What To Do When Your Chronic Illness Flares Up

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

Firstly, I just want to say a belated Happy New Year. If you follow me on Instagram, you may have seen that last year was a particularly difficult one for me, both health-wise and personally. 

Among many other things: we lost my beloved grandma, I went through opioid withdrawal twice (once accidentally without realising – which is a story for another time and I do not recommend), and the worst flare-up that I’ve had in years. ⁠

I just wanted to say thank you to everyone who has supported me and The Rest Room. This flare-up has given me a lot of time to think and reflect on how I was managing my health (nominally better than I ever had, but also using the tools and skills I learned to cope just enough to push myself too far) and what I want from life. ⁠

It’s also got me thinking a lot about flare-ups. What they are, and how we can navigate their tricky, arseholey waters. 

And that’s what we’re going to be exploring in this episode. To help us along in  our metaphorical water journey, I’m joined by Claire Campbell, a pain management physiotherapist, who also lives with pain herself.

Before we get started: an important caveat. Just like the experience of living with chronic illness and chronic pain can vary dramatically for people, so can the experience of flare-ups, which makes this topic a little challenging to talk about. 

In this episode, we’ll be talking about the understanding and management of flare-ups for chronic pain, and chronic conditions which can cause symptoms like chronic fatigue. But we are not talking about ME flare-ups, which may need a different approach. As always, please use your best judgement and understanding of your own condition before making any changes to how you manage your condition during a flare-up. 

Now we’re all caveated, let’s start at the beginning. What actually IS a flare-up? I’m going to let Claire explain… 

Claire: Definition of a flare-up is a sudden increase in your symptoms. And that can be quite challenging to define because quite often, people are concerned that an increase in their symptoms is a deterioration in their condition, or it may be the sign that something else is going on, but actually flareups, those fluctuations in your condition, are really common when you have long term pain and other symptoms.

Natasha: So how can we recognise those differences between a flare-up and a worsening of symptoms?

Claire: It’s really challenging to pin that down really. And I suppose the difference with a flare-up or a deterioration in symptoms is that a flare-up will settle down again, but it can take a huge amount of time. So I have known flare-ups to last a number of months for people, depending on what else is going on, but that doesn’t necessarily mean that it’s a long term deterioration in their overall symptoms.

Natasha: Claire told me there are many reasons why a person might experience a flare-up and it’s not always easy to pinpoint what caused it. 

Personally, I know there are a lot of different things that can cause me to go into a flare-up, and more often than not it’s a long-term exacerbation of problems that start to get on top of me, that just end up spiralling. 

And as Claire says, there are definitely triggering factors which play a part… 

Claire: From speaking to a number of people living with persistent pain and I myself, stress seems to be a really common trigger of a flare-up – either things happening in your personal life or stress to your body. So if you’re going through a period where you’re not sleeping as well, or there are extra demands on you physically, or even I suppose if people are going through a patch where their diet has changed. Some of these things can trigger a flare-up, but equally doing too much or doing too little activity can also trigger a flare-up. Going through stressful periods where it’s a whole combination of factors.

So for lots of people having a difficult time at work or having an upcoming assessment for benefits can be hugely stressful, but it’s often not just about one thing. Quite often, it’s a group of lots of little things that make it more challenging for you, the sensitivity of your system is much higher. And your symptoms become more severe for a short period of time or maybe a longer period of time depending on the things that are triggering your flare-up.

Natasha: For me, stress, lack of sleep, hormones, and even external factors such as the weather can all play a role. I’ve started to recognise those triggers and early warning signs – something Claire says is one of the most important factors in managing flare-ups… 

Claire: Understanding for you, what your main triggers are, can really help things. What I have found personally is that my early warning sign is stressful situations, particularly related to overwork. But the actual thing that ignites my flareups is the relief of stress. And I have recognised that over the years, by doing the best I can with quite often unreasonable deadlines, that relief of stress, then, doesn’t have the same potency behind this. And then that then means that I’m better able to manage that.

Of course, over the last two years, what I’ve recognised is that my coping strategies had been very finely honed in a pre-COVID world. And since the beginning of the pandemic, I recognised that a lot of the coping strategies that I had developed for addressing those early warning signs and getting in ahead of the flare-up were not available to me in the same way. So it’s really important to have a range of things that you can do when you recognise those early warning signs to try and reduce the impact of the flare-up, either the severity of it or the length of it, or how much it affects your day to day life.

Natasha: What are some common early warning signs of a flare-up?

Claire: So quite often, people will describe to me feelings of frustration, feelings of overwhelm. Quite often, they’ll describe that they’re doing much more than they would normally do where they’re putting themselves in a place where they’re trying to, I suppose, do the plan of what they set themselves out to do. And then, that then leads to feelings of increased pain and fatigue, overwhelming tiredness, poor sleep. And these other symptoms can then lead to an overall flare-up.

Natasha: I’m going to be talking about this more in a future episode about pacing, but one of the things that I noticed over the last few years is even kind of within smaller contexts of starting to push myself too far, even if it’s just on a day to day level. I start noticing that I get hot. I start noticing that my heart is beating faster and that I talk quicker than usual. And I talk more than usual, which is really saying something. And I get kind of more jittery and it becomes even harder to stop because it’s like I’m in that adrenaline mode. And I know if I stay in that for too long, there’s always a crash from that. Noticing those kind of early warning signs of when I’m getting my body into a place where it’s more likely to crash has been really helpful. It doesn’t mean I always stop, but at least I can recognise when they’re coming.

Claire: That’s so wonderful to hear that, Natasha, because you’re actually recognising the changes in your own body. And lots of people find that quite difficult to do. So I don’t know if you’re able to speak about how you got to that stage where you were able to recognise the changes in your body, because many people with long term conditions really struggle to connect with their body and notice what’s going on, other than symptoms.

Natasha: Yeah. I remember when I was a child, I used to go to physiotherapy. And they’d always say, “How much does it hurt on a scale of one to 10? And can you explain the type of pain?” I was like, “It hurts. Make it not hurt.” And I think it was only after I started seeing an occupational therapist and I started talking to you more regularly, and kind of just having more time to reflect on things, because the way that I’d been living just was not helpful to me anymore. What I often say is that the behaviours I had were really helpful when I was younger and I was more able to push through. And then as I got older, my body couldn’t do it anymore, but I kept up the same behaviours.

And so when I was trying to figure out and understand how I could try and mitigate the crashes, I would notice that after a Zoom… Well, it wasn’t even Zoom back then. But after, say like a call, I’d be boiling hot. And my heart would be beating really, really quickly. And I think now we can’t do it because we are recording, but usually now when I’m on a Zoom call, I have my overhead fan going and I dress appropriately. Before this call, I’d had on a thick polo neck jumper. And I had to take it off because I knew I was going to get too hot when I was recording.

So I think it just came with taking a step back and trying to unwind things. So I used to get very mentally triggered from some bad medication that I’d had and that caused a whole thing. And one of the things that my therapist said to me that was the most helpful thing I think I’ve heard, is that your brain is looking for the tiger in the room because I was having these physical sensations. My brain was like, “Oh, your body’s having these physical sensations.” It was also when my PoTs had started. And so my brain was like, “Oh. Well, then something has to be wrong.” So it would find something to cling onto.

And it was only by kind of unraveling it and recognising a lot of the times the physical symptoms were coming first. I’d be like, “Oh, there’s no tiger in the room. This is just my body having a reaction.” And that helped with the mental side of it, because I almost had a learned anxiety response, and it was very interesting. And I think I kind of did the same thing physically. And it’s just, I think, yeah, being mindful of where my body is in space. Sometimes you’re like, “Oh, why does this really hurt? Have I been sitting badly?” Or I had noticed something really small, but I didn’t take an action to do anything when it was really small. You only take an action when it’s a bigger thing.

Claire: Yeah, because you’re so focused on the task at hand that you block out the small bits of information. And that’s really common when people have long-term conditions.

Natasha: You have to.

Claire: Because if you to pay attention, exactly. If you paid attention to your symptoms all the time, you wouldn’t have the mental capacity to do anything else. So for me, it’s about noticing those other cues, those other body sensations that can help guide you on what best course of action. But everything you were describing there, Natasha, about being so focused and committed to doing what you had to do and dealing with the consequences afterwards. I think there are a huge number of people living with chronic illnesses who recognise that approach. And it is very distressing. It does lead to… flare-ups can be physically very, very challenging to deal with. But emotionally, I think there are a lot of people who are very good at giving themselves a hard time when they’re already dealing with so much in a flare-up.

Natasha: Yeah. It’s interesting because when we’re talking as well about that period of kind of ignoring the smaller symptoms because you’re so focused or you kind of just have to, to get on with your life. It’s funny when I think about it in a work context, almost, or just a doing something context, because it can feel really good to push yourself and get into that adrenaline mode. Because you feel like you can do so much more, you can be productive. You could feel like you’re making progress on something, whether that’s work or not. And it just feels really nice. And then you can do that for long enough where you’re kind of… I feel like I’m floating above myself.

Claire: You’re reaching that stage of flow. It’s such a beautiful feeling and it’s so wonderful as humans that we can achieve that sometimes. But I suppose the key for me is even when I’m in that state of flow, it’s really important for me to recognise that the basics still need to be covered. So eating, sleeping, moving my body, breathing, and that’s really important. That’s really important to recognise, is even when we’re having a really lovely time, it’s important to check in with ourselves, not too frequently, just every now and then, just to see if we’re honouring our own needs.

Natasha: So for somebody who doesn’t have a lot of experience recognising smaller changes in symptoms and recognising some of those early signs, what are some really simple ways for people who are beginners in this to start noticing?

Claire: Unfortunately, I would say the best way of working out what your early signs are, are reflecting on the lead up to flare-ups. So it can feel like a bit of trial and error in the beginning, where you look at what you were doing in the days before and looking at your routines and if things changed, or how you went about your day to day life. And then, noticing what were those kind of early signs that you missed on that occasion? Unfortunately, that seems to be one of the better ways of identifying what are your personal early signs.

I think people really have difficulty in general having that kind of backward view when you’re in a flare-up, because it’s such a difficult time. It can feel like you are looking around to try to find something to manage the symptoms that you’re having at the time. So sometimes it can be helpful to wait until after the flare-up has eased before you explore what those early warning signs are.

But even making a note or having some kind of a diary or a planner where you can see what your activities were in the days proceeding, that can be really helpful. And then it’s a bit of experimenting because you’re then having a look and seeing, “Well, I thought that was an early warning sign that time. So if I address that next time, how do does that affect the flare-up? How does that make the next time look different?” This can feel really slow, but it can be really effective in identifying and reducing the impact of flare-ups.

Natasha: We’ve been talking about recognising these early warning signs to try and prevent them from getting worse and potentially even leading to a flare-up. What are some of those tools that people can use, even before a flare-up, to hopefully kind of calm things down a bit?

Claire: So, tune in next time for an excellent podcast on activity management and pacing. But in addition to that, probably focusing on key aspects of looking after yourself. So things like your sleep, doing things that you enjoy. You spoke earlier about the tiger in the room. Sometimes that tiger will be known to you. Sometimes there will be a stressor or something that you’re finding very stressful that you can identify and say, “That’s causing me to be a bit more wound up than usual.” And even naming it can help you deal with it in a better way, and maybe look at some ways of problem solving it. But as you well know, Natasha, not all stressors can be managed or managed easily. And I would also say the basics, like moving in your body, trying to get some daylight and fresh air, things like that can be really soothing.

Natasha: So, we don’t always know what causes a flare-up – but it’s not always easy to determine what exactly (and I’m using air quotes here) counts as one. 

Claire: It’s really personal, and I suppose the main thing to get across is for people with long-term conditions, it’s often very easy for people to say, “Oh, I’m not that bad because I only experience flare-ups for a day or two,” but it’s worth experimenting with your strategies to see if you can manage those difficult days in a better way.

Natasha: As Claire said, a flare-up will look different for everybody. A flare-up could last days, weeks, or months. Personally, I stopped thinking of a “bad day” or handful of days as a flare-up because I know these are short term things – often in response to overdoing it or an external stressor I can recognise – and I know that if I take things easy and rest for a short period of time, it will be over soon. I start to think about something as a flare-up if it lasts for a couple of weeks or longer. There’s a reason for this – and it’s mental. 

Claire: In your case, it sounds completely accurate that if you have a bad day, it’s important for you, Natasha, that you brush it off as a bad day, rather than thinking that this is a flare-up that’s going to then trigger weeks of feeling much worse about your condition or experiencing an increase in symptoms. And that’s a really important part of flare-up management, is balancing the recognition that you are experiencing a flare-up with not letting yourself spiral with those thoughts of, “This is terrible and it’s going to last forever, and I’m not able to cope with this just now.” And all of those thoughts are completely understandable and sometimes can be appropriate depending on what else is going on in your life, but actually can make flare-ups worse because it can increase your anxiety, which then increases your attention to these symptoms that have increased.

Natasha: I find that easier to cope with but that’s not the case for everyone…  

So as Claire says, getting to know our bodies and triggers is helpful.

But what about external stresses? Claire told me soothing elements in the early stages of a flare can be really helpful when dealing with situations beyond our control… 

Claire: There may be things that you do to relax yourself, so things like using heat. You may have a relaxation practice or something that you enjoy doing. I’m a massive fan of crafting. If that is your thing, then something like knitting or colouring in or something relaxing or soothing can be hugely supportive during these difficult times. 

You may have other things that you can take such as medication that you only use in a flare-up. Some people like cold. They are in the minority, but if you are somebody who prefers cold ice packs or things like that to heat, then use those. And then I think in a flare-up, it’s really important to recognise that difficult thoughts and difficult emotions are normal when you’re experiencing an increase in your symptoms. So having reassuring things to tell yourself, or involving family or friends or loved ones in your flare-up plan are really helpful.

It can be really common when you experience a flare-up to think this is terrible and it’s never going to get any better or I’m not going to make it through today. And these are really difficult thoughts to sit with, but when you’re experiencing a sharp increase in your symptoms, it is common to feel that way and sometimes reassuring yourself that you have the skills to deal with this, or having somebody reassure you that these emotions pass can be really helpful to help you manage. 

That does involve speaking to other people about your flare-up as well, and asking them before you’re in a flare-up to help you through it and giving them guidance. Because I know that people can find it really difficult to support others when they’re in a significant amount of pain or other symptoms, it can be really hard for people to first of all, understand what you’re going through, but then it can be really hard for them to help you.

And if you think of somebody you love being in a severe amount of pain, it can be really challenging even just to bring that forward in your mind. So it’s not surprising that people find it very, very challenging when people are experiencing a flare-up to kind of sit with them and be with them. It can be common that people want to isolate themselves and equally other people find it hard to sit with that. So showing people exactly how they can help you going through a difficult time can be really reassuring to them and also can be hugely supportive to you.

So I would really encourage you to have an open conversation with people about how flare-ups are a normal part of your condition, but they’re very, very difficult to deal with and that you’d really like some help in managing them in a better way. And this can involve like going through a plan with them of what you’d like to do in a flare-up or the things that they might be able to offer you when you’re beginning to feel the flare-up coming on that might be helpful for you because it can be really hard to remember exactly what works for you when you’re in a lot of pain or experiencing other symptoms.

Natasha: Do you have any specific ideas or suggestions that you could share for things that people could ask for, if it’s appropriate for them?

Claire: And I guess that’s the problem, is it really depends on you as a person as to what would be helpful for you. I would encourage everyone to be open about how they manage their flare-ups because often when you’re experiencing a severe amount of pain or feeling weak or fatigued, and this is fatigue in relation to a pain condition, I would encourage people to be flexible about how they approach it. So it might be that you want to remain in bed with the curtains down and have silence in the room.

It might be easier to cope with a flare-up if you are sitting somewhere among other people, even if you’re not speaking that much. It might be helpful to have the radio on so that you’re not as focused on your symptoms and have some distractions. It may be that you want to experiment with a relaxing activity or something that you enjoy doing. I find that some people will do those boring, monotonous jobs when they’re experiencing a flare-up that they can never find time to do like sorting out their bedside cabinet or something like that, just something small, but that can give you that sense of achievement even on your worst days.

Natasha: More on this in a moment.

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Natasha: I want to pick up on something Claire mentioned in that last clip about “flare-up plans”. 

It’s a tool that’s super helpful for a lot of people, but what actually are they? 

Claire: A flare-up plan is a way of staying on track when your symptoms increase so that you have tips and hints on how to manage in a better way. It can be so difficult when your symptoms increase to remember the things that you were hoping to try out this time. 

So some people will have a flare-up plan that is a written piece of paper that they know roughly what they need to do. Or some people keep notes on their phone. And others might have a little box that they have to remind themselves when they’re experiencing a flare-up of tips and tricks and maybe a hot water bottle or something like that to soothe them when they’re experiencing an increase in symptoms. Ideally, you want to be putting this plan together when you’re not experiencing a flare-up, so looking at the things that you find most helpful.

So I would say the key aspect to managing a flare-up is related to activity management. So when people notice that a flare-up has started, or they might be into a flare-up already, I encourage people to have a look at their planner and have a look at what are the activities that they have coming up. It’s vitally important that people prioritise activities that they have given their available energy.

So quite often when you’re experiencing pain, it can be tempting to cancel everything, but equally, it can also be tempting to keep going until you can’t do anymore. So I would really encourage people who are coming into a flare-up to prioritise the really important things in their life to keep them living in the way that they want to live, even if it means that they’re not doing as much as they were able to do.

Once people have prioritised what’s important to them, what’s really crucial here is that they pace themselves. So obviously, scheduling everything for a morning when you’re in the middle of a flare-up is likely going to mean you’ll struggle for the rest of the day. So it’s crucial to pace yourself, if you can, schedule things for throughout the day. But in a flare-up, people can really struggle to even do the basics of personal care. So things like showering or washing themselves can be really challenging. Sometimes I feel like people can get real decision fatigue. So this is where support can really come in and be hugely important. So things like even picking out clothes can be a step too far. So sometimes focusing on having these decisions made already can be really supportive. So for example, knowing that when you’re in a flare-up that you could use baby wipes to wash yourself down, rather than have a full shower or something like that, if that is something that makes you feel more fatigued or painful.

Equally, having an outfit that you wear when you’re experiencing a flare-up so that you don’t have to make a decision about what clothes you wear, that can just be so helpful and supportive just for your future self, making a decision now so you don’t have to make it later on.

Other things that can be crucial are keeping yourself fed and keeping your diet intake up. Often, people are in so much pain when they have a flare-up, they find it very difficult to think about what they would like to eat, and they feel too tired to make anything that’s too complicated. So I often encourage people to do a batch cook when they’re feeling well and have the capacity to do so. It’s wholly down to your personal tastes and your lifestyle, but being able to take some nourishing homemade food out of the freezer can really make a difference when you’re going through a flare-up.

Equally, sleep is hugely important. So I know that, Natasha, you’ve done resources in the past regarding sleep, but protecting your wind-down time at night is really important when you have a flare-up. So trying to relax before you’re going to bed so that when you get into bed, you’re feeling sleepy. Also, it can be really tempting in a flare-up to wear your night clothes all day, but even having different loungewear or comfy clothes for daytime so that there’s a difference between day and night can really protect your sleep during a flare-up. I love your idea, Natasha, that you’ve suggested in the past of wearing a nice, pretty soft jumper or something like that during the day just to make those differences and just to look after yourself during a flare-up.

Natasha: Yeah, the only thing I change is the top. I literally wear thermal leggings all the time. So the bottom stay the same. I just put on a pretty, as you said, a pretty soft top, and that’s kind of my day to night distinction.

Claire: But it’s making those distinctions are really crucial. So even if it is just the top, often that’s what you’re seeing if you manage to pass a mirror or if you’re on a call. It’s just increasing that distinction between daytime and nighttime that’s really important.

Natasha: So we know what a flare-up is, we’ve learnt some really valuable tools to recognise the early signs of a flare-up, and we’ve explored some steps we can take now to look after our future selves during a flare-up. 

But how do you come out of the other side? 

Claire: When people have flare-ups, it’s very common for people to feel like they need to retreat to their bedroom and lie in bed and wait for the flare-up to pass. But actually this can prolong flare-ups for lots of people.

It can be very challenging to experiment with this, but you might find that retreating from loved ones and friends actually can make you feel worse in the long run, if that’s something that’s really, really important to you. If you are somebody who creativity is a really important part of your personality and what enjoy doing then it might be that navigating a flare-up can involve doing some of that activity. So whether it’s cooking or art or craft it’s really important to involve some of those activities that you really love doing as early as possible in your flare-up so that you can keep doing them on a daily basis.

It’s also really important to connect with what makes you feel like you. And when you’re experiencing severe symptoms, it can genuinely feel as if there is no way you can engage in this…in any activities and you must rest until this goes away. But that isn’t always true. And actually, if your flare-ups aren’t…if you’re managing to do things during your flare-ups, it can actually help you recover on the other side.

Often people will find that once they are coming out the other end of a flare-up, it can take them a number of days or even longer to recover to the point where they’re able to do as much as they did before the flare-up. And in the some cases, some people do struggle to get back to their previous level of activity, depending on how long the flare-up lasted for. I know Natasha that you’ve had really difficult flare-ups in the past that have lasted for a number of months. And it’s taken a huge amount of work to recover the kind of physical capacity that you had prior to going into the flare-up.

Natasha: My experiences with flare-ups have definitely changed over the years, both in terms of impact, and in terms of how I approach them.

One of the interesting things I’ve experienced after 5 years of PT, is that my level of decline during a flare-up has lessened. By which I mean, that when I’m coming out of the flare-up, I don’t start again from zero. 

We may often feel as though a flare-up can lead to a permanent reduction in our ability – but as I got better at learning how to manage my condition outside my flare-up, and worked on getting stronger, it made recovery from the flare-up easier because it had all that work to build back from. For example, I can now take a month of break from my PT due to fatigue, but I am able to get back to where I was. 

During my time off, I might do even 5% of what I was doing before. And when I come back, we may have to start really slowly and build up again. But my body has been here before. It knows what to do, and it takes a lot less work to get back to a certain level, than if I was going there for the first time. 

This ties into something called “No Zero Days” – if you’ve never heard of this concept I did a helpful instagram post on it that I’ll link in the show notes – but for now I’ll let Claire explain… 

Claire: It’s not completely stopping the things that matter. And for me, the things that matter are obviously what matters to you. But it’s also things like movement and your diet and your sleep. Daylight, trying to get daylight every day. It’s these things that are the building blocks to having a healthier approach to flare-ups, because it can feel in a flare-up that you need to stop these things. Or you don’t feel like eating, or sleeping becomes really affected. So it’s about trying to protect the stuff that makes up our lives during those times where it’s tempting to stop everything.

Natasha: So especially during the early days of a flare-up, something like a No-Zero day might be making sure that you can go and stand by the window and get light, even for a minute. It can be brushing your teeth while sitting down. It could be making sure that you have water and a little bit of food. And even if those are the only things that you do, it’s giving your body a chance, as you said, to move. You are looking after yourself. You’re doing all of these things. And again, you might only be able to do one of those things and that’s completely okay.

Natasha: And I think it’s getting help, if you can, because I think when we talk about all of these things, it can often feel really overwhelming when we’re talking about doing activities and planning things in and doing all of that, especially if you feel really, really terrible. And I think the thing that I learned myself, and that I always say to a lot of my friends who have developed things, is just start with one thing, one tiny thing. Sit up for 30 seconds. Drink some water. Even if all you do that day is make sure you have drunk a bottle of water and you hadn’t done that yesterday, that is making progress with your flare-up.

Claire: Absolutely. And this is what I was saying about trial and error when we were talking about early warning signs or how do we approach a flare-up. So much of this is just experimenting with one thing and seeing if that’s manageable for you. And building those up slowly and steadily is crucial. I really believe that these small habits can make a massive difference over a long period of time.

Natasha: As Claire said, keeping up some level of activity, no matter how small, is really important – particularly in the later stages of a flare-up when you might feel as though you’re getting better for a day or two before experiencing symptoms again… 

Claire: As things begin to settle, you might find that you can do more again, or that you maybe have a good day or two. What’s really crucial during this time is that you recognise how long you’ve been experiencing your flare-up as this might have had an effect on you kind of physically too. For example, coming out the other side of a flare-up, if you’ve been in a flare-up for a week, you could almost think about if you’d had a flu-like illness where you had done less for a week, and then you were coming back out of it.

You wouldn’t necessarily go back to everything that you were doing beforehand. You’d probably want to build things up gradually. I suppose pace yourself again coming out of the flare-up. And that’s really, really important because when you’re getting back to things after a flare-up, you are at risk of the flare-up continuing again. And as humans, we’re really, really good at blocking out when we’re going through a really difficult time.

You may have almost forgotten how bad things were even a day or two previously. You might think it’s totally acceptable for you to pop out to the shop, even though that would be the longest time that you were on your feet for the previous week. I’d really encourage you to build things up gradually when coming out of a flare-up. And the same goes for things like concentration. You might be quite hard on yourself about wanting to get back to whether it’s school, uni or work.

But it’s important to recognise that after a period where you haven’t been able to concentrate as much, that it’s important to pace yourself out of that as well and gradually build up the amount of time that you’re doing things. That can mean just sitting up at a desk to read a book or to go through a magazine rather than doing it sitting down. It can mean taking short walks within the house or even just out your front door or to the pavement outside, depending on whereabouts you live, before venturing any further.

These are just little tips that are really important, and it’s also important to look at your nutrition over this time and making sure that you’re eating well to compensate for the fact that you’re going to be doing more.

Natasha: Something that you told me, I think this was at the beginning of the year, it made me think a lot that, for example, say you’ve been in a flare-up for a few months and you start going back to work and you only go to work for a few hours. You’re planning on going to work for a few hours, but say you’ve been kind of slowly building things up in the house, but not very much. When you go to work in-person, like I used to go to work for a few hours once a week, but that wasn’t even once a week. It was like once every few weeks and then sometimes once a week, but what did I have to do? I had to be clean. I put on makeup, I got dressed. I had to eat. I had to like get ready. I had to go and sit in a car for an hour.

I then had to be around people. All of these things that I do not do on a day-to-day basis anyway, I had to do all of them in a really short period of time. And every single time I would have to recover from those few hours of being in the office because it’s not just being in the office. It was everything that went into it beforehand as well.

Claire: And all the travel and everything.

Natasha: All the travel, but even something that you said, if you’ve been in a flare-up and you haven’t been getting “dressed dressed” and you haven’t been putting on makeup and you haven’t been doing all of these things, that in and of itself is quite a big activity. So if you’re then saying, I need to do all of this and make myself get all dressed up in whatever way people like getting dressed up. And then I have to leave the house. And then I have to do a thing. Just that process of getting dressed and putting your makeup on could be a lot if you’re not used to it. So that’s even something that even before you think about leaving the house, you have to think about like, am I used to getting dressed every day?

Claire: Absolutely. And that’s a really important part of going through the flare-up is trying to keep going with these daily activities. So then it’s not as much of a mountain for you to climb on the other side. Those daily activities are really crucial and building blocks. And as we said, it’s not about doing them all to the same standard that you would if you weren’t in a flare-up, but it’s about doing enough so that you’re keeping the habit.

Natasha: As we’ve said throughout this episode, flare-ups look and feel different for everyone. But one thing many people experience during a flare-up is guilt. 

You may feel that they’re letting yourself, your family, your friends, or your colleagues down, and it’s something Claire often talks about with her patients… 

Claire: It is crucial when you experience a long-term condition that you recognise the effort that you put into daily activities that other people just don’t have to deal with. And especially in a flare-up, it is part and parcel of your condition. And the guilt that you’re experiencing is probably constructed from the social norms of the society in which we live in.

So a lot of our guilt is coming from things that we haven’t chosen for ourselves. A lot of the guilt comes from, I suppose, overt and subconscious advertising about what a good, productive member of society looks like. And these messages come through the whole of our culture growing up, and are also reinforced by our community. So one of the ways in which I encourage my patients to work with that is first of all, by acknowledging that a lot of the expectations that we hold ourselves to are not realistic and are often not the things that we truly hold dear to our hearts.

And then the second aspect of it is again, coming back to prioritising, I get them to prioritise the stuff that really does matter to them rather than the stuff that they think they should be doing.

Natasha: It’s important to say here, for some people, taking time off work just isn’t an option. Perhaps you’ve got children to care for or elderly relatives who rely on you. Putting your health first isn’t always as easy as it sounds, so it’s important to be kind to yourself and do what you can, where you can.  

If you really struggle with this whole process of recovery, you might take comfort in knowing that’s really common too! Claire says it’s something she sees a lot…  

Claire: When you experience long-term conditions, it can be really hard for you to look after yourself, and we don’t know why these things come about or why people develop multiple symptoms and multiple pains. It’s often for a whole variety of reasons, but I wonder if there’s something to do with giving people breaks, because I think for a lot of people who experience long-term conditions, they have real difficulties putting themselves first. I think they put themselves quite far down their list of priorities, and I wonder if long-term conditions sometimes teach us how to put ourselves a wee bit further up the pecking order.

And certainly that’s been something that I’ve learned through my flareups is that it’s a sign for me to look at where I’m putting my energy and to prioritise that in a better way, in a more sustainable way, so that I can continue to do the things that are really, really important to me in a way that I can manage with all the other demands that I have. I think that’s what it all boils down to really, Natasha, isn’t it?

Natasha: Before we say goodbye… just a quick word about how to recognise what’s “normal” for you and when you might need to seek further medical help during a flare-up…  

Claire: It is really difficult to understand the differences and unless you’re working with a medical professional who can give you some guidance on when to attend for further advice, it can be really difficult. So I would generally encourage people to access. NHS 111 has lots of resources and advice that they can give out to people if you are concerned and believe that you need to attend an out of hours for A&E or another healthcare professional alternative, there’s a lot of really helpful information on various NHS websites across the four nations. So I know that in England, it’s NHS Choices and up in Scotland, it’s NHS Inform. So there’s advice on there if you’re experiencing new symptoms and equally, it’s about recognising that when you do experience a long-term condition, attending A&E unless it’s for something like a dislocation or a fracture, isn’t always the best course of action and isn’t always as helpful.

So if there is a healthcare professional that you are working with who could offer you some guidance or help you work out if this is part of your long-term condition or if it’s something else that needs further investigation, then I would access them. So that might be a general practitioner, but equally, the primary care teams often involve people like advanced nurse practitioners or advanced physiotherapy colleagues. So first contact practitioners in GP practices may also be able to offer you some guidance and reassurance, if that’s what’s appropriate, for an increase in your symptoms.

Natasha: A lot of times it just comes with time as well and understanding your condition. There’s a spectrum of people that have engaged with the content that I’ve made. And they range from people who have had their health conditions for years, if not decades, and people who are very recently ill. And I think when you have been ill for a very, very long time, it gives you a perspective on your health and an understanding of the ways in which your conditions can change over time and the way that they impact you than when something is very new and very scary and none of it has happened to you before. And so your response is going to be very different if you only became ill six months ago and this is your first flare-up and you have no idea what’s going on to somebody who has been through this over a much longer period of time and has an understanding of these things and what is, quote unquote, normal for their body.

Claire: Absolutely. And often when you have complex long term health conditions, you are the expert in your own body but building that expertise, as you said, takes time and experience. You almost have to go through that period where you’ve had your diagnosis., you know what options are available to you or lack of options are available to you in terms of treatment, and you’ve had that support from healthcare professionals and others, either in your family or in your community to help you adapt to this. But it can be really scary when you’re going through that first flare-up and it’s all about recognising whether this is an increase in your usual symptoms or whether this is something new and different.

It may still be related to your original condition but often people do need that confirmed diagnosis, that it is part of their condition or that opinion from a healthcare professional because it can be really hard to just let this be another symptom that you have to deal with. But hopefully, in the case of flare-ups, they do settle down. They can take their time to settle down but hopefully what we’ve discussed today will help you to experiment with various things so that the flare-up settles down faster and you’re more confident in how you manage them.

Natasha: And, as I’ve said multiple times, please remember we’re all different. I hope some of the tips you’ve heard in this podcast are helpful to you, but please make sure you listen to your unique body and focus on what works best for you. 

A huge thanks to Claire for her professional insight. And a special thanks to our sponsor, YuYu Bottle. To learn more about their eco-friendly, hot and cold water bottle go to yuyubottle.com and enter the code RESTROOM15 for 15% off your order. 

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