There isn’t an agreed definition of pacing, I would define it as flexible way of structuring your day in a way that supports both function and wellbeing.  Pacing essentially means breaking down tasks and activities into manageable chunks with consideration of the different types of activities, including enough short rest breaks in your day and flexibly adjusting things each day/throughout the day as needed.  Pacing needs consideration of different activity types, for example what activities are more physical/cognitive/emotional and how they impact you.  It needs a number of things which I will touch on in this blog, especially awareness, compassion, noticing what’s present in our experience within our body (what’s embodied), flexibility, knowing our values & what’s most meaningful, and exploration.

Pacing is helpful for us all and more so when living with persistent pain and/or other health conditions.  A quick note here, pacing for persistent pain is similar and different to pacing for ME/CFS and long covid (where post exertional malaise is present), this blog is focusing on pacing when living with persistent pain.

The way I suggest exploring pacing with the people I work with includes discussing what pacing is and is not, there are some examples of what pacing isn’t below, perhaps the commonest misconception is that it means doing less.  I also encourage an understanding of nervous system regulation through a cognitive understanding and an embodied understanding (body based).  Part of this includes developing a toolbox of strategies and practices that support compassionate awareness & nervous system regulation, both I see as key aspects of pacing.   I often use the window of tolerance model by Dan Siegel, polyvagal theory by Stephen Porges and the three circles model from compassion focused therapy by Paul Gilbert as part of exploring understanding nervous system regulation in an embodied way.  I explore what’s meaningful with people and what their values are for a number of reasons, including because it helps people make choices about which activities to prioritise and engage in.

As already mentioned pacing can be misunderstood (and often is), here are some of the things pacing is not:

• A rigid/restrictive daily plan
• Doing less
• It’s not another thing to be ‘done’
• Only being able to do certain things a certain way
• Only doing things that don’t cause a pain flare

Pacing is not a rigid daily plan, it’s a way of flexibly adjusting our day as we move through it.  It is helpful for us to bring a non-judgemental compassionate awareness to how we are relating to our world (both the internal and the external), which is changing moment by moment.  From a place of being the compassionate observer we can take conscious wise action, where it’s possible to meet what’s needed (part of pacing).  A quick note here, there isn’t really any division between our internal world and the external world (not something we are exploring in this blog).

Avoiding doing things that tend to increase pain because of worry of a pain flare is not pacing and doing this over time this increases threat system activation, decreases our tolerance levels for the activity being avoided and often also tolerance for different activities.  It increases sympathetic nervous system activation (fight-flight), essentially there is more threat in systems and a sense of safety is lacking or has significantly decreased (pain is part of our threat system).  Tolerance levels decrease for a number of reasons, mainly due to an increase in sensitivity levels to different stimuli and a decrease in fitness levels.  Stimuli that gets overreacted to (we become more sensitive to it) often includes sitting and standing still and moving a certain way.  When systems are super sensitive all movements can trigger a protection response, doing certain activities and even thinking about doing a particular activity can create a pain response.  A quick note here about cause and pain, rarely does one specific thing cause pain or an increase in it, it’s complex and there are many variables that we don’t see.

Another thing that pacing doesn’t mean is ignoring pain and pushing on regardless, this tends to ramp up the protection responses and sensitises systems more.  This is the opposite of avoiding activities, it is sometimes referred to as the boom-bust cycle (not a term I use unless someone is using it and relates to it in a helpful way).  Both avoidance and regularly exceeding tolerance levels by too much are both problematic.  A quick note here, choosing not to do something that doesn’t come from a place of threat may well not be avoidance.  Doing a lot more than tolerance levels tends to result in having to do less for a few days, or even longer, it increases sensitivity and the threat in systems.  Doing a lot less also increases sensitivity and threat in systems too, along with tending to decrease strength and fitness as well.  However, doing a little more with a sense of safety, understanding your nervous system and using practices that help regulate your nervous system can help to gently nudge tolerance levels over time.

Pacing is not another thing to be ‘done’, it’s a way of flexibility adjusting to how we are and what feels needed throughout our day.  The way I see it is that pacing becomes a way of being that supports both effective function and our wellbeing.  For example, compassionately relating to ourselves and others, taking regular pauses in the day (these are needed for everyone, whether living with pain or not) and having nurturing daily practices that are part of a way of being and living, these could be seen as helpful habits.

(Image: my Grandad when he was 90 doing a meaningful activity – time in nature with one of his grandchildren – made possible by having something to sit on & only walking a very short distance)

How Can Pacing Help With Persistent Pain?

Pacing encourages people to work around their normal tolerance levels, this means knowing your baseline for different activities and where your soft limit/soft edge/soft boundary is.  This means knowing what level of different activities is generally ok (the baseline) and also having an embodied knowing (an awareness from what’s present in your body related to your whole experience).  Knowing your soft boundary includes knowing the whispers from your body that indicate you are near this point and indicate that taking a rest break or changing tasks would be helpful.  I have found it helpful over the years, with myself and working with others, to combine the cognitive understanding of a variable baseline with an embodied knowing of the signs we are near our soft boundary or soft limit.  One reason combining these is helpful is because our baselines are always changing and are impacted by many factors/variables, for example lack of stress and increased stress, and our body will reflect dysregulation consistently – we can come to deeply know it’s whispers when we listen compassionately.

Pacing can help in many ways, here are some of the ways it can help with managing and changing pain:

•  People living with pain can often more consistently do what needs to be done and what’s meaningful to them by breaking things down into more manageable chunks of activity interspaced with rest
• As well as taking short rest breaks changing to a different activity, for example changing more of a physical task for more of a cognitive one can be helpful
• With a pain flare-up things may need to be broken down into smaller amounts with more rest breaks to help systems to calm down
• Pacing can help people to engage more often and more fully in what’s meaningful along with using the strategies & practices that help them to manage pain
• It can help to modulate pain, for example taking a break and doing a breath practice helps to regulate the nervous system – down regulating the threat system can potentially modulate pain
• Pacing can help with both nervous system regulation and retraining the nervous system.  So, it can be part of both managing and changing pain over time
• It can help to decrease sensitivity to different stimuli, increase tolerance & fitness over time along with other things

Pacing Tips

It can be helpful to have an understanding of why pain doesn’t necessarily equal harm, knowing that we are safe to do things even with pain.  Having an understanding around this is one thing that can help people to pace activities and create a sense of safety.

I use 5 P’s with people for pacing, if they find this helpful, these are planning, prioritising, play, purpose & problem solving.  I have a pacing handout, that includes these that I offer to the people I work with who are struggling with persistent pain, to support their exploration of pacing.

As already mentioned listening to the body and integrating enough rest, along with having daily practices that help to regulate the nervous system is important.  Many things can help to regulate the nervous system and help with pacing when living with pain, for example, breath practices, meditation, gentle yoga or other mindful movement, singing/humming, time in nature.  Including a variety of activities, including exercise, in pacing is important, finding what’s helpful for you needs exploration.  There is a link to an exercise and persistent pain blog that I wrote in the resources at the end of this blog.

It is important to explore what is restful for you and the sort of rest that certain activities/tasks offer, there are a number of different forms of rest which I am not going to go into in this blog.  The picture below is child’s pose, this is often referred to as a pose of rest in yoga and is known to be calming, grounding, restful and restorative.  It is important to remember just because something is said to be calming and restful it doesn’t mean it will be for you, this highlights again the importance of embodied awareness (what is showing up in the body).  Understanding what is showing up in your body and how your nervous system is responding is part of developing an embodied awareness.  I encourage the people who attend my 8 week Creating A Healing Path workshops for people with pain/fatigue/anxiety, and my 4 week nervous system regulation workshop series to do this.  Even though we didn’t specifically cover pacing in my Creating A Healing Path workshops people reported pacing better and being more able to engage in what was meaningful to them.  You can find the link for more information on these workshops at the end of this blog.

As already mentioned pacing is not rigid, it needs flexibility as everything is changing moment by moment.  Our internal and external environments are constantly changing, our tolerance levels and nervous system state are in a constant state of flux (with everything else), it another reason why having an embodied awareness matters.  We need a cognitive understanding combined with an embodied awareness of what practices and strategies are helpful when, along with the different ways that we can adapt them.  Without a body based understanding (embodied awareness) we will be running on cognitive understanding alone and missing out on what our nervous system is communicating and the wisdom of our body.

Here is a common example of how our tolerance levels and nervous system state are always changing, imagine that you haven’t been sleeping well for a few nights and you keep on doing things in the usual way.  There are some common impacts of this, including: increased fatigue, increased stress, making poorer food choices, getting hooked in unhelpful thoughts, and increased pain which may also stop you sleeping (one of the many cycles in pain).   Lack of sleep in itself sensitises systems, increases threat system activation, increases the perception of pain, our baselines and soft boundary change, and it impacts our concentration and focus.  So, rather than keeping doing things in the usual way we need to explore what’s helpful and adapt what we are doing.  This might look like breaking things down into smaller chunks than usual, having more rest breaks during the day, including more meditation, or having a few minutes outside a few times during the day, and doing less exercise than normal (the body responds differently to exercise with lack of sleep and it responds differently with persistent pain too).  Making these adjustments like these are examples of pacing.

When there is something that’s important for you to do and you know it’s over your tolerance levels one way to manage this is to engage in what gives more safety messages to your body for a few days before the event, during it if possible, and again for a few days after.    Factoring in more rest afterwards and even before the activity/day can be helpful.

Remember what is helpful on one day, or in one moment won’t be exactly the same as what’s needed in another.  This is why we need an embodied awareness (body awareness) and a toolkit of practices and strategies that we have explored and used regularly.  This helps us to select what feels most helpful and then notice how our nervous system and body are responding, adapting what we are doing from this as needed.

Here’s a list of some more examples that can be part of pacing with a flare-up of pain:

Modulate your usual activities, like with the example above

Use additional helpful strategies from your toolkit if needed, a few examples are mentioned above

Do what helps to regulate your nervous system more frequently during the day

  Practice self-compassion, an example would be reframing your language (the self-critic can get loud when things during a pain flare-up)

For some activities where you are doing less than you normally would due to a flare-up remember to ensure that you have a plan to build things back up gradually as things start to settle (something which can be forgotten).

Some questions you can ask yourself:

•  Do you pace your activities in a way that’s supportive for your wellbeing
• Do you make adjustments to your day for factors like lack of sleep and increased stress?
• Do you know your baselines for activities and do you the know the signs of your soft limit/soft edge/soft boundary?
• Do you do what’s important to you or do you avoid doing it out of fear of making the pain worse?
• Do you push on regardless?
•  Do you incorporate the helpful strategies/practices into your day or just when the pain is worse?
• Do you know what helps give you a sense of safety with doing different things?
• What daily practices/strategies support you?

In Summary

This blog has covered what I see as the basic principles of pacing when living with persistent pain, these are:

• Planning & prorating tasks
• Problem solving
• Breaking things down into manageable chunks
• Understanding different activities (physical/cognitive/emotional) and your tolerance levels for them
• Integrating enough rest (with consideration of different forms of rest)
• Changing activities for a break is helpful (alongside having rest breaks)
• Having a cognitive understanding and an embodied awareness (body based understanding/knowing)
• Knowing the whispers from your body that you are near or at your soft limit/soft edge/soft boundary
• Using the practices and strategies that support you and help to regulate your nervous system and manage pain
• Remember there isn’t a right or wrong with pacing and it needs flexibility.  There isn’t a perfect way to pace!
• We need to be able to flexibly adjust during the day, this needs an embodied compassionate awareness & ongoing practice

No-one paces the same way, no-one walks in the same shoes, yet we create similar footprints.  This means that we can learn from each other and use the principles of things like pacing and different practices and adapt them to meet what’s needed.  There are common tools/practices/strategies that can help regulate the nervous system, manage and modulate pain, support wellbeing and effective function, these need adjusting for each person.  This is something I explore with people as part of 1:1 work and it is part of my workshops  With regular practice people understand the many ways they can adapt practices to meet their needs and as part of exploration and regular practice they create their own toolkit of resources to manage and change pain.

Learning how to pace and manage pain is a journey of exploration that takes many directions, there isn’t a destination/an end point with pacing, instead pacing supports pain management and engaging with what matters each day.  I would say that understanding nervous system regulation, noticing how we are relating to ourselves and practicing embodiment (noticing what’s present in our body) are all key parts of pacing.

I have written this blog from my understanding of working as a pain specialist physiotherapist & integrative somatic practitioner as well as lived experience of persistent pain, ME/CFS & PoTS.  If you would like to learn more about pacing and/or would like help with management of persistent pain in general get in touch to book your free 15 minute call to see how I can help.

If you would like to find out more about the 8 week online Creating A Healing Path workshop series for people with any condition associated with pain/fatigue/anxiety, or the 4 week nervous system regulation workshop series click the links below:

https://unityphysio.co.uk/services/ahealingpath/

https://unityphysio.co.uk/services/listening-to-our-inner-wisdom-workshops/

Pacing Resources

There are a number of resources specifically for pacing for persistent pain and related topics, here are a few:

There is a little about nervous system regulation in part one of my healing blog https://unityphysio.co.uk/healing-within-connectedness-love-part-one/

This is a blog that I wrote on exercising with persistent pain and can help with pacing of exercise/physical activities https://unityphysio.co.uk/exercising-with-persistent-pain/

A blog written about pacing in the context of neuropathic pain http://livingwellpain.net/persistent-pain-pacing

A short pacing video https://www.paintoolkit.org/pain-tools

Q&A: Pacing & Chronic Illness http://natashalipman.com/qa-pacing-chronic-lllness-resting-pain-fatigue/

(Images in this blog: icon with heart in hands and man walking are authors own, childs pose image is from Shutterstock by Rasterbird, time for change image is from Shutterstock by Trueffelpix)

The post What is Pacing & How Can it Help with Persistent/Chronic Pain? appeared first on Unity Physiotherapy and Wellbeing.

Living well with pain means being able to do the things: that are important to you and that matter most; the things you need to do; and doing the things that look after your health & wellbeing daily (including practices that help change pain, such as nervous system calming activities, with pain in the background.

There are many aspects involved in living well with pain, these need exploring and tailoring to what is most helpful for each individual.  Living well with pain and full resolution of pain (in reality the latter doesn’t happen for many people) takes time, flexible persistence, practice and compassion, to name a few of the important things.

Living well with pain needs an understanding of the changes that happen when pain persists along with an individual toolkit of things that help look after your health & wellbeing.  This blog will look at some of the aspects of living well with pain (whilst it changes in the background), and how we can do what matters most.  All of the aspects covered in this blog are either already blogs and resources on the Unity Physiotherapy & Wellbeing website or they will be in the future.  At the end of this blog you will find a link to a pdf resource document that has a few tips for the different aspects mentioned in this blog, along with a list of resources that are I feel are helpful and use with people in clinic.  This resource list is not exhaustive and there are many more (you can also find a longer list of resources on the Unity Physiotherapy website).

Tina, who lives with pain and runs livingwellpain.net created the helpful 25 elements of living well with pain diagram below (used here with her kind permission), and she has written about 10 of these in a blogs here http://livingwellpain.net/category/25-ways-to-manage-pain, you will find some of these woven into this blog.

Understanding Pain

Ok, this is complex! I am not going to go into the complexities of pain or the neuroscience in this blog, although understanding this and how this relates to you can be helpful.  Many books delve into this in varying levels like Explain Pain & Explain Pain Supercharged (the latter is more technical read) and there are many great articles and blogs too (some are listed at the end of this blog).

Understanding the different aspects of pain can help you understand that pain is a protection mechanism and systems can become overprotective, how different systems adapt when pain persists and that they can adapt again in a helpful way.  Understanding pain includes understanding why, for example, things like hurt doesn’t necessarily equal harm, pain cannot be found on scans (we are much more than a sum of our parts), pain is a protection mechanism and a poor reflection of what is going on in the tissues, movements and activities become associated with pain and are not necessarily causing harm.  It’s helpful for your friends and relatives to also have an evidenced based understanding of pain and how this relates to you.  An evidenced based understanding means having an awareness or a more in-depth understanding of what the research tells us about pain, and knowing what myths exist in society (there are many myths!).

(image edited, Nivens, Shutterstock)

Everything that contributes to us being human can contribute to pain, so that’s a lot of things!  I would be here forever if I listed them all, to give you an idea here are some of the factors that can contribute to pain: biological factors (everything including thoughts are part of our biology), a sensitive nervous system and body (includes the immune system), not feeling safe to move, not trusting your body, beliefs, values, how we interact with the world, attention, opinions of others, previous experiences, myths about pain, expectation, self-criticism, thoughts, feelings and emotions, stress, lack of connection, avoidance, nutrition, overdoing and underdoing things, lack of purpose, feeling no-one understands, and much more.

Pacing

There is no agreed definition or set way to do this.  In my mind pacing is essentially a flexible daily structure of what’s helpful for you.  There are no set rules, no-one paces the same way because no-one walks in the same shoes, even though we create similar footprints.  What we learn from what the evidence tells us can help, as well as from each other’s paths and footsteps.  Learning how to pace and manage pain is a journey of exploration that takes many directions.

When pain persists people commonly either stop doing what matters most to them, lose purpose, or push on through things (boom-bust cycle) which commonly further sensitises things (creates more protection).  I have heard it said for pacing ‘stop before you think you need a rest’, as a general rule this is not needed, although it can be part of a strategy to calm things down when you are having a flare-up or with, such as, neuropathic pain.

Have a compassionate & flexible plan as a guide when things get challenging

Life is always changing there is no constant, things are in a constant state of flux and this includes pain.  Sometimes that flux changes significantly, sleep quality and function are affected, this is often referred to  as a pain set-back or flare-up.  It is important to know what helps when things flare-up, to help calm things back down, and approach things in a flexible and compassionate way.

Be compassionate with yourself, flare-ups are common and not a fault of anyone.   Self-compassion helps in many ways including: quietening self-criticism, modulating feelings like guilt, anger and frustration, and decreasing rumination (all of these turn up the pain volume and can contribute to anxiety).  Self-compassion can also help with pacing and knowing what’s helpful, as well as making wise choices that can help nurture overall health & wellbeing.  It’s important to not stay at the reduced level for too long, as you will accommodate to this; this is one reason a flexible plan, that incorporates building things back up gradually, helps.

Sleep

Getting enough good quality sleep is essential for our health and wellbeing, usually this is around 7-9 hours.  When living with pain, lack of sleep commonly means we notice more pain, are more sensitive to stimuli (eg react to less movement) and more easily feel stressed.  There are a number of things you can do to help give yourself the best opportunity of good sleep.  There are some tips in the resource accompanying this blog.

Exercise

Exercise is essential for our health and wellbeing and is helpful in living well with pain, yet there are differences in how our nervous systems and bodies react to exercise when we live with pain.  Some people find exercising daunting due to significant increases in pain as a result.  It is important that the exercise you do is something that you enjoy doing and you explore what is the right level to start with.  Exercise is important for many reasons, even if it doesn’t modulate pain (it does for some), it helps you keep strength and tolerance to keep doing what matters.

There are a number of aspects you can modulate with exercise, like frequency, repetitions, speed, and intensity.    This is a link to a blog I wrote on exercising with persistent pain, it gives some more information and general guidance https://www.unityphysio.co.uk/exercising-with-persistent-pain/.  My blog and the following blog (written by physiotherapist Thomas Jesson) provide general guidance and are not intended to replace individual medical advice https://medium.com/@thomas_jesson/exercising-when-it-hurts-a8b70f7b1ebf?_referrer=twitter&fbclid=IwAR3ohbyxL7QSRzfkg1jmtHNRnxJW_ouHYD8Tm_Ql_8_88EtLBNGlPiS2pcQ

Language

What we say to ourselves (our self-talk) matters.  How we talk to ourselves is a habit that we can change.  Part of being human is we are wired to focus on the negative and to compare ourselves with others.  We can train our language and how we relate to ourselves to be more helpful.  Commonly when living with pain self-talk is often self-critical, this is part of our threat system and can contribute to systems staying on high alert which increases pain.  There are some tips about language in the resource associated with this blog and more information and exercises in my pending book.

Acceptance

Acceptance is important for us all, life is tricky and we all have things to deal with that are challenging.  There is a common misconception that acceptance is passive and that it means giving in or that we are happy to leave something as is, it doesn’t.  It’s important to know that all any of us can do is accept things as they are in the moment, not as they will be tomorrow or next week, it’s an ongoing process not something we only do once!

Acceptance means being able to allow things to be present, with compassion, awareness and understanding, without pushing things away (avoiding), dropping the struggle and living well despite pain being present.   This doesn’t mean pain won’t change, it will, instead it means pain is no longer the focus, and we are not putting life on hold waiting for the next thing that someone says will get rid of it (this commonly increases the pain and affects our mood).  Instead of pain being the driver we can learn to put it in the back seat and let it be there, acceptance is one part of doing this without trying to push it out of the car (this uses so much energy and focus!).  Who knows one day it may move further away and we can move it to sit on the car roof!

It’s important to remember pain can, and does, change even though for many it doesn’t fully go away it can.  Acceptance helps us steer in the direction of what’s meaningful.  Accepting you have persistent pain helps you take pain out of the driving seat, take back control again and steer in the direction of the things that matter to you in life even if pain is in the background.

Meaning, Purpose & Connection

One of the things, ok three things, that are particularly important are meaning, purpose and connection, these are inextricably interlinked.  I have lost count of the number of times that someone has said ‘I feel like I have no purpose.’  This relates to not being connected to oneself and others, not living aligned with what’s most important (this is usually aligned to our values).  By knowing what your values are and setting goals alongside these you can start to reconnect to what’s most meaningful to you.  Our work can be part of our purpose and its helpful if it is, my work is connected to my purpose in life and my values.

When we stop doing what’s meaningful we lack connection to ourselves and others which is important for our wellbeing.  When we do what’s meaningful to us, and when we feel connected to others, helpful neurotransmitters are released (chemical messengers) too that help modulate pain and help us feel happy, content or relaxed.  Connection and compassion are both important for our wellbeing.

There is opportunity within the pain to steer towards what matters, to be guided by your values and let go of some things that don’t serve you and those around you.  A lot of people say to me they are grateful in some ways as they come to see what’s most important, living with pain I can relate to this.

*This blog is intended as general information and guidance and is not intended to be individual medical advice*

Link to tips for aspects discussed in this blog

Resource alongside living well blog

Resources

Books:

• Explain Pain by David Butler & Lorimer Moseley
• Painful Yarns by Lorimer Moseley
• Pain Heros by Alison Sim
• Understand Pain Live Well Again by Neil Pearson
• The Compassionate Mind Workbook by Chris Irons & Elaine Beaumont
• Compassion focused Therapy for Dummies by Mary Welford
• The Mindful Self-Compassion Workbook by Kristin Neff & Christopher Germer.

Blogs:

• Livingwellpain http://livingwellpain.net
• My Cuppa Jo blogs https://www.mycuppajo.com
• Pain Chats https://painchats.com

Other resources:

• Pain Toolkit https://www.paintoolkit.org

The post Living Well with Pain appeared first on Unity Physiotherapy and Wellbeing.

I am referring to recovery from suffering with pain to living well in this blog as being able to live a values aligned life that’s full of meaning, with pain being in the background.  Let’s get the clouds cleared and say now that pain can and does change, it even fully goes for some people though this is a low percentage of people.

Very little in life is linear, recovery from suffering with pain to living well with pain certainly isn’t linear, it can look pretty messy.  If you tried to draw pain recovery it would most likely look like a child’s scribble.  Just as children learn through scribbling how to draw we can also learn through suffering with pain how to live well again.  There can be small ups and downs, big dips, sometimes steep rises and lots of back and forth moves.  Life in general is messy, it’s often not plain sailing and it can be helpful to recognize the resilience we have built in the tricky waters.  We have things that help as we sail including our crew, a lighthouse, a map of our favourite destinations, a compass, understanding the weather and the current changes, and of course an anchor (or a few different anchors).  Want to know what a compass, lighthouse and a crew have to do with recovery from persistent pain?  Keep reading…

What Has a Crew, a Map, a Compass, an Anchor & a Lighthouse Got to Do With Recovery From Suffering With Pain & Living Well?

All of these things work together, so for example when a rest is helpful if the water is not still enough to rest safely we can drop anchor to add some safety.  An example in life could be when things are busy, we have a lot to do and are feeling stressed, it’s is likely that if we simply sit to rest our minds will carry on and our fight-flight system doesn’t get chance to down regulate.  One thing we can do is sit and focus on our breathing and do a breath practice like soothing rhythm breathing (used in compassionate mind training), or we can practice a meditation or another grounding practice.  Anchoring our mind in our bodies, staying fully connected to the present moment and restoring some balance in the autonomic nervous system are all important and help us live well with pain and can help change it too.

Our crew are important, one really important crew member is our compassionate self, I see the compassionate self as the chief officer.  The chief officer shares compassion with the captain and all the crew and also extends this further afield to passing boats, helping everyone to navigate the tricky water.  We all have a critical voice, it’s part of being human, and when we are suffering with pain this voice commonly gets quite loud.  When we have a flare-up guess what the self-critical voice often gets even louder alongside more threat based feelings & emotions like guilt, frustration, anxiety and shame.  These all ramp up the pain volume, it’s one of the common vicious circles in pain.  Self-compassion has been shown to help decrease self-criticism and modulate threat based feelings & emotions.  Self-compassion is also a more sustainable place to motivate ourselves from than self-criticism, it doesn’t have the drawbacks that self-critical motivation has.  Compassion is also important because it’s been shown to help decrease stress, increase resilience and generally be helpful for our wellbeing.  Gilbert et al (2017) showed that self-compassion and self-reassurance overlap and that self-compassion mediates the link between self-reassurance and wellbeing.

Other crew members could be family and friends, maybe a pain specialist clinician, and things like exercise/movement and sleep.  Sometimes some of the people in our crew need teaching about pain as there are lots of myths and misconceptions around pain.  Everyone having an up to date evidenced based understanding of pain and how this relates to you is important.  Understanding pain could be seen as a crew member too.  All the crew members work together to nurture our health and wellbeing, all are important, some of the most important could be said to be: regular exercise/movement, sleep, good nutrition, connection and compassion.  Here’s a link to the exercise and pain blog I wrote about exercising with persistent pain  https://www.unityphysio.co.uk/exercising-with-persistent-pain/

Apart from nutrition different aspects that nurture our wellbeing (our crew) are all also discussed in detail in my book, Dancing Through Life: A Guide to Living Well.  The PACE’s & SIM’s, the key concepts in my book, could be a useful summary of the crew so I have included the PACE’s & SIM’s summary diagram from the book here.

A little note on exercise, some people prefer to relate to this as movement as they have unhelpful associations with exercise & it’s linked to threat for them (I cover this in my book).  Exercise is important for many reasons including that it helps enable us to do what’s most important (along with other crew members like sleep, nutrition and self-compassion).  Engaging in meaningful activities can in themselves be the exercise/movement, like in my second example in the meaningful activities & flare-up sections below.

The places we like to visit (things that bring things like joy), our compass and lighthouse help us navigate all the different changes in weathers and currents.  The places we like to visit are what’s meaningful to us in life and our compass is our values, our direction of travel (values as a compass metaphor – Hayes et al., 1999).  The lighthouse helps us connect to our purpose, what feels like home and is also meaningful, even when we are feeling lost at sea it glimmers in the distance.  Some people find it tricky to relate to purpose, if that’s you that’s ok, think of it like the deep why’s behind what you do and see if that helps.  Meaningful activities are commonly stopped when people are suffering with pain, reasons include fear of making things worse and/or not feeling able to do things.  The flip side of this is that by stripping life of meaningful activities this in itself turns up the pain volume as does the fact that we lose fitness and tolerance for different activities.  Meaningful activities also release feel good chemicals that nurture our wellbeing and may modulate pain in some instances, so there’s added benefit.

Meaningful Activities and Flare-Ups

Sometimes the word set-back is used instead of flare-ups, sometimes increased pain volume, or other terms, you can use which ever term you most relate to.  Some things when living with pain are worth a flare-up and some just aren’t!  Usually things that are meaningful and connected to our values are worth the pain volume being a little louder and we can plan to focus more on things like rest and relaxation for a few days after.  I usually ask people if the benefits of doing something outweigh the consequences as a way of helping their understanding, and mine, around their meaningful activities and being able to engage in them.  Sometimes the answer is no, this is usually when the value associated with the activity isn’t one of the core ones, or when pain is a strong leader, or flare-up management strategies are lacking.  Sometimes we need to consider specifically how a meaningful activity is done to make it possible too.

As well as having specialised in pain I live well with it too.  Here are two real life examples of meaning and values in action as part of living well with pain.  Recently I went to see my youngest niece on her birthday, within the new covid rules of meeting outside, she had received a trampoline for her birthday.  I noticed I wanted to have a go and I also noticed a memory of the significant pain flare-up from a very brief play on a bouncy castle at her party three years before.  So, there were some contextual similarities (my nieces birthday party, something bouncy (even though a trampoline’s different to a bouncy castle).  I knew that I was ok to do it, that I was safe (hurt doesn’t necessarily equal harm), my body and mind were calm, and so I connected to having fun and choosing to play.  What else helped, I also knew that I could rest and pace things differently over the next few days if it was needed.  What happened?  I didn’t bounce that long and had great fun (ok technically I had another go later!) and as it happened things didn’t flare up either so my systems are either less sensitive than they once were or it was because a trampoline is different to a bouncy castle, I suspect it’s both!  This was meaningful to me as I value time outdoors, play, and time with family.  Would I have been fine with choosing not to have a go?  Yes as two other values were still present and it was a meaningful event, yet I wouldn’t have known if it was possible and I would not have and the joy and energy from bouncing on the trampoline.

Following on from bouncing on the trampoline three days later I went for a walk with my sister, niece & nephew.  The children were on bikes so there was lots of running alongside the bikes!  I hadn’t planned this and noticed a couple of thoughts relating to pain & fatigue, I unhooked from these thoughts and went with it, knowing I could have two days where I could adjust how I paced activities and incorporate more rest if needed.  Ordinarily I would have paced running, however when young children are on bikes this wasn’t an option and I chose not to stay attached to this meaning doing more running than I have tolerance for!  It was great fun & brought much joy.  This again was a very meaningful activity that I made a mindful choice about engaging with.  This isn’t something I do regularly, the exercise I do regularly & other practices helped me to be able to do this.  I wasn’t bothered if things did flare as the activity was absolutely worth it and I knew I could find a way through any flare-up.  I have many more examples from myself and patients where some activities have increased pain volume for a little while and some that haven’t, as this blog is already pretty long let’s go to the summary.

Summary

• What’s on your compass (there’s an example below) – know your core values and how you can live aligned with them
• What does your map of your favourite destinations look like – what activities are most meaningful to you now and why (I will take a guess – they are linked to your core values)
• What’s your lighthouse- what gives you purpose or what is your purpose? What are the deep whys behind what you do?
• What are your anchors (what helps you be present and anchors you in your body, e.g. mindfulness practices, compassion practices, meditation or breath practices)
• What helps when things flare-up – e.g. do you pace things differently or focus on rest and relaxation for a few days, maybe you use your anchors more
• Who are your crew (compassionate self, family & friends, understanding pain, exercise/movement, sleep, nutrition, compassionate self).

References

Gilbert, P,. et al.  (2017).  ‘The development of compassionate engagement and action scales  the self and others.’  Journal of Compassionate Healthcare, vol. 4(1), pp 1-24.

Hayes, S.C., Strosahl, K,D., & Wilson, K.G. (1999).  Acceptance & Commitment Therapy: An Experiential Approach to Behaviour Change.  New York: Guilford Press (to the best of my knowledge this is where the values as a compass metaphor was first used).

Parkinson, A. (2020).  Dancing Through Life: A Guide to Living Well.  UK: KDP (all images except values compass)

Parkinson, A (2021) Values Compass Image.  First used in this blog and associated e-book.

Bibliography

Gilbert, P.  (2009).  The Compassionate Mind.  London: Little Brown Book Group.

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