The Rest Room: What Are Your Barriers To Moving With Chronic Pain? [Transcript]

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Hello and welcome back to The Rest Room – a podcast about living well with chronic illness!

I’m your host Natasha Lipman.

I just wanted to say a quick thank you to everyone who took the time to listen to the first episode, where we discussed understanding movement when living with chronic pain. 

I’ve had some really great feedback, and I was especially excited to hear from people who told me that for the first time in a really long time, they feel like they might be able to find a way to exercise in a safe and sustainable way. And that made me really happy, so thank you! 

Today, we’re going to be following on from our introduction by talking about barriers to movement. 

Why is this important? 

Well, changing behaviour is really bloody hard, even at the best of times, and we often underestimate the difficulties we’ll encounter when we try to break a habit or introduce something new. 

How many of you have embarked on a new fitness regime to help with your health condition, only to stop within a day, a week, or a month? That could be because of pain, fatigue, lack of confidence, lack of support, or one of many other reasons.

I’ve been reflecting a lot on what my own barriers to movement have been over the years, and you can’t see, but I am raising my hand here with you! 

For this episode I’ve once again partnered up with the brilliant Claire Campbell from the Physiotherapy Pain Association to make sure that we’re sharing the latest evidence-based information with you.

Claire also lives with chronic pain, so she “gets this” in more ways than one!

This episode still forms part of our introduction – so we may touch on some concepts, tools, and tips that we will be expanding on in the future. There’s just a bunch of stuff that is pretty important for you to keep in mind before you start trying to make any changes. 

We hope that this will get you thinking about how your own barriers may be impacting you and your life, and we’ll be sharing some tips for breaking habits that may have formed for very important and legitimate reasons, but may not be helping you anymore. 

Before we get into the meat of the episode, some really quick admin stuff. 

If you enjoyed listening to this episode, please subscribe, consider rating on your podcast hosting platform of choice, and share the episode with your friends slash social networks. 

You can find the accompanying blog post to this article, as well as the transcript and any resources mentioned linked below! 

I personally take in information much better if it’s written down, so I hope that this will be helpful if you want to refer back to anything discussed in today’s episode at a later date.

Oh, and please indulge my standard disclaimer: just like in our last episode, I want to make it very very clear that sometimes you’re just not well enough, or you have a condition where certain things may not be recommended for you, and that’s ok too. 

The aim of this series is absolutely not to push you into something that you’re not ready or able to do. All of this is here to provide information to people who could potentially make use of it.

It’s important that you’re in a place where you’re ready to hear this kind of information, be able to take it in, and be ready to do the work.

When you’ve been struggling with something for a long time and have had negative experiences, it can be really hard to be open to learning new things and changing your mindset and approach. 

I mean, that’s literally talking about barriers, isn’t it – so let’s get started! 

What an unintentionally smooth transition! 

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In many cases, it doesn’t even matter how motivated you are and how much you want something in your life to change, doing what needs to be done can sometimes feel impossible. 

Obviously there are some barriers to change that are not within our control, but there are also some that we can absolutely address. And that’s what we’re going to be talking about today.

The first thing that’s worth addressing is the difference between reverting back to old habits and what Claire likes to call blips.

Your new habit could be going really well for a while, but then you get stressed, bored, hungry, lonely, tired, are celebrating something great, or you’re angry – and then the plans you’ve set out for yourself just don’t have the same appeal anymore. 

This is totally common for anyone trying to start something new, and can be super frustrating that even when we’re really motivated, those blips can still rear their ugly head. 

I’m pretty sure most people have gone through this at some point. 

But, as I mentioned, there’s an important difference between reverting back to old habits and a blip. People who manage to stick with new habits are able to recognise blips for what they are, work out why they occurred and get back to their plan. 

Sliding back to old habits is common, but relapses can knock your confidence and make it harder to make changes in the future. 

I know that I find it really hard to start something back up again once I drop a habit, even if it’s inadvertent, and the habit is something that I know really helps me. 

It’s often the stuff that’s the best for my mental or physical health that can be the first to go when my available energy spend becomes much lower for whatever reason. 

Claire recognises this too and has really benefited from advice to prioritise healthy habits when times get tough, rather than her usual coping strategy which is to ignore her own needs and take on more work. And all I can say to that is…yeah…same.

I’ve also learned a lesson in the last year and a half that was a total game changer for me. 

It’s about plateauing. 

Whenever I would have a flare up, I’d get really upset because I felt like all the hard work I’d been doing was for nothing. It felt like a backslide and I had to, forgive the cliche, climb back up the mountain again. But actually it wasn’t a backslide. It was just a pause. 

Every time, once my body was ready, I was able to build back up to where I was. Or y’know, climb back up the mountain or whatever. 

My body hadn’t forgotten all that work I’d done, it just needed a break. I had to slow down and adapt to what I could do at any given time, but my body already knew the path back to the place I’d stopped at. I just needed to have some patience. 

Seeing these pauses as just that, a pause or a blip, not a backslide, also played a huge role in helping me confront a major barrier to movement in the past, and helped me to stay motivated, even during difficult times when I had to dial back. 

The key is to see those inevitable blips as a way to learn how to adopt that habit in a new context, rather than stop the healthy habit entirely until the conditions are quote unquote perfect again. 

Often, we tend to get really excited about something new, and jump in head-first. But we’re more likely to be successful if we take that thing we want to change, and start gently – slowly building the habit and progressing steadily over a period of time. 

Small changes really matter in the long term and provide us a solid foundation to build from. 

Within an ACT model (which means Acceptance and Commitment Therapy), Dr Russ Harris has described barriers to change and processes to overcome them that can be helpful. 

He uses the acronyms FEAR & DARE and I will link to his worksheet below. I would also highly recommend listening to the interview I did with internationally recognised ACT researcher and clinical psychologist, Dr Whitney Scott for some more information about this. I’ll link that below too.

So where do we start? Well, a pretty good place is to remind ourselves that our thoughts are not always true.

Having fixed thoughts can be a huge barrier to movement – either when it comes to what we believe movement needs to look or feel like, or about what we believe our body is, or in many cases isn’t, capable of. 

Again, I think this is a topic that can feel really challenging for people who are literally scared of their bodies, or have bodies that they feel have let them down a lot in the past. 

We’re not saying here that fears are the dreaded ‘all in your head’ nonsense, but it is pretty accepted in the pain management field that sometimes these fears, that again came about for very legitimate reasons, might persist beyond their usefulness, and eventually can even stand in the way of people making the progress that their bodies are actually safely capable of.

One way of overcoming this initial barrier could involve recognising your fixed thoughts as what they are – your mind creating a story based on your past experiences – and you can experiment and see if you can start to shift this opinion. 

But put a pin in that as we’ll go into this in more detail in the future.

Many people have found that gently experimenting with their beliefs about their body has unlocked their potential for progress or recovery and allowed them to build more confidence in their movement. 

However, you may need support to help you set this at the right level for where your body is right now so these experiments can be carried out in a way that makes you feel safe. Again, this is something that we’ll cover in a later episode – so…maybe don’t just jump straight into trying an Instagram workout! 

Ok? Good!

Instead, let’s talk about the importance of celebrating small wins.

I know, I know. I HATED being told this for many years. 

Why should I celebrate something that most people take for granted? Why should I celebrate being able to do something that is a fraction of what I actually want to be doing? 

Well, setting goals that are extremely difficult to attain are a sure fire way of sapping your motivation and willpower. 

Plus, by having these huge expectations of what we can and can’t (or should and shouldn’t) be doing, we’re often basing our self-worth on a fictional healthy idea of who we are – so even if you have made huge progress, it can be hard to see because we’re setting ourselves up against an unfair and unreasonable standard.

A good rule of thumb is to learn to set realistic goals. But what do we mean by this? 

Realistic goals are the ones that you are about 80% sure you can complete within a time frame that you have set for yourself. 

That sounds really high, doesn’t it? 

Well, short term goals can improve your confidence and comfort with movement, or an activity that has some meaning for you. 

I actually have a little technique that I use when I’m feeling at my worst and have to put a lot on hold while I rest and recover. I always used to feel guilty and really awful about myself during those times, so I started writing a reverse to-do list – a have done list. 

I write down every activity I do in the day – and it makes me realise that even on my worst days, I may have been able to do something, even if it’s the smallest thing ever to someone else, and that IS an achievement considering how rubbish I was feeling. 

It helped me recognise the importance of shifting my goals depending on how I was feeling on any given day, and helped me to view the big and the tiny as equally important – and that ultimately made me a lot happier and better able to cope when getting through the day was the best I could do just then. 

Doing this shifts the focus from what I can’t do to what I have achieved – and it improved my quality of life a lot. 

As we mentioned in the last episode, people who have the lowest levels of physical activity actually have the most to gain from moving even a little bit more. 

Unfortunately, the lower the level of physical activity you’ve done in the recent past, the more challenges you may face when it comes to exercise tolerance or capacity. Claire told me that the less exercise tolerance someone has, the less they’re often able to do their physiotherapy programme. 

This is likely because the programme was actually set at the wrong level for the individual on that particular day. It may be that you are doing other physical activities that day – that are making doing your physiotherapy difficult, and unintentional and intentional movement counts here. 

So think about things like how you actually got to your sessions, are you doing extra travelling because you had to take public transport, did you cook an extra meal that day?

All of these things in the day really do add up.

If your new movement practice causes higher levels of pain and fatigue, it’s going to be harder to talk yourself into it, and, y’know, we ultimately want to avoid people from feeling like they’re harming themselves – and that’s where we have to tread a very fine line.

When you’re first starting out, building the habit of movement itself is more important than the actual amount you do. I say movement over exercise because in the context of someone living with pain, we do need to reframe what movement means to us.

My brilliant Occupational Therapist, Jo Southall, gave me an example which I found incredibly helpful when reframing what movement meant within a chronic illness context. 

Yes, people who don’t experience pain or fatigue or whatever might be able to go for a walk at will, or for a run (I mean…that’s really weird), but for someone who has, for example, been bed-bound for months on end, movement could literally be sitting up in bed supported by a pillow for 10 seconds. They do that for a few days and then extend the length of time slowly if they are able to. 

Or if you’re someone who spends the majority of your day in bed, you could start by consciously adding a little more physical effort into activities you are doing anyway, or trying out the ‘movement snacks’ mentioned in the last episode. 

Claire loves this phrase – coined by an Occupational Therapist specialising in Pain Management, Dr. Bronnie Lennox Thomson. 

Basically you incorporate small movements while making an effort to get out of bed every, say, 30-60 minutes to, for example, look out of the window, do a quick stretch, or walk around your room – and that again depends on what you can do that day. 

I tend to find that my ability to pace this kind of movement snack is really variable, and it depends on my energy or how much I’m working because oy vey is it is easy to get distracted behind a screen and not to move for hours on end. 

So my rule of thumb is to try to do this as much as I can when I can. 

I often literally have to set timers to remind me (and I like to use an adapted Pomodoro timer when I work, for example. But I always keep in mind that there are times that quite frankly it’s just not going to happen, especially when I’m really tired and I can’t bring myself to get up, and that’s ok too. 

This is literally what we mean when we talk about dose. Even those of us who have experienced chronic pain for years, often find it hard to imagine movement and exercise outside of an able-bodied perspective. 

We often try to rely on willpower to push ourselves through all kinds of difficult things. And that often misunderstands how willpower works…but there’s also a difference between setting safe and realistic goals, and pushing yourself to do things in a way that will ultimately be more harmful to your health and wellbeing. And when you’re not getting the right support, it can be really hard to know where that line is in the first place.

I still remember being told by a physiotherapist that I’m too stubborn to ‘end up’ in a wheelchair when I voiced my fears about my body getting worse, and I know that that stubbornness led me to push myself way too far, way too many times, in an effort to keep as mobile as possible and that was ultimately to my detriment.

While it often feels like it is, apparently willpower is not a limited resource, but it is something that appears and then passes like an emotion. 

We tend to feel more motivated when we achieve what we set out to do and we then give ourselves credit for it. 

I also think that some people are just naturally more motivated as people than others, and that comes down to our personality. That side of things, the personality side of things, is not often talked about in the realm of chronic illness but I think it plays a bigger role than we often give it credit for. 

That is why it is so important to set the bar at an achievable height. It’s also easier to do something hard when it’s part of our routine, or we adjust it to make it easier to do, rather than not doing anything at all.

One of the most obvious limited resources for the majority of people is money. But it’s important to know that you don’t need to spend any money to start adding a little bit more movement into your life. 

Claire told me that paying for a fitness membership, equipment, sessions or classes may seem to increase motivation, however, if this were true, more people would use their gym memberships rather than letting them lapse out after the initial motivation wears off. 

It seems that social support and understanding your purpose for doing a movement practice is more important for keeping it up than the cost or the quality of the teaching. 

That being said, it is totally understandable that people feel frustrated and abandoned when they have little, if any, access to the professionals who can give them the individual care and support that they need (and they quite frankly deserve). That is, honestly, the biggest motivation behind this series.

There are lots of things that can be tried for free, especially with the proliferation of online videos for every kind of movement. We’ll be discussing this more in future episodes. 

So, if your values and your purpose are so important to figuring out your movement practice, it might be good to take a pause here to think about what matters to you.

Often when people struggle to achieve a goal it’s because it just isn’t that important to them. 

They may have set that goal because a loved one wants them to, or a healthcare professional told them that it’s important. 

But unless the goal connects to something deep inside of you, other things will always take priority. 

People living with chronic illness have quite bloody enough going on, let alone adding in a goal that has little meaning to you personally. 

Values are principles to live by or a life direction, rather than anything that can be achieved. They are what matters to you, deep inside your heart and what you would want others to say about you if they were kind of defining you as a person. 

If values are a life direction, goals are the pit stops along the way. For example, do you want to be an engaged and fun parent? You may then set a goal of being able to play with your kids for a bit longer. 

Is creativity or adventure your passion? You may set a goal of having the stamina to try a new recipe or want to find a way to adapt knitting so you finally can make a scarf for the first time. 

If independence and self development are your thing, you may want to be able to find a way to work more sustainably.

Setting goals based on your values brings you closer to the way you want to live your life, and it makes it easier to slot in with your other priorities. 

My goals in a rehabby sense are usually based on quality of life improvements and take into consideration where I am now. They’re then broken down into really small steps that eventually build up to a larger change that would have felt impossible if I hadn’t taken all those pit-stops along the way. 

One way of figuring out how to do this is to turn towards discomfort. I know, it sounds really weird right?

How much time have you spent and suffering have you experienced over the years as you’ve worked your arse off to try and reduce your symptoms? 

Some of you may be coping really well with a treatment or treatments that are working for you. 

But for others, attempting to reduce symptoms can become an overwhelming, life altering yet ultimately unfulfilled journey (I really hate that word but it works in this context and I couldn’t think of anything else so please forgive me!) which takes them away from the life that they want to be living. 

People with chronic illness can feel pulled away from the life they want to live and believe that once the pain is under control, they will get back to the person they once were. 

For many, trying to control the pain means giving up on aspects of life that are most meaningful to them. This understandably can affect mood and motivation, leading to more pain – on top of the pain that you might already be experiencing. 

By acknowledging your whole experience, warts and all, you can make decisions based on what you want out of life, rather than using your energy to control your chronic pain. Especially as chronic conditions can be shape shifting chameleons – as soon as you think you have it sorted, something changes. 

And as hard as it can be to hear, I know that for me, and for many others, getting to a point of acceptance of where you are right now rather than constantly fighting against your body can be a huge turning point when it comes to doing things to help improve quality of life. 

You’re dealing with the reality of your situation and not waiting for something to change that ultimately we don’t know if it’s ever going to come. And that’s quite a powerful place to get to, I think. But it takes a different amount of time for everybody.

When feeling stressed, anxious, depressed, low in mood, low motivation or helpless, it can seem like moving is the last thing you should be doing, but routine and movement is known to have a positive impact on all of these emotions. 

The key, again, is getting the dose right. And you are the only one who can really figure that out. So no, don’t worry, we’re not saying ‘just go for a walk and exercise’ and be the most fitspo person in the world and all your problems will go away and you’ll feel better – because it’s a lot more complex than that. 

People who experience higher levels of pain and fatigue with exercise are less likely to have a regular movement practice. So, when we talk about ‘turning towards discomfort’ sometimes that may be the discomfort of not doing a whole movement practice, or adapting a practice to meet your needs. 

Before she became a specialist in pain management, Claire had severe FOMO, ignoring her condition and symptoms unless absolutely necessary. This resulted in significant pain and flare ups that worsened over time and she coped by retreating to bed. 

This is something that I can massively relate to. When I was younger, I was forced to push through the pain to exercise with my peers – only stopping when I’d inevitably injure myself. 

Over time, I became scared and avoidant. When I finally got specialist physio, looking back I realise it wasn’t tailored enough to my whole body and it didn’t take into consideration where I was mentally. I was not only pushing my body to try to keep up with my peers in day-to-day life, I was also being pushed to do exercises that ended up causing me more harm even though I was trying to explain that I know the difference between good pain and bad pain. 

I was getting really mixed messages, being told I needed to rest but also keep as mobile as possible – and these concepts were never really explained to me in a way that made sense until literally this year.

With my body declining, I got into a boom and bust cycle – pushing myself to try and keep up – and then crashing sometimes for months at a time. It was…not the best, and I probably lost a good few years of my twenties to serious crashes because of this.

Claire and I have both experienced a similar revelation over the years. Annoyingly, it’s pretty much the basic advice that I strongly believe people should be given right when they’re first diagnosed. But I won’t get into that now because I could go into a whole rant so we’ll save that for another time.

With practice, and learning to become aware of not just our bodies, but everything in our day-to-day lives, we recognised that by stopping before we were forced to, we could reduce the severity of our flare ups. 

I have some great resources on pacing that I wrote in collaboration with Jo Southall, that I will also link below. I hope they will help you if this is a totally new concept. Basically pacing is way different from what I always thought it was – and it’s about improving your quality of life and enabling you to do more rather than the restriction it always felt like it was when I thought it was literally do an activity and then do literally nothing for a long time.

Learning to pace this way wasn’t easy and it involved learning a whole new set of skills and changing a lot about our lives. And even with all these revelations and skills and knowledge, we still have to talk ourselves into doing this stuff sometimes because it does take up a lot of mental space.

But for both of us, pacing reduced the severity of our flare ups. In my case, I also used a wheelchair when going outside for a few years. The pacing and the wheelchair allowed us to save ourselves from unnecessary additional pain and fatigue in our day-to-day lives, which gave us the opportunity to experiment with activities that we now find restorative and fulfilling. And that’s something I never thought I’d be able to say.

It sounds really counter-intuitive, but I know that the biggest unintended consequence of using a wheelchair was that it helped me become fitter and more mobile. 

It’s not just about exercise or movement itself – but everything else in your life too. We can’t expect to ADD something in – especially if we have very limited energy to start with – without thinking about making the wider context of our lives more sustainable, to enable us to do the movements in the first place.

I hope that makes sense! I want to talk about this a bit more with my PT because she explains this in a really smart way that I’m not going to try and replicate now.

One thing that’s really helpful is to plan for when things don’t go to plan because most people with chronic illness will know that you never really know what your body is going to throw at you on any given day.

Claire told me that whenever she is struggling with whatever she has set out to do, she looks at all these barriers to help her work out what’s getting in the way. 

This has had a profound effect on helping her to focus when she does take on tasks or projects. She finds that she is still as over scheduled as ever (and lol yep same), but she is putting her time and energy into the aspects of life that she finds most fulfilling, and she feels less guilty about delegating or ditching certain tasks. 

No one person can do everything, and life always has a knack of getting in the way of changes that you want to make.

We also all have different priorities and things that we enjoy. I’ve actually found during lockdown that my FOMO has gone, I no longer feel like I want to go out and do things, or even really be around people – and that’s probably really bad. But a big reason for this is that I’ve gained a significant amount of energy because I’ve not had to spend it on these things, and it has overall made me question whether I get enough out of it for the impact that it had on my quality of life. 

I find that whenever my health takes a dip or things out of my control pile up, it’s often the very things I need to do to keep myself a bit more stable that are the first to go. 

I’m going to be interviewing Claire soon for the podcast because even though she is a “specialist in pain management” she can find it hard to balance managing her conditions with everything else that is important to her. 

Honestly, it made me feel way better about myself and helped me to realise that even if we have a whole routine that we know helps us day-to-day, and we know how to advocate for these things and help other people with it, we also have to live in the real world and there is no ‘perfect’ way to cope and to manage. Again, I feel like I’ve said this so many times, but all we can do is the best we can on any given day. 

I basically have a mental list of things I know that in an ideal world I would do every day. Some people have an actual physical list if that helps them to remember. 

If I’m being honest, I don’t think there’s a single day I do all of the things that are on my list, especially when I’m working. 

But I try and make sure to at least try and do one thing, even if it’s just paying attention to sleep hygiene and hiding my phone away after 10pm. Or it is doing my stretches or I’m setting a few timers to make sure I’m not spending to long in one position. I’m slowly working at building things into a more sustainable routine, though. Because blah blah self-care etc etc. But it is actually really important

*Music plays quietly over speaking*

I hope that this has given you an idea of some of the barriers you may have faced when trying to stick with an exercise regime in the past, and how you might help yourself to adopt a new movement practice in the future. 

These barriers can be applied to pretty much any area of your life to make the changes to move towards your values and doing what matters to you. 

A regular movement practice can be training to desensitise, increase capacity and reverse some of the effects that can come with chronic illness. 

In our next episode, we’ll be talking about how Claire helps people who have a difficult relationship with movement and little confidence in their bodies approach exercise and movement, often for the first time in a long time. 

This will be a really practical episode, as Claire is super keen to share ways that you can reflect on where you are now and make sustainable plans to move that won’t feel scary. So you may want to listen with a pad and pen, but again I’ll be writing a blog resource that isn’t audio so you can kind of use whatever is helpful to you in that situation! 

I know this may seem like a lot of talking and thinking before we even get to talking about movement itself, but I think it’s so important to recognise where these barriers come up so you’re in the best place to succeed when you do start because I know even talking for myself I would stop and start and stop and start and every time I failed it made it harder and more scary everytime i started up again. So going through this process will hopefully help you feel more confident when you start. And I’m really excited to share the episodes we’ve got planned for the future because there’s so much helpful but empathetic advice that I hope will be really beneficial. 

Anddd yeah that’s it for today! I still haven’t come up with a smart, funny jingle thingy!

Thank you to you for spending your time with me in The Rest Room, to Amit Rai for editing this episode and for composing my theme music, which if you don’t know is called HipTasha because I am very hip, and to my best friend Lucy Dove for all the design elements you see here on the podcast and my blog.

Links to all the resources are in the description below, you can find me on socials @natashalipman, that’s L I P for Peter M A N. And if you enjoyed this, please do tap that subscribe button to be notified of when new episodes are released and consider leaving a review because apparently that’s really important.

One final huge thank you to Claire for working with me on this series and I’m super excited for the next few episodes. Bye bye for now!