, where you’ve got a lot of people crowded in, who aren’t normally there. So, you don’t have a lot of the things around you that you have set up in your home.

I notice whenever I go and stay anywhere that’s not my home. I really am very aware of how much I have set up to make it completely custom to support my needs, even when I am … We spend a lot of time in Germany, and I’m slowly building up a collection of things I just keep in Germany, so that we don’t have to take them over.

And so, with all of those things, with the traveling, with having to be around people, with all of those things that come with Christmas, something that we talk about a lot, we’ve talked about pacing, but you also talk about planning and prioritising, and we haven’t really dug into those so much, I think, in the episodes that we’ve done together.

So, if we’re taking kind of December as a month where, yes, there are the expectations, and we can kind of play around with those expectations, how do we go about just planning our December in a situation like this, to make it as adaptable for us as possible?

Jo:

It sounds fairly relatable. I think one of the things I’ll do first is just pull a bit out of my Pacing Masterclass for when I start talking about decision-making around using your energy and how you manage things like this.

So, I often ask people, if they would run a marathon tomorrow, what would the answer be? And I get a series of responses, usually a polite no, sometimes a string of four-letter words that I won’t repeat. And that’s the right answer because there’s nothing in it for you. It’s a completely unreasonable request.

If I asked people if they would do a marathon tomorrow, but some Lycra-wearing, CrossFit enthusiast would push them in a wheelchair the whole way, and when they crossed the finish line they got a million pounds in cash and a cleaner and cook for the rest of their lives, almost everyone says, yes, they’d give it a go.

So, I think what can happen with long-term conditions is we start making decisions, based off a very small selection of questions we ask ourselves. And those questions are primarily, “How much is it going to hurt and how tired am I going to be afterwards?”

What we don’t necessarily think about are, “How much joy will this bring me? How much is it going to cost? How much is it going to make me? Is it a sensible social decision? Am I doing this because I really, really want to see my niece and nephew that I haven’t seen in ages?”

All of these things feed into your decision-making process. And once you’ve made the decision that doing the thing is either a good idea or a necessary something, your next question is, “So how do I adapt that thing, in order to make it possible, to make it less exhausting?”

In terms of where to start with that, what you were saying about having kind of duplicates of essentials in Germany, the same works in family homes. So, I have a very young niece, and there are duplicates of commonly used baby items in various households, spread throughout the family. It’s just sensible, because when you are traveling with a young child, you don’t want to have to take absolutely everything with you everywhere you go.

The same is true for chronically ill people. We need more stuff than your average working-age adult. It’s a fact. It just is. So, that logic holds that having duplicates of commonly used items, in various places, would be sensible. Even if you can’t store stuff at other locations, having one at home and one in the car is sometimes a good compromise. So, not having to pack things, like I have a very specific tiny cushion I need to support my shoulders while I’m sleeping. That’s the sort of thing that could be in the car all the time. And then when I’m going places, and I’m staying over, I know I’ve got my tiny arm support cushion.

And that kind of thing can work quite well because it means that the packing phase of going away can be spread over weeks, rather than the day after, like when you need to leave, because you needed that item the day before, or you’ll need it first thing in the morning, so you can’t pack it last time at night. Things like duplicates of your skincare and hair care-type stuff, a spare toothbrush and toothpaste, so you can pack these things in advance and stretch out the getting-ready phase.

Again, it’s all fairly simple stuff, and you will use these items up eventually, so it’s not like it’s a waste. It’s just having two on the go at one time allows you to be packed and unpacked at the same time.

Likewise, just because you are with family for an extended period of time, does not mean you need to be totally, 100% engaged with your family 100% of the time. They’re probably feeling the same pressure you are, to cram as much family stuff into that 24-hour period or 48-hour period as they possibly can.

But equally, healthy people need time for themselves too. So, it may well be that some quiet time, where you all just curl up with a good book, but don’t actively talk to each other, is a very nice thing to do. So, quiet and relaxation, it is a useful thing for everyone. Don’t feel like it’s something that just chronically ill people need.

There may be ways to spend time with more understanding family members or family members with similar needs, in order to get away from the maybe more boisterous elements of the family, the perhaps younger or more filled with energy-type members of the family.

Christmas, as an example, Call the Midwife Christmas Special is a die-hard tradition for me and my granny. The rest of my family hate that program with an absolute burning vengeance. So, me and Granny will go and curl up on granny’s double bed, with her little TV in the bedroom, and the door shut, with a mug of hot chocolate. And the two of us will put our feet up and watch it together, and not have to talk or sit up or do any of the other kind of exhausting things, at which point, various members of the family with unlimited supplies of energy can do loud and exhausting things that I have no interest in whatsoever. And everyone’s still having a nice time.

Natasha:

One of the things that you said with the packing of the duplicates was that you can kind of pack some of these things weeks in advance. And I think that kind of longer-term thinking about advanced planning for activities, especially big activities, and then also advanced planning for the potential/possible repercussions of those things, really, really important.

And I think that’s actually something that’s quite hard to get in the habit of doing, of thinking of, “Okay, I’ve got this thing in a week or two weeks or three weeks or three days,” depending on what your energy levels are, “How can I start planning in advance for that?”

What are some of the things that people can do to help them get started thinking about advanced planning, how to do advanced planning? What are some of your top tips for that?

Jo:

I am a naturally fairly dyspraxic kind of thinker. I am not great at the long-term planning and strategy-type scenarios. The only thing I found that helps me to improve my ability to long-term plan is repetition. So, finding a system that works for me and sticking to that system repeatedly, consistently, for all of the things that I do on a regular basis or even a semi-regular basis.

I think it’s, as a starting point, worth just getting to grips with your own needs, in terms of your preferences and your essentials. So, a preference for me is to have a profiling bed, an electric bed, a strong preference. It’s borderline essential at times, but it’s mostly a strong preference. And essential is having an extra pillow to put between my knees while I’m sleeping, or under my knees if I’m laying on my back.

So, the travel version of my hospital profiling bed set-up can just be modified with a vast number of pillows. So, it may be that just asking how many spare pillows are available at a location or knowing how many pillows you get in the average kind of hotel room chain-type set-up, allows me to plan how many pillows I need to take with me, to get me up to the minimum coping number of pillows. I hope that’s sort of making sense.

So, in terms of the management stuff, thinking about your essentials, and it may be that things that others deem completely frivolous and ridiculous are an essential to you, and there’s no shame in that. There’s no judgment there. It is. It’s an essential.

So, writing literal lists of those and thinking about how easy it is to get those items in various locations, gives you a starting point for things you need to take with you. And you can work from there, to build a system of how can you efficiently get those things in the car? Or what suitcases do you use every single time? What does the inside of that suitcase look like? Do you have the same toiletries bag?

Thinking about clothing options. So, what do you wear across the span of a week that is useful, is comfortable, is easy for you to move in, making sure you’re not packing yourself a suitcase full of things that you can’t get into independently or are really difficult to sit comfortably in. And just really kind of getting to grips with what it is that you actually need, day-to-day, is a good starting point.

Natasha:

I think that, aside from what are the things that we need in the specific location, one of the things that I find really helpful is giving myself much longer buffers. I hadn’t travelled in a really long time, and I travelled quite a lot this year. And so, I was leaving things very last minute, before going away, for thinking about what I was taking with.

And this year, because we’re spending Christmas in New Year in Germany, we’re actually going to be away for a long time. One of the things I did before we went on my honeymoon is I packed my supplements a week-and-a-half before, to make sure that I have enough for that period of time. Everything has to go into separate little bags, and they all then have to go in another bag.

And so, I try, and all of those kind of small tasks with the preparations, thinking about what I’m wearing, thinking about everything that I’m taking with, what are the things that I need to know for when we’re there, is all of that admin done?

I’ve basically done all of the admin months in advance, having all of that filed and organised and ready to go, so that when it is the time to travel, I don’t have to think about that. There’s so many things that I just find that, if I can break it down into smaller steps. So, for example, step one, with my supplements is, have I literally ordered enough that will cover me going up to before I go away and then have enough to pack? Because then, one-month buffer is, I’m going to use that up before I even get there.

And then I get out my little bags, which I had already pre-labeled. They’re the same things every time, so that work had already been done. I then have a little, like in factories, you’ve got a little line, where you put everything in. And then that’s just something that I can put away, that I know is going to go in the suitcase, and that’s ready to go.

And so, really thinking about how I can break down tasks, so it’s not all done A) in one day, but B) … Actually, I think last time I packed my supplements, I did it in three lots. So, I had them laid out, and I did it in three times throughout the day, so I didn’t have to do it all in one go.

And so, thinking about how I can break down those activities beforehand, I find incredibly helpful because it just means that I’m not rushing to do everything the day before when, actually, the day before, the most important thing for me is I bathe and I clean myself the day before, so I don’t have to do it the day I go. That and rest. Those are the two things before I travel that I know I need to do.

But also, one of the things we’ve done this year is, instead of flying, because I stopped going to Germany because I couldn’t handle flying there over Christmas in the cold and then having to wait at several train stations in the cold, we found a very good route, and we’re spending three days getting there. We’re spending two days in Belgium after the Eurostar, and then we’re going to Germany from Belgium.

And we have found a really efficient, accessible way of getting there, which, yes, okay, it’s going to take a lot longer, but it means not having to deal with Christmas airports, freezing cold, standing at stations.

And so, we’ve adjusted that, and it’s the first time I think I’ve actually looked forward to going to Germany over this time of year, because I have planned it in a way that hopefully means that I will not need as long to recover before I even get there.

Jo:

I absolutely love that, and I think that’s my job in action, is just, when you get all of the right conditions to allow you to do the thing and to enjoy it and to not have to pay an enormous price, health-wise or physically in any other way, that’s the point I want everyone to get to.

So this isn’t about, we just make due until we’re medically better, because that’s not realistic for many of us. But if you can get to the point where you have everything so well laid out that, regardless of how uncooperative your body and mind are, you can still do the things you want to do, I’m calling that a win. And that’s kind of what I aim for with all my clients.

But I think what you were saying about having that journey that works really well for you, it just kind of made me laugh because, when I was doing my degree, we had the particular service station that we stopped at, because it was midway on the route from home to university.

I studied part-time, and my mum, bless her, drove me to and from university twice a week because travelling on my own just wasn’t possible. And we went to the same service station every time. And it got to the point where we’d walk past the cafe we normally ate at because they had a sofa I could lay on. We’d wave to the person behind the checkout. They’d start getting our usual order ready. And by the time we were back from going to the loo, the food was ready, and we could just pay and lay down.

And it was just, that system worked so effortlessly and so beautifully, and we had all the familiar faces we’d say hi to along the road. And it was just brilliant, and it made that chunk of the journey so much easier, just to have that kind of, “This is how I do things.”

And yes, that maybe doesn’t help people that are maybe doing this for the first time, but generally, we’re creatures of habits. So, a lot of people will do the same thing every, single year, in terms of how they celebrate certain occasions.

So, getting into those routines is really useful, and when you can start making those routines a holiday tradition, it works even better.

So, I can’t remember where it was. I’m sure it was one of the Scandinavian countries, and I can’t dredge it out of my brain right now, but it’s tradition to give books and pajamas on Christmas Eve as a gift. And I just thought that was brilliant because it’s the sort of thing that lends itself to a really nice relaxed, cozy, loving kind of day the next day, where you can just curl up with a book and maybe some kind of festive tipple … and just enjoy yourself, and just it felt really loving.

Natasha:

Something that you mentioned in a podcast that we did previously, that I think is really relevant here. So, you said that what I had described and what you would describe for your own life, are things that we have built up over years. I have built this up, having had many sessions with you and having spoken to you a lot and having learned how to make these adjustments.

And a lot of those things have come from me not making those adjustments and then living with the consequences of it, and then having to learn and iterate, based on that. Jo is nodding her head vigorously here.

But I think one of the things that you said in a previous episode, that I think is really, really helpful, is sometimes it’s even adding a few minutes of buffer in. So, I never thought about the fact that if you are driving somewhere, instead of having sat in the car, and I found actually having, you mentioned a little cushion, I found having … I take an airplane neck pillow, and I wrap it around my waist, and I have my arms on it. And that makes such a difference to my comfort in the car because my shoulders aren’t hanging down.

So, there’s small things you can do in the car, but instead of having to get immediately out of the car and then straight into the hotel or straight into something, you can just sit quietly in the car for five minutes, before you do something. And it’s sometimes even just, instead of saying, “I have to completely reevaluate how I do everything,” because I can imagine listening to this episode if you’ve not got much experience with making changes and being very overwhelmed of, “I have to completely conceptualize Christmas and get my entire family on board. That’s really a lot.”

Sometimes, it is just saying like one or two things, “Can I have a five-minute break every now and then? Can I discuss this other thing?” And just implementing one thing or a couple of things at a time, seeing how that goes. It doesn’t all have to be a huge change.

Jo:

Yeah. I completely agree. I think small changes can make a massive difference. But also, with us being creatures of habit, change of any kind requires quite a dedicated amount of thought to go into it before it becomes habit.

So, a psychologist once told me in hospital that it takes two years to change your default settings, so two years of doing something consistently before it becomes the norm.

A lot of big celebrations come around once a year, so you’re going to need a lot and lot of years of practice, in order to have your default setting as the new option. So, what tends to happen is, when we’re under pressure, when we’re tired, during a flare-up, when you are not being quite mindful and conscious of what you are doing, you default back to your old routines. And these are the old routines that typically make us unwell or tired or exacerbate our pain because we don’t know what else to do with ourselves.

So, it’s sometimes worth just having a person or a series of people who are in on the loop, in terms of what you are trying to achieve, and having them aware that when push comes to shove, you might completely forget all the things you’re supposed to be doing to look after yourself.

So, as an example, I have very, very poor proprioception. My body awareness is not good. A lot of my family members are now kind of on the look-out for key things that I don’t notice when I’m distracted. So, things like standing with my feet turned in or rolling my ankles or locking my knees out. Or if I’m not leaning on a table, I won’t notice that shoulder dropping out thing is an issue for me as well. So, I won’t notice it’s happened, and then I’ll get annoyed that my fine motor control is messed up because I’ve got pins and needles in my hands. And my mum will remind me that maybe I’ve got pins and needles because my shoulders aren’t attached as well as they should be.

Those kinds of helpful hints, as much as it seems like nagging, and it can drive you bonkers, and it’s really irritating, it’s also quite useful because it does get us to the point of change a bit sooner, if we’re being reminded of all the things we’re supposed to do when we forget.

Natasha:

I think during busy times, for positive reasons as well, it’s very easy to let go of some of those things that we build up over the years, a lot of those habits. And I know, for me, they’re the first things to go when I’m busy, when I’m tired, when I’m stressed, when I’m happy, I tend to let go of the basic things that I need to do every day to keep me as functional as possible.

How can people, during these times, make sure to keep focusing on them? Because it often feels like they’re the easy things to let go because you want to be spending your energy, or you need to be spending your energy, doing other things. How can we think about that, and how can we make sure that we don’t let go of those baseline things that we need to keep doing?

Jo:

I think it’s worth keeping in mind that the most efficient way isn’t usually the way we’ve been doing things anyway. So a change of routine is not efficient. Changing your sleep pattern in the middle of a festive event is not efficient. Changing your diet drastically is not particularly efficient. Making these big changes will have a knock-on impact that then ruins the next few days. And that’s not an efficient use of your time.

So, sticking to routines, as much as it doesn’t feel, I don’t know, festive or magical, that doesn’t mean it isn’t sensible. So, still sleeping and waking at the same time, maintaining that sleep hygiene, making sure you’ve actually put a prescription request in, taking into account the fact that the doctor’s surgeries will be shut and the fact that absolutely everyone everywhere will be putting a prescription request in, and the pharmacists will be completely overrun. Get those things in early, so you can stick to routines the whole way through.

And think about, actually, if you’ve been doing this every day, you’re used to it. It’s really not that kind of difficult to just do it for two more days of the year. So, stick with those things, knowing that it will keep you well enough to enjoy yourself the rest of the time.

And yeah, I know it does kind of suck to have to do these things to keep ourselves functional, this sort of health homework-type stuff, but actually, is it worth the cost if we let these things slide? And the answer is usually no.

Natasha:

And I think something that you mentioned, we default when we’re tired, or we’re excited, or there’s something we really want to do, we default into our habits, the things that we just do generally. And I know for me it’s very much run off adrenaline, try and do everything I can and keep pushing that adrenaline because, if I stop, I’ll crash.

I think there are a lot of things that we can do, that are often, as you said, really small changes that can add up to make a really big difference. But also, quite frankly, sometimes, you’re going to want to do a thing. And that is also fine. I think something that you’ve said to me before is, it’s about making a conscious decision that, say, for example, there isn’t something that you want to adapt or adjust, or you just want to go and do the thing. If you’re doing that from a place of making a conscious decision to do it, and it’s not coming from a place of kind of scrambling around, that’s a very different thing.

So, I’d love to talk about choosing to do the thing and just generally understanding that we might have to buffer in activity time, as you mentioned earlier, not activity time, sorry, recovery time. And how do we do that? How do we think about doing the thing, where we know it’s probably going to be a bit much, but we want to do it anyway? And how do we kind of conceptualize and think about making that recovery time as effective as possible?

Because I also think, for me, the psychological thing is very different, than if I’m trying really hard not to crash, and then I crash, I find that much more psychologically difficult than when I’m like, “I’m going to do a thing, and if I crash, I crash,” but it’s not unexpected. I can deal with that 100 times better psychologically because I have gone into this knowing that that is a possibility.

Jo:

So, this is something I always talk about with my students on placement, and I always talk about it with patients as well, that there’s the informed decision-making process, and then there’s the kind of uninformed, chaotic decision-making process. And it’s very much like consent.

So, in healthcare, we talk about informed consent. And this is the difference between a surgeon saying, “Is it okay if I take your appendix out?” and the surgeon saying, “Is it okay if I take your appendix out? Here are the 9,000 things that might go wrong, and here are the reasons why you should do the surgery anyway, and here’s how the procedure’s going to work, and here are the people that are going to be involved in your care.”

One is, consent. Yes, you’ve agreed that somebody can take your appendix out. But the other one is, you’re agreeing with the full picture, and you’re agreeing with the knowledge of what might go wrong, what might happen, what the contingencies are, who’s involved.

So, that boom-and-bust lifestyle, where you are going to push yourself to the limit, you can do that. That’s a choice you make on your own. It’s about your life. It’s entirely up to you. But do so having looked at the full picture, and looking at the people involved, and looking at the processes involved, and thinking about who could help with certain things or who could help with the recovery period afterwards.

So, when I first started taking students on placement, I was really excited by it, but also knew it was going to massively increase my workload for the sort of eight to 10 weeks I had a student on placement. I need to fit in a lot of hours of working with them, as well as working with extra clients, so they’ve got stuff to learn from, stuff to do. I knew that I would not be able to live my life in the same way, as I would normally do because it just wouldn’t be enough work for the students, and it wouldn’t be an appropriate level of support for them.

So, I laid it all out in my brain and thought about the things that I would need to get rid of or compromise on for the 10 week, eight to 10-week period I had students on placement. And it’s things like, “If I am earning more, because I’m doing more work, can I justify getting takeaway more often or can I justify buying more expensive pre-prepared food than I would normally do?”

It’s things like, “Do I let my partner do more of the household stuff in the short-term, under the assumption that for the two weeks following placement, I will do very, very little work and I will pick up the slack that I have thoroughly dropped and just get us back on track afterwards?”

It was under the knowledge that I’d sat down and reasoned as to whether this is good for my career, whether it’s good for my health, whether it’s good for me as a person, whether it brings me vast amounts of joy, which it does. And that sense of satisfaction, that pride, that enjoyment I get from it, on a professional and personal level, is worth the fact that yes, maybe there are a few more early mornings, and maybe I do need to sit up for a few more hours, and maybe I will slack on my physio, and maybe I’ll have more back pain because I’m spending more time on video calls.

Those are the compromises. But I made them willingly and knowingly, having an understanding of the benefits of the outcome. So, I accepted the consequences of that and then planned for them. And it meant that I could do the thing, I could do the thing, knowing that I had plans in place for how I was going to eat and who was going to do laundry and who was going to look after the house, and whether or not it would be okay for the house to be too messy to entertain because I’d be too busy to have friends around anyway because I’m working all the time.

And it’s that decision-making process that’s kind of vital to understanding, whether or not doing something is a good idea, and if it is a good idea or you have to do it anyway, how do you do that?

Natasha:

Something that you brought up that I think is vital, and I’ve been thinking about this a lot over the last year or so, is that, if we want to do something new or more, that energy has to come from somewhere.

So, I love learning languages. I went to France on my honeymoon, realised I lost all my French, wanted to learn French again. I was like, “Oh, okay. Well, I can’t just add French in. I have to cut back on other things, if I want to add in this new thing.”

And actually, I haven’t even been able to do much of that because I had to cut back on a lot of my work. So, for me, it is this kind of calculation of understanding where my energy is at any given time, having to cut back on work because I need to prioritise getting through this dip that I’m having, but also knowing that Yiddish and French is something that I really enjoy, so how can I find small ways of keeping that, even if it means that I take on less work or something, because those are the things that I spend too long only prioritising work over everything else. And I think finding that balance has been really important for me.

And I think it kind of leads us into where I’d like to wrap up this conversation, which is joy and enjoyment, because that is so often left out of a lot of the conversations in chronic illness that, I mean, I definitely felt, for a very long time when I was younger, that my life was over. I wouldn’t be able to have anything of meaning or of value in my life because I was too ill, and I didn’t know how to do that.

And I think a case for a lot of people that I know have been able to build lives that they’re really, really proud of, and they’re really happy, even though they are going through some really difficult times.

And so, when we are talking about Christmas or the festive season or anything in December, when people tend to be speaking more about cozy things and family and relationships and joy, it’s really important to remember that you can live with a chronic illness, and you can have to do all of these calculations and adjustments and think about, “Oh, if I do this, I might crash, and I might feel really crap, and it’s going to be really hard.”

It’s really easy to forget about the fact that we’re still also people who can have a really good time, even if we feel like crap, even if we’re going to have to recover afterwards. And I think that can be something that’s so often missed.

Jo:

Yeah, I completely agree. Again, I also think there’s room for recovery to be a not unpleasant experience. I think we think of recovery as being like, “Woe is me in my hospital-style bedroom, gazing forlornly out a window onto a gray skyscape. It doesn’t have to be that. Sometimes it can be curling up on the sofa with your feet in your partner’s lap, rereading your favorite book, because rereading things takes less energy than reading new things.

And I think one of the things I’ve learned to do is to keep doing activities but to scale them to meet what I’m currently capable of. So, I love knitting. It’s one of my go-to fidgety, brain-feels-good, relaxing kind of activities. But there are times where I am simply not capable of following a pattern because my brain cannot read and do arts and crafts at once.

So, I’ve got knitting as the activity, and then on a good day, or when I’ve not had too much work, or if I’m generally feeling pretty kind of alert, but also, typically, because my partner works nights, I’ll do this when the house is quiet, I’ve got complicated knitting, with a pattern to follow and tiny stitches, and it’s very hard.

If it’s two of us curled up on the sofa, and I’m coming out of a flare-up, we will have TV on in the background, and I’ll do something very, very simple. So, yeah, still knitting, but I’m doing the easy version of that because it matches my current capabilities.

So, having activities or things or ways that you can scale things to match what you’re capable of is a really useful strategy. So, things like Christmas, a lot of the big festive events, have a lot of food that goes alongside it. How much of that can you pre-prepare? What can you put in a slow cooker? That kind of thing.

I was really ill last Christmas, to the point where I was like, “Nope. I think it’s probably COVID. I’m not going anywhere near my loved ones. I’m just going to stay home.”

So, that meant no Christmas dinner. So, I just put a load of Christmas-themed foods in a slow cooker and made myself festive hot pot. And it was amazing, to the point where I’m planning on making it again this year.

But that was really, really easy cooking. It was one ingredient every few hours or so, with a big break in the middle. Half of it came out of the freezer, and it was one of the nicest things I’d made in ages.

So, yeah, keep in mind that the simple option, the lazy option, the recovery option, doesn’t have to be the miserable option. You can be happy and tired at the same time.

Natasha:

A big thank you to Jo Southall for once again joining me on the podcast. My episodes with her really are some of my favourite! If you’re interested in getting in touch with Jo, I’ll link her website in the episode notes. 

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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. I’m off to Germany. Ta ta for now!