As the UP story gathers momentum, in particular the #upandrun project (ultrarunning, marathon running and the UP education programme), we are delighted to welcome two new UP ambassadors: Chris and Jeff. Both will be running for #upandrun so keep an eye out for blogs, pictures and always the hashtag!
If you see #upandrun hashtag, give us a shout out! Take a pic and post it on Twitter or Instagram.
Chronic pain affects so many people for so many reasons. The measure of our success will be how many people we can inspire to move on to live their best lives.
This week look out for…
Richmond running along the Thames Path tomorrow (Thursday) from Hampton Court to the Thames Barrier
Next week look out for…
The UP talk and workshop on Weds 3rd July at 2pm at The Groves Medical Centre. Get your place here >> tickets
There is no quick fix for persistent (chronic) pain, but you can understand your pain and move on to a fulfilling life
In a world where we have become accustomed to immediate gratification, the really important things take time and effort. For example, relationships, work satisfaction and wellness. There’s no quick fix for any of these, and the same goes for pain. All require understanding, a picture of success that you work towards each day by taking positive steps. This is normal.
People often ask if they can get better. I say yes. We can always improve and get better. What does this mean? It’s individual of course, but in essence it means that the person feels liberated from their suffering and is able to live a fulfilling life. Do they still experience pain? Probably. But there’s a big difference.
A suffering society ~ time for change
Pain is part of the way we protect ourselves and survive. It is normal and necessary. Yet why do so many people continue to experience pain when there is no immediate threat or danger? Similarly, why do people who suffer PTSD continue to suffer repeated episodes? Why do people with anxiety disorders feel anxious when nothing is actually happening? Why do people feel depressed when there is joy all around? Hopefully you can see the similarity in the patterns here. The words are interchangeable and the suffering immense. This can and must change, and driving this change is the purpose of Understand Pain.
The answers to these questions lie in the way we live and the way society has evolved and is working. This is why a social shift is necessary as we develop a new level of consciousness, understanding the causes of suffering so that we can focus on building wellness.
The difference is the impact factor. The inner disturbance lessens, life fills with meaning and great states more often as the person pursues a purpose and reconnects with people and the planet. We only have a limited capacity for awareness, so when we fill this with people who inspire us, support and love us, when we share and give, when we get outside into nature and feel that we are contributing to something greater than ourselves, life transforms.
There is no super-highway. To achieve a better life requires us to know what that life would look like and take steps in that direction each day. We need a clear direction and tools and practices to use to keep us motivated, orientated and an awareness of the achievements along the way.
We are designed to change — life would not be possible without change. Embracing this natural development, we can learn to create the conditions for moving on, whatever our start point. We continually ask questions of ourselves and the answers determine the quality of our lives via the answers and what we focus upon and decide to do. So asking the right questions is key. Here are some examples >> What CAN I do? How can I build my energy? How can I best look after myself? What steps can I take today towards my picture of success? What can we do together to move forwards? What is the best decision now? And now? Whatever you ask, you will answer.
Suffering chronic pain, you are likely to need support, help and encouragement with practical advice about what you must do each day. Pills do not provide this, nor any other form of quick fix. We are encouraged to push down emotions, distract and turn away yet it is by facing our ‘stuff’ and all the reasons in our life why we continue to suffer. This takes courage but it is the way to transform our lives. And we all want the best life we can create.
Sanjay is a superb example of someone who did exactly this, moving on to a meaningful, fulfilling, challenging, scary, exciting project, Pursu. I would encourage you to read his story on the Pursu website as he has created both an incredible product but more so is the meaning behind it and what he is doing to contribute to society. And this from a story of pain: Sanjay’s story
On May 22nd I will be talking about this and more, giving practical tips and knowledge about pain to help people gain insight and move on. This is free and you can get tickets here
Look out for the orange shirt and share pics >> #upandrun
I am pretty excited now. As usual I woke early, so we will get on the road to the South Coast. I’ve not done a road marathon since the London in 2017, and that brings back great memories.
This week has been a coaster, or tapering, which has its own challenges that are more mental than physical. Although it all comes as one experience of course — I don’t want to disappoint regular readers into thinking I have become a dualist!
I have noticed that the really short, easy paced runs of between 3 and 8 km to be more tough than the long ones! Although important to keep moving and the feel of the stride, I find them heavy, rather boring and puffy (I puff). There you go.
Anyway, it’s off to Brighton, one of my favourite places, to pick up the running pack, take in the sea air, meander through the lanes, end up with a big bowl of pasta and an early night.
If you are supporting or coming to watch the Brighton Marathon, give me a shout and a wave, take a pic and share with #upandrun so we can spread the word and gain momentum. Understand Pain is all about a better world that we can create together.
This is a strong message and one that must be realised.
Life is only possible because of change and impermanence. Each moment unfolding is new, and fresh. Bodily sensations such as pain appear in our awareness as the objects and contents of consciousness, just as thoughts, sounds and what we see appear to us. This is our lived experience. When we stop and watch our own experience, this can be realised.
What often stays the same and recurs is what we tell ourselves about the pain we are feeling. Of course this can be reinforced by the fact that the same things are challenging each day. We attach to our stories. The inner dialogue can be so influential despite the fact that much of what we tell ourselves is untrue, self-critical or pure nonsense at times. What we need is a self-encourager that comes from self-compassion.
A problem that we can all have is the remnants of, or continuation of coping strategies that we once learned to shut off from stress, avoid pain and protect ourselves in the short term. However, in the longer term, the coping strategies cause dysfunction and prevent us from getting better and improving our lives. These are not set in stone and we can create new habits that build wellness and resilience, which support us create a better life.
Mindful practice and meditation is one way of realising this experience, gaining insight into the difference between the sensations of pain and the thoughts that we have about the pain. Learning how to observe our thoughts, feelings and experiences enables us to cut through the sense of self, be in touch with reality (the present and only moment), let go and liberate ourselves from on-going suffering.
Buddhism talks about the two arrows. The first arrow is the pain that you feel. The second arrow is the suffering caused by the way you are thinking about your pain. Learning about the knowing the difference is important.
There is much to be hopeful for. For some years I have focused on helping people gain insight into their suffering and what they can do to move onward. Compared to 10 years ago, people are much more open to what we know about pain rather than being dominated by limited beliefs and social conditioning that we are all subject to in unique ways from childhood through. The research and study of pain continues to reveal much that we can distill into practical tools for day to day use. Improving lives is a learning process, taking on new habits to build momentum. Some of the skills initially surprise people, but soon enough they realise their potency in changing our experiences sustainably.
What does this mean? Put simply, pain is experienced by the person and not by the bodily location or part. In the case of back pain for example, it is not the back that is in pain. Instead it is the person who experiences back pain. This is no different to thirst in as much as the mouth does not experience thirst and head off to get a drink. The person does.
Now, what does ‘whole’ refer to? Again this is a key point of understanding. There are no separations. We are whole. The lived experience, what it is like to be ‘you’ in any given moment, emerges from the meeting of thoughts, perceptions and actions (enactivism).
One of the reasons why considering the whole person is so important is because it is the person that we treat. Pain is poorly related to tissue state, but it is well related to the state of the person. It was Oliver Sacks, the famous neurologist and writer, who stated that it is as much about the person as the condition. He was a man of great compassion and insight.
Conditions in name are lists of signs and symptoms. They are brought to life by the whole person in a unique way with all his or her thoughts, feelings, emotions, expectations, hopes, priors and beliefs, each in a different environment and context. A huge number of variables exist within every unfolding moment. Listening to the narrative illustrates this, which is why deep listening is important.
The model that best represents the whole is the biopsychosocial (BPS) model. Truly using this approach means that the biology, psychology and sociology of pain are considered, in relation to each other. It is in the middle of these overlapping dimensions that the person’s experience sits. This is what we seek to improve, the lived experience.
When we focus on the person and what they want to achieve in their life, we can design a programme that encourages and supports them to take steps in that direction each day. This can only be achieved by thinking about the whole person.
This may sound obvious but I think that we need this to be loud and clear. There are still too many people who say that they feel that they are not believed when they describe their experience.
I started my career in healthcare in ’93 training to be a registered general nurse. My fascination with pain began in the theatre recovery rooms when I noticed how propel responded so differently. The ‘size’ of the operation did not seem to matter. How the person was, in other words their state, really did.
Studying pain, I came across a quote from McCaffery (1968). She stated that it was ‘…whatever the experiencing person says it is, existing whenever the experiencing person says it does.’
This has ever-stuck with me. Everyone behaves in such a way as to meet their needs. When a person describes their pain experience, these are not merely words. It is an expression of need. In chronic pain, we must ask why is pain a predominant feature of this person’s life? What are the needs that must be met for the suffering to ease?
To understand this, the person must be free to express their lived experience from the first person perspective. As clinicians and therapists, we can only gain insight through deep listening within a supportive, encouraging and compassionate environment.
Deep listening involves being present and paying full attention to the person. Not only do we hear their words but we see how they are embodied and delivered. Getting to know our own biases and beliefs allows us to let these go so that there is no ‘filter’, just pure awareness. This begins the therapeutic process.
This is the hashtag to look out for! Please share and let’s get the wheels turning
Less than a week to go until the Brighton Marathon 2019 for CRPS UK and UP. It is going quickly!
This week is just easy movement: simple, short, easy runs, lots of ‘motion is lotion’ (a phrase I use with people day in, day out), fuelling and other relaxing things.
Each day until the marathon on Sunday, I will share a Pain Point. After all, UP is all about raising the awareness of the massive problem of pain and delivering the right messages based on what we really know about pain to society. The way we deal with pain, especially chronic pain, must be revised in line with new knowledge. At the moment, the bulk of the understanding remains in theory — in academic and research circles. We need this to be ‘out there’, with the people.
‘The people’ includes everyone. Those millions and millions of sufferers and those providing care. The basic problem is the misunderstanding of pain, which results in the wrong messages and treatments and the poor outcomes that we see. The numbers are not improving in our society that we can argue is a suffering society, with chronic pain being a major symptom. More on this later.
So, what can you do? Share these blogs and messages within your circle of friends and colleagues and let’s drive this forwards. We can reduce suffering in society but we must do it together, ‘bottom up’. People demanding that they are give the right information about pain and what they CAN do to move forward with their lives.
You can support our work here >> Richmond’s sponsorship page for the Brighton Marathon: click here
Come along to the free Understand Pain Talk on May 22nd >> tickets here
And the fun quiz on the evening of May 22nd in Surbiton at Wags N Tales >> tickets here
Thanks for your support and helping to build a better society by easing pain and suffering!
Less than 2 weeks before the Brighton Marathon (Sunday 14th April), which means tapering. The last road marathon was the London in 2017, and I didn’t get the final preparation right. However, it’s all about learning and improving. At that stage I thought that long distance running did not require much planning…
I completed the final 20 + miler on Saturday and it felt great. It is Monday and I am pretty much recovered — the 175 stairs upward at Russell Square this morning left me with a little burn deep in the calf muscles. They need some attention: stretching, rubbing, easy contractions.
Initially I had thought about running Brighton and then next day doing 40k in readiness for the ultras in May and July. Taking advice, I scrapped that idea, however I need to get back to the mileage and some hills soon after the marathon. There is only a few weeks before the trot around the Isle of Wight: 106k over two days.
There is a different feel to the (road) marathon and the (off road) ultras. The obvious contrasts are the distance and the terrain, but for me it’s the whole vibe of trail running that energises me. There’s no great talk of times, instead completion, camaraderie and countryside.
So, the next couple of weeks will be light runs, getting lighter, lots of resting, stretching, meditating and fuelling up.
Don’t forget the quiz on May 22nd in Surbiton >> tickets here
And the Free Understand Pain Talk also on May 22nd at The Groves Medical Centre, New Malden for people suffering chronic pain who want to understand their pain and move on to a better life. The workshops and talks are one of the ways that we intend to share the right messages about pain and what people can do to improve their lives. To scale this we need to continue to raise funds, the reason for the #upandrun series.
If you suffer chronic pain or know someone who does, you will realise the size of the problem, the mismatch of the needs of millions of people and what is offered. The misunderstanding of pain in society often leads to the wrong choices and treatments — frequently a narrow focus on the area that hurts rather than on the person. Pain is poorly related to tissue state. Pain is well related to the state of the person. Most people realise this when we reflect on the changes in state and how the sensations of pain vary. It’s experiential rather than a concept.
The bottom line is that pain can and does change, starting with understanding it. Many people often realise an immediate reduction in suffering when they blend what we know about pain with their own narrative and experience. The knowledge of how the brain processes information, how we embody our thoughts, feelings and actions, and the emergence of conscious perceptions are all delivering great insights for us to distill into practical ways of improving our lives.
You can support our work here by sponsoring me…thanks!
“One woman attempts to articulate her experience of physical pain. Pain with no apparent cause. Also, she’s met someone, and they want to make this work. Words and an original sound score combine to create an explosive dialogue about love and perception. An experiment in how we talk about pain – and if we ever do that in a way someone else can understand.” China Plate
To briefly set the scene, this is a one-woman show that attempts the most challenging of tasks, to communicate pain. For many years, I have listened to people as they try to describe their pain, providing an open forum for them to use their own words, descriptions and illustrations. Of course, none fully capture the lived experience and so we must acknowledge this limitation whilst absolutely validating what the person says. Carefully documenting the language, phrases and comparisons, we must treat the narrative with care and compassion, listening deeply and equally observing how the words are delivered—gestures, facial expressions and subtle posturing.
And so, The Shape of Pain seeks, in an experiential manner, to get over to the audience what it is like to be in pain of a chronic nature as a feature of complex regional pain syndrome (CRPS). For those who are unsure, CRPS can be a painful condition of an extreme nature. There are other signs and symptom as well, which out of necessity define it. There are many painful problems and we must be able to differentiate to deepen our understanding through enquiry. The Budapest Criteria set out to do just that.
For me, it was a remarkable performance by Hannah McPake, delivering the narrative with authentic emotion, seeking to engage the people in the room. I am not a theatre critic so I can only comment on the technical aspects as an amateur, so I will stop there. However, as a clinician with a purpose to drive social change with regards chronic pain, and as a member of the audience, I was somewhat torn between the two. Flitting in my (embodied) mind, just as when we were invited to explore our perception of the Necker cube, I was critically appraising the way pain was being described, then drawn to the sensory experience of being present and back again.
In a conversation afterwards with some of the people who had watched the play, there was a feeling that we had definitely had an experience. You are not simply sitting and watching. You are absorbed by force—the sounds, the stage, the lights, the performance, and the projection of the script on the panels, which to me represented the imprisonment that some perceive and describe as their sense of agency is seemingly squeezed from them. In the discussion group, we all appeared to subscribe to the idea of pain having a shape. Job done!
Knowing that people suffering with particular sensitivity, and that is not just those with CRPS, will react protectively as their brain predicts a possible danger, means that the play would likely be provocative of pain. This point is made clearly in the script, which you can purchase, and a reason for an actor playing the part because of the effects of the words. Many people have told me, usually when prompted, that watching someone move, thinking about movement, certain smells, sounds and other ‘stimuli’ bring on the pain. When you understand pain, you know why this happens and how very real it is, together with changes in the sense of size of the limb, perception of the world and the sense of self.
Chronic pain is the number one global health burden. There are huge financial costs for society to bear, and immeasurable suffering for individuals. With the numbers of people affected by what we can safely say is a public health issue of major concern, you would expect a play such as The Shape of Pain to be sold out in a sizeable theatre as society tries to gain a grip on the problem. The question at large is why, with the costs in the billions each year and the impact on social function, is there so little accurate and impacting coverage? Most articles describe pain in the wrong way, the ‘old way’, which is distinctly unhelpful at best, and at worst keeps people thinking the wrong way. At the moment I have no answer to that, but instead focus energies upon delivering the right messages and the latest understanding to those in need.
The Shape of Pain is a significant contributor to the narrative of the most impacting of pains. A main feature of the tale is relationships. That of the person embodying the pain with the pain, the person in pain with a loved partner, the person in pain with the audience, and all of these vice versa. Undoubtedly, with pain lurking and then dominating ‘me’, there is impact on relationships. We are social creatures and relationships are important for our health, whilst also being the source of great suffering if we are not careful and nurturing. It can be more challenging to nourish a relationship if you are suffering pain persistently, as the Shape demonstrates frankly, but equally one can gain strength.
I will not capture all the angles within this short blog. Yet I hope to transmit several key messages of hope whilst fully applauding the team behind this play. They have created a brilliant piece of intimate theatre in which you cannot fail to feel deeply engaged as you run from emotion to emotion until the rather disquieting, darkened end, which is wholly appropriate. However, in a selfish way, I am pleased that the venue is smallish and intimate, because you feel so much more ‘in the room’ with the character.
On hope, there has been great advance in our understanding of pain, primarily from the getting together of neuroscientists and philosophers. This has resulted in better questions, with new insights for answers that are most helpful in describing pain to people so that they can give meaning to their lived experience. From there, this understanding informs many practices and tools that can be used to manage the painful moments, and overall seek to improve one’s life with a clear direction and steps to take. We are designed to change, impermanence making life viable, with each moment unfolding as fresh and new. This in mind, we can choose an approach, establish our purpose and pursue it in the best way that we can.
Here are 5 facts about pain (there are many more):
Pain (a subjective feeling state) and injury (objectively observable and measurable) are not the same and they are not well related
Pain is part of the way we protect ourselves
There is no pain centre in the brain. And there are no pain signals or pain chemicals. We have systems that have a role in protection and survival — e.g./ nervous system, sensorimotor system, immune system
Pain is an inferred state that motivates us to take action to address a need in our body or our world
Chronic pain does not ‘start’ at 3 months. The reasons why someone experiences on-going pain are more to do with prior life experiences of protection, genetics, early uncontrolled pain at the time of the incident and perhaps gender. There are and will be many more factors.
A brief summary of the modern approach to chronic pain
As I have said, the first step to successfully managing pain moments and carving a new way forward, is to understand your pain. This is how any programme should begin, with practical knowledge and ‘know-how’. To get results, we have to shift our thinking and approach as much as using the new and necessary practical tools and actions each day. This does not mean ‘you’ have to change as a person. Instead, you are encouraged to use your existing strengths and successful styles (you will have had many successes in life, overcoming challenges) to focus on your desired outcome and the steps to take.
There are specific exercises that need to be practiced in a dedicated manner, just like learning a musical instrument, general principles to follow to gradually engage with chosen and loved activities (getting into flow), and thinking tools to focus, create calm and build wellness, our greatest buffer to life’s ups and downs. The Pain Coach Programme contains all of these components together with many other tools and practices to draw upon to embody and live a meaningful life. There is not any single practice, instead an approach that embraces what we know about being a conscious human being.
Managing the painful moments with increasing skill transforms these episodes into opportunities to head in the chosen direction. Like learning to sail a boat, we learn a great deal when the waters get choppy, and we may even capsize! But then we can focus upon rolling the boat over again and setting sail towards that desired outcome. This may happen over and over, but we can choose an approach steeped in doing our very best as we seek to master ourselves. The principles of mastery certainly apply here. In facing these challenging moments as they arise, we create new habits, replacing those that do not work, but always in line with what we want to achieve. Stringing these together with the skills of being well and specific training, we can build a foundation of understanding, compassion (especially self), and know-how that can be built upon.
This is truly an exciting time as our learning gathers pace. My role and purpose is to be a conduit and distill the great work being done by many across the globe, into tangible and practical tools that each and every one of us can use to get the best results.
The Shape of Pain is on now at The Battersea Arts Centre (where I had some delicious potato wedges in the cafe!) until 10th March. If you are interested in pain or dramatic theatre or both, this is definitely worthwhile seeing. Note though, if you are a pain sufferer, it may be evocative for some of the reasons outlined above. In knowing this though, you may choose to go along for the ride.
For further information, contact me at firstname.lastname@example.org
On Monday I will be delivering an Understand Pain Workshop in Newport. This is one of the UP social initiatives, whereby when I run a Pain Coach Workshop for clinicians and other professionals, I the run one for the people locally for free. It is a 1 for 1 model.
Both the workshops and my clinical work is informed by the latest thinking in pain science and associated fields, delivering the pinnacle of understanding in a practical way. As with any problem, when we understand it, it is no longer a problem but something we must transform using tools that work. As an example, last week I spent 3 days in the company of some of the greatest contemporary thinkers about consciousness and life. Pain is arguably the best example of a conscious experience, and hence understanding this is a key aspect of understanding pain. For those of you who are interested, this included Dan Dennett, Karl Friston, Andy Clark and Anil Seth. In the room though, were many brilliant brains (whole people!).
The basis of a workshop is that people leave with practical skills and a working knowledge of pain so that they can go about implementing and integrating these into their life. I am an avid believer in living life as a main purpose. What I mean by this is that many people suffering chronic health and pain will put their lives on hold and await a change. The science and I argue that the way to get back to living, it to actually get out there and live. Of course there are ways to do this and the purpose of the workshop is to show people how they can; emphasis always on the word ‘can’.
It is worth noting that the Newport workshop (call 01633 820321) is for anyone suffering chronic pain. There are also specific workshops for conditions, for example complex regional pain syndrome (CRPS). There is a CRPS workshop on Tuesday in Bath — see here
You can keep up to date on events and read blogs and tips by following me on Facebook (click on the ‘like’ button), Twitter and signing up to my blog here.
Whether you are a clinician who works with people in pain, a professional such as a lawyer or case manager, a patient or carer, I hope to see you soon!