Some people like to use end of year journalling as part of reflecting on the year as it draws to a close.  Journalling can be helpful as part of reflecting on the year and see what’s gone well, what’s not been easy or challenging and what helped navigate these times, what’s been meaningful and other aspects too.   Some people like to reflect on the year and journal and others don’t, either way is ok.

As we reflect it is important that we notice what has been helpful, supportive or ‘positive’ as well as the more tricky and challenging times.  Our brains have a ‘negativity’ bias, this means that we will naturally remember the challenges and focus here if we don’t intentionally explore the ‘positives’ too.

This time of year is often a reflective time and when we align with nature seasons it’s a time for slowing down.  Our society and the commercialisation around Christmas tends to make people busier which can take us away for our natural need to slow down, turn a little inward, to rest and restore.

Before we look at different types of journaling and some tips I feel that it’s important to mention a few things:

• We all struggle and suffer sometimes and these will be part of everyone’s years to varying degrees, this is part of being human.  There will also be joy, connection, love, wonder and other nurturing emotions and feelings to varying degrees too
• There isn’t a right or wrong way to reflect or journal
• It can feel too much to reflect on the year, this is normal and it’s ok not to do it.  We can reflect and journal if it feels ok to do so and like it might be helpful for us and if not we don’t have to do it.

Types of Journalling

There are many types of journalling I have listed some of them below along with examples of how they can be used as part of end of year reflections:

• Free flow journalling/stream of consciousness journalling – this basically means writing whatever comes into your head even if it doesn’t seem to make sense.  Instead of choosing one focus like gratitude or feelings as journal prompts free flow journalling doesn’t have a focus and it is writing without editing
• Gratitude journalling – this is basically noticing and focusing on what you are grateful for.   For end of year journalling you could notice a few things that you are grateful for each month of the year as you explore the year that’s gone by and simply list them and/or use one, or a few of them as journalling prompts
• Art journalling – this type of journalling uses visual representations of things like your thoughts and feelings.  You could draw or find illustrations/visuals that you feel reflect your year as you review it
• Nature journalling – this type of journalling relates to what you are noticing in nature.  It can be combined with other types of journalling like art journaling.  One way this can be used is to gather nature pictures that you have from throughout the year and then journal with what arises through connecting with the picture memories, this may also lead into other types of journalling like what you are grateful for within the year
• Yoga journalling – this type of journalling is where people write in their journal after a yoga practice.  An example for end of year reflections could be to hold the intention to reflect and review the year, take this onto the yoga mat and then journal with any thoughts, feelings and insights that may have come up
• Strength based journalling – this journalling focuses on your strengths and exploring these through journalling.  For example, see if you can notice something that has helped you to thrive and/or manage the challenges this year and journal about this
• Values based journalling – this uses your values as a prompt for your writing.  One way to do this is to note down your core values and then journal with each value and how you brought it to life this year.  If you’re unsure of your values do a values exploration exercise first, there are some in my book, linked at the end of this blog
• Bullet journalling – this can be any sort of bullet point list.  For an end of year review you could list the things that you are grateful for, the values in your year, the strengths that helped you navigate challenges and helped you to thrive, and/or inspirational quotes that reflect your year.

There are many more types and you can blend different ones together and of course create your own journalling style

Questions for journalling:

 Questions can be used as journal prompts, some examples for end of year reflections/journalling:

• What has gone well the last month/last few months/this year and why?
• What are 1-5 things that I am most proud of this year and why?
• What has been tricky or challenging & what have I learnt from this/what am I taking from it?
• What helped me navigate the challenges?
• What strengths helped me this year?
• What’s been supportive for me this year?
• What 1-5 things am I grateful for right now/over the last few months/this year?
• Did I set boundaries, did I stick to them and were they helpful?
• What’s created some balance, some ease, some stability this year?
• How have I related to myself most often this year? (For example, with self-criticism or self-compassion)
• Is my daily routine supportive of my wellbeing?
• What 1-2 things could I keep doing or start doing regularly that would make a difference to my wellbeing?
• What are my core values (3-5 values) and how have they been part of this year?
• What is most important to me & why?
• What do I want to take into the new year?  What feels welcome to have more of? (This ties in with word of the year if you do this)
• What would I like to explore more of, what qualities do I want to embody next year?
• What could it be helpful to let go of?

Journalling tips

Some people like to reflect prior to journalling and then deepen the reflection through journalling and other people prefer to journal first and then reflect more in some way, for example through a yoga or other somatic movement practice, and others prefer to do something like a yoga practice first and then journal.  There isn’t a right or a wrong with journalling or reflecting, it is simply what feels ok for you and what’s helpful.

Before starting reflection and/or journalling I suggest people do a somatic (body) check-in and notice how they are.  The way I guide a somatic check-in is by encouraging connection to the body with compassion and curiosity to notice what’s present, for example noticing sensations, energy levels, the breath (if it’s ok to notice this), what thoughts are present and how they show up in the body.  I also encourage people to reflect and journal in a somatic way, this basically means noticing the bodies reactions, the body’s wisdom as you reflect, for example, what sensations do you notice, what’s your breath like, is there a temperature change, how are you feeling, what do you notice where in your body?  Without doing this we are only reflecting on a head level and this means we are missing important information and the body’s wisdom.   It is important to slow down and pause regularly, this can help us to notice what’s present in the body and increases our awareness and understanding

I encourage people to journal and reflect with compassion and curiosity, holding the intention to be curious and compassionate can be part of this.  As well as holding this intention you can connect to your compassionate self to support with journalling in a compassionate way, there are various exercise available that can guide with this.  There are a few in my book and there are some audios freely available like this one by Dr Shelley Kerr: https://on.soundcloud.com/kSyVQUZu923v9HYz7

It can also be helpful to use soothing rhythm breathing from compassionate mind training, this can be used as part of connecting to your compassionate self or simply to connect to your body, settle and slow down.  I have an audio freely available for this here: https://on.soundcloud.com/kqJdxtjerKGMUHBq6  There are a number of other soothing rhythm breathing practices freely available, you can find a few of them here: https://www.compassionatemind.co.uk/resource/audio

If reflecting on the whole year feels overwhelming consider what feels ok, perhaps exploring the last month or last few months, or something else that feels better to you.  If nothing feels ok and it feels too much don’t do it and perhaps reach out for some support instead.

One way you can reflect using end of year journalling is by reflecting back on the year by moving back through time from now and noticing what events/memories come to mind and what is present in your body, noting feelings or something else down in your journal.  Once you have reviewed the whole year you could choose a common feeling to journal with, or use some things that you are grateful for that have come to mind.  If journalling on the whole year feels too much you can split it into chunks, maybe quarters.

When you have finished your reflection one of the things you may wish to explore may be what would it be helpful to have more of in the following year, what would support you and what may you wish to let go of.   You can journal with these as prompts as well.  What you wish to have more of can be used as a word of the year (or words) for the following year, something I see as a kind of gentle guide.

Summary

• There are many types of journalling and you can blend different types together
• You don’t have to use a specific journalling type you can create your own approach 
• You can review the whole year working backwards from now or split it into chunks, for example review each quarter
• Do a somatic check-in before beginning and during the journalling 
• Slow down, this helps you to notice what’s present in the body
• Go at your own pace and take breaks as needed
• Use the body’s wisdom along with the minds understanding in your journalling
• Hold the intention to be curious and compassionate
• Connect to your compassionate self and use soothing rhythm breathing if these feel helpful for you
• Journalling can be combined with yoga and other somatic practices
• You could explore what it would be helpful to invite more of in the following year, what would build on your strengths & resources and support your wellbeing 
• There isn’t a right or wrong way to journal or reflect.

In this blog I mentioned that there are some values exercises in my book you can find the book here: https://www.amazon.co.uk/Dancing-through-Life-Guide-Living/ dp/B08P1CFDNW/ref=mp_s_a_1_4? crid=3EHSYPASVND90&keywords=ann+parkinson+book&gid=1671047573&sprefix=ann+patkinson+ %2Caps%2C65&sr=8-4

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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 different to pacing for ME/CFS and long covid (where post exertional malaise is present), there are similarities but its a different.  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 in systems, decreases our tolerance levels for the activity being avoided and often also 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 becomes overreacted to (sensitivity) often includes sitting and standing still, moving a certain way or when systems are super sensitive all movements can trigger a protection response, doing certain activities and even thinking about doing a particular activity.  A quick note here about cause and pain, rarely does one thing cause pain or an increase in it, it’s complex and there are many variables 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, 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 and can potentially modulate pain
• Pacing can help with nervous system regulation and can help retrain the nervous system.  This is part of both managing and changing pain
• 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.

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.  Exercise and including this in pacing is important, finding what’s helpful for you needs exploration, there is a link to an exercise and persistent pain blog 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 things 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 people who attend my 8 week Creating A Healing Path workshops for people with pain/fatigue/anxiety to do this.  Even though we didn’t specifically cover pacing 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 via your nervous system 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:

• 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 8 week Creating A Healing Path workshop series.  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 & wellness coach 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 click the link below:

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

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)

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Aligning mind, body & heart

Terms like aligning mind, body and heart can seem a bit abstract so I’m going to define this in the way I see it before we explore connectedness more.  To me aligning mind, body and heart means living in a loving and embodied way aligned with our purpose and what’s meaningful, living from a place of love, compassion & connectedness.  By living in a loving and embodied way I mean noticing how, for example, our thoughts and feelings, are showing up in the body in a compassionate and non-judgemental way.  Part of healing is awakening our senses and being able to fully be in the present moment in an embodied and loving way.  We can’t do this if we are stuck in hyperarousal or hypoarousal, where we are stuck in our heads or rushing around all the time, disconnected from ourselves and the world around us, and not feeling safe/settled and secure.  Aligning body, mind and heart helps us regulate our nervous system, awaken to a deeper way of being and reconnect to the connectedness of everything.

Living in an embodied and open hearted way can also help us see that the obstacles and challenges that appear as part of life can help us awaken and grow.  We can ask questions that support with this like how can this help me grow? How can this help me serve myself and others?  How might this help serve my heartfelt intentions or aspirations?  Sometimes things are overwhelming, these times we won’t know the answers to these questions and we will struggle to connect to our bodies, these times we may need to find a suitable therapist to support us.

Love & connectedness in healing 

One of the things that is really important in healing is that our suffering is witnessed and acknowledged in a compassionate and non-judgemental way.  Suffering that is not witnessed and acknowledged, or done so in a critical way, often causes more trauma.   Love, compassion & connection are needed here because when we aren’t fully present and connected we can’t truly notice our suffering, or that of another, and without love and compassion there is judgement and criticism.

Acceptance is important in healing, it isn’t a one off thing, instead it’s ongoing and it can be said to be a moment by moment process.   Acceptance isn’t passive, it doesn’t mean putting up with something, or that things won’t change (things are always changing right down to each moment).  A great strength or courage is needed to be able to let go and trust in our inner wisdom and the process.  With curiosity, openness, courage and a compassionate loving presence (a heartfelt presence) we can notice and allow what’s present in the moment to be exactly as it is, even if it’s not how we would ideally choose it to be.  Being present with love & compassion helps us accept and allow what’s present to be without, for example, self-blame or self-criticism, and when these do appear they can be met with compassion and love too.   Allowing what’s present to be needs a sense of safety, or feeling safe enough in the present moment.  This means that we need the nervous system to be balanced or close to balance (where we are within our window of tolerance/ventral vagal system).

From a place of noticing what’s present in the body we can increase our understanding, connect to our inner wisdom and discern what’s supportive for us.  Any action comes from our inner wisdom rather than from a threat based reaction, for example a pushing away, trying to get rid of something, or avoiding.  It’s important for us to stop over controlling and resisting, this is part of being in a regulated nervous system (resistance & over control are part of our threat system and protection mechanisms), as it calms our nervous system and allows new possibilities to begin to surface.  Allowing what’s present to be with an acceptance or openness is a place where fear softens and we can start to see what’s resting underneath.  Holding whatever is present, in love compassion isn’t always easy and this is part of the practice and the healing.  Things can reappear that we thought we had dealt with once, that we had healed, new layers surface for healing, here again we practice acceptance and compassion.

We need trust to allow the healing process to unfold in its own time without wanting it to be a certain way or create a certain outcome, without pushing or resisting, easier said than done I know (that’s part of the practice too).  We naturally push away or resist what causes suffering and grasp what creates joy and the things we want more of.  Part of suffering is in the pushing away and grasping, we can learn to allow things to flow through (an ever ongoing practice).  We can, for example, notice that pain is present and allow it to be in the background as best we can, rather than trying to get rid of it and getting frustrated, angry or self-critical when nothing works.  This doesn’t mean we don’t take action to try and alleviate the suffering, instead it comes from a different place and we take wise action.  This may be no action sometimes, or something simple like after noticing what’s present and allowing it to be, offering ourselves some soothing words or soothing touch (this could be part of Tara Brach’s R.A.I.N practice or Kritsin Neff’s self-compassion break, for example).  We also need to learn to hold the outcome lightly, we cannot control this as there are many variable (some we don’t see) we can influence the outcome and control how we relate to it.

Often when we are suffering we lose trust in ourselves, I have seen this time and time again working with people with persistent pain, other long-term conditions and felt it myself.  The decreased trust, or the loss of trust, brings an opportunity to connect more deeply to it and develop more of a kind of unshakeable trust.  Part of trust is trusting that we have the skills, knowledge, resources/practices to manage, or if we don’t then believing that with support we can develop them.  Learning to trust the healing process is important and it means we need to trust in uncertainty too.  Trusting in uncertainty isn’t easy, it’s important because so much is uncertain in life, this means we need to let go of over control.  Being safely grounded in compassion and love links with trust in holding us steady enough within the uncertainty, within what feels like a vulnerable place.

Reconnecting to our inner wisdom is so important in healing, it supports and guides us.  Terms like inner wisdom and our true nature or essence, can seem a bit abstract, they aren’t tangible things we can see.  Our inner wisdom and true nature both hold love & compassion and connecting to them is important in healing.  Connecting to our inner wisdom through our body guides us in many ways, for example it can guide us when to explore something to deepen understanding and when to allow something to be in the background for the time being.  Sometimes we need help to access our inner wisdom especially if there is unprocessed trauma, the light of compassion and love can be hidden under layers.

Feeling the connectedness to love, nature and the wider whole is also important in healing and our overall wellbeing.  Research is showing us that it is not necessarily the amount of time that we spend in nature that is significant for our wellbeing, except in terms of physical wellbeing, there needs to be a sense of connectedness too (physical wellbeing needs this too, so again it’s not just the time in nature that’s important).  Sometimes we have disconnected from the interconnectedness of nature, reconnecting to this is part of our healing and it’s needed for natures healing.  Nature’s wisdom combines with our inner wisdom and can guide us when we listen.  If we haven’t lost the connection to the connectedness with nature then the sense of connectedness with this tends to deepen as part of healing.  Nature is part of us and we are part of nature, our wellbeing and natures wellbeing are inextricably interlinked, connecting to this helps our healing and also the healing that nature is desperately calling out for.

The interconnectedness with nature and something bigger than us may resonate with you or it may not, either way is ok.  If these things are of interest one of the books that I would recommend is called ‘Reconnection: Fixing Our Broken Relationship With Nature’ by Miles Richardson.

Common Humanity & Healing

As human beings we all experience joys and sorrows, love and loss, easier times and tough times, suffering and healing.  This is the common humanity we all share, we share many things as part of being human and connecting to this is important in healing.  Connection to others is important in healing, we are social animals.  We self-regulate and we co-regulate, our nervous system talks to other nervous systems.

Adapting to and processing many losses is part of being human and is often part of healing too  This can be for many reason, for example, from the multiple losses related to living with a chronic health condition, from life being different from the way you wished it to be, and/or from the loss of a loved one.  There isn’t a right or wrong way to grieve.  I wrote a grief and loss in persistent pain & other long term health conditions blog which you can find this here:

Part one https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-one/

Part two https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-two/

It is the tough times that we learn the most from and these times that we need a toolbox of practices to draw on, these can also be referred to as strategies or resources.  The tough times strengthen our heart and allow our heart to open more fully, to be present with love, compassion and courage, connect to the depth of our strength and to connect more deeply to the connectedness of everything with a sense of spaciousness.  We cannot heal until we learn what supports our nervous system regulation and have some resources/practices to support this and healing, we create more resources along our healing journey too.

What supports healing?

There are many things that can support us each day, that can become part of a way of being and part of healing, including: embodied self-awareness practices (awareness in the body), meditation, mindfulness, breath practices, self-compassion, yoga, exercise and movement, walking, time in nature, journaling, distraction (sometimes this is needed, for example when things are over whelming) and many more things.

When I had a really tough couple of years due to some health conditions I leaned deeply into my yoga and compassion practices and drew on many other resources that I had, my gratitude for these deepened and I developed many more resources through this time too.  I also reached out for additional support, remember we can’t heal on our own.

What practices and resources/strategies do you use to support you day to day?

Summary

To heal we need many things including: to restore balance and retrain our nervous system, a sense of safety and trust, an embodied loving awareness, acceptance, a variety of resources/practices along with a daily commitment to practice, belongingness, support of others, connection and connectedness, and of course compassion and love.  Healing takes time and a toolbox of strategies and practices, it’s not one thing that helps us heal it’s many things.  We can’t heal on our own, we need the co-regulation and support of others which can take many forms.  Sometimes support needs to be in the form of a therapist, other times it could be a coach or mentor, friends, or a wider community group that we are part of.

As we heal the confusion that we had in our suffering evolves into clarity and we awaken a little more to our true selves and the interconnectedness in everything too.  There are times that we think we have healed and everything is going smoothly and then something happens that opens up new layers that are ready to be healed.   Healing is something I have come to see as being ongoing, maybe you can relate to this too.  I don’t think there is a destination unless it is to return to our true selves and wholeness, to the alignment of mind body and heart and live from this place, and return again and again.  Each time there is a challenge or an obstacle it gives us an opportunity to grow and connect to our true selves, our inner wisdom, and more deeply to the connectedness within and around us.

We all already have what’s needed for healing within us, to access and nurture this we need to be able to safely connect to our bodies and we often need to change how we are relating to ourselves, from being critical, for example, to being more compassionate.  Sometimes we need help from a psychologist, or another psychological clinician to do this, for example when there is unresolved or unprocessed trauma.  We all have within us a core essence of compassion and love, this light never goes out, sometimes it’s under layers and we need help to be able to start to see it, and the more we connect to this place the more brightly it shines.

Healing has many aspects and perhaps we could see it as being rooted in connectedness and love, and aligning mind, body and heart.  I have come to understand that our healing rests within the love that is within and around us all and the connection to the interconnectedness of everything.  Healing is a place where enougness, okness, compassion, love, trust and freedom all rest.  Connecting to the wisdom of our body, heart, inner trust, compassion and love over and over again helps us to heal & develop an unshakeable inner core, or at least a less shakeable one.  The inner wisdom that is within us all, our core of love and compassion, is a place that we can come to know more deeply with time and once we have an embodied knowing (a felt sense in our body) we can return again and again to our true selves and a balanced state (our ventral vagal system/window of tolerance) that supports healing.  As we heal we can live more fully in an open hearted presence, developing a new way to be, relating to ourselves in a more loving and compassionate way and extending this love and compassion to others and the world around us.

To finish this blog I’m sharing a poem that I wrote called ‘Healing Within’:

Many things were unknown

Couldn’t be seen

In the darkness there was always some light

Flickering gently

Leading the way

Slowly, step by step

Pauses scattered through

Compassionate awareness enveloping

Body wisdom guiding to explore

What’s resting inside, to be seen, accepted and loved

Slowly, never to be rushed

Each footstep exploring

Heart trusting

A loving presence guiding

Exploring and listening

Natures wisdom shining

Deepening a knowing

Harmony evolving

Learning a new way to be

Compassion, love and trust united

Deeply embedded within

Shining brightly

Holding the steadiness

Resting in aliveness

Connected to the unity

Being & healing

You may also like to check out the poem I wrote called The Body Remembers The Trust

https://m.youtube.com/watch?v=2pgR3COJLPk

I would love to hear your thoughts on healing and this blog, do drop me an email if you would like to (info@unityphysio.co.uk) or share some thoughts in the comments on social media where I’ve shared this blog.

The post Healing Within Connectedness & Love (part two) appeared first on Unity Physiotherapy and Wellbeing.

I’ve especially been considering healing in relation to trauma, persistent pain, ME/CFS, long covid, PoTS and other long-term conditions, which is probably because these are the areas I work within and have lived experience of some too.   Many people are healing from trauma and/or a long-term health conditions in our modern world.  Last week I read in a new report by The Health Foundation it has suggested that 9.1 million people in England are expected to live with a major illness by 2040 and that a significant proportion of this will be related to certain conditions, including anxiety, depression, chronic pain and diabetes.   In my opinion there are many factors that need consideration here including healing and the innate connectedness that we need to reconnect to and nurture.

What does healing mean?

There is no agreed definition of healing, healing in acute terms means repairing damaged tissues, or fixing an injury, for example.  Things get complex when it’s not a simple acute injury and there isn’t a specific time frame to heal or repair the wound/injury.  When there are, for example, layers of trauma, or many symptoms from fibromyalgia, or someone is living with persistent pain healing becomes trickier to define.

Before reading on I invite you to consider what healing means to you?

I think we could say that healing is always an individual experience that involves reducing or transforming suffering.   However, if we were to say healing is only a change in suffering this would be a simplistic view, especially as suffering is complex and it is always changing, everything is always changing, and because healing is about more than the suffering or struggle that is part of the picture.

Another thing to consider with what healing means is that it may or may not mean full resolution of pain, anxiety, or other symptoms.  Often people have shared with me themes around alignment with their heart and what’s meaningful, connectedness and wholeness as part of what healing means to them, and these are things I can relate to from my own healing journey too.   Some people may say that not feeling whole implies that something is broken and needs fixing.  I don’t see it this way and instead see it as a disconnection from our true selves, disconnection from nature and a disconnection from the wider whole/universe (there are different terms for this, it can essentially be seen as something bigger than ourselves).  Although we may at times feel broken we never really are, our true self is like the sky in that it is always there and can never be broken and the weathers come and go.

A journey to wholeness is something I see as a heart based connection, a connection to meaning and purpose, to a sense of belonging, and to the love, trust and compassion that’s within us all.  We could maybe say that healing is a coming home to ourselves, reconnecting to our inner wisdom and connecting to the interconnectedness of everything.  I would say healing is also an alignment of mind, body and heart, a place where we can live fully connected from an open hearted presence with a gentle strength and love.  We will explore this a little more in part two of the blog.

I think that it is helpful to consider what nervous system regulation means in the context of healing, especially because we can’t heal with a nervous system that is dysregulated too often/too much.

What is nervous system regulation?

Nervous system regulation includes the whole nervous system and is often discussed in terms of the autonomic nervous system.  Everyone’s nervous system dysregulates many times a day and then re-regulates, the problems come when the nervous system is dysregulating too often or too much relative to the context and not re-regulating well.  A well regulated nervous systems helps us to feel safe or safe enough to be fully present and to engage with others and the world in general, and it helps all of our systems to function optimally.

There isn’t an agreed definition of nervous system regulation, this is one that I created for my Creating A Healing Path workshop series:

‘Nervous system regulation can be thought of as when our nervous system is flexibly able to move between different states in response to stressors & the level of arousal matches the context/what you are required to do.  It is where it is working in a balanced way that supports optimal function & healing.’

A quick summary of the autonomic nervous system (ANS) could be helpful here.  The ANS unconsciously controls and regulates our organs and unconscious body functions, including heart rate, breathing (which we also have conscious control over), blood pressure, and temperature.  It is split into two branches, the sympathetic nervous system (SNS), fight or flight, and the parasympathetic nervous system (PNS), rest and digest.  These work together to maintain a state of balance in the body (homeostasis) and we need both branches of the ANS, neither is good or bad.  The levels of activation of the SNS and PNS are always fluctuating, our central nervous system CNS) and autonomic nervous system are constantly adjusting, along with all other systems, to try and maintain homeostasis.  Our ANS and the CNS (mainly the amygdala and hypothalamus in the limbic system in the brain) are constantly monitoring for threat/danger or safety.  The ANS and CNS are constantly surveying our internal environment (information from all systems), along with our immediate and wider external environment, including how the interactions with others feel.  Our nervous system takes a better safe than sorry approach and our previous experiences and modern society mean it is often dysregulated by things that aren’t actual threats.  Once the threat, or potential threat, has gone we need to be able to return to regulation to function optimally and feel safe and settled again.  When this doesn’t happen automatically or takes sometime we can assist this process and there are many ways in which we can do this, this is part of healing.

It is important to mention that changes in ANS activation are associated with different chemical messengers which of course impact all of our systems.  Our thoughts feelings and emotions are also in themselves associated with different chemical messengers, they are part of our biology too.

There are different models that can help us to understand the ANS and nervous system regulation, the ones I use most often are Dan Siegel’s window of tolerance and Stephen Porge’s polyvagal theory, combined with the 3 circles model by Paul Gilbert (part of Compassion Focused Therapy).  For this blog I’m going to touch on the window of tolerance model and polyvagal theory.

The window of tolerance model was developed by Dan Siegel to describe the optimal level of arousal, it has three parts:

• Hyperarousal (too much SNS – fight or flight)
• Window of tolerance – optimal zone of arousal (balanced ANS)
• Hypoarousal (not enough SNS & PNS without the vagal brake)

In this model a dysregulated nervous system is one that is too often, or too much for the context, in hyperarousal or hypoarousal, and/or takes longer to regulate from these states back to regulation, and sometimes gets stuck for a while in one of these threat/protection based states.  When the nervous system is dysregulated in the direction of hyperarousal a variety of things associated with this can be present including: fear, panic, initial freeze (deer in headlights) emotional overwhelm, anxiety, irritability, anger, over-activity, lack of clarity, worry, gut issues, increased muscle tension, pain, insomnia, a tired and wired feeling.  When the nervous system is dysregulated in the direction of hypoarousal a variety of things associated with this can be present including: disconnection, dissociation, low mood, depression, decreased muscle tone, shame, guilt, feeling numb, fatigue, shut down.

(infographic by Dr Sarah Davies, the link to the blog that this is in is below)

Through the lens of the polyvagal theory by Stephen Porges we see the ANS protection responses as:

• SNS (fight or flight, includes the initial freeze response)
• Shut down or collapse (PNS minus vagal brake, termed dorsal vagal in this model)

Porges suggests that there are three pathways in the ANS, being the sympathetic nervous system (SNS) (mobilised/activated, protect/survival mode, unsafe), the ventral vagal circuit (safe, regulated, sympathetic and parasympathetic activity balanced with the vagal brake, and able to be socially engaged) and the dorsal vagal circuit (unsafe, protect/survival mode, shut down).   These three systems/states are also included on the above infographic).  The SNS part is where there is increased SNS activation (hyperarousal in window of tolerance).  The initial freeze response (deer in headlight type response) is SNS dominant, this is where we freeze whilst a decision is automatically made as to whether we can fight or flee, if neither are possible and this response continues eventually the SNS is overwhelmed by the PNS (we lose the ventral vagal regulation, the vagal brake – the rest and digest part of the PNS).  Here we go into a primitive survival response of shutdown or collapse, this is termed dorsal vagal in this model (it’s where there is increased hypoarousal in the window of tolerance model).  The ventral vagal system is where we are said to be safely activated, in other words the SNS is balanced by the PNS with the vagal brake.  Here all systems can function optimally, the ANS is in balance, the limbic system in the brain is settled and the frontal lobe is online.  When we are in the ventral vagal system we feel safe and secure, this supports social connection and full engagement in a heartfelt presence with ourselves and the world.

The wider our window of tolerance, the more frequently we can be in the ventral vagal system and the more easily we can return to this place again and again.  This helps systems function optimally and we can, for example, find ease within challenges.  Being in our ventral vagal system or window of tolerance helps create the conditions that support healing.  Also with a wider window of tolerance we can more often be in a full heart felt presence and have a greater tolerance to be with our own and others suffering, along with being able to access the wisdom to discern what may be helpful in alleviating or decreasing the suffering.

There is a lot of information on the window of tolerance model and polyvagal theory available, like this blog on the window of tolerance model:

https://www.drsarahdavies.com/post/what-is-window-of-tolerance-emotional-regulation-model-explained

You can find a free beginners guide to polyvagal theory on Deb Dana’s website here:

https://www.rhythmofregulation.com/resources

Considering nervous system regulation alone would be a reductionist way of looking at things, it needs to be considered as part of the whole picture.  This includes considering all systems, what is happening in our body, the thoughts and memories that are present, our behaviour, previous experiences, essentially the whole of our experience and the connectedness of everything.

Summary

Healing doesn’t have an agreed definition except in acute injury.  Healing involves changing or transforming suffering and creates a new way of being through reconnection to our true self and living aligned with our mind, body and heart.

When our nervous system is not well regulated, we don’t feel safe, we can’t see the bigger picture and are disconnected from ourselves, others and the wider whole, and we can’t heal from this place.  It is important we remember that we don’t control any of our nervous systems threat/protection responses (hyperarousal/hypoarousal), they are quickly automatically activated when protection is deemed as needed.  When we are within our window of tolerance or ventral vagal system enough (a regulated and balanced nervous system state) we are safely able to fully connect to ourselves and others, have a more expansive view, and conditions are optimised for healing.  A healing state is one that rests in safety and connection, a place where strength & gentleness are balanced, a place where the seeds of change can be planted, begin to grow and later flourish and these are all part of having a well-balanced regulated nervous system.

Perhaps we could see healing as a return to wholeness, or an alignment of mind, body & heart.  An alignment and wholeness that means that we can live a life full of meaning, with a sense of purpose, fully connected to ourselves, others & to something bigger than ourselves (the wider whole) in an open hearted and grounded way.  These will be explored a little in  part two of this blog.

What do you think, does this way of seeing healing resonate with you?

Link to part two of the blog https://unityphysio.co.uk/healing-within-connectedness-love-part-two/

(brain in hands image with this blog is from Shutterstock by Sergey Nivens, all others are owned by Ann Parkinson at Unity Physiotherapy & Wellbeing)

The post Healing Within Connectedness & Love (part one) appeared first on Unity Physiotherapy and Wellbeing.

What is PoTS?

Postural orthostatic tachycardia syndrome (PoTS) is a form of dysautonomia (autonomic dysfunction) and is characterised by an abnormal increase in heart rate within 10 minutes of sitting from laying down or with standing, this is referred to as orthostatic intolerance.  For people with PoTS upright posture (sitting or standing) is limited to varying degrees.  Alongside the main diagnosis of PoTS, which we could call classic PoTS, there are different subtypes: neuropathic PoTS, hypovolaemic PoTS & hyperadrenergic PoTS.

PoTS diagnostic criteria is a sustained increased in heart rate (HR) for over 3 months of 30bpm within 10 minutes of standing in adults, or reaches 120bpm or more in this time, and in children an increase of at least 40bpm.  A tilt table test is used for diagnosis and/or the active stand test or NASA lean test.  It is also important that other conditions are ruled out and tests should include blood tests and an ECG.  If people don’t meet the diagnostic criteria and other things have been ruled out they most likely have orthostatic intolerance (which is one end of the PoTS spectrum before it reaches a level classed as PoTS).

There are a whole range of associated symptoms including:

• Increased heart rate
• Alteration in blood pressure
• Palpitations
• Light headedness/dizziness
• Shortness of breath
• Chest pain
• Fatigue
• Brain fog
• Sweating
• Shakiness or tremulousness
• Fainting/blackouts (in a fairly low percentage of people)
• Sleep issues
• Headaches/migraines
• Anxiety
• Nausea
• Gut & bladder issues (IBS is common)
• Visual problems
• Purple hands and feet (pooling of blood in extremities due to sitting and standing for varying amounts of time)

I would like to highlight that people are often misdiagnosed with anxiety when it’s actually PoTS, PoTS itself creates feelings associated with anxiety & increased sympathetic nervous system (SNS) activation.  Living with PoTS can of course also cause anxiety, or anxiety may be pre-exisiting as well.

Many things can make symptoms worse including excess heat, a big meal or certain foods, decreased fluids or dehydration, hormones, stress, standing up too quickly, not getting enough rest, exercise (doing too much or certain types like HITT – HITT is never a place to start but may be possible with rehab), time of day (generally worse in the morning) and alcohol.

PoTS can occur as a primary problem or secondary (associated with another condition), including: fibromyalgia, ME/CFS, Elhers-Danlos syndrome (EDS), Parkinsons disease, lupus, rheumatoid arthritis, lyme disease & others.  Mast cell activation syndrome (MCAS) can be present as well, it is not clear if this is a primary or secondary issue, there is also a triad of EDS, PoTS & MCAS.  PoTS is also associated with long covid/post covid syndrome and is fairly common with this.  In my experience PoTS rarely exists in isolation.

PoTS is something I screen for as part of an autonomic screen with all the people I work with including those with persistent pain & fibromyalgia.  It’s not widely enough known about and screened for so is not always picked up and can be misdiagnosed as anxiety.  Some level of autonomic dysfunction is common in all the conditions I work with.

There are many things that can cause PoTS or contribute to it, which I am not going to cover in this blog.  You can find more information on PoTS here:

PoTS U.K website: https://www.potsuk.org

Information on the Long Covid Physio: https://longcovid.physio/dysautonomia-pots

How Can Physiotherapy Help With PoTS?

PoTS often needs to be managed by a multidisciplinary team (with a specialism or good experience in managing the condition).  Ideally a cardiologist with an a specialism or special interest in PoTS, a specialist physiotherapist, an occupational therapist when needed, a psychologist when needed, and a dietician may be needed with dietary adjustments especially if there is MCAS.   Psychological therapy can help in a number of ways, including with managing the distress of living with PoTS and some treatments, like EMDR, can help to calm down the ANS.  Other specialists may need to be involved, for example a sleep specialist.

A specialist physiotherapist can help to reduce symptoms and improve function, this needs to be alongside other factors like medication (when needed), hydration, increased salt (when not contraindicated), diet, compression stockings/garments, stress management & pacing of activities.   Some of the ways in which a physio can help are mentioned below.

Education & lifestyle modification: A physio can help people understand the condition and give advice on the lifestyle changes that help with management, along with supporting exploration of these.  There are a variety of lifestyle factors that can help, some of the main ones are mentioned above.

A tailored exercise programme:  A specialist physiotherapist can tailor an exercise programme, although this isn’t a place to start when PoTS is severe and great care is needed when there is PEM.  It is crucial that PEM is screened for as it completely changes how things are done.  Depending on severity of PoTS and other factors, including other conditions and exercise tolerance, recumbent exercises may be the starting point.  Exercise has been shown to be helpful in the management of PoTS, any exercise programme needs to bear in mind many factors.  To begin with it needs to be of a low intensity and progressed very slowly and it needs to be combined with other factors, including calming & retraining of the ANS.

Pacing:  A physiotherapist can help people explore pacing of activities and different strategies that help with managing functional activities.  Pacing is not a set or fixed way of doing things, there isn’t a right or wrong, it needs to be individualised and it’s something we need to hold lightly otherwise we step into over control which ramps up the threat system and impacts our flexibility in interacting with life.  Pacing needs to be flexible and come from a foundation of compassionate awareness and understanding in my opinion.  People understanding their baselines for activities and what rest is for them is part of pacing, for people with PoTS rest may need to be laying down.

Breathing exercises:  Some people have a breathing pattern disorder alongside PoTS due to the prolonged over activation of the sympathetic nervous system, increased heart rate & shortness of breath (a breathing pattern disorder also contributes to these symptoms, it becomes a bit of a vicious cycle).  A physio can assess for this and give exercises to help retrain normal breathing and calm down the ANS, if needed people can be referred onto a respiratory specialist physiotherapist.

Management of multiple conditions:  People may well have other issues alongside PoTS including persistent/chronic pain, a specialist physiotherapist can tailor things bearing in mind the other conditions someone is living with as well as PoTS.  People may also have ME/CFS or long covid, I have an interest in both of these conditions along with PoTS, a graded exercise programme is not recommended with ME/CFS and this would also apply to long covid when PEM is present.  I have worked many years as a persistent pain specialist physio & so am well placed to help with this.

Calming & retraining the autonomic nervous system:  This is important with PoTS, a physiotherapist can help people explore what helps them with nervous system regulation and retraining.  This like other aspects of care needs to be individualised, there is not a set guide and instead more of a flexible framework.  Part of this includes using measures like monitoring heart rate and heart rate variability (HRV), these are also helpful as part of guiding exercise progression.

Self-Compassion:  This isn’t something that is part of physiotherapy as such, it is however part of my approach to whole person care.  I integrate coaching and yoga into physiotherapy and use a lot of self-compassion and compassion practices with people.  Self-compassion can help to regulate the nervous system and the research shows us it helps in many ways (not specific PoTS research) including with decreasing self-criticism, increasing resilience and overall wellbeing.

About Me 

I am a neurological & pain specialist physiotherapist, coach & yoga teacher.  Alongside working in the specialist area of persistent/chronic pain I also have a special interest in ME/CFS, long covid & PoTS, chronic stress & anxiety.  I also have lived experience of PoTS, ME/CFS, persistent pain & anxiety.   All of my offerings are trauma informed and I have a compassionate integrative approach to care.  You can find out more about me by clicking the link below

https://unityphysio.co.uk/about-ann-physiotherapist-in-lincoln/

I can work with anyone in the UK virtually and locally can offer in person appointments or a combination of remote and in person.  I offer a free 15 minute call for anyone before they decide if they would like to book an appointment.

The post How Can Physiotherapy Help With PoTS? appeared first on Unity Physiotherapy and Wellbeing.

Persistent pain (also known as chronic pain) is a specialist area/field in healthcare, it’s an area that I have specialised in and wanted to share a little on what this means.  A little background on physiotherapy training, following completion of a physiotherapy degree physiotherapists take different paths, traditionally this always started with a junior rotational post in a hospital.  This now varies, on graduating a physiotherapist may start work as a junior rotational physiotherapist working in different areas within a hospital, or they may start working as a junior therapist within a community therapy team, or they may go straight into private practice on a graduate development program, usually this is within musculoskeletal physiotherapy.  Some physios work generically and others specialise in one area or a few areas, doing additional training and having the appropriate level of support and experience to develop a specialism, which is always ongoing.  Physiotherapists work in many areas, here are some of them: musculoskeletal (MSK), respiratory, cardiac rehab, neurology, paediatrics, care of the elderly, falls, learning disability, mental health, persistent pain, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), long covid and palliative care.  

Pain specialist physiotherapists have done additional in-depth training on top of their degree and usually have experience in a variety of areas.  Additional training includes exploring pain neuroscience more in-depth than at undergraduate level, psychologically informed practice training (includes integrating the core principles from, such as, acceptance and commitment therapy, compassion focused therapy and cognitive behavioural therapy), other pain related training and other related training including coaching.  They keep up to date with the evidence base on pain and understand the many myths that exist within healthcare and society about pain and the impacts of these.  Pain physios usually have many years experience of helping people learn to live well with pain and change pain too.  They value, listen and learn from the lived experience of those they work with and the wider lived experience community.

Pain physiotherapists use a whole person centred biopsychosocial model (many use a biopsychosocial-spiritual approach – this includes what’s meaningful and gives purpose) and take a holistic/integrative approach to care.  We aim to understand the whole person and their world and hold a compassionate non-judgmental space for understanding and hearings someones story/journey and to support exploration.  We encourage people to build compassionate self-awareness and to hold a curiosity and a willingness to explore what may be helpful and supportive for them.  Pain physiotherapists aim to empower people, for example, to be able to engage in what’s meaningful and develop a set of strategies to help manage and change pain.  We help people to be able to fully engage with life again and what’s most meaningful.   We work closely with other professionals involved in someone’s care, such as a psychologist and occupational therapist.

Pain physiotherapists understand that pain is complex and multi-faceted and that’s linked to the fact human beings are complex, this is why we have often done a variety of training exploring the different areas of being human.  Each pain specialist physio works by integrating all their knowledge and skills in a way that is blended with the knowledge, skills and experiences of each person they are working with, creating individualised care.  Each pain physiotherapist works a little differently as they integrate their knowledge, unique skill set and experiences into their work.  No one therapist has the same knowledge, skills and clinical experience, just as no-one person is exactly the same.  It is important to mention that we all follow the Chartered Society of Physiotherapy (CSP) guidelines and those of the Health and Care Professions Council (HCPC).  When using knowledge and skills that don’t class as physiotherapy (according to what is set out by the CSP), we adhere to the best practice within those professional guidelines as well.

How To know if Someone Has the Relevant Knowledge, Skills & Experience?

Read what qualifications, training & experience they have on their website and if it’s not available to read on there its ok (and I would recommend it) to ask.  It is ok to ask what someones experience and background is.  Some therapists will offer a free short call, I do this, one reason being it helps people decide if working with them feels potentially helpful.

My Knowledge, Skills & Experience In Persistent Pain

Following my junior rotations in a hospital I chose to specialise in neurology and persistent pain and over the years have done many trainings, lots of reading, had support from more experienced clinicians and worked with many people with persistent pain.  I have worked in chronic pain for over 14 years, in the last 3-4 years I’ve stopped my neurology work and transferred this specialism to being a special interest in working with people with ME/CFS, long covid and PoTS, alongside still working with people with persistent pain.  One of my roles has been working as an advanced practitioner physiotherapist in pain, I did this for 4 years alongside my private work.  

Here’s some of my training:

BSc (Hons) Physiotherapy

Life coaching qualification

NLP practitioner training

Yoga teacher training (200hr)

80hr trauma-informed yoga and embodied resilience course

Two weekend yoga courses for physios taught by physios who are yoga teachers

8 week psychologically informed practice course with the Physiotherapy Pain Association

 Compassion focused therapy (CFT) for healthcare professionals 2 day course

8 weeks CFT training

A few different ACT courses up to intermediate level

Pain coaching course

Explain pain course

Graded motor imagery course

Functional nutrition & chronic pain certification

The above list is a small percentage of the training I have done, there has been a lot more training and reading over the years in addition to what is listed above.  There is other training related to the special interests I have in ME/CFS, long covid and PoTS, and the yoga and coaching parts of my work.

Remember Chronic Pain/Persistent Pain Is a Specialist Area

Chronic pain/persistent pain is a specialist area and it it important that when people are struggling with persistent pain that they see clinician(s)/therapist(s) who have knowledge, skills and experience in this area.  Persistent pain includes many diagnoses including fibromyalgia, chronic low back pain, chronic headaches, CRPS, and many others.

This wasn’t the easiest thing to explain in a short (ish) blog post but hopefully it makes sense and you can see the value in seeing a pain specialist physiotherapist  or an MSK physio with a special interest in persistent pain.  Remember it’s ok to ask what someones background and experience is in working in chronic pain.

If you need help with persistent pain and would like to see if I can help please get in touch to book a free 15 minute call to discuss.

The post What is A Pain Specialist Physiotherapist? appeared first on Unity Physiotherapy and Wellbeing.

What Can Help

We need resources to help us in the grief process, resources help balance the challenges & vulnerabilities that arise.  A really important inner resource is compassion which I think this is foundational in many things including in grief & loss.  Other resources include the process of learning itself, the support of others, perspective taking, being able to connect to safety and trust, and mindfulness.  If someone is under-resourced they are more likely to need some support from a counsellor or psychologist.  Also this can be needed, for example, if the grief triggers into previous traumatic experiences, which I think it often does, especially if someone is under-resourced and it’s still needed sometimes even if someone is well resourced too.  It’s important to recognise when help is needed and also remember that there is no right or wrong way to grieve.

One way to identify what could be supportive for you to nurture is to ask yourself:

What’s challenging for you?

What would help if it was more present in your mind? (for example, compassion, love)

What would it help to connect to in your body? (for example, love, kindness)

You can then nurture what you identify would be helpful, the more we practice and work with something the easier to is to access as it becomes more hard wired.  There may be a time when growing what’s nurturing creates more sadness, it’s important we listen to the not yet and reassure ourselves it’s ok to feel these things and see if it feels ok to continue the practice.  A practice where you can nurture what you identify as supportive could be one like this one, to nurture what’s supportive in the body:

https://soundcloud.com/user-103516027/nurturing-whats-supportive?si=2ef7028b5d334d2e8f6860c9cbfcfebf&utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

Our self-talk matters, as mentioned in part one of the blog our self-critic can get over active and we take the losses and grief and turn them into a big stick to beat ourselves up with, when this happens the compassionate self can help.  Let’s look at a couple of examples and some compassionate reframes: “I need to stop wallowing and get on with living life”, perhaps you could notice how this statement lands in your body and what state of mind it’s associated with?  The self-critic’s view is not very helpful and doesn’t acknowledge the impact, that it’s normal to not feel ok and settled after a loss/losses for a while (how ever long that while is).  Here’s a compassionate reframe example, “my grief reminds me of how much I’ve lost, it’s completely understandable that I’ve been struggling and how I’m feeling is normal, everyone grieves and experiences losses and it’s not easy to navigate this.”  How does that land with you?  Here’s an example that combines guilt with the self-critic, “if I had worked harder to get rid of this pain I wouldn’t have lost my ability to walk further than I can, do the garden and the housework, I really should have stopped it happening, I just wasn’t strong enough to do it.”  Wow that’s harsh isn’t it, how does this land with you?  Let’s look at a compassionate reframe here, “this has been really hard to manage and I did my best to maintain my function and do what I needed to.  I had no control over how things have turned out and I’m doing my best to find what’s helpful for me.”  How does this land in your body, what about your mind?

Being aware of where our attention is automatically resting is helpful, pain and losses take our attention automatically and become a default until we become aware and start to change this habit (it doesn’t mean ignoring the pain and losses).  We have tricky brains in that they are wired for protection and survival and so have a bias towards things that are perceived as a threat.  If, for example, we rest in anger, anxiety or pain all the time it becomes a habit and what we are growing.  Also, when we do this we are functioning from our sympathetic nervous system way too much which impacts us in many ways.  Being mindful of where our attention is, acknowledging what is present and learning about it, then unhooking from this and choosing a more helpful place for our attention is part of creating space around pain and loss.  In this way we can learn from what’s showing up and deepen our awareness without being hijacked by it.

When I did Rick Hanson’s Grief and Loss course recently (linked at the end of this blog) he mentioned that Peter Levine talks about being like a pendulum swinging into the intensity and discomfort and back out.  The rhythm of the pendulum and how long it stays with the discomfort can be whatever is right for you, perhaps this could be helpful in being with the losses and grief and how it’s showing up without feeling overwhelmed.  Over time we can swing into the grief and discomfort and stay a little longer if it’s helpful.  If someone can’t create space in their pain and time and time again they get pulled into it, or maybe even are stuck in it, reaching out for help may be needed.

Dr Rick Hanson also talks about even as the storm passes through the mind for your own grieving there is a place inside, a knowing that a small part isn’t swept away and is alright, even if it’s a tenth of 1%.  Can you notice this?  This basic alrightness as he calls it can be a place of refuge, a soothing place to rest and grow.  Keeping returning to it and building this indestructible, trustworthy, reliable, unshakable core, as Rick says, is helpful.

It’s important to acknowledge the losses through pain or other health conditions, honour them and when we are ready create something meaningful, something that’s helpful for the self and others.  A ritual can be part of this, for example, drawing something, creating a memory scrapbox or memory box, lighting a candle, planting a tree or other plant, writing a letter, getting a group of people together to acknowledge & honour the person that once was with compassion and love.

Here’s a list of other things that help, I’m not talking about them all else this blog will be way too long (this is not an exhaustive list, there are many more things):

The post Grief & Loss in Persistent Pain & Other Health Conditions (Part Two) appeared first on Unity Physiotherapy and Wellbeing.

The suffering associated with losses and grief affects us all many times throughout our lives, losses and grief are part of the human experience and living with love and an open heart.  One thing that I feel is important to mention at the start is that grief has no right or wrong way, no specific length of time, it’s individual.

I am writing this blog as I’m passionate about helping people with persistent pain and other health conditions and I feel that the associated grief and loss isn’t talked about enough.  I am not writing this a psychological clinician instead as a coach and physiotherapist who has done additional related trainings, supported people with losses and grief through persistent pain, and through my lived experience of many losses related to health and other losses.  I’ve supported people by holding space for the grief, acknowledging it and allowing people to process it in whatever way they needed to (alongside a psychological clinician when needed).

There are many losses in life, including deaths, losses of relationships, losses of role, physical and mental losses, climate related losses, societal losses, loss of trust and confidence in ourselves, loss of hopes and dreams, right down to the loss of each moment as we never get the same moment back.  Losses through living with pain and other health conditions can be sudden, or they can appear gradually, they commonly affect many domains of life and can be completely life changing.  Many things need consideration in living with losses and grief related to health conditions, non-finite losses or living losses as they are also called, I will mention some of the important aspects in this blog.

Grief & Our Assumptive World

We all create what is known as our assumptive world, a lot of this develops when we are very young, which is part of our attachment system.  The assumptive world includes how we see ourselves and others, how we feel safe in the world, how we feel that we fit into social systems and how we think the world should work.  It forms a foundation of how we navigate the world feeling safe and ok.  Sometimes things bump up against the assumptive world and we adjust it, other times it’s more affected and it can be shattered.  When this happens we often no longer know who we are, we struggle to know how to be in the world as our old way of being no longer works/is no longer possible and the world no longer makes sense to us.  I think this happens more than is recognised in persistent pain and other health conditions when losses impact multiple domains of life.

When multiple losses wipe out the world we once knew it results in a state of disequilibrium.  This often feels a very vulnerable place to be and we can feel out of control, so a sense of agency is important.  Here’s an analogy I developed, maybe you can relate: A small rowing boat was out at sea, it had been impacted by the many storms, it couldn’t orientate to where it was anymore and it had lost its trust in navigating the sea’s ever changing environment.   It had taken on too much water, this happened so quickly it was overwhelming, consequently it started to sink.  After a while it was possible to work out how to offload some of the water and some dolphins came to help support the boat whilst it brought itself to a state of floating once more.

Once floating it had no idea how to get to shore again even though it could see the glimmer of the lighthouse.  The dolphins were still present providing a sense of safety and comfort whilst the boat rested and floated a while.  It had decided to simply float whilst it reflected on its journey, learning more about the current, the changing waters and the storms.  It began to feel bigger and a little more spacious and ready to start to travel the tricky waters to the shore.  The boat turned towards the direction that the lighthouse glimmer appeared to be arising from, slowly rowing and pausing, rowing and pausing, checking in on the water and the changing tide.  From time to time it let go of a little more water that came on board, the dolphins accompanied the boat as it travelled which was soothing and provided a sense of safety as it learned to trust and navigate again.  The boat had the choice of when pausing was needed and when to change its speed and it kept checking in with what felt right for it.  It became aware of the importance of spaciousness as it travelled and being able to see the wider view once more,  it became aware of distant islands and much more that it could see on the horizon and closer by.  It felt connected to all around and the wider parts of the sea and sky that it couldn’t see, it was soothing to feel connected to all of this.  This was the start of re-learning about the world and the journey towards creating something meaningful for the boat.

Some of the aspects for consideration with grief and loss in persistent pain & other health conditions

There are tangible losses, things that can be more easily seen, and intangible losses that are not so easily seen and expressed.  Intangible losses include: a change in identity, loss of purpose, loss of trust and loss of safe connection to the self and others.  Losses when struggling with persistent pain commonly include: loss of independence, loss of physical function, loss of joy and play, loss of finances/financial stability, loss of relationships, losses of role, loss of identity, loss of trust (in the self and others), loss of self-confidence, loss of belonging and feeling isolated, loss of ability to do what’s needed, loss of work, loss of being able to engage in hobbies and activities once enjoyed.  Often there are commonly many layers with losses and things are complex.

The intangibility of some losses can make grief feel isolating and links into a sense of feeling helpless and hopeless, these are linked to suicide risk which is one reason why keeping connected to a sense of community is important.  People also often feel isolated when living with pain and pain itself lacks tangibility, so it can be a bit of a double whammy with the isolation aspect.  It’s important to connect to the bigger picture view, that pain, grief, loss and suffering are part of being part of being human and many people feel isolated sometimes.  Acknowledging others feel like this too and having a community to connect to is important and can bring a sense of relief, it can be soothing and a sense of connection can feel healing.  Also holding our losses in the bigger container of common humanity rather than in a small container can help things feel less overwhelming.

As with pain itself there is primary and secondary suffering.  With pain, for example, the primary suffering is the pain and then we have the secondary suffering which commonly incudes anxiety, frustration, anger, guilt, self-criticism, and grief.  With losses the primary suffering is the loss and grief, the secondary is, for example, guilt, anxiety, rumination, anger and frustration.  Tara Brach talks about this as first and second arrows, Dr Rick Hanson as first and second darts.

Those close to the person living with persistent pain, or another health condition, are also grieving the loss of the person that once was.  This can be forgotten, it’s important it is acknowledged that the people close to the person living with pain are also grieving the person they knew.

Grief is commonly influenced by unhelpful social messages, it’s important we do what feels right to us with grief and not what societal expectations and norms might dictate.  In society there are many harmful messages for example: pick yourself up and get on with it, you need to try harder, that it’s strong to suppress and strictly manage emotions, and that being self-reliant and fiercely independent is the ideal.  None of these are true!  There are also deep rooted, messages in society around expectations of a fix or cure which puts pressure on people to be ok and on others try and fix things, rather than simply being with the grief and allowing it to be present exactly as it is.

Loss triggers our threat system, the sympathetic nervous system, many different emotions and feelings and parts of ourselves associated with our threat system show up and some stay a while, and our protection mechanisms are generally heightened.  There can be numbness, a lack of emotions, and an emptiness too.  Two of the protective parts that show up are the critical self and the anxious self, it is completely understandable that these parts of us show up, especially as uncertainty can be tricky at the best of times and the unpredictability of pain and other health conditions add into this.  Anxiety may also have been present before the grief and losses too and it can be a strong undercurrent sometimes in grief, it can be woven through the grief too.

It can feel like we have no control and as a result we end up over controlling things to try and manage the uncertainty.  There are common questions I have been asked, and I’ve asked myself too, including: what if I don’t get better?  What if I get worse?  Will I be able to handle it?  These questions are coming from fear of uncertainty usually, and often the anxious self has all sorts of responses that aren’t particularly supportive in the long-term.  We need to acknowledge this part of ourselves and any others showing up that are needing to be seen, heard and understood and bring in our compassionate self to calm the protective parts down and create more helpful guidance and support.

Through unhelpful self-talk, perhaps combined with previous experiences and beliefs, we may also have attached unhelpful meanings to some of the losses, for example that we are not good enough, or we are weak, or we may be carrying unnecessary guilt.  It can be helpful to explore what meanings we have attached to things, seeing if they are true or helpful (likely neither) and creating a compassionate reframe.

Also there can be worry and rumination linked to the losses, this is usually serving a protective function, like the anxious self and critical self do.  When we look under rumination there may be a lot of fear, anxiety, sadness, anger, shame or other protective feelings and emotions.   It’s really common for people who have a lot of losses due to pain and other health conditions to have a fear of if they will manage in the future, and even if they will get worse and the potential impacts of this happening.  In my experience of working with people with pain and fatigue it is commonly fear, anxiety and shame that lie underneath the rumination.  Sometimes we need to work with a therapist to explore this, partly depending on our previous experiences and internal resources.

When someone dies we have a ritual, a few of the various important things about this include recognising and honouring the loss and bringing a community together, people united in loss with love and care for each other usually.  In non-death losses we don’t have a ritual and this is something that can be helpful.

We need to make sense of things, acknowledge and honour what’s been lost and what we miss.  Sometimes we need to let go of things and old ways of being, to then move into re-learning and compassionately rebuilding a new assumptive world that maintains safety.  Rebuilding creates meaning, this is different to making sense of everything, it’s the what now?  It could be seen as building and growing something that’s helpful for the self and others from what’s been lost.  It’s said to be deep work that goes right to our core, maybe you have been there and can relate to the depth, I can.

It’s not about coming to an end of dealing with the loss, although we can make peace with it and create something meaningful it often gets retriggered.  For example, say for a few years it’s not at the forefront of our minds, then it gets triggered & there’s more that we maybe need to acknowledge, notice & allow to flow through as we deepen awareness and perhaps make some changes.  What arises is an opportunity to understand things even more deeply, let go of anything that’s not serving us and develop more resources for navigating the tricky times.

Here’s the link to part two which covers some of the things that can help, there is also a short summary and some resources that may be helpful https://unityphysio.co.uk/grief-loss-in-persistent-pain-other-health-conditions-part-two/.  Please remember grief has no right or wrong way and to ask for support if you need it.

(Some images are the authors own, others are as follows from shutterstock: heart in hands by SewCream , dandelion by JanBusson; from stock.adobe.com: man in boat by fran_kie, words on clipboard by Syahrir ).

The post Grief & Loss in Persistent Pain & Other Health Conditions (Part One) appeared first on Unity Physiotherapy and Wellbeing.

Like me you may be interested in persistent pain and hearing stories from those who experience it or have done. I ended up specialising in pain professionally because of my own experiences and seeing there was far more to pain and helping others make changes than we were taught at university.

I always said my first blog would be sharing my story so here goes. Settle back with a cuppa, it’s a longer than intended blog. If you don’t make it quite to the end remember to read the summary before you go. I can’t guarantee all of you will find this interesting and useful, I hope that you do.

I have had persistent pain for around 22 years, for some of this time I struggled with it. When I was struggling with pain I felt like I was surviving rather than thriving, this really continued until I learnt a lot more about pain (this is complex!), living well with pain, developing more practices that looked after my wellbeing and helped to change pain whilst allowing pain to be in the background. I believe my experiences and learning have helped be become the compassionate integrative therapist I am today. The pain is nowhere near as bad as it was and it does not stop me doing what is most important to me anymore, I am thriving rather than surviving.

With persistent pain there is always a story, so where did it all begin?

There is evidence that adverse childhood events affects health in later life, this is where my story begins. I was bullied for all of my teenage years, throughout secondary school and a little before this too. This was psychological bullying by large numbers of people on most if not every day. My Grandma always used to say ‘sticks and stones may break my bones but names will never hurt me’, sadly this is not the case. I left school with no confidence, self-belief or self-esteem, and would not go out on my own.

I didn’t appreciate how much of an affect this was likely to have had on my health and wellbeing until I reflected on it in the last few years, the more I have learnt my understanding has deepened. I think it is likely that this is where the issues started, there is also likely a genetic component to things based on some family health issues.

How did I interact with the world on leaving school?

Not much if I could help it, I often wanted to stay hidden away like that clam shell buried in the sand for safety yet this is not what I did as long as some of the sand came along too. Gradually I needed less of the sand to come along with me. For many years if people were laughing they were of course laughing at me, no matter how many times I was told by those close to me they wouldn’t be I didn’t believe them.

I had a flexed posture and looked down most of the time, this was a posture of protection and disengagement. The evidence doesn’t generally support correlation between posture and tissue damage yet it is important for things like self-awareness and our interaction with the world.

The journey with pain, health and wellbeing

The first thing that happened in terms of health changes was developing gut issues, this was after a holiday and was around the time of either GCSE’s. It is most likely the stress from being bullied contributed and the exams, who knows if there was something consumed on the holiday that did too. This was eventually diagnosed as IBS, at this time it was thought to be caused by stress and although this is a factor it is not the only factor. I feel we over medicalise things and there are too many labels within healthcare today, for example why do we still feel the need to distinguish between psychosomatic and mechanical pain. All pain is really both seeing as all systems that make us one work together, maybe (and that is a maybe) you could argue acute injury is solely mechanical yet it has psychosocial factors involved too (I would argue it isn’t solely mechanical and believe nothing is). Why do we label in this way and allow the stigma attached to psychological aspects of pain to still be prevalent.

When I was about 18 years old I started to have problems swimming due to shoulder instability, one of my shoulders was persistently subluxing. I was told I had multi-directional instability in both shoulders, my non-dominant shoulder was the one that was subluxing. I saw a lovely and very honest shoulder consultant about 11 years ago who said the surgical option was capsular shift surgery, which he advised could possibly solve the problem for a while but could be more of a problem in the future. Another consultant may have presented this surgery differently (I had only just qualified at the time and had limited knowledge about this surgery). It was interesting listening to a video by Jo Gibson, Shoulder Specialist Physiotherapist recently, she could have described me when she discussed how a group of instability patients have been identified by The Stanmore Group to have their shoulder pulled out of joint by pecs, deltoid and lats, which is what my pecs and anterior deltoid used to do.

I first hurt my back at work, around 20 years ago, at this point in my life I was working in a bank. I had Chiropractic treatment for both which helped to an extent. I later had physio, which helped a lot, and inspired me to become a physio.

What happened next?

About 5 years later I started my physiotherapy degree, 11 years down the line it is still a job I love and am passionate about. At the time I started studying I intended to work in sport, during my student rotations I developed a love for Neurology and my plans changed! Later down the line as a junior physiotherapist I started exploring pain, I thought there was more to it than I was taught, I became more and more interested in it and helping people struggling with ongoing pain.

During studying my shoulder became more of a problem, I would often finish a day on placement struggling to get changed as my shoulder range had significantly reduced, often my shoulder was subluxed. When not on placement I would drive home from university (an hours drive) and often had to lay on the floor once getting home to try and get the tone in pecs to drop and get my shoulder back in alignment. When I treat patients with shoulder subluxations now I understand the amount of pain this can cause. I made it through my degree and acute work as a physiotherapist, it was challenging as my shoulder really didn’t tolerate load. I kept on going and pushing through the pain and ended up with an even more sensitised nervous system and at some point with neuropathic pain, this may have been whilst studying or later my memory of that is not clear.

About 7 years ago I took a senior role in a specialist community stroke team, during the time I was struggling with my shoulder and arm pain, I could sometimes be found lying on the floor which I only resorted to when my shoulder was subluxed and I had neuropathic pain. At the start of working in this team I had a car accident which resulted in a whiplash injury, dizziness/imbalance and headaches, so that added something else into the mix. After about three years of working with this team I hurt my back at work, I had severe lower back pain and distal neural symptoms (pins and needles). Did I stop? No, I hadn’t learnt, I kept on going and pushing through the pain, there was a bigger threat to me in going off sick and so I just told myself I would be ok. A month or so passed by and I finally went to my GP as I wasn’t sleeping because the nerve pain and pins & needles were worse and keeping me awake. Catch 22, lack of sleep increases perception of pain and pain inhibits quality sleep. The medication helped to an extent and on I went until I reached a point where something snapped (not literally!), I spoke to my manager and told her I couldn’t do it anymore I needed to go off sick. You may be wondering why I kept going, I knew that I needed to calm things down and pushing through things wasn’t helping. The bigger threat was that I had previously had a few months off with shoulder and arm pain, when the pain was so unbearable that changing gear was very painful and I could take hardly any load in my arm and sometimes none, this unfortunately later caused issues with a colleague. It is not something I will go into partly for professional reasons, it was in essence bullying in the workplace. This threw me spinning back into lots of self-doubt, my confidence plummeted, I noticed some old patterns resurfacing, and I hated going to work (something that is very rare in my life as a physio). Before my back injury things with this work situation had improved to an extent though were not fully settled so I was worried what would happen if I took time off.

Somewhere along the line I developed fatigue, not the ‘I’m tired it’s been a long week’ sort of fatigue but the sort of fatigue that is all encompassing. I often found concentration hard and wasn’t great at remembering things. Sometimes I got home and had to lay on the floor until my energy levels improved, that’s if I wasn’t needing to lay on the floor to settle my shoulder back into joint anyway! This is hardly surprising with the daily stress throughout secondary school and the affect this will have had on the HPA axis amongst other things. I was functioning in flight and freeze responses a lot of the time at school and for a long time afterwards, my nervous system was on high alert. Thankfully I don’t have this all encompassing sort of fatigue anymore.

I stripped my life back to not doing anything I loved, I knew better than this and yet still did it as could see no other way at the time, I wasn’t interacting fully with my world again. I lost a lot of exercise tolerance and there was sensitivity to a lot of movements and activities. I couldn’t walk down the road for 5 minutes without a significant flare in symptoms. I used my own knowledge and skills, those of colleagues, and lots of love and support from family to gradually make changes. I gradually started to do things like this again, there were times when I couldn’t do it all and I noticed it annoyed me until I came to a place where I realised if the house wasn’t tidy it didn’t matter. I chose what to focus on instead of being annoyed at what I couldn’t do I focused on being grateful for what I could do and I learnt to ask for help. When things like doing the housework felt like climbing a mountain I did what any good mountaineer does and I made a start, I learnt to navigate more effectively with experience, including resting along the way.

Having built things up and calmed things down a lot I fell down the stairs and fractured my wrist and had surgery more on this in the what happens when your dominant hand out is out of action later. The headaches turned into migraines during the recovery from the wrist injury and surgery, about 7 months after, hardly surprising with everything that happened during this time. These were diagnosed as chronic migraines by a Neurologist who said the only way forward was medication. On discussion he agreed to let me try and change things without medication first, with a look of that’s unlikely to happen. Two months later they were downgraded from chronic to episodic, more labels, and now they are mainly headaches not migraines although I do get a few.

I understand what it is to not be listened to by medical professionals to be made to believe pain is in your head, and to feel like it’s your fault. Professionally and personally I know that this is not the case but that didn’t always help, and in the early stages of the journey I wasn’t a physiotherapist and didn’t have this knowledge. Pain is never all in your head and it is always real, brain and body are one and neither functions independently of the other.

Are decisions easy?

Some are and some aren’t! I didn’t want to go back to work in the NHS team following my back injury, this created anxiety which i initially got hooked up in. Lots of things went through my head: what will my colleagues behaviour be like, how will I cope with the load demands, and other thoughts. I decided to resign and build my private work up and my strength and fitness at the same time. This decision felt right, all my family were behind me which helped, even if they were a little worried if things would work out. It wasn’t easy, yet I had more control and was able to adapt things without any workplace issues to contend with. I could finally calm things down and modulate the load demands. I returned to what I loved doing outside of work, gradually the back and shoulder pain changed and my shoulder no longer subluxed, I got fitter, and then I fractured my wrist!

What happens when you can’t use your dominant hand?

In my experience dependence and frustration initially, learning to do things another way, adapting, and asking for help to name some significant things. I had just got to the stage of maintaining my shoulder range with some load and ready to start loading the arm more including overhead prior to this. The fracture was both radius and ulna with the radius fracture being a little displaced, it resulted in radial plate and carpal tunnel decompression a week later and later down the line working to reverse CRPS! I also had coccyx pain for some time after this possibly a year or more. I was having issues with the other shoulder and neck, the side I fractured my wrist on, and before the fracture I was going to get a colleague to help with this. As you can imagine by the time I got treatment for this the wrist injury and disuse of my arm had impacted it too.

The time between injury and surgery was rather stressful. The A&E staff were fantastic and caring, although the overnight stay on the ward was not a great experience and my pain was poorly controlled by medication. I had been told it was definite surgery, however the next morning the Consultant said there was a 30% chance of this and was sent home for review in fracture clinic 2 days later. My knowledge had me questioning, I reached out to an Orthopaedic Consultant at another hospital who was concerned they were doing nothing, he advised the minimum needed was manipulation under anaesthetic. The care felt disjointed and compassion was somewhat lacking at this point. When I went for my review two days later the notes were still on the ward, we had to wait nearly two hours whilst they were located, following another x-ray I was told the fracture had further displaced and needed surgery. I ended up with surgery at another hospital, this was my choice. This team arranged surgery the day after they saw me due to the worsening neural symptoms, this team’s communication was effective and reassuring, I had complete trust in them which can never be underestimated. Whilst awaiting surgery I was trying to notify patients and find someone to cover for me whilst off and do a handover of patients. Being self-employed I had no sick pay, so applied for Employment Support Allowance, this later turned out to be very stressful and gave me an insight into what patients have to deal with. Lots of factors were ramping up the threat of this injury to me, which I was counteracting to an extent with yoga and meditation.

Two days post op my thumb swelled significantly and was so sensitive I couldn’t touch it, it was the sort of sickening pain where you don’t know where to put yourself (if you have ever experienced this you will know what I mean and may even have a visceral reaction to this right now!). I sought the help of a private physiotherapist colleague at this point who was able to help calm things down by targeting the neuro-immune system.

Long story short, myself and the Consultant thought it likely the plate was irritating, this was about 6 months post op, but as there was no way of knowing we agreed I would sit it out longer. Around 14 months after injury the plate was taken out, I no longer had any signs of CRPS by this point, and things were evidently different within a few days of surgery despite the acute post op pain. With patience and persistence, I have got back to a fairly high functional level with my hand even though I still have pain.

I developed a depth of understanding with patients that have their arm function taken from them overnight, although every experience is individual. Overnight I went from being independent and working to being dependent and not working. Everything was hard and things were frustrating as I couldn’t use my dominant hand. I learnt to write left handed, and even filled in the Employment Support Allowance form left handed as I was determined to not keep asking for help as what I could do myself was pretty limited. To feel like you have no purpose and be completely reliant on others for many things once taken for granted is a place of deep learning or it was for me.

I practiced yoga every day and used visualisations for movements I couldn’t do, went for walks, and I read. I integrated my Neuro Linguistic Programming (NLP) and coaching knowledge and skills and became aware of what I was saying to myself. Also, when I noticed my accuracy of recognition on my right side had shot down to 60% I started using NOI’s left/right recognition app, I tried mirror therapy prior to this but it was irritating at this stage but was useful later. This was around the time of realising I was developing CRPS.

What changed?

Did the pain fully go away? The pain has significantly changed, it used to be a at the forefront, it was in the driving seat. It is no longer the pilot and it’s not even co-pilot it’s a passenger, it is quieter and I do not resent it or the experiences that have contributed to the persistent pain state. Sometimes it starts to shout and now I do listen and can quieten it again. One day it may fully go away or it may not, either way I plan on keeping doing everything I choose to.

How did things change?

Things are dynamic and always changing so in some ways not doing anything was needed to make changes. However, to make lasting specific changes it took: the unconditional love and support of close family and friends; daily practice of gratitude, self-compassion, patience and perseverance; awareness practices including of behaviour and thought patterns, daily meditation and yoga; returning to exercise (the gym, yoga, swimming, walking); and doing the things I loved including photography, walking and writing. I didn’t used to be a gym kind of person, partly because I never felt confident there and they tend to be quite noisy which is something I can be sensitive to, I now enjoy it (another example of how things can change in life).

When I went back to swimming and joined the gym I could swim 4 lengths and that was enough, I could do a up to 5 minutes on the cross trainer and bike and not a lot else. I gradually built things up and went to yoga and practiced at home. When I rocked up for my first yoga class, in rather a lot of pain including neural leg/foot pain, it turned out to be the teacher whose class I went to for a little while 10 years prior to this. She had also known my Grandma and tried to help when she was ill with cancer. The classes were immensely helpful to me and played a big part in my healing, I have practiced yoga on and off the mat daily ever since. I now integrate yoga into my physio practice from my own practice and short courses done with two physiotherapists who are also yoga teachers.

I was told at one point by a colleague that I was not stable enough to use the cross trainer. This is when I was getting more neural symptoms during and after using it. I chose to ignore this advice, mainly because by this point I understood pain differently and in greater depth and knew that it was sensitivity not stability that was the issue. I kept on using the cross trainer to the point of the pain alarm going off, being aware of my body tension, breathing and thoughts, and kept gently nudging the barrier. I also knew if I stopped using it I couldn’t replace the cross trainer with something like the static bike as I didn’t particularly enjoy it and felt the rhythmical movement on the cross trainer was helpful, now using it is not a problem. We have to be careful not to keep taking things away from people, especially when they are often already restricting things themselves. A patient once said to me they really wanted to walk one of their dogs and said bet you will tell me not to, I said you absolutely can. Instead of saying no I advised them to take the dog they most trusted for a short walk, maybe a few minutes down the road and back and then build gradually from there, the smile and reaction have stayed with me.

Along my journey I realised fluidity and ease of movement had put themselves in a locked suitcase somewhere and I didn’t know how to access the lock. Through breath and body awareness practices, yoga, pilates and swimming I found this key. I now swim a mile a few times a week and get to the gym a few times as well when time allows. Swimming is something for me that is calming, it’s a great mindful activity and it reminds me of my Grandma who was a swimming teacher. Swimming is something I grew up with and all of my close family love it and are great swimmers. I often smile as I can hear my Grandma saying ‘hands!’ when I’m swimming backstroke. A fitness professional said how amazing my backstroke was last year and not many can swim it that way, this was lovely to hear especially as I was near the end of my swim at the time and fatigue was setting in and because it meant the fluidity I felt was also observable.

I trained as a NLP practitioner in 2012, this was an amazing personal journey and one that became a new way of life. I then trained as a life coach which built on the NLP training, both have helped me change my life and those of others. We need knowledge and skills from things like coaching as physiotherapists.

The good news is the shoulder that used to sublux is about 90% better, it didn’t get better until I left the NHS likely because a lot of the work was heavy and my body was not coping with load which it now does. I still have a sensitive gut, get some sciatic pain and back pain, pain in carpals and wrist from the fracture and have yet to fully settle my shoulder and neck on that same side although I am confident that I will. I had physiotherapy for the wrist fracture and surgery and integrated my own knowledge and skills to get to the level things are now.

After the wrist fracture a physiotherapist I had connected with on social medial reached out to me to offer support, thank you Shelly. I have never met Shelly even though in some ways I feel I have. This gesture of support was important, it was an extension of compassion, and understanding as Shelly knew what it was like to have a significant injury and be a physiotherapist. Connections and social support are an important part of healing and our ongoing wellbeing.

Previously being a physiotherapist has defined me, or so I felt and I didn’t know who I was if I wasn’t a physiotherapist. There have been two injuries, back and wrist, where I have wondered if I would have to change career. This was especially the case with the back injury, I was catastrophizing a bit at this point in time! It worried me at the time, yet when I wondered again about my career some time after the wrist fracture and the first surgery I was no longer worried, I had realised being a physio did not define me.

At the end of last year I came to a realisation that my body hadn’t let me down and I knew I trusted it again. I could see it had never let me down it was simply my perception at the time and for some time to follow that it had. I am fitter now than I was 10 years ago, this quote springs to mind ‘it’s not the years in your life that count it’s the life in your years.’

Do I hold regret about how I have chosen to handle things, not in the slightest as I know I made what I perceived to be the best decisions at the time. Do I wish it hadn’t happened to me? Yes, on one hand as there has been rather a lot of pain yet on the other I wouldn’t be where I am or the person I am. I now see things differently, I see many more choices and I don’t see things as mistakes or blame myself, the best intention is always even if it does not result in what I envisaged. Am I bitter towards those who bullied me? No and I have forgiven them and myself (as you may have gathered I was beating myself up for a while).

The person that was once a clam shell wanting to stay buried in the sand for safety is now a dolphin gliding and swimming, playing and connecting. To reach the confident (mostly) and resilient person I am now it has taken around 20 years! I do sometimes still beat myself up yet recognise it quickly and chose a better and more helpful way to be!

In summary

I hope you take something from reading this, whatever you take will be up to you, and well done if you made it this far! Pain is multifactorial and needs a biopsychosocial approach, it seems the bio gets thrown out by some or others keep it as the focus and others have found an in-between and tailor the biopsychosocial to the individual. We know from the research that trauma, which includes bullying, especially in childhood contributes to persistent pain. The old structuralist view is outdated and a very small part of the picture (remember I didn’t stop using the cross trainer and got better).

If I knew 22 years ago what I now know I may not have pain now who knows, equally I would not be who I am today so for that I am grateful. The reality is we are always building and rebuilding or extending, yet the foundations are always there. The foundations are our core or essence, or what it is that makes you you, it’s a powerful thing to understand. When pain persists it is important to integrate making changes into life, keep hope yet without doing things just to change the pain as that keeps pain as the focus, and not put life on hold until the pain changes (change usually takes some time and restricting things can help keep the pain more prevalent). Ultimately please remember things can change with many things, some key things are time, patience, perseverance, compassion, connection and love (both love for yourself, from others and doing the things you love too).

Watch out for the next blog coming soon, it will be shorter! I will leave you with a life philosophy which I wrote when invited to write a short statement on the filter we push things through on a pain coach course at the end of last year. It evolved very quickly, which likely means it was unconscious and I was in flow when I wrote it. It shows me how much has changed, I now choose love not fear. This is stuck on my fridge door:

‘To create and experience life through connection and love, to learn and grow with presence.’

The post My Journey with Persistent Pain appeared first on Unity Physiotherapy and Wellbeing.

On a side note to exercising with ongoing pain we need to all remember to take regular movement breaks during the day.  Exercising or being active for an hour after sitting all day is not enough.  We lead much more sedentary lives than we used to thanks to, such as, advancing technology and more use of our cars.  With the pressures of modern living it is important we think of ways to add in more regular movement into each day, creating new movement habits with regular practice.  Maybe this could include walking to work, parking the car further away from work or getting off the bus a few stops earlier, going to speak to someone in the office instead of sending an email, doing some squats whilst the kettle boils, standing during a phone call and going lifting alternate heels, there are many possibilities!  During the day remember to take regular movement breaks, these little movement snacks will also help your concentration and attention as well as your body.

I have noticed some common questions from people with persistent pain, including:

1. What exercise is helpful?

When choosing the exercise consider:

• Does it help you achieve your goals, maximize or maintain function?
• Do you enjoy it?
• Is it meaningful?
• If there is a variety of the types of exercise (mix of cardiovascular, flexibility, strengthening)
• Is the level achievable for you at present or do you need to modify some of the variables (see dosage tips below). Think of the Goldilocks rule – not too little, not too much, just right.
• Do you feel confident in modifying the variables or do you need to explore this with a physiotherapist?
• Do you understand your pain and have a toolkit that helps when you have a flare up?
• Do you have an understanding of pain not necessarily being correlative of what’s happening in the tissues – hurt doesn’t equal harm?

2. How do I know what’s enough for me and how do I avoid pain flare-ups?

For ages 19-64 The World Health Organisation recommends 150 minutes a week (30 minutes a day) of moderate intensity aerobic exercise (e.g. brisk walk, cycling, slow swimming), or 75 minutes a week of high intensity/vigorous aerobic exercise (e.g. running, a game of tennis, fast swimming), and twice a week strengthening of all major muscle groups.  Moderate intensity and high intensity aerobic exercise can be mixed, it has been said 1 minute of vigorous/high intensity aerobic exercise equates to 2 minutes of moderate intensity.  This amount of exercise could be something for you to work towards.  For some people with long-term conditions it’s not achievable, which is ok as long as the level of exercise being done is enough for adaptability.

What’s enough for one person may be too little or too much for another so this needs exploration, if it’s not something you feel confident to do on your own a physiotherapist can guide you. Remember the goldilocks rule here – not too little, not too much, just right! The only way we find what’s best for us is by testing and exploring, we learn through experience.  It’s important to remember a little bit of pain flare-up with persistent pain is ok, by a little I mean that it settles within 24 hours and doesn’t affect your daily function.  We need enough challenge for adaptability of body and nervous system and this can mean a little flare-up, sometimes we initially aim for no flare-up to build confidence and calm things down, we need to remember to build things up.  Start where you are at, find your baseline, if you have persistent pain this baseline needs to be a level where you don’t have a big flare-up that lasts a few days or longer (in the traffic light system below that’s red).  Find a level that feels achievable and comfortable for you.

The traffic light system:

You mainly want to be exercising in the green, amber is ok yet either needs increased awareness, a little adjustment to proceed, or modulation to change to a green light.  An amber light can mean too much too fast and needs evaluation, red is stop and significantly modify what you are doing and possibly seek guidance from a physiotherapist if needed.

Red – there is a severe flare-up during the exercise, 7 or more on a 0-10 scale, you don’t feel safe/are worrying about causing more pain or damage.  The pain flare continues after exercise for between 3 days and several weeks and you have a significant loss of ability in your daily function.   You need to stop when in the red, seek advice from a physiotherapist if you are often in the red.

Amber – pain flares during activity of 4-7 on 0-10 scale, yet you know you are safe.  This is a pause and proceed with awareness light, notice what happens as you continue and if things are settling or not continuing to intensify continue for few repetitions or 1-2 minutes. Afterwards pain persists by up to 3 numbers above your baseline and settles back to baseline within 24-48 hours, and only minimal effect on daily function.  If the after affects are longer or function is more affected make sure the next time you are in amber you modulate to green.  You may need to use some tools from your pain flare toolkit to help things settle.

Green – pain flares during activity 0-4 on 0-10 scale and settles in less than 24 hours with no loss of function.

When you know your baseline work there for a week, with a green traffic light, and if you feel confident to increase this the following week add a small amount more e.g. 5 more minutes duration or a 1-5% increase.  Remember hurt doesn’t equal harm, yet with ongoing pain when the body and nervous system are sensitive we need to calm things down, so working in green is the most helpful place to be.  We need enough challenge for adaption which may mean a little flare up, as the green shows.

Dosage variables you need to consider and can modify:

(Think Goldilocks here!)

• Frequency – how often you exercise each week
• Intensity – exertion level or amount of weight lifting
• Duration – how long each session is
• Type – cardiovascular, strength, flexibility/mobility
• Load – all the things that affect your homeostatic balance (e.g. sleep & stress)

If every day is too much for moderate intensity exercise start with every other day or even twice a week, it doesn’t matter where you start, remember it is more important that you know your baseline and make a start.  You could split the duration into two 15 minute moderate intensity aerobic exercise sessions rather than one 30 minute one to start with.  Make sure you do a mixture of exercise to include cardiovascular, strengthening and flexibility/mobility.

3. What to do if you have a flare up

• If you have a big flare up it can be a result of a combination of factors, rather than just exercise, for example imagine you have slept badly for few days, have more stress at work (increased load on your systems affecting homeostatic balance) and you do your usual level of exercise and experience a big flare-up and instead of being in green on the traffic light system you are in amber tipping into red or maybe you are in the red.  When this happens reflection on all the factors affecting you is important, modulate what you can and seek help when needed.
• What traffic light are you using, make sure you are in the green and re-evaluate your baseline.
• What tools do you have in your toolkit to help (e.g modulate activity, a little more rest between activities, meditation, hot bath).
• If having repeated flare-ups that you are struggling to manage seek help from a physiotherapist.

A few tips for awareness & modulation of mind & body when exercising with persistent pain:

• Notice what you are thinking – do you feel safe or are you worrying about a pain flare? If you don’t feel safe, make some adjustments so you do and then re-evaluate.  If you are worrying about making pain worse it usually does as systems are already on high alert.
• How are you feeling? Do you feel confident and safe or do you feel unsure and anxious?  If it’s the latter what can you do to change it, what do you need to know or feel to feel more confident and safe to exercise?
• Notice what happens to your breathing, are you holding your breath? If so can you soften your breath. Remember your breathing will change with moderate intensity exercise.
• Are you holding more body tension than is needed? Can you modulate it? If not change what you are doing to make it a bit easier & re-evaluate.

Tips for sticking to your exercise routine:

• Know your strongest motivators.  I talk to people about peeling back the layers like removing layers on an onion until you get to the core.

• Exercise with a friend or family member.

• Make sure the exercise you choose is enjoyable and/or meaningful to you.  Have fun, play, and be creative.

• Vary your exercise, maybe every 4-6 weeks, even a small change is helpful.  This is helpful for physical adaption as well as mentally.

• Set aside some time each day, if something else gets in the way that’s ok you can adjust your timetable.   If it is commonly being replaced by other things look at why: maybe you haven’t yet revealed your deepest motivators, maybe you are anxious about causing more pain, maybe you don’t enjoy the exercise you are doing, maybe you are not seeing changes and are wondering if it’s really helpful (you may need to seek help if this is happening or you may be able to explore and make changes yourself).

• Keep a record of what you have done each day you exercise.  Reflect on this at the end of each week and then plan next week’s exercise.

Summary

In summary, understand: what exercise you enjoy and what exercise is meaningful to you, your motivators, where your baseline is and think green traffic light; that there are different variables you can modulate in the dosage.  Remember hurt doesn’t equal harm and change is always possible.  Make regular movement snacks part of your daily routine. Seek help from a physiotherapist if needed.

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