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

CRPS specific Pain Coach Workshop for people with the condition and their carers

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The next CRPS specific Pain Coach Workshop is coming up in Bath — link at the bottom for tickets (free). We had great feedback from the last workshop, but took note of people’s comments and extended the session. This one is longer so we can really tuck into some of the practices, and have the experience together.

The Workshop is by design a positive experience. We very much focus on what we can do and the choices we can make to lead the best life.

Together with specific practices that are important to address CRPS (and other painful problems), we will be looking at the skills that are known to be key for a healthy life. These skills are the best buffer for life’s challenges and hence play a foundation role in overcoming pain. And that is what we are seeking to do. Not ‘managing’ or ‘coping’, instead overcoming and moving to a new level.

The final part of the session is about how we can implement and integrate the practices into our life so that you can make a plan that you can follow in your world and reality.

I hope to see you there!

Click here for details and tickets

Pain Coach Workshops ~ supporting the next generation of therapists and clinicians

A week ago we had another Pain Coach Workshop. This time in Wilmslow, near Manchester. A great spot with some excellent local cafes. I do love a cafe.

Regular readers will be familiar with the UP story, the UP vision and how we are supporting the next generation of clinicians and therapists by providing two sponsored places for local undergraduates.

Everyone who attends the Pain Coach Workshop brings immense value to the day. Purposely a small group to create a positive dynamic, the team all add their experience and views. In particular I enjoy hearing from the current undergraduates–the openness, freshness and the beginner’s mind that I encourage is evident.

Sam and Emma from Salford University came to the Wilmslow workshop, and here is what Sam had to say:

Here’s what Sam had to say:

I have recently completed the Understanding Pain & Pain Coach Workshop lead by Richmond Stace. I am a physiotherapy student, and was lucky enough to receive a free place that Richmond provides to support local undergraduate development.
I became interested in this workshop due to my time out on placement, in which I was challenged with chronic pain patients. Many patients had been seen by numerous health professions prior to myself, and suffering with pain for many years. I did not feel equipped to deal with this patient group who had deeply established pain belief systems and pain embedded within their lives. I believe as a student, it is important to develop the ability and confidence in which you can challenge a patient’s understanding of pain.

I understood the approach of ‘Making Every Contact Count’ was vital to encourage physical activity and promote behaviour changes that lead to a healthier lifestyle. However, I now feel that the approach of ‘Making Every Contact Count’ needs to extend to pain coaching. The course has provided me with the tools to encourage patients to understand pain and most importantly, gain control over it. This is a skill that will need to be practiced, and as a student it is the perfect time to develop and create change in ourselves, in-order to create change for our patients.

I thoroughly enjoyed this workshop, it was great to share the day with experienced physiotherapists and it was a fun learning experience. Richmond’s passion, values and drive is infectious and I cannot wait to graduate to develop my abilities to encourage, educate and enable change. A big thank you to Richmond for this great learning opportunity and I would encourage all physiotherapy students to attend!

The next Pain Coach Workshop is in Newport on Sat November ~ see here

Much more to come in the 2018!

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!!!!!

Ellen’s final blog before the 1/2 tomorrow

RP

Running Blog Take 3

10/09/2017

So this morning, after work, I got home and decided to go for a run. I felt good and knew I was going to aim for 5km and depending on how I felt when I got to the end of the 5km I might try to go further.

Unfortunately I did not come back with the same positivity that I left with. The first five minutes of the run was good however after that every time I stepped down on my left foot, it felt like someone was stabbing a sharp knife through my kneecap. I managed to run the 5km however came back crying. When I got back, both my mum and dad were around but I did not want to show to them that I had struggled so I just said I needed a minute and went up to my room. I had to strip off as my brace was too tight round my leg and then my running trousers were making my knee more sensitive. I managed to calm myself down enough to stop crying but just felt defeated, which then led on to me feeling like I had bitten off more than I could chew with signing up for the half marathon!

About 5 minutes later, my mum came up to check on me. I wiped the tears away but she could tell something was wrong! I could not help but break down, telling her my worries about not being able to complete the half marathon and letting all the people who have sponsored me down. For some reason the thought of my future life was also upsetting me.

Ever since I’ve had my CRPS I have always had goals to get to the end of. At 15 it was my GCSE’s. At 17 it was my A Level’s. At 20 it was finishing University. With all of these focuses, thinking about my long-term life never really happened but now at 22, in full time work, there is no end goal. This means its more about thinking of moving out, meeting someone, having children things like that and also knowing that I might be suffering with CRPS for the rest of my life. I know that life could be as good as any life I was going to have before CRPS but the thought of living with pain everyday for the rest of my life is still absolutely frightening and upsetting.

CRPS UK charity for complex regional pain syndrome

My mum has never really liked to talk about this aspect of the CRPS because no one wants to think of their child being in pain for all their life but today she listened then did what my mum is so amazing at. Distracting me, and pulling the real me back out! We chatted like mother and daughter do and started giggling and the pain finally subsided. Today was a bad run, but I am sure even Mo Farah has bad days!!

12/09/2017

This week really has not been good so far! After Sunday, I took it easy yesterday hoping not to make it worse. I hardly did anything all day but still had stabbing pain through my kneecap still. I went to bed at my normal time however could not get comfortable and so could not sleep. After an hour of laying in bed I gave in and took some painkillers. However even these didn’t work and so 30 minutes after I’d taken the ibuprofen, my knee flared up. It was a short one but where I was drained from all the pain during the day already, the flare up made me feel extremely lightheaded. Within 2 minutes of the flare up settling down, I had layed down and basically passed out. One wake up in the middle of the night and then I was up for work as normal this morning!

I wore my big metal brace all day to support my leg while I walked, which meant I could get through work and then also drive to my physio appointment. I do not like wearing the brace as it draws attention to my issue, which I cannot stand but what I cannot stand more is feeling sick because of having to take so many painkillers. Wearing the brace means I do not have to take pain killer throughout the day so it is the lesser of two evils! Luckily I do not loose my freedom anymore when it flares up as last year I got an automatic car, which means I can drive without using my left leg, and so means I do not suffer pain when driving anymore!

At physio I spoke to him about everything I had spoken to mum about on Sunday and he reminded me that each day is different and so I will never know what the future will hold so what is the point in worrying about it! With regards to the running he reminded me that a week ago I ran 7 miles. No one forced me, my determination did it so my determination will be what gets me round the half marathon! He told me that this last month before the run, needs to be more relaxed and I need to focus on getting myself to the start line, rather than the finish line! This gave me a boost and the confidence I needed to carry on running, just once my leg is 100% better!

UP understand pain

14/09/2017

So at the beginning of the week, dad told me he was not going to set up his own fundraising page, and instead he was going to ask all his friends to donate to my page and then he would match whatever I make! This morning he emailed the link to my fundraising page out to his friends and my goodness have I been overwhelmed by emails telling me how much people have sponsored me! The amounts keep getting bigger and bigger and my target of £500 had been doubled within a few hours and the sponsorships just keep on coming! Means I definitely cannot back out now because thinking of what that money can do within both CRPS UK and UP makes me jump for joy! Although think Dad is starting to regret saying he would match whatever I make!!

18/09/2017

So from a week after my last run tonight I finally felt strong enough to put my trainers on again and try to go out running! I had a vague aim of where I wanted to get to for my run but knowing how bad the last week had been I knew that setting a proper aim might make it worse so I just needed to go out and do my best. As I was getting ready my four-legged running partner, Cooper was staring at me, begging me to take him with me. Knowing the companionship, even from a dog, might make the run easier, I took him with me!

We both got into our rhythms and just kept on running. Cooper is really good because he quite happily just trots alongside me and does not get too distracted, which means I do not have to worry about keeping him on too tight a lead, which would affect my arms while running. What always amazes me about him is that if for some reason my normally breathing pattern while running gets disrupted he immediately looks up at me to check on me! He is a really good running partner as he can run exactly the same as me but also check on me!

We kept running and running and when we got back home, I had the biggest smile on my face as we managed to run 4 miles in 45 minutes! There was a little bit of pain but that seemed to be coming from the ill-fitting brace rather than my actual knee. With this in mind I have ordered a new support, which is more open so is not too tight and will not make my leg quite as hot while running! I cannot wait to get back out at the end of the week!

21/09/2017

I was expecting some backlash pain after my run on Monday but I felt nothing. In fact I felt better than ever! My new brace also arrived and I was desperate to try it out however today was gym day, so the running would have to wait! With it being so close to the run, my personal trainer thought it would be best to just work on stretching out my legs properly and working on general fitness. With having to have a week off, I thought I would be puffed out within 5 seconds of lifting a weight however surprisingly I was fitter than ever! I skipped the most I’d ever done, I lifted the largest weight I’d ever done and I did the best pull ups I’d ever done! I thought the week off would slow me down, however it seems it’s just made me stronger. I feel more ready than ever for my run, which is now on only 17 days away!!!

23/09/2017

I was desperate to try out my new brace and I felt I needed to try out running a long distance again. I decided I was going to try running a 10km although Dad is away so was worried I might struggle a bit without any company to keep me going. I had a plan of where I was going to go in my head however did not completely set the route as I never do, to reduce the risk of any pain. When I set out I just thought I would try my best, whether it would be small or long.

Every run I have previously done from home starts the same way, by going up a steep hill onto the main road I run along. Previously I have never been able to run all the way up this hill, normally get half way up before I start puffing however today I ran and ran and ran and then was at the top. Before I had even started the proper run I had the biggest smile on my face because I had managed to get up the hill! It gave me such a boost and so the main run began. I changed the route in my head as soon as I started, as I wanted to make sure I was as comfortable as possible. My first part of my run was only about 1km so I went slow and steady and used it as my warm up.

My new brace was incredible and so I had hardly any pain, which meant I got into my rhythm really quickly and still had the biggest smile on my face! It was getting warm but my breathing was under control so I was still feeling comfortable! I got to the point, which I originally decided would be turning around point as I was going to do, two laps but I was then worried if I turned around the pain would start so I carried on. I ran down a road that was very up and down but I was still running by the time I got home. I was so happy with myself however still wasn’t sure how long I had managed to do! I got my phone out to check and I had run 10km and felt like I could have kept going! It was hard but it was also such a boost!! I finished my run today, really excited for the actual thing!

29/09/2017

It’s been a quiet beginning of the week as I did not want to do too much with the race day getting closer and closer. However today is the turn of my last proper gym session before the real thing! The main focus was overall body strength and all was going well until the second round of dumbbell presses on my right side. As I pulled the weight up, the left hand side of my back too a big stab. I dropped the weight and sat down. I hate when my condition becomes obviously within a public place as it makes me so nervous, which then makes the pain worse. However my personal trainer was very good, letting me sort myself out before getting me to carry on but move onto something else, which would not be as irritating. We did lots of different backstretches, which dispersed the pain so I still walked out normally. I was so happy about this as I had also planned to go for another long run with Dad tomorrow and I really did not want to miss that, as I knew how important it was! I may not have worked out as hard as I wanted but I feel today was more of a success with the fact that even with some stabbing pain, I could carry on!

30/09/2017

Work went way too quickly this morning. My nerves about going out for my first ever 16km run was at its maximum. I went to meet Dad at the office and was so nervous I could not even speak to him; I just wanted to get going to see what I could do.

We set off both feeling good, except for a massive stitch that I had in the left side of my abdomen. The first 5km seemed to go so quickly. I think this was because for the first time I actually spoke to Dad while running. I’ve never done it before because I was always worried about disturbing my breathing. I’ve worked on my breathing rhythm so much that now it just comes naturally and I do not focus on it. This made me feel better about talking to Dad, and when I did start talking to him, it brought me straight away from any aches I had.

We ran pretty much all of the first 12km however as we started our last 4km loop, Dad began to suffer with some pain within his legs. This meant we did a mixture of walking and running but that was fine as my pain was starting to get worse so it also gave me a bit of a break! I am so determined to run this half marathon that even when I have been in agony on training, I do not stop and I do not say anything because I feel I can just keep going, even if that makes the pain worse. So actually Dad needing to stop was a bit of a benefit as it made me take a break and let my body settle a bit.

We made it to the last 1km and now Dad had to keep me going as my hip felt like it had completely dislocated. I was running, if you could call it that considering I was limping, all the way to the end! Even when Dad pulled up with cramp I continued to the end. I got into the office and thought I was dying, but then I looked over at Dad and he looked exactly the same as me so I felt a little better! Now I know I can run 16km, I feel a lot more confident about next week as now it is only the last 4km that will be new! I cannot believe in 8 days I will be running the real thing! It has come so quick but I am so excited for it now!

02/10/2017

So unfortunately the happiness and excitement of Saturday’s run was not long lived. After going to the cinema Saturday night, I suffered a flare up, which was a bit of a knock back. It has always been normal for me to be left in pain after the cinema so adding the pressure of the run on top of that, meant I was not surprised when it happened. People always think I am strange when I just accept the flare ups, but if I do not accept them, I cannot move on and get on with my life each day. That does not mean they do not still frustrate me and upset me every single time but I left myself feel those feelings then I carry on.

I carried on, on Sunday, doing my horse in the morning then going to work and although it was hard, my will power keeps me going. The afternoon was not so easy, the pain got worse so I knew it was time to ask for help. I asked someone to look after my horse and luckily I did as I then suffered a second flare up. Having double flare ups in the space of 24 hours does not tend to happen to me anymore so I try not to dwell on them but it is hard as you feel like you are being knocked down twice!! However once the second flare up was out the way the aching lifted a little, just enough that I could smile again.

I thought the last few days would make me more nervous for the run however all its done is make me be more realistic. I have just accepted that I will probably be in a lot of pain after my run if not suffer a flare up, but that’s okay because it would have been for a good reason and maybe just this once, the pain would be worth it.

04/10/2017

I agreed to go and see the personal trainer to discuss my nutrition for the last few days before the run and also to stretch myself out properly before the run. I never knew stretches could be so painful!! Everything ached and twinged as the personal trainer helped stretch me out. However afterwards I felt so good and loose. Felt like I could go run a marathon, which is luckily because I’m running half in 4 days!!

We spoke about the best things to eat on the day and to eat before hand and I was so glad he said I didn’t have to eat beetroot as every runner had told me that I needed to have a shot of concentrated beetroot on the start line, but I hate beetroot!! He said it might be an idea to have some jelly babies in my pocket during the run to give me an energy boost when I need it, however I then remembered that on my Duke of Edinburgh I ate jelly cubes and so that was it, I was taking jelly cubes to the run with me!

I cannot believe how quickly the run has come around. I am both excited for not only getting myself this far but also for the possibility of the actual day and also nervous about letting people down. People have been so generous donating to me and I really will put my best effort into running it on Sunday! Let’s hope I make it to the start line!

RS: I am sure you will! All the hard work has been done now — a very positive approach taken, inspiring many.

 

Helena’s story

An excellent story of achievement from Helena

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A story of courage, perseverance and a ‘can-do’ attitude to life

My name is Helena, I am 20 years old and from London.  I developed CRPS in my right leg as a result of a kayaking accident in 2013.  My CRPS deteriorated very rapidly and suddenly in February 2016 leaving me in a wheelchair.

I missed kayaking a lot and I was bored of being stuck in the house. So I started researching Paralympic sports which is when I came across para or adaptive rowing.  So in September I had a taster session at the Royal Docks, I enjoyed it so much that I was introduced to the Royal Dolphins and London Youth Rowing (LYR). The Royal Dolphins are a very small disability rowing group coached by LYR. Over the coming months my condition slowly started to improve and within a few  of months of starting rowing I was waking unaided although still in pain.

The Royal Dolphins compete in the Great River Race every year and I was quickly asked if I wanted to join the crew for this years race. I was in two minds my head was saying no my heart was saying yes. After deliberating the idea I said yes.

So on the 9th of September I completed the Great River Race. The race is London’s  river marathon and is 21.6miles down the Thames from Millwall Dock to Ham in Surrey.

We started at Greenwich  pier where our boat (called a Cutter) was docked.  The river was very rough and we were towed by our safety boat to near Millwall Dock, this is where we started our journey, passing a large ship which marked the start line. The bridge count began, there was 29 bridges between us and the finish.

The first big landmark was Tower Bridge and it was amazing to go under such a historic bridge. We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben.

Battersea Bridge marked the halfway mark and by this point my CRPS leg was starting to complain. I kept moving my leg trying to get comfortable. I was determined that this was not going to stop me, there was no way I was letting my crew down.  Knowing we were halfway the  adrenaline started pumping through my body and I had a burst of energy.

This burst of energy  got me all the way to Chiswick Bridge, we had been rained on and we were now starting to tire. My CRPS leg was going all kinds of colours, my foot was swelling slightly and my lower back was killing. We kept up the steady pace as we needed to get as close to Ham as we could before the tide changed.

Unfortunately the tide changed a few miles from the finish, the water all of a sudden felt heavy and we we were having to row harder to keep the boat moving. By this point the surroundings were very rural and there were not many people around.

There was a sigh of relief when we eventually went under Richmond Bridge, the last Bridge! We all came together and rowed the best we have ever done, over-taking several crews who had gone  out too fast. We could hear the tannoy at the finish party and the gun went, we had finished!

It was the hardest but most amazing thing I have ever done. It has only just sunk in what I achieved. If you are a CRPS sufferer reading this, if you take one thing from it, let it be this, you can do anything with CRPS, you’ve just got to adapt!

You can follow Helena on Twitter here and her blog here.

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