Next challenge: Race to the Stones

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For some time I have been eyeing up the idea of ultra running. Having spent the past few years training for and completing several marathons and half-marathons, the urge to take it onto another level overcame me. I booked myself a date with Race to the Stones.

An old friend completed the 100k run this year. I went down to collect him and watched the runners coming in. There was such a great vibe! Much like a mini-festival; relaxed, encouraging, inspirational and lots of smiles…in amongst some pain of course!

The course follows an ancient path. We will be running and walking in the footsteps of Vikings, Romans, dragons and Kings — not in fancy dress I hasten to add!

Journey from the Chilterns to the mystical North Wessex Downs past mighty iron age forts, ancient monuments and through some of Britain’s most stunning landscapes

As ever, the run will be for Understand Pain, #upandrun. You can keep an eye on progress and other running events here and on Twitter and Facebook and Instagram.

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Race to the Stone 2019

On we go!

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Beachy Head Marathon 2018

 

Pete and I

Sharing a purpose

Pete and I share a passion and a purpose. We discovered our shared purpose over a number of conversations at dinners and conferences. More recently Pete and I recorded our chats, ‘pain talking’ (see here, here and here) to share our thoughts. There will be more to come, much Moore!

Our purpose: to change the way people and society thinks about pain. Why? Read on…

Pete Moore and Richmond Stace Pain Toolkit and The Pain Coach
Richmond Stace (The Pain Coach) & Pete Moore (The Pain Toolkit)

Today Pete is giving the Sir Michael Bond lecture, an annual British Pain Society event. The talk is unsurprisingly titled: Pain self-management; first choice or last resort? Punchy and to the point, as is Pete. And this is what the pain world, which is in fact the whole world with pain being a ubiquitous experience owned by only the first person, needs to jolt the right actions.

Pete and I could be considered outspoken, disruptive and bringers of change. However, not everyone is comfortable with change. We meet resistance. Not so long ago I spoke to a large group of mainly doctors, presenting some of the latest thinking in pain. The feedback was a fascinating mix of love and hate. Clearly some were hankering after change, recognising that the current predominant model has failed. One who only had courage with his or her feedback form accused the thinking as snake oil. I would love that person to sit in front of the likes of Karl Friston, Andy Clark, Mick Thacker and try to run with that argument!

But this is the reality. We have clinicians practicing old ways that refuse to change their thinking. This is of great concern as the millions across the globe continue to suffer (needlessly) as a result of the misunderstandings of pain. The situation must change: this is the purpose of Pete and I.

Self-management and coaching

Pete has been working tirelessly to engage clinicians and pain sufferers. He shows them that self-management is the way forward using his own story and The Pain Toolkit. An important principle that we must all adhere to is that only the person can ease their own suffering.

Whilst there can be a role for medication and intervention when chosen with good reason and used wisely, the main thrust should always be the person’s understanding of pain and what they do themselves. As I say to each person I see, you are with you all the time so you must be able to coach yourself with clarity and calm to take the best actions.

To understand pain is always the start point. The true insight into the cause of one’s own suffering unlocks the door of potential. This is why Understand Pain exists as a means to deliver the knowledge, skills and know how to society. At UP we have the vision of a world that understands pain. This would mean a huge reduction in suffering, more money available for other social concerns, people would know what to think and do, and treatment would be about encouragement of wise actions by the person.

Getting the best of people

It is always the person who suffers pain (not the body part) and hence we must think about the person and their life. And this is why The Pain Toolkit and Pain Coaching are successful in encouraging and inspiring people to live as a means to managing and overcoming their pain. Waiting for the pain to go before getting back to living just does not work. There is only this moment to take action, right now. The future never comes, so if you are waiting, it will be a long one!

Pete Moore and Richmond Stace
Richmond Stace and Pete Moore

 

Coaching and specifically Pain Coaching seeks to get the best of the person by giving them practical and working knowledge of pain. The focus is upon the person’s picture of success and how we get there step by step. All too often people think that they must just cope, get by, live with it etc. Of course, if this is your best hope then this is all that will be achieved. This is not the fault of the people. It is the problem in society — pain is a social problem. When society changes its thinking, the actions will change. Pete and I: this is our work. And we will keep going, encouraging people to understand, to use tools and practices each day and to build momentum towards a better life.

Today Pete will speak frankly. He will be entertaining, because he is, but he will hit the mark with the fact that self-management is the key ingredient. Without this there is little chance of progress.

I am thrilled that Pete has this opportunity. He deserves the stage and will undoubtedly make an impact. I will try to get there early and get a front row seat! Pete, can I wear a Liverpool shirt?

Oh, and we also both love rock n roll….

Why keeping in touch with your body is important

Body painting

This is a short blog about why keeping touch with your body is important

The body, your body, is always there. It is always changing and updating, but in essence a constant feature of the present moment.

The mind however, goes off. It travels forward and back at a whim so it seems. But reality is only here and now, the rest is just in thought. However, each thought, each feeling, each sensation and each movement are all embodied. They are also embedded within a context, an environment and a society.  The mind simply cannot be considered in isolation.

This in mind so to speak, means that what we focus on governs how we feel. Our emotional state is a biological state, orientating us towards a particular experience, to meet a particular set of needs. What is interesting is that when we focus our attention on the feeling itself, if it is a state of pleasure or joy or any other positive feeling, it grows. When we focus on a negative feeling such as anxiety or anger, what happens? Well, you can either try it or wait until the end to discover the answer.

The whole person

Regular readers will be familiar with my writings on the whole person. In short, the premis is that it is always the person as a whole who has an experience. For example, I feel pain in my hand rather than my hand is in pain. The importance lies in the need to address the person to successfully address pain. As I tell people I see, the biology of pain (and there is nothing specific to pain) is largely not where you feel it.

To feel oneself then, requires a completeness. A wholeness that needs both body and mind to be in the same place at the same time. Only when the two are together as one are we truly present. In our world where we learn early to escape the body from horrible feelings, emotions and sensations, this can seem like the thing to do. We are encouraged to drink, smoke, take drugs, buy something new and distract. Except trying to avoid and escape results in on-going suffering instead of facing and transforming. We cannot escape suffering in life. It is part of life. But no-one teaches us how to suffer. To know how to suffer is to reduce the impact and overcome the cause(s) of one’s suffering.

A simple practice

One simple way to be whole, and to connect and re-engage with the body is with the body scan. This is where you pass your attention through your body from top to bottom. You notice without judgement, with acceptance of what is, and an openness to all experiences and sensations. In so doing, you are whole, which is the true person.

The awareness, or check-in as I sometimes call it, is a way to address our biological needs. Checking in, I am aware that I need to move, to stretch, to drink, to eat, to scratch, to go to the loo etc etc. Without this bodily awareness, I miss the cues and conscious feelings of need states. And to miss out on the basics can add up over time. Place stress on top and soon our bodily systems are in survive mode, increasingly interpreting sensory information as possibly dangerous. What do we feel then? Headaches, body wide pains, irritable bowel, fatigue, poor concentration, low mood, anxiety and more.

Make a commitment

So what can we do?

We can decide to commit to a route of wellness and practice certain skills each day to build. Without wellness life is even more of a challenge. Part of being well is being present and we can only do so with body and mind together. Each moment is made up of our perception, action and cognition. They are inseparable, yet each adding something distinct the the richness experience.

If you like, now, you can sit or lie and pass your attention through your body to see what is what. Remembering of course, impermanence. Things are always changing, otherwise life would not be possible. So notice the ever changing biology at work. You can spend a minute or a few minutes or an hour. That’s the beauty of checking in. It is easy, and you can do it anywhere, anytime.


This is one of many practices and tools from The Pain Coach Programme

Talking pain ~ video series

Together with Pete of The Pain Toolkit, I have been talking pain. This is a simple way of getting across the key messages about pain in bite-sized videos.

The first chat was based on the 5 question challenge when Pete asked me how I ‘got into pain’, my story in other words, and then what I say to people who are seeking the quick fix, the future of how we will deal with pain and the role of social media. Today we dug down deeper into dispelling the myth of the quick fix as an option.

In brief, overcoming pain is one of life’s challenges. Embracing this as a problem to solve by living one’s best life delivers many possibilities. This turns the traditional thinking, which has not worked (otherwise chronic pain would not be the No1 global health burden), on its head; i.e. we get back to living by living, not waiting for something to happen, or relying on hopes. Instead we follow a route of mastery, creating lasting and positive change, achieving results and maintaining a consistent course towards a desired outcome. This IS the model of success and we can apply this here, in addressing pain.

So, there is no quick fix, instead a route forwards where we fill our lives with the good stuff! We use our natural resources and strengths, and become resourceful. Everything you need is right there, and once you release yourself from the old, limiting beliefs and conditioned thinking (I can’t…I won’t….tomorrow etc etc.), you can start taking steps towards success. Is this a pain-free life? Does it mean being ‘happy’ all the time?

Pain is part of life. The pain you may be feeling has persisted and is not indicative of a tissue issue or pathology in many cases. Instead it is an on-going protect state as more and more contexts and situations generalise as being a threat — even though they are not. We have to actively re-train this, gain control over our mind rather than the mind controlling us, because once we decide to commit to consistent practices that build health, wellness and joy, they shift us into a different state, or chemistry. That is how we overcome pain. The more we focus on treating pain, the worse the outcomes. The more we focus on the person living well, the better the outcomes — for what we focus upon governs how we feel and where we put our energy. What do you want? Where are you going to pout your energy? Into a life full of joy? Or a life full of pain?

It sounds easy when you put it like that! Of course it is a challenge and there are many ups and downs. But you do not have to let that get in the way of you deciding to commit to a new path, one that you follow to gain wins and success in all areas of your life — again, because you decided to. How often do you feel happy, just because you can? Now you can use that as a daily practice!

So, onwards we go, as this is the only direction of travel. We build our ability to change state into that of excitement, determination, joy, love, compassion and all the many other states .We can get into such high energy states by moving, breathing, visualising, connecting and many other simple day to day practices. It merely takes the decision to do so, the development of a routine and practice, or repetitions, just like strengthening a . muscle.

More answered questions to come! You can email us your questions (painphysiolondon@gmail.com) or come to twitter and tweet @painphysio

In the meantime, enjoy!

For more information about the The Pain Coach Programme, click here

Talking pain with Pete

Pain Coach + Pain Toolkit getting together to deliver the RIGHT messages about chronic pain

This is the first of a series of conversations about pain. Pete’s 5 question challenge:

  • how did you get into pain?
  • what about people looking for a quick fix?
  • what questions should patients ask me?
  • is social media useful?
  • what is the future for pain management?

A series of chats coming soon. Enjoy!

Pain in Spain

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Keynote at the Congreso Fisio 2018

IX UMH Physiotherapy Congress 2018, Alicante

There were several remarkable things about the UMH Physiotherapy Congress in Alicante last week, which I will share below. Before though, I want to state that without doubt, the organisers created a meeting that universities around the globe should seek to emulate. This was a conference that was professionally co-ordinated, filled to the brim with great and varied content, smoothly run, and was attended by an enthusiastic, passionate, sizeable group of 420 professionals and students. The success emerged from the co-ordinated efforts of many individuals, in particular Sergio Hernández Sánchez, Ellana Mckerrell and Roser Bel-lan Roldán.

I was delighted to be asked to speak to over 400 people at the main conference and then run a Pain Coach Workshop for professionals. This was an opportunity to share some of the latest thinking about the global problem of pain, and ideas about how we can go about driving social change together. On reviewing the statistics, it appears that the chronic pain numbers are slightly lower in Spain compared to the rest of Europe (16.6% and 20% respectively). Despite the mild difference, this still represents a major public health issue that needs urgent attention, with the costs estimated at 1.5% of GDP.

“The pain in Spain is mainly on the plain”

This was a conference of the highest quality. The topics, the speakers, the logistics, and the atmosphere were second to none. And what is so remarkable is that the conference was planned, organised and run by the physiotherapy students from UMH. This was as professional as it could be, and therefore the Congreso was a great success as far as I was concerned.

The Pain Coach Workshop was an UP (Understand Pain Social Enterprise) offering, allowing me to work with twenty five professionals who were keen to build on their knowledge and skills for chronic pain. The participants kindly shared their experiences and insights about chronic pain in Spain, and together we worked through a ‘lite’ version of the Pain Coach day.

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Pain definitions from the 5 minute challenge

With a handful of English speakers, we had a fantastic translation team, who really made the workshop happen. They were brilliant as we got into the rhythm of exchanges. In the three hours we looked at the vehicle of coaching as a means to deliver skills and knowledge, together with always seeking to get the best from both the individual and the clinician. From there, we considered a range of practices including those that seek to build wellness, address sensorimotor adaptations, reduce threat and sensitivity and to encourage people to live their best lives, whatever their circumstances. The emphasis of the Pain Coach is upon realising the choices we have in life and how we make the best ones to achieve success and results. The philosophy that runs through the programme is based upon knowledge, wisdom, and compassion.

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Translation in action at The Pain Coach Workshop

This was an important trip for several reasons. Firstly to make new friends in Spain so that we can build upon the successes and create future events that benefit individuals and society. Secondly, we have identified a need that we can meet together with education, encouragement and enablement at both the undergraduate and professional levels. And thirdly, we can tap into the passion that was so clearly expressed in the opening ceremony by Roser and Sergio, to move forwards in a positive and productive way.

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For information about keynotes and Pain Coach Workshops, please contact us: painphysiolondon@gmail.com

The Shape of Pain ~ a show about the pain of CRPS and relationships

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“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):

  1. Pain (a subjective feeling state) and injury (objectively observable and measurable) are not the same and they are not well related
  2. Pain is part of the way we protect ourselves
  3. 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
  4. Pain is an inferred state that motivates us to take action to address a need in our body or our world
  5. 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 painphysiolondon@gmail.com

A story of learning

Funny colorful signpost to different countries around the world

This patient wanted to share her story to inspire others. She travelled to London from her country in Africa to find answers to her pain problem.

Overcoming a pain problem requires understanding that informs practices you use each day, through the day, whilst living life the best way you can. In other words, you may have parameters to work to right now, but these will grow as you develop and build wellness, together with the specific exercises and strategies you use to get better. It is a learning process. Nothing happens in isolation as we are all on a timeline with what is happening now impacting upon the next moment and so on.

Many people do not realise or actualise their potential. We have much more ‘say’ in what happens than is commonly thought. Understanding, awareness, patience and compassion are all key ingredients for gathering insight into what is really happening now, the best actions to take and how to carve out a way onwards that is meaningful.

This is the work of overcoming pain by addressing the needs in ourselves and our lives concurrent with building wellness (resilience, outlook, attention and generosity).

Here are her words:

Hi everyone, my story begun in October 2016. I woke up one morning partially ready to go to work and I noticed a slight pain in my butt, I thought nothing of it and went to work. The next day I was limping but I still ignored the pain because I had a lot of things to take care of at work. What would they do without me in the office? duh… absolutely nothing. The pain kept increasing and within a week I was paralyzed by pain and completely immobile. The pain was so severe in my left leg that moving any other part of my body (eyes and mouth excluded) caused excruciating pain, so I had to lie still. I still get emotional thinking about the day I was taken to the hospital, because the pain was so bad I had several blank moments I fought against because I didn’t want to faint and cause more injury. It was tough but we made it to the hospital eventually.

At first the doctors thought I was suffering sciatica but after a couple of days they saw that the medication did absolutely nothing for me except put me to sleep for long hours. So, I started a series of tests, blood tests, scans, x-rays and MRI all of which were very traumatizing because of the pain and the village it took to help me from one point to the other. Eventually I was diagnosed with transverse myelitis. It was a probable diagnosis, they still weren’t sure.

In the beginning of this whole situation I thought it was something that a pill and a day of rest would cure but as time went by and the pain kept increasing I thought death had come for me. yes, I did feel as if I was going to die but I wasn’t ready so I found myself soliloquizing continuously about my dreams and how I was looking forward to the future. I even remember getting upset for a moment at God for giving me all these dreams and then letting death stand in my doorway before I achieved any of those dreams. A whole day of both internal and external positive speech got me to the point of utter believe that no matter what happened I was going to live.

Weeks passed, the pain was more manageable but I was still bed ridden. For someone who is independent and very private; it was quite devastating to lean on people for every single thing. I mean I am extremely grateful for my mother, she was there from the beginning to the end but it was gut wrenching when I couldn’t sit on my own because my back muscles couldn’t hold me up, so I had to be held like a child or when I couldn’t even brush my teeth or feed myself or lay on the bed myself or bathe myself.  Like I said before, I am extremely grateful for everyone that took care of me but it did not change the fact that it was extremely difficult to see myself in that position; but as time went on I learned to see all the little things we all take for granted when we have complete health and accepting help became easier for me but not without the overflow of gratitude for all other things good. Indeed I learnt to be grateful for everything no matter how little, which was very important in my recovery journey.

Four months passed, I was better and using a walker to get around. I was discharged from the hospital but things did not progress further. I almost panicked wondering if I was ever going to walk on my own again but I didn’t allow myself enter that rabbit hole. Eventually my parents brought me to London for further medical treatment, to see if there was anything the doctors back home missed and after another round of tests and scans I was directed to a Rheumatologist and a Physiotherapists (Richmond Stace).

During my first meeting with Richmond Stace I quickly understood that this was not a physical fight; it was more mental than physical. “The fact that there is pain doesn’t mean that there is injury” he said, these words changed my life because from then on I started to try myself. I developed the courage to believe I could not just walk again but run and dance and do everything I loved to do before I became ill. Some days where extremely harder than others but my self- speech helped me through those days. If I had an emotional issue I could not overcome on my own, I spoke to Richmond about it and he would tell me what to do; it made me understand that I didn’t always have to internalize everything but since I’m the kind of person who doesn’t really like talking to others about my innermost thoughts I found a way that always helps and that is journaling. I don’t write every day but I write when I am battling something that won’t just go away; and it helps every single time.

The days went by, I kept doing my exercises and mental imaging, some days I would think I was getting better and others made it look as if I was going back to square one. I read a lot, everything I read was kind of like an expansion of the things that Richmond was teaching me and it was a wonderful blend. The time for us to go back home was near and I was able to take at most five painful steps a day. I remember the day my mother booked our tickets back home, she requested for assistance and it upset me so much because it made me feel as if I was not going to get better before we go back. I was going to go back home still using the walker and nothing was going to change but things did change. Two weeks before we went home, I got up one morning, looked at my walker which was always beside my bed and ignored it without realizing that I was ignoring the thing that helped me get around; I got up with very minimal pains, I walked to the sitting room and never looked back. I screamed for my mum and the moment she saw me walking with only two legs, she fell on the floor and began to cry. It was a very emotional day but all was not over.

I was walking by myself, every one including my doctors where very happy for me but what I did not realize was that I couldn’t jump back into my usual life. Richmond gave me exercises to do but I decided to take the exercises further and I tried to run a short distance. Guess what? I couldn’t run at all. I tried to jump and it was painful as hell. Walking around for more than an hour was so painful I felt like using a walker again. I got very upset because I felt that I was going to look healthy and not be completely healthy. I was still going to need a wheelchair at the airport, look for the elevator or escalator wherever I went. I was so upset that I cried for a whole hour in the bathroom and when I was done I cleaned my tears and did the exercises Richmond told me to do in the first place and I haven’t stopped since.

So, I have come to the end of this long story and these are the lessons I have learnt so far.

1) In all things give thanks

2) Help is good, no man is an island. Accept help and be grateful for it

3) Read, knowledge is power

4) Meditate, it is the best medicine

5) Visualize your health goal

6) Persevere

7) Do what your doctor says especially if your doctor is Richmond Stace

8) Laugh, laugh as hard as you can. It’s better to laugh than to cry

9) Never ask. “Why me?” and if you do, your answer should always be “because I am special and highly favoured”.

Am I able to run now? Nope, am I able to dance? Just a little but I can jump without pain and I can walk for three hours straight without pain. I am not there yet but is anyone ever “there”? and besides what is “there”? Where is “there” anyway? I have come to believe that this life is a journey and as long as I am happy in each moment and doing the things that will improve me then “there” for me is actually now. I hope this encourages you to keep pushing for something better.  Your life is your life, only you can do the things it takes to be better.

Signing out! Anonymous.

UP Workshop in society for society

Richmond Stace ~ Specialist Pain Physiotherapist & Pain Coach
Richmond Stace

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.

There are several avenues that I am pursuing to drive social change and a new understanding of pain: The Pain Coach Workshops for clinicians, Understand Pain Workshops for the people in society, and 2 free places for local undergraduates at each Pain Coach Workshop (see some recent comments by a student about the day).

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!).

Brilliant brains!

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!

RS

The final run ~ Ellen completes the 1/2 Marathon

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UP & CRPS UK Royal Parks 1/2 Marathon Team

The final run

This morning I woke up feeling like I was going to do an exam. Wondering if I had done enough practice in the last few weeks to enable me to perform on the day. I felt sick to my stomach, had hardly slept and just wanted to get to the start line so I could get it over and done with as soon as possible!

We left at 6am; I was layered up to the max not only with my running gear on but 2 jumpers and my thick jogging bottoms over the top, to keep my body warm and loose. Dad had made me swallow down some porridge with half a bottle of maple syrup in it to make it more bearable, before we left. That really did make me feel sick!

We jumped in the car and began the hour and a half journey. My nerves were getting worse so I started listening to my iPod music to try and settle myself down. Music has always been my go to thing to calm my nerves, even during flare-ups; singing to the music settles my breathing and brings me back to normality.  I was so tired and kept feeling my eyes drooping but I know sleeping before the run would be a bad idea as it would probably just make me more tired.

We arrived in London and I wish I could say my nerves had gone but they hadn’t. Not one bit. I took my 15 thousand layers off in the car and then we walked towards Hyde Park. We had no idea where we needed to be so the four of us probably looked like headless chickens! We got into the park and it was so much bigger than I thought! People were flooding in and I was feeling more and more intimidated by the minute. What had I got myself in for!!

Richmond and his wife arrived, so we got to see our t-shirts for the first time. It was so strange to see my name on a sponsored shirt! It was suddenly really real and I just needed to get to the start line. We said goodbye to mum, Tom and Cooper and headed off. We got ourselves into our start section, and then did the 30-minute wait till it was our turn to head over the line! Dad and I took some last minute selfies, looked at each other then started our gentle run over the big white start line! All I had to do was get back to this line, to finish!!

The route was even more beautiful than I imagined and having that many people shouting my name as I ran past made my legs just keep going without me even really thinking about it. About 20 minutes in a man was running next to Dad and noticed his shirt. He said “CRPS?” and Dad explained that we were raising money and that I had the condition myself and was still running it. He said he had a friend who was suffering with it in his back and he needed help, so Dad told him to speak to Richmond and then the man congratulated me for what I was doing! I did not think anyone there would actually know what we were running for as most people look at me blankly when I tell them about my CRPS so it was such a positive boost that not only did someone actually know and understand the condition but that they also realised that this was not an easy challenge I had set myself! The issue with a invisible disorder is that no one can ever tell, day to day, unless it is obvious on that day so to everyone on that run I was normal but that day I didn’t want to be normal. I wanted everyone to see my condition and how hard I had worked and was trying to get round this run!

RP

The first 6 miles seemed to fly by and it felt like as soon as we had come out of Hyde Park we seemed to be going back into it. The pathway through the beginning of Hyde Park was full of people; I couldn’t help but smile at the support and music blaring either side of us. There was so many people, I could not recognise the individual faces however suddenly I could just understand recognisable voices shouting both mine and dad’s names to which Dad then pointed to the left hand side and there was Mum, Ben (my brother), Tom and Cooper. I didn’t want to look directly at them as I knew I looked like a tomato and was panting like a dog! But just hearing them made me smile ear to ear and I could feel my legs pushing through more and more.

We got to the 8 mile mark and we were still running although it was starting to get hard now. Both Dad and I were starting to breathe differently although I could tell that neither of us wanted to be the one to ask to stop first as that person would then feel like they were letting the other person down! There were some slight hills but nothing as bad as what we have done at home so the hills weren’t too bad it was just the general ache in the whole body that was starting to slow us down. Dad suddenly stopped so I did too, and if I am honest I was relieved, I was in agony but I knew I would not stop if Dad kept running. The walk break allowed both of us to catch our breath but it also made the pain within my legs become more intense. This meant that when we started running again my legs hurt twice as much as before. But I just kept setting little goals for myself so I just had to get to that tree and then when I got there, I would set a new one.

This method worked for a while however then the CRPS started in my left hip and I was really struggling. In my head I was just thinking “I can’t do this, its too much” but no matter how much I thought this, my legs just did not stop running. We got to the 10 mile mark and Dad said we would just keep doing a mixture of both running and walking up to the 12 mile point. Dad was suffering with terrible cramp by this point and my hip felt like it was going to pop out of the socket any second. More and more people around us were walking too but everyone was so determined to keep going to the end! I have never had a 2 mile run feel that long before but today it felt like it was never going to end, like one of those impossible mazes you cannot get out of!

UP understand pain

We eventually made it to the 12 mile mark and at this point, the walking was more painful than the running for me however for dad it was the opposite because of his cramp! So it then worked out that while Dad was pace walking, I was jogging beside him at the same pace and that is how we got through the final mile. As we finished that final mile, we were on the straight path in Hyde Park and we could see the finish. It was so close but considering the pace we were going it was still a way away. But slowly we got past the 800m mark. Then the 600m mark. As we went over the 400m mark Dad began to run again, and I suddenly felt my legs kick into a new gear. Very suddenly the finish line was right in front of us and Dad grabbed my hand. I could feel the tears coming up into my eyes. As we came over the finish line, hand in hand, together as we had started I burst into tears and fell into Dad. We had actually done it.

6 months ago when I agreed to do this I never actually thought I would make it to the end. Until I felt that feeling of getting over the finish line, it had always completely felt like a dream! I was so proud and happy my dad agreed to do it with me as I knew I would never have got round it without him. He really is my hero.

We got our medals, banana’s and free water before trying to make our way out through the crowd to find everyone. We knew Richmond would probably have finished already but we were not sure about Jo. We eventually caught up with Mum and everyone and once again I cried as soon as I saw Mum (I am blaming the tiredness for this!!) and just felt like I wanted to collapse on the floor. We caught up about it then found out that Jo had just finished so we decided to wait till they got back before we left. I sat on the floor and stretched my legs out however I struggled to get back up so had to get Tom to lift me back up! Although my body felt tired, I didn’t feel physically tired, surprisingly I felt okay! Everyone finally was all back so once we had all caught up we headed back home, with our branded hoodies, wooden medals and pride beaming from us.

CRPS UK charity for complex regional pain syndrome

6 years ago I never would have even contemplated doing something like this let alone actually do it. I am a very different person to 6 years okay, some things for the worse and some things for the better. My determination to prove people and myself wrong about my condition is definitely something for the better. Today made me feel more normal than the average person as not many people are able to say they have completed a half marathon but now I can and if anything, it has made me want to do more. Maybe not another half marathon for a while but who knows what will happen in the future so why not enjoy life to the full now. Today I am proud of where I have come in the last 6 years, and hopefully in another 6 years time I will be even prouder.

The final thing I want to say is a huge thank you to everyone who sponsored me, to everyone that has supported me and wished me luck and of course to my amazing family, especially Dad. Everyone was hesitant at first about me doing it however I hope I have proved to them that I am a lot stronger than I look. The amount I have managed to raise is amazing and will do such amazing things to help others not as lucky as me. So a huge THANK YOU goes out to everyone and my last piece of advice will be that if there is anything you have ever thought of doing but think you cant, just do it because trust me you will not regret it!!!!!