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.

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.

An increase in pain or fatigue that significantly disrupts your daily function and/or sleep for a few days or more is commonly referred to as a flare-up, some people use other terminology, for example a set-back.  Some things commonly go along with this including increased self-criticism, frustration, low mood, and loss of tolerance for some activities.

What is a compassionate flare-up plan:

A flexible plan, developed and implemented through a compassionate lens, of what you can do to self-manage what is happening, to calm things down and build things back up again.  It draws on previous experience of managing your pain and what is helpful for your wellbeing.

Why is compassion important?

Compassion is important in a flare-up plan as often people blame themselves, self-criticism and frustration commonly increase, which in turn turns up the pain volume and has other draw-backs like the impact on your mood.  Having a compassionate focus also encourages kindness, gentleness, courage and strength.  Compassion helps you support yourself and do what’s wise for you at that time, for example, asking for a little more help and support for a few days or weeks (there is both strength & vulnerability in asking for help).  Compassion has also been shown to help in many ways including decreasing self-criticism, rumination and stress, along with improving resilience & overall wellbeing.

Compassion encourages you to step back rather than pushing on regardless or stopping everything (neither of which are recommended) and ask yourself questions like ‘what can I do for myself out of kindness today’ (this is a question I love that I heard on a course with Dr Mary Welford).

‘Our compassionate self brings wisdom that illuminates the available choices & the possibilities flowing alongside them, along with what could be most helpful right now.’

What causes a flare-up?  There are many reasons and commonly it is a combination of things, including:

• Doing too much (this could be the boom-bust cycle if it happens regularly)
• Working to build tolerance and fitness levels up
• Choosing to do an activity outside of tolerance levels (some activities are worth this)
• A virus
• Increased stress
• Decreased sleep

It isn’t always easy to work out what has caused a flare-up, sometimes it helps to explore what had led up to it and other times it isn’t.  If you find you are having repeated flare-ups without any obvious contributors the best thing to do is usually to focus on actioning your compassionate plan.

Why do we need a flare-up plan?  Here are a few reasons:

• It helps you stay in control and feel confident with self-management.
• There are always flare-ups when living with pain and sometimes these are really difficult to deal with and sometimes feels like a million steps backwards have just happened at great speed.  A compassionate flare-up plan helps us remember the things that are helpful, what we can do to manage things, calm things down and build tolerance back up.  It’s not always easy when pain increases to think clearly, having a plan helps us take action away from getting caught up in things like self-criticism, rumination and anxiety.
• If we don’t have a plan we can end up getting stuck n a cycle of doing less and less, as a result we end up maintaining a new lower level as systems adapt to this and we lose fitness and tolerance for the activities we need and want to do.  This also affects confidence for doing daily activities amongst other things.
• Flare-ups can make people withdraw further from others, themselves and the world around them.  Retreat is a natural protection mechanism, this may be a helpful short-term strategy, however it is not helpful when it is repeated regularly in the long-term.  Retreat and disconnection are also things that turn up the pain volume and sensitivity, connection to others and ourselves is an important part of managing pain and overall wellbeing.
• Some things are worth the flare-up, these are the things that matter most to us.  You can make a mindful choice to do an activity, even though pain is likely to increase, because you feel the activity is worth it and knowing you have a compassionate plan to help you over the following days to find some ease can be reassuring.  So, a compassionate flare-up plan can help you take steps forwards towards your values and what matters most to you.

What to put in a compassionate flare-up plan?

This is individual to you and requires some exploration and reflection.  Grab a notebook and make some notes, if you are having a flare-up now use this experience and previous ones as you read to make notes, otherwise remember the last time or times you had a pain or fatigue flare-up that affected your function and sleep for a few days or more.

• Consider what may have contributed to the flare-up, if this is helpful (sometimes it’s not, notice if you get stuck in a look of self-criticism and guilt).  Compassionately acknowledge (a gentle tone, a helpful acknowledgement without criticism) this and what could be done differently next time, if anything.
• What helped you calm things down and build things up before?  What didn’t help before?
• Set yourself some easy short-term goals based on meaningful activities (what’s important to you, what do you most enjoy doing).
• Plan to gradually build things up to rebuild tolerance and fitness.  Align this with your goals and allow yourself flexibility to adjust things if needed along the way.
•  Moving little and often is usually helpful.  Remember to include movement in your plan.
• Prioritise what needs to be done and leave the rest or ask for help (it’s not a weakness to ask for help it’s a strength).  It can be frustrating leaving things, there are strategies that can help you manage this.
• Having flexibility & support from your employer is important, having open and honest discussions with them about what support could be helpful during a flare-up (for example, frequent short breaks) to helps things settle down again.
• Remember to change how you usually pace things for a short-time, you will have lower tolerance as the need for protection has be deemed to have increased (things are on high alert), pacing differently can help calm things down.  It is important to have a flexible plan for building things back up as you will otherwise adapt to the new lower level.
• Don’t stop everything and rest for more than a few hours at a time, it is usually better to do a small amount regularly with short rests.
• Notice self-criticism with self-compassion and unhook from unhelpful thoughts.  One way to do this is to say, for example, ‘I notice that I am thinking the thought that…’  Another is to write a compassionate letter to yourself to acknowledge how things are and that it’s not your fault, it is understandable & part of being human and living with pain.  There was a post on this on Unity Physiotherapy & Wellbeing’s Facebook page in September 2019 as part of Pain Awareness Month.  There is also guidance in The Compassionate Mind Workbook & Compassion Focused Therapy for dummies.  If you are unsure, or struggle with this, please get help from a suitably trained therapist.
• Practice self-compassion.  There is guidance in both books mentioned above, The Compassionate Mind by Professor Paul Gilbert and on Kristien Neffs website https://www.self-compassion.org
• Increase relaxation based activities, for example meditation, gentle stretching or anything you find calming.

• Integrate more things that stimulate the soothing system (this is part of the 3 circles model in compassionate mind training/compassion focused therapy).  I go through this in clinic with people, there is also guidance in the above books and this video by Chris Winson https://m.youtube.com/watch?v=peC-bB4DqXQ&fbclid=IwAR3b10RyukjKxkukeByQB4XQVeo0bMkVfjo1uvwggpamb09iTc0r-vpc07M
• Consider if you need medication in a bad flare-up or can you manage things effectively with other strategies.  If you need medication discuss this with your Doctor, Pharmacist or Non-Medical Prescriber, such as a Physiotherapist who has done additional training, how to optimize this.
• Focus on the present moment and the small steps rather than the set back and where you were.

Need further help?

Ask your physiotherapist or other healthcare provider for help if you are unsure of how to create your flare-up plan.  Creating individual compassionate flare-up plans is something I help people with at Unity Physiotherapy & Wellbeing.

‘A compassionate flare-up plan helps you keep returning to a life full of meaning & purpose with pain in the background’

The post A Compassionate Plan for Persistent Pain Flare-Ups appeared first on Unity Physiotherapy and Wellbeing.

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

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

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

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

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

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

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

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

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

Meaningful Activities and Flare-Ups

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

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

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

Summary

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

References

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

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

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

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

Bibliography

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

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