This may sound obvious but I think that we need this to be loud and clear. There are still too many people who say that they feel that they are not believed when they describe their experience.
I started my career in healthcare in ’93 training to be a registered general nurse. My fascination with pain began in the theatre recovery rooms when I noticed how propel responded so differently. The ‘size’ of the operation did not seem to matter. How the person was, in other words their state, really did.
Studying pain, I came across a quote from McCaffery (1968). She stated that it was ‘…whatever the experiencing person says it is, existing whenever the experiencing person says it does.’
This has ever-stuck with me. Everyone behaves in such a way as to meet their needs. When a person describes their pain experience, these are not merely words. It is an expression of need. In chronic pain, we must ask why is pain a predominant feature of this person’s life? What are the needs that must be met for the suffering to ease?
To understand this, the person must be free to express their lived experience from the first person perspective. As clinicians and therapists, we can only gain insight through deep listening within a supportive, encouraging and compassionate environment.
Deep listening involves being present and paying full attention to the person. Not only do we hear their words but we see how they are embodied and delivered. Getting to know our own biases and beliefs allows us to let these go so that there is no ‘filter’, just pure awareness. This begins the therapeutic process.
This is the hashtag to look out for! Please share and let’s get the wheels turning
Less than a week to go until the Brighton Marathon 2019 for CRPS UK and UP. It is going quickly!
This week is just easy movement: simple, short, easy runs, lots of ‘motion is lotion’ (a phrase I use with people day in, day out), fuelling and other relaxing things.
Each day until the marathon on Sunday, I will share a Pain Point. After all, UP is all about raising the awareness of the massive problem of pain and delivering the right messages based on what we really know about pain to society. The way we deal with pain, especially chronic pain, must be revised in line with new knowledge. At the moment, the bulk of the understanding remains in theory — in academic and research circles. We need this to be ‘out there’, with the people.
‘The people’ includes everyone. Those millions and millions of sufferers and those providing care. The basic problem is the misunderstanding of pain, which results in the wrong messages and treatments and the poor outcomes that we see. The numbers are not improving in our society that we can argue is a suffering society, with chronic pain being a major symptom. More on this later.
So, what can you do? Share these blogs and messages within your circle of friends and colleagues and let’s drive this forwards. We can reduce suffering in society but we must do it together, ‘bottom up’. People demanding that they are give the right information about pain and what they CAN do to move forward with their lives.
You can support our work here >> Richmond’s sponsorship page for the Brighton Marathon: click here
Come along to the free Understand Pain Talk on May 22nd >> tickets here
And the fun quiz on the evening of May 22nd in Surbiton at Wags N Tales >> tickets here
Thanks for your support and helping to build a better society by easing pain and suffering!
Less than 2 weeks before the Brighton Marathon (Sunday 14th April), which means tapering. The last road marathon was the London in 2017, and I didn’t get the final preparation right. However, it’s all about learning and improving. At that stage I thought that long distance running did not require much planning…
I completed the final 20 + miler on Saturday and it felt great. It is Monday and I am pretty much recovered — the 175 stairs upward at Russell Square this morning left me with a little burn deep in the calf muscles. They need some attention: stretching, rubbing, easy contractions.
Initially I had thought about running Brighton and then next day doing 40k in readiness for the ultras in May and July. Taking advice, I scrapped that idea, however I need to get back to the mileage and some hills soon after the marathon. There is only a few weeks before the trot around the Isle of Wight: 106k over two days.
There is a different feel to the (road) marathon and the (off road) ultras. The obvious contrasts are the distance and the terrain, but for me it’s the whole vibe of trail running that energises me. There’s no great talk of times, instead completion, camaraderie and countryside.
So, the next couple of weeks will be light runs, getting lighter, lots of resting, stretching, meditating and fuelling up.
Don’t forget the quiz on May 22nd in Surbiton >> tickets here
And the Free Understand Pain Talk also on May 22nd at The Groves Medical Centre, New Malden for people suffering chronic pain who want to understand their pain and move on to a better life. The workshops and talks are one of the ways that we intend to share the right messages about pain and what people can do to improve their lives. To scale this we need to continue to raise funds, the reason for the #upandrun series.
If you suffer chronic pain or know someone who does, you will realise the size of the problem, the mismatch of the needs of millions of people and what is offered. The misunderstanding of pain in society often leads to the wrong choices and treatments — frequently a narrow focus on the area that hurts rather than on the person. Pain is poorly related to tissue state. Pain is well related to the state of the person. Most people realise this when we reflect on the changes in state and how the sensations of pain vary. It’s experiential rather than a concept.
The bottom line is that pain can and does change, starting with understanding it. Many people often realise an immediate reduction in suffering when they blend what we know about pain with their own narrative and experience. The knowledge of how the brain processes information, how we embody our thoughts, feelings and actions, and the emergence of conscious perceptions are all delivering great insights for us to distill into practical ways of improving our lives.
You can support our work here by sponsoring me…thanks!
The Understand Pain Talks and Workshops are our way of getting out into communities and listening to people: the voices of society. A suffering society. At UP, our purpose is to contribute to society by showing people practical ways of reducing their suffering by living their best lives.
Understand pain and move on to live a fulfilling life
On Wednesday 22nd May, Richmond will be talking and running an UP workshop in New Malden.
This event is free, although we always welcome donations to fund our going work.
Touch wood things are going pretty well. Training is totalling 70-80 km per week with 1-2 longer runs, interspersed with shorter dashes and trundles. As a trainer friend said to me once, ‘Just get to the start line without an injury and you’ll be ok’. There is some truth in this of course, but with the Brighton Marathon coming up soon, followed by the two ultras in May and July, the mileage is key.
If you’re interested in running, the following section outlines my plan. Feel free to skip on!
#upandrun ~ hashtag on Twitter to follow and tweet
Last week I set myself a plan to run 1 x 30 km and 4 x 10 km, totalling 70 km. It felt good and was easily slotted into the working week. This week I am practicing two longer runs back to back and will continue with this trend. Today was just over 22 km and tomorrow I will do a minimum of 30 km on slightly tired legs. Either side will be a few 10 km runs when I try to push the pace.
There are 5 weeks until the Brighton Marathon (Sun 14th April). The last week or so will be tapering and fuelling. Prior experience of ‘the week before’ tells me that I need a good plan. This includes plenty of mindful practice, imagery, easy movements, eating well and rest. I have found it to be a twitchy time with a unique restlessness of mind-body. This will be a good test.
Soon afterwards comes the Isle of Wight Challenge. There will be a few weeks of continued training with back to back longer runs and again the tapering a week or two before the 2-day event at the start of May. A longer gap before Race To The Stones (July) means resuming the mileage in warmer weather.
One of the pluses of these ultras is the scenery. I have been to the Isle of Wight and enjoyed the spectacular views from certain well known spots. The Challenge allows for the experience of the complete tour! That excites me. As does the route from The Chilterns, across the top of the North Wessex Downs, along the ancient path–5000 years!
The Brighton Marathon #upandrun is a joint project, UP and CRPS UK. The money we raise through sponsorship, the quiz night (details soon), auction and raffle will support our on-going work to make a contribution to people’s lives and to encourage society to revise the understanding of pain.
Further, look out for the run of UP workshops. The aim is to offer these across the UK if we can raise sufficient funds. You can support us << here >> . If you suffer chronic pain or know someone who does, you’ll understand the importance of this project.
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.
The sun is not up yet, but we are. As ever, you seem to be waiting for the day, and then it is upon you.
We arrived in Eastbourne last night, welcomed by the most enormous moon as we followed the coastal road, Beachy Head on the right in the dark. In places I had to drop down to third gear to climb the hill, thinking about how we would be running those very same hills in just over 12 hours.
I am fortunate that a old pal has done the Beachy Head Marathon before. He also introduced me to a fellow runner from his club who has done it ‘5 or 6 times’. Casual. I would definitely remember how many times I had done it! So it can’t be a big deal; right? I was invited to a 20k warm up, which I politely declined. 44 is enough today thanks. The next piece of advice was gold: at the start, walk until you hear the bagpipes and then start running. This was followed with, yes, the first hill is a bastard. Righty ho!
Time to climb into the kit and grab some brekkie. There’s always something special about putting on the shirt, and representing something far bigger than oneself. You remember that the run is representative of a huge need in society and is one more step forward in raising awareness.
Look out for the pics on the way round, and maybe some live footage.
Following the Box Hill 20k trail run, I fancied something along the same lines. There’s definitely something about running out in nature, up and down hills, covering different terrains, and most of all the camaraderie.
So, on discovering that the Beachy Head Marathon takes place on my birthday in October, I felt compelled to sign up to give it a go. And then my wife Jo said she would do the 10K!
On the Beachy Head Marathon, my good friend and experienced marathoner said to me, its a completer, not a competer. I like that idea. Runners of distance get it. There’s a draw to discovering what you can achieve, how far you can go, what its like to be out there for hours and to find out where your strengths and weaknesses lie.
I have only been at this for a few years so would count myself as a novice in the endurance world. However, in this time I have learned a great deal about the rewards of perseverance and how they seamlessly spread into other arenas of life. No matter which step you are taking, there’s always another. But which direction do you choose?
At school we were made to run almost every day. At the time I resisted. Why Sir, I would ask (often). What’s the point of running? I used to think running was just about, well, running. I now have another perspective. My son asks me, why do you run, its boring, why don’t you cycle, its quicker. I understand his view. He is 13.
Running distances seems to suit the middle ages; see all the ultra runners birth dates. As someone said to me, why would you want to go running for hours when you are in your 20’s when you could be out with your friends doing __________ (fill in the gap).
Anyhow, October 27th it is, Beachy Head the place. A stunning backdrop, challenging hills (up and down — I’m not sure which I prefer; up I think!), and a purpose. The purpose as you know is to share a message in society: pain can and does change starting with understanding. Regular readers will be aware of the reasons why chronic pain is the number one global health burden. I am sure that most if not all of us can think of someone who suffers daily. Think about what that is like: the way pain seeps into every corner of someone’s life. It may be you.
There is a desperate need for change in thinking in society, which will underpin the demand for the right kind of approaches to pain. We are still blanketed by methods that do not offer a way forward. This only emerges from understanding and right action. UP is all about both understanding pain and using this knowledge for right and wise action to ease suffering by living.
I am very excited. I am excited about the BHM 2018 but also because UP is now registered and ready to go. The immediate plans include the website as an immediate place of contact for quality information about pain, booklets to order and distribute, a little book of pain and online courses. We have raised a good amount of money to fund these projects but of course we need to keep this going with future funding, donations and other opportunities that present themselves. Great times ahead as we pursue this purpose!
This year the UP running team has Ellen taking part in the Royal Parks 1/2 Marathon raising awareness and money for Understand Pain and CRPS UK. Ellen has CRPS yet has made remarkable progress in her life. I was thrilled when she agreed to take part and join the #UPandrun team!
Here is Ellen’s first blog about training.
Running Blog Take 1
Bio About Myself
Hello Reader! My name is Ellen Williams and this blog is about showing people my unordinary life. I have never been good at writing about myself so I will just start with some key facts:
Name: Ellen Jade Williams
Age: 22
Hair Colour: Blonde
Eye Colour: Green (with flecks of yellow in the middle)
Favourite Food: Strawberries
Favourite Animal: HORSES
Hobbies: Horse Riding (although having your own horses makes it more of a lifestyle than a hobby)
Occupation: Yard Manager (my own yard), Yard hand, Office Workers (for my parents business)
3 Qualities: shy, smiley & sensitive
Any unusual points: I have CRPS (Complex Regional Pain Syndrome) in the left side of my lower body.
My CRPS story is long and I do not want to bore you so again I shall give you the key facts. In April 2010 I went to South Africa with my school for a Sports Tour. It was the best holiday of my life but unfortunately I came home injured after some swelling appeared during one of my matches. I was told it was just some soft tissue bruising so I had a few weeks off then I carried on. The pain got worse and by the end of June I’d lost mobility in my left knee.
Finally I went to see a consultant who had me booked in for surgery 3 days later. I had a routine arthroscopy in my left knee, which found a piece of bone stuck in my knee joint which had also damaged some of the cartilage. That was sorted and I began to heal, just a little slower than normal.
By the December, I had deteriorated drastically and was back on crutches unable to do physio. January and February 2011 was full of pain, doctor appointments across the South of England, scans and uncertainty. 3rd March 2011, my consultant told my parents and I that I had this neurological disorder, which was incurable and may stay with me for the rest of my life. Confusion and sadness do not even begin to describe the feeling of that day.
I did physical physio for about two years to try and “flip the switch back”, as people describe it. This got me so far but it began to inhibit me more that it was helping me so I had to stop. After getting through my A levels and receiving more disappointing news from doctors, that there was nothing else they could do, my mum realised that I needed something else, something different! Which is where Richmond steps in. I have been seeing Richmond for over 4 years now and I could never write down in words how much I’ve learnt and improved in that time.
In the last 18 months I have finished university, moved back home and started full time work, which took its toll. After having it confirmed that the CRPS had spread into my left ankle I had back injections in January of this year. These once again, completely changed my life and as cliché as it sounds I feel like I have been given a second chance and I am determined not to waste this time as we are not sure how long it will last.
So when Richmond asked me if I would run the Royal Parks Half Marathon, I thought why not. It may not be easy but one quality I possess is determination. Determination to prove others wrong but also to prove to myself that I am “normal” but in my own way! Both my Dad and I are running jointly for UP and CRPS UK, which are two very important organisations for me so I hope this will show people that everyone has demons but how good your life is depends on how you decide to live your life. Please donate and spread the word of CRPS!
30th July 2017
After having some time off due to weather, birthday celebrations and pain I suddenly felt in the mood for a run, even after 6 hours of poo picking fields and mucking out stables! Although I was in the mood for a run, that does not mean I was not also nervous. I hadn’t been out for about a month and suffering such a big flare up the weekend before was always going to add more nerves.
A lot of my other runs I have put a point where I would turn around however today I didn’t. The issue with my disorder is that, people think I’m joking when I say “It has a mind of its own” but I’m really not! My CRPS and I may share a brain but we definitely do not think the same so I know I may think “I’ll aim for this point but will try to push further” but my CRPS will think “Right you said your going to that point, so I will give you pain if you go past it”. This is why today I decided to just run, whether I made it 1 mile or 10 miles it didn’t matter as long as I enjoyed the run.
After the first 10 minutes of agony (which always happens, like the CRPS is trying its hardest to stop me) I settled into my normal running beat and through the deep breathing, even managed to put a smile onto my bright red face!
31st July 2017
I felt so good about my run yesterday until I got out of bed this morning and realised that my hamstrings were as tight as a brand new elastic band! What made the pain worse was knowing that I was going to see the personal trainer tonight and that when I told him, he would make me stretch them out properly, which is more painful than just walking! This is the fourth time I’ve seen the personal trainer but it is already starting to make me enjoy being in a gym again.
After my diagnosis, I was told my best chance of “defeating” the CRPS was to do physical physio to break the on going loop that was theoretically happening in my head. I will always be grateful for my 18 months of physical physio because without
it I doubt I would be able to walk without pain, most days, right now however I should never have been told this method would “defeat” the CRPS. Living with CRPS is complicated and confusing as one minute you will look completely healthy but the next you can be on the floor unable to move but that does not mean it cannot be managed.
Although I am good at managing my CRPS now, self-consciousness about it is still something I struggle with. Even though it is a invisible disorder, I face a daily struggle of thinking everyone is staring at me because of it. This was made worse during my physical physio sessions when I really did have people staring at me because I was crying in pain. The more it happened the more uncomfortable I became in the gym, to the point where I didn’t step foot into a gym between stopping my physical physio and starting with the personal trainer, which is roughly about 4 years.
I was frightened about going back into the gym bit there are many differences between the two experiences. Firstly, in the new gym it is just the personal trainer and myself, which means I don’t need to worry about anyone “staring” because there is no one to stare. Secondly, now I am not trying to break a loop, I am trying to better myself as well as I can so if I do struggle with something, I can stop and try again at a later date and it doesn’t matter. Lastly, compared with 4 years ago I am able to deal and understand my pain a lot better, which means overall I can enjoy the experience more as the pain is not as bad.
Four years ago I never thought I would walk out of a gym, feeling good about myself again, but I do now and it gets better each time even if the hamstring pain gets worse!
1st August 2017
Well they say that things come in threes! Today it was the day for physio and I honestly do not know how I walked today because between the run and gym the last two days my leg muscles are screaming everytime I walk. My physio sessions are my time to show off any improvement I’ve made within a few weeks, no matter how small or silly it might seem to others (yes, I did actually jump up and down for joy the day I told my physio I could walk down the stairs normally again!) I’ve been seeing Richmond for 4 years now, but I continue to go because each time I do go I learn more about my disorder and how to manage it. The sessions also give me confidence to try things that I find difficult or painful again for example an exercise I had to stop doing last night at gym because my knee did not like the movement.
When I was doing the kettle bell swings last night, my knee felt like it was grinding together. So when the personal trainer commented on how well the knee was dealing with the movement I quickly replied “No it isn’t!” It frustrates me when I come across something that is difficult because I know there is nothing wrong with my knee but the pain is still real. I talk it through with Richmond and we come up with a few methods to help lessen the threat of the exercise, which means hopefully I should be able to carry out a kettle bell swing in a few weeks!
5th August 2017
So today rather than being physical myself, my family and I travelled up to London to watch the World Athletics Championships. It was amazing being back there again after the hype of 2012! We were lucky enough to see both Katarina Johnson-Thompson (my favourite athlete!!) and also Mr Usain Bolt himself! We had different seats for the morning and evening sessions however that did not seem to matter because where ever we were Katarina was near us, which made me extremely happy!
Watching her high jump was hard as her clear upset at coming out of her main event so early was obvious but that did not stop her. Watching her then win her 200m race was incredible and relatable. Anyone with chronic pain will know what it is like to face defeat in things that we were once good at but just because you’ve been defeated that day does not mean you’ll face that same defeat again the next day. Dealing with chronic pain daily could make it so easy to give up but if you do not pick yourself up and try again you will never know if you can do it again. You may be defeated once or 10 times but to show the strength to carry on that will show everyone that you will never be completely defeated by chronic pain.
I had to do this myself today when my pain dramatically increased while sitting in the seats. Big events like that is something I often struggle with now due to the small amount of room around the seats and the uncomfortableness of the seats but what also did not help today was the sun shining that was beaming down on my knee making it warm up and become sensitive.
I am used to the staring, slow walking and general irritance of my condition however I still worry about it affecting my family. I know my family love me no matter what but I am sure they still have the thoughts of “Oh for goodness sake, not again” when they have to deal with me like that. My mum having to help me to the bathroom. My brother having to let me grip onto his shoulders so that I can get up the stairs. My dad having to act as my crutch on the way to the car.
People often say to me “how can you keep going through the pain” but I think that is obvious isn’t it? If my family can deal with me like that, surely the least the deserve is for me to try. I have previously said before that the one piece of advice I would give to a new CRPS sufferer is that even if you feel you cannot try for yourself, try for your family because they will find it as hard as you are, if not harder! This advice is still valid to this day and is what I will live by for the rest of my life.
7th August 2017
So after the pain of Saturday and working on my feet all day yesterday, it was no surprise that I was still suffering with some pain throughout today. It was mainly within the top of my back and in my ankle, which makes walking and just general
movement of my upper body difficult. Luckily I work in an office on a Monday, so my work was not affected but I wanted to go for a run.
I went back and forth as to whether I should go or not because of the pain as the last thing I wanted was to make the pain last another day bur I got home with the thought of all I can do is try, whether I do 30 seconds or 30 minutes that was going to be my best because I was still trying! Well I went out and carried on running until I felt I couldn’t run any further.
I ran 1.1 miles, which when thinking about my half marathon in 2 months, isn’t much but it showed me I could run through the pain as due to being distracted, the pain after the run was not as bad as before my run! Although a small run, for me tonight was a big achievement which makes me more determined and excited for October!
10th August 2017
So Thursday’s are my day for my weekly personal training session. I was slightly nervous it may not go too well as ironically my personally trainer had a knee surgery on his left knee last week, which meant he was bandaged up and limping. Your probably thinking “Well why would that bother you?” but a complication of my disorder is that it has an over protection trait towards the left hand side of my body. This means if my brain perceives a left knee to be indanger, it will give me pain in my left knee because it wants me to stop what I am doing because I am “in danger”. The left knee that is in danger does not have to be my own, which means if I see someone with injuries to their left leg, my brain will take that as a danger and so I receive pain myself!
So when i saw the huge bandage on my personal trainers left leg, I spent the first 10 minutes avoiding any eye contact with anywhere to do with his leg. However I was slightly surprised when I did not feel anything at all when I walked in and originally saw his leg. This is a first for me, so I carried on!
The session was hard, but in a good way! It was mainly about building up the core muscles and my cardio fitness. He worked me hard but I kept up with everything I told him to do, which impressed us both! I am so glad I have started going back to the gym because it makes me feel so good when I can see the results each week!
The London Marathon now in the past, we are focusing on the next run, The Royal Parks 1/2 Marathon in October. The details of the projects being co-supported with UP will be released soon, however we have two participants bravely embarking on the training journey. This is very exciting, but above all, full of meaning as they face the challenge of getting fit to run 13.1 miles. I know that they will do their best and we will be fully supporting them with a training programme and lots of positive encouragement.
Having just done the marathon for the first time, I know what it feels like to be thinking about running for long periods. However, the reality is never as bad as the thought, like most things. The actual run on the day is the icing on the cake, whereas doing one’s best along the way is success. This is a test. A test of oneself. And this is why it is such an incredible learning opportunity and a way to boost self-belief whilst improving physical health.
I will be documenting these two runners’ journeys and hopefully they will be writing their own blog entries. Sharing stories like this is inspiring to us all. We love to hear about and feel motivated by others’ achievements. They have achieved already by signing up. Now they can clarify their picture of success and think about what that looks like as they begin their experience!
understand pain 