The Rest Room: An Introduction To Exercise With Chronic Illness [Transcript]

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Hello and welcome to ‘The Rest Room’ – a new podcast from me, Natasha Lipman!

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If you’re listening to this, you may have been subscribed to my old podcast, Spoonie Pyjama Party.

That was a whole three years ago now, and I thought it was time for a change.

If you don’t know me – hi! I’m Natasha. I’m a blogger specialising in chronic illness and a journalist working for a major broadcaster.

Over the last few months, I’ve been taking a break from social media, and have been trying to figure out a way to come back and keep writing that felt more sustainable for both my energy and my happiness.

I posted on Instagram and got a lot of really great feedback about how to go predominantly blog-only in a way that also felt accessible to other people, and an audio option was highly requested.

So, here I am! The start of this series will be audio versions of my latest blog posts, but I’m really flexible and open to feedback and suggestions on wider topics and themes.

If you’ve heard me speak before, you’ll know that my biggest motivation is to create content that I needed to read when I was diagnosed a decade ago.

So, with that in mind, you can expect to find me speaking with experts on managing issues that are impacted by chronic illness – like exercise, pacing, pain and sleep.

I’ll also be speaking with people who have created businesses and are generally doing really great stuff while living with chronic illness. And I’ll also be speaking to people who are supporting the chronic illness community by starting really cool businesses, including things like accessible fashion and mobility aids. And as I said, I’m always really open to hearing suggestions for who I should speak to and great things to feature.

When I was younger and first diagnosed, I sought out support groups on Facebook, and found myself confronted with a whole lot of people telling anyone new who joined that their life was over.

That, more than any diagnosis, somewhat messed me up for a while. I have more empathy for people in those groups now, and I completely understand where that whole mentality can come from, but I know a lot of people have experienced this environment and have been really harmed by it.

A very wise person once said to me, that there is no correlation between health and happiness. As wanky as that can sound, I think there is so much important information about the management of chronic illness that sadly isn’t often presented well to patients (if it’s presented at all), and in these upcoming episodes, I will share some of the latest evidence-based advice and support from amazing experts, that I hope are as interesting and helpful for you as they have been for me.

If this is your kinda thing, you can subscribe to The Rest Room via your favourite podcast app, and you can find me on Instagram and Twitter @natashalipman. Transcripts have been made available too, and will be linked in the description below. You can also read the blog post that is linked to this episode depending on how you like to take in your information.

Today’s episode is an introduction to my new series on understanding exercise when living with chronic pain. I’ve written a post about my developing relationship with exercise which I will link below so I won’t get into today, but am happy to talk about this more if people are interested.

I’m now in a place that I never thought was possible and it’s brilliant and weird and confusing and somewhat upsetting, as I think I only became as disabled as I did due to not being given the right care when I needed it. And sadly this is the case for so many people.

I’ve worked with the wonderful Claire Campbell from the Physiotherapy Pain Association to create a series which will hopefully give you an insight into what physiotherapy is, how to reframe how we think about exercise and movement, and some ways to work through both the physical and mental barriers that many people face when it comes to figuring out how to move and to get physically stronger in a way that feels both safe and sustainable.

Because we have so much information about this, I’m gonna split it up into more than one episode. So if you have any questions before the next ones are released, please do share them in the comments on the blog linked in the description. And I hope that this shorter-form thing is helpful! I guess it’s a good way to pace getting the information and we’ll see how this all goes as this is somewhat of a test episode for me!

I think it’s worth mentioning, that just like with pacing, it’s important for people to be in a place where you’re kinda ready to hear this kind of information, really be able to take it in, and be ready to do the work.

What I mean here is that when you’ve been struggling with something for a really long time, after all, I don’t know a single person living with chronic illness who hasn’t had negative experiences, it can be really hard to be open to learning new things and changing your mindset and approach.

And sometimes, and I want to make this very very clear here, sometimes you’re just not well enough at the time, or you have a condition where this is absolutely not recommended, and that’s ok too. The aim of this 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.

Thinking about movement and exercise can be particularly challenging when you don’t have access to the adequate care that you need. That’s a whole issue for another time. But I really just wanted to kind of recognise that there because there are so many factors that go into it, but it is our hope that with these posts, that you will be able to learn the latest evidence-based introductory information that will help you to take some of those first steps by yourself, in a safe and sustainable way, and become a more informed and active participant in your care.

I hope you find this helpful, and I’m extremely grateful to Claire for taking the time to provide the information used throughout this series. It feels a bit weird since this was written a few months ago to not have Claire in here speaking most of the things herself. But again, this is a test, so we’ll see how it goes.

Today is a bit of a ‘primer’ episode, so we won’t go into too much practical stuff just yet, but I promise these will be coming up in the next ones. Today we’ll be talking about:

Understanding what physiotherapy is
The role movement can play in pain management
Why it’s important that the psychological component of movement and pain isn’t ignored (and I promise I’ll get into this more later as I know it can sound very invalidating)
The expectations that we have of both physiotherapists and ourselves

Ok, so let’s start with the basics, shall we?

What role can exercise play for people who experience pain?

It’s well known that exercise is important for health and well-being. Exercise can support people to maintain symptoms at a steady level and allow them to have the capacity to do things that are important to their daily life.

You may believe that due to the extent of your condition or disability that exercise is no longer safe for you. Again, if you are one of those people, then the advice here is not for you. However, it turns out that there are very few conditions where exercise is not indicated, and often it is about getting the dose right.

It may be that the right dose of exercise to get started with might be much lower than you think is worthwhile, and often what we think of as exercise in the traditional kind of non-disabled, non-chronically ill sense of going to the gym, going for a run, or just you know, quote unquote working out, is not what exercise can mean in this context. And we’re going to get into that more as we go on through these episodes.

It is notable that small increases in daily activity have the most benefit for those that are most inactive – which can be really good news if you feel unable to commit to an ‘exercise programme’ at the moment.

One of the most significant barriers when thinking about movement and exercise are often our own expectations.

So It’s worth thinking about a few questions:

What do you consider to be exercise?
What do you consider to be physical activity?
What does movement mean to you?
Have you been told that movement is safe for your condition?
Are there some movements or activities that hurt just thinking about doing them?

One of my biggest issues my whole life has been knee dislocations and my knee popping out, and it’s been happening since I was very young.

So for me, watching people walk or run in the rain or ice in real life or even on TV, I get a visceral reaction and I feel physically sick. It’s like I’m getting a little kind of memory flashback of what it’s like, and I just see people’s knees flying everywhere.

And that’s something that has translated into how I move and my own behaviours when I have to go out when it’s wet outside, or even if there’s a tiny bit of water on the floor in the bathroom or around the sink when washing up. And this really impacts my day to day life. And it’s something that I’ve had to work really hard to kind of dampen down those fears, which are there for very legitimate reasons.

And again, we’re going to talk about this side of it alongside all of the other stuff as we go further through the episodes.

A lot of these feelings that I’ve had make sense when you learn that people with long term conditions can have beliefs about exercise and movements that are no longer helpful for their health and well being.

Many of us stop certain activities that have caused pain in the past. And that stopping or those changes in behaviour might have been really helpful and necessary in the short term, but can often lead to other problems in the long term.

Many people may also believe that exercise needs to hurt or you need to be breathless for it to be effective.

In the early stages (depending on your current level of daily activity), you may feel that the exercise you are doing “doesn’t count” or is not effective. The key is finding a level of activity that you do and can practice consistently.

Moving your body is a good thing, but especially if you’ve never felt like this has been true for you, you really need to feel safe doing it.

Inactivity has an impact on our mental and physical health. The less active you are right now, the more benefit you can get out of small amounts of activity.

For example, breaking up periods of inactivity every 30-60 minutes with “movement snacks” (you can’t see this but I’m doing air quotes!) can do you good. This can be as simple as standing up, swaying to music, or taking a walk around the room.

For people who have been bed-bound for months on end, sometimes that’s literally just sitting up for a few seconds supported by a pillow. This is where the idea of really tailoring movement, and understanding what exercise is, really changes when you’re putting it into this chronic illness context. And again, we will talk about this later.

Unfortunately, as counter-intuitive as it may seem, prolonged rest can actually result in more pain and fatigue.

In the next few episodes we will discuss an approach to getting more active that takes into account where you are now, what you might experience when you start, and clarifying your motivation for engaging in movement.

But today, we just wanted to share a little bit of information about physiotherapy actually is.

What is Physiotherapy?

Physiotherapists are professionals that work with people to improve their health and wellbeing.

They do this by helping people to find their motivation and solutions to improve their movement. Like any healthcare profession, individual physiotherapists will differ in their approach due to their interests and experience.

Claire, who is helping me with this series, is a chartered physiotherapist who has specialised in pain management. She works for an NHS pain management service, supporting people with a wide variety of conditions, but what they all have in common is that they are trying to live as best they can with really difficult symptoms.

She uses a variety of approaches to personalise the rehabilitation that she offers, with the aim of supporting people to live well with pain. Pain management is really complex, but movement strategies are often a cornerstone of people improving their quality of life.

I think it’s really important to note here there are currently no treatments that consistently reduce pain for the majority of people who experience persistent pain.

So, as a result many healthcare professionals report reduced confidence in supporting people with persistent pain.

It’s a bit weird for me to say this, but here is a quote Claire sent to me when we were writing!

“I experienced imposter syndrome writing this,” Claire explains. “Although I have been a physiotherapist for 10 years, I have had hypermobility and recurrent pain for much longer. For the majority of that time, I have struggled to exercise in a way that is helpful for me. This has inevitably informed my approach to exercise when I am supporting people who experience persistent pain. I am passionate about the ways physiotherapists can help people who experience persistent pain, but I am even more enthusiastic about the things people with pain do for themselves to improve their lives. You are the only person that can change your habits, and that could change your life for the better.”

Natasha’s back here!

Many physiotherapists seek additional training to improve their ability to help people with complex pain.

Claire joined the Physiotherapy Pain Association to take advantage of all the resources the network offers and to connect with others in the profession. This has helped her gain a deeper understanding of the complex nature of pain, and to develop specific skills to support people to manage their pain, including psychological skills.

She makes it very very clear (and I’m going to repeat this) that this is not because pain is psychological, but because the impact of pain can infiltrate every aspect of someone’s life.

An approach that takes this into consideration recognises the past experiences that people are bringing into their sessions with them, as well as understanding their current needs. Therefore, the aim is to be able to offer a more compassionate and helpful approach to patients.

And just as a side note, I think this is the single biggest piece of what was missing from the puzzle when I first had specialist physiotherapy many many years ago. It’s been really exciting and heartening speaking to professionals like Claire to see how this field is developing and it gives me hope for a new generation of patients, as this kind of empathy driven approach is being rolled out in more and more places.

Something else that’s also important to talk about is having reasonable expectations from physiotherapy as patients.

Depending on your goals when you’re seeking healthcare, a physiotherapist can be really well placed to support you to improve your understanding of your condition and how it affects you.

For example, connective tissue disorders and PoTS are spectrum disorders, which means that it will affect everyone slightly differently.

We all know this, but you know your body better than anyone will, but it may be helpful to discuss your difficulties with a physiotherapist to figure out together what could be a changeable part of your condition or how you could manage your condition in a better way.

Sometimes people cope with their condition in a certain situation that is no longer workable when they find themselves in another situation, and this can result in unintended problems. It goes back to that we have very understandable behaviours that we adopt to help us cope. But then things change, our lives change, our bodies change, our situations change, and we haven’t adapted our coping mechanisms and sometimes they can start doing this more harm than good. Often that can be really hard to recognise and it can be a really huge step but once we take that it can help improve our quality of life for the better.

This is where physiotherapists can offer support and encouragement to people who don’t feel confident doing certain activities. They can help you find ways to explore different activity options that might be possible, and ways to think about adapting and changing or approaching things in a way that might be easier or safer or more manageable.

If you have goals that you want to achieve, and this can be in any field of your life, physiotherapists are very experienced in supporting people to develop a plan to help you reach them. They can help you to look at the aspects involved in certain activities, and guide you on a training plan to enable you to engage in them in a safe and sustainable way.

Claire told me about a blogger called Tina who lives with neuropathic pain and has written about getting the most out of physiotherapy. I’ll share those links in the description below.

Physiotherapists, and can I just say as a side I sound like a Youtuber with the description below thing, I should be pointing as I say this.

Physiotherapists can also offer techniques or strategies to maintain your pain symptoms at a manageable level. This may be as simple as further information on heat or cold packs, guidance on how to implement activity management and pacing strategies, as well as a whole load of other stuff.

Physiotherapists deliver rehabilitation to individuals, but also within groups.

Group rehabilitation can be helpful for many, as people benefit from connecting as much with others who experience similar struggles as they do with health professionals, obviously, with the COVID 19 pandemic, the opportunities for group rehab will be affected.

Physiotherapists can do additional training in a range of techniques, so ensure that you weigh up the value of each component in your rehab plan, and you have the right to decline a certain aspect if you do not feel it is not right for you and your body.

This is where it’s really important to remember that physiotherapy is a profession, not a treatment. So even if you have had a mixed experience with a physiotherapist before, you may gain benefit from another assessment. Or you could build on the hard work you have done previously with a slightly different focus with another physio.

There are many under researched conditions where people can struggle with movement and pain and exercise and all of that. And the professionals that help these patients are still always learning about the best available evidence for patients that seek their care.

That’s it for today. I hope this gives you a nice little primer for our exercise series.

In the next few episodes we will be continuing talking about exercise, how to think about reframing movement and how to do things in a safe and sustainable way. And I think it’ll be a really helpful and beneficial thing, at least I really hope it is!

After that, we’re going to be moving on to understanding sleep hygiene when a lot of the rules don’t really feel like they can apply to you, and this was a lot of big aha moments for me, so I’m really excited to kind of dig into this.

Thank you so much for joining me today and to Amit Rai for editing this episode. Please do tap that subscribe button to be notified of when new episodes are released. And if you enjoyed this please consider leaving a review.

So yeah, I probably need to come up with a smooth outro, but for now thank you again for joining me in the restroom and I hope you have a restful rest of your day.

I feel like this is where there should be a jingle *sings* dundundundundun