Ellen’s running diary ~ part 2

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Running Blog Take 2

Royal Parks 1/2 Marathon for UP and CRPS UK

RP

12/08/2017

Well it’s been a very busy start to this weekend, what with having to cover a shift at my old restaurant job Friday night and working today. I thought I would be shattered but I was surprisingly energised! Enough to ask my dad if he was around to go for a run this morning when I got home from work! For once he was actually around and free so we could go. However, we had an extra runner with us today in the form of our four-legged family member, Cooper. This meant that for the first time I went running in a national park rather than on roads.

I wasn’t sure how it was going to go because of the difference in terrain but Dad and I agreed that we would run one loop and see how we felt before deciding whether to run a second loop! Dad and I hadn’t been out together for a while and we were not sure how Cooper was going to be but it was a really nice easy run, apart from the few times Cooper decided to run right under my feet!

The terrain was hilly and the ground was mostly sand which did make the run slightly harder than I have previously don however once I was in my breathing rhythm the run was almost natural! We did the first big loop followed by another smaller loop and although the lactic acid was starting to kick in. I felt like I could carry on however it was starting to get warm and Cooper was getting tired so we called it a day. We ran 2.5 miles which I was extremely happy with! And we agreed that we would both take our running gear on holiday with us next week so we could do some more training together, although it will have to be early in the morning as do not think I could run in the Italian sun!

13/08/2017

Today I’m not writing about my marathon journey but about my normal 22-year-old life. Everyone will have to make some sacrifices in their lives; whether it is big or small and I am no different. When I was 15 I didn’t think making sacrifices would be that difficult but now at the age of 22 they do become more of a challenge. The challenge doesn’t actually come from the sacrifice, I’m pretty good at sticking to them, the challenge comes from the judgements of others!

So at the age of 22, clubbing with friends has become a part of my life and I love to dance! The issue comes with the second part of a normal night out…….alcohol! Now I do not actually like the taste of alcohol that much but in the right mood I can enjoy a vodka cranberry or two however when you are on daily epileptic medication that’s changes. Anyone on a similar medication will know that it really does not mix (trust me I tried on my 18th Birthday!) which means when I go out clubbing with my friends, I am designated driver.

Neither me or my friends are bothered by this as we all know I can still enjoy myself without the alcohol but I am still surprised by how offended others get! Constantly being asked “Why!?” or “How can you be here without drinking?” or “Come on surely you can have one?” begins to get boring and repetitive. I do not like telling people that I’m on medication as soon as I meet them, because frankly why do they need to know but in my experience people will push and push until I mention the medication. As soon as that is mentioned, people back off but I do not see why I could not just go out without drinking anyway! As long as I enjoy myself what does it matter!!

At 15 sacrificing the ability to wear high heels was not a big deal to me but now obviously I want to wear the nice heels that match my new dress when I go out clubbing! Wearing heels hurts but I can manage it but wearing heels and showing off my best dance moves is a little harder!

Luckily if I go clubbing, I go out with very close friends who know exactly what my situation is. Whenever I go out I always carry my emergency pills and my medical ID in case and my friends are always aware of this but that is not what makes me feel safe and secure when I am out. What does, is the fact that my friends are able to tell when I am struggling and so will make me take a seat, take my pills or suggest going if it was bad enough! Knowing I have that support even in that environment makes me enjoy it even more!

Tonight I went out clubbing with my best friend and we had an amazing time! However tonight was one of the nights I had to take the option of leaving when it got painful and as soon as we were out of the club, the heels came off! But it was and always will be worth it!

16/08/2017

A nice break in the sun is what most people look forward to in the summer but for myself and other CRPS sufferers, spending time in the sun comes with its own issues.

A main complication of CRPS is hypersensitivity, which means extreme changes in temperature and exposure to direct sunlight can cause increases in pain or worse a complete flare up. This has happened to me many times in previous years however being 6 years into my disorder means I have found ways to avoid this happening or dealing with whatever does happen. Unfortunately this wasn’t the case for me last night. I am currently on holiday with my family in our lovely new house in he Italian hills! It is so lovely and the weather is amazing but this just meant I sat outside in the sun all day long yesterday!

This meant that while at dinner with my family last night I suffered a flare up in my knee and hip. Luckily we had stayed in for dinner last night so when the pain started I was able to take myself up to my own room and deal with it on my own, like I would at home. After 20 minutes I re-joined the family for ice cream and laughs just slightly frustrated and crippled!

Today I woke up knowing it was going to be a rough day, which automatically put me in a bad mood. I try not to allow myself to stay in bad moods for very long anymore as they do not help the pain but sometimes you can’t help just feeling frustrated and angry! Because my knee was still extremely painful I chose to spend the day inside out of the sun and heat, to try and calm it down. This is what frustrated me because I am on holiday, so all I should be doing is spending the day out in the sun, with a good book and dipping my feet in the pool.

As frustrating as it was to be stuck inside all day, the plan was that I did that for the day so that tomorrow I can go back out and enjoy the sun! So fingers crossed!!

19/08/2017

So the day inside on Wednesday worked!! Yesterday I was back out in the sun, swimming in the pool, and good as new! After having an extra day just to double check my knee was better, Dad and I agreed to get up early this morning to go for a run down along the sea front. We agreed to leave at 6am so we were on the sea front by 6:30am when it was still fairly mild.

I overslept slightly we didn’t actually get down to the sea front till about 7am and it was already 21 degrees!! I was hot before I even started running. The running was surprisingly easy however the heat caused some issues both in respect to the increased difficulty in breathing and also the fact my knee got very hot under my brace and so began to hurt!

We did 2.7 miles, which doesn’t seem a lot but considering the temperature, we were both shocked! I find the running a lot easier when I am with Dad as it keeps me going when if I was on my own I might give up! I am hoping this will help me on the race day!

29/08/2017

The last 10 days since being back have been so busy, which is why I haven’t had chance to sit down and right down a blog in that time. It is also because I haven’t had chance to do anything in the last 10 days because I have been so busy with work and other things.

Today was the first evening I had free to be able to go out for a run since the run in Italy. It had been a warm day and the temperature only let up a little bit when I went out. I had a vague idea of where I was wanting to go however I didn’t make the decision on where my turning round point would be. I just wanted to run and enjoy it. I did 2.7 miles again which although isn’t much again, really was the best I felt I could do and for me that’s all I can do is my very best!

When I got back Dad was doing some skipping training and considering I have not skipped since before my injury, I thought it might be fun to try it and see how I got on! I was surprised at how good I was at it considering I have a bad knee and also had just done a run. There is a competition at my gym for the first person to do 200 skips in a minute will win a prize, so that’s my next aim!

31/08/2017

So, this morning, I had a personal training session at the gym. My calves where so tight after my run Tuesday night and because I then walked round London shopping yesterday! Unfortunately, I am too honest and so told my personal trainer this, who then decided to stretch my legs out for me. I almost cried!

Because I had done my run, we decided to focus on weights and core work rather than my cardio. Being a rider, my core should be good however I haven’t ridden properly for about 6 months so was not very hopeful that it would be as good as I wanted it to be! However, I was pleasantly surprised! There is a challenge at the gym to see how long you can swing from two rings, that are hung from the ceiling, with your knees bent at a 90-degree angle. I gave it a go thinking I would last about 2 seconds however 20 seconds later, I was still holding on! My best time today was 25 seconds, which put me as leader for the ladies! Not sure how long I will stay leader though so need to do some more sit ups I think!

03/09/2017

Well today wasn’t a great way to end the weekend. After my positive week with my run Tuesday, seeing the psychologist on Wednesday, going to the gym on Thursday and then having another amazing night out on Friday, I was very happy and content with my week. However, this morning I woke up with my ankle tingling and my knee feeling like it had an ever-expanding amount of pressure inside it, I knew today might not be all that great! Nevertheless, I got up as normal at 5:45am, went down to my horse then went to work. While at work I began to suffer some stabbing pain within my knee and severe pain at the bottom of my ankle. I kept having to have breaks, so the work took me longer than usual. I started work normally, but left work limping and unable to put weight through my ankle.

This may seem strange to many people but this is a normal flare up for me. I will tend to be able to feel one coming now a day’s due to having had the disorder for many years but I can never tell exactly when it will happen. Therefore, I carry on doing what I am doing at that time because if I stop it might not happen for another few hours, in which time I haven’t done anything I had planned to do, which is frustrating. I will also tend to be walking normally up until the point the stabbing pain starts because I do not like making it obvious that I am in pain to others. I know how to best deal with the pain so having others surrounding me, asking me “Are you alright?” or “Can I get you anything?” doesn’t help as it just draws more attention to it which makes the pain worse because I am more stressed out. I understand it is people’s human nature to want to help someone who is clearly in pain but as many of my family and friends know, I just prefer to be ignored.

The best example I have of this is when one day about a year ago I suffered a flare up while out food shopping with my mum. I had suffered a flare up a few days before so was limping as the pain was still dying down from the last one. When I am like this I always push the trolley as I use it as a slight aid to help me get around the shop. My back or hip (I cannot remember all of them as I have so many) started to flare up and I was stuck in the middle of M&S, hunched over a trolley, crying my eyes out. Everyone began to stop and stare, wondering what was going on so my mum carried on walking, heading to one of the refrigerated sections. I slowly followed her, still crying but aware that when I started moving again people stopped staring. It was at this point, while I was feeling a giant stab in my back that my mum has walked back across to me, with two packets of sausages in her hands and said, “Which ones do you think we should get Elz?” If I wasn’t crying at the time I could have laughed but what she did worked. The pain stopped in that second so I could stand back up and look at her and tell her which ones we should get!

People will probably read this and think, why didn’t my mum instantly drop everything to make sure I was okay but the thing is this is exactly what I tell family and friends to do when I have a flare up. I hate my disorder and the attention it brings so when it does flare up, especially in public I get highly embarrassed, which causes the pain to get worse. What my mum did that day was distract me. She stopped me thinking about the pain and all the people staring at me so that I could calm myself down enough to stop the pain. And once she knew I was out of the major pain then she asked me if I was okay.

I guess I am writing about this today because I think it is important for people to understand that every person will experience pain differently to the next person. That also means we all deal with pain in different ways too. Some use pain killers, some soldier on through and some learn to manage it. However, none of these options are a wrong option if they work for the individual person. No one or the people closest to that person should be judged for how they deal with their pain, as everyone is different. Needless to say, I did not take any pain killers that day and both my family and I carried on as normal and by the end of the day my pain had halved. So, although today was full of pain, it was a good day, full of pain!

04/09/2017

Well after yesterday I was extremely surprised to find that I got out of bed normally this morning, and then walked normally. It was a very nice quick recovery! I was just hoping it was going to last considering I had organised before the weekend to go out on a long run with my dad while at work today, and unfortunately, he hadn’t forgotten.

He said we were going to run 10km, which I think is the furthest I have ever run in one go in my life, so I was nervous already, let alone adding the fact I had been crippled in pain yesterday! But I was determined not to let him down as he is training to run with me on 8th October. Although, I was so nervous, I did not talk to anyone in the office all morning! I think everyone thought I was sick!!

At lunchtime, my dad, Jane (a colleague) and I all got changed and then we set off aiming to do 10km, with Cooper tagging along as well! The pain started off okay and I felt good. My dad even had to tell me to slow my pace down at one point, else I was going to run out of steam. The thing with my running is that my cardio fitness is actually very good considering I ride horses, have a very practical job and now go to the gym once a week but my issue is when the pain kicks in. After the first 15 minutes, I started to feel like there was a knife jammed into my knee cap, which is digging in every time I step down onto my left foot and releasing when my left foot comes off the ground again. This was happening on every step, so if you can imagine how many times that was happening while I was running you might think how on earth did I keep running. Trust me it is hard, and it takes all my energy and will to keep my left foot going in front of my right foot because I know the pain will not stop. But I also know that if I do not keep running and try my absolute hardest I will feel like I have failed and that could lead to me giving up, and right now that is just not an option for me! So, I keep running and just keep saying to myself (normally out loud) “It’s not real!”

I got about half way before the second amount of pain started. So, not only was my knee feeling like it was being ripped apart but then my hip started to feel like it was going to pop out of the socket (It would never actually do this, this is just one of the pains I suffer due to the CRPS!). I almost stopped so many times but I just kept thinking if I stop now, I won’t start again because I will want to avoid the pain. It’s always at moments like these, when I am starting to doubt myself that my amazing dad comes up beside me asking me if I am okay. It is like he knows what I am thinking and knows I need a distraction to keep me going! I never tell him I am in pain while we are running as I do not want him to make me stop but I always think secretly he knows, but he is kind enough not to say anything.

It felt like it went on for hours but then the end was in sight and it took all our strength to keep going but we did it. I thought my leg was jelly when we did make it back but I had manged to run pretty much all of it and I wasn’t sick at the end!! This is when dad checked his phone which had been recording out run and he gave a nervous sort of smile before announcing that we had run further than 10km. We had actually run 11.77km which is 7.1miles! That is half of the total amount that I have got to run! Once I had got some air back to my lungs and cooled my leg down enough that the pain began to subside, I let out a huge smile. If a year ago you told me that today I would run 7 miles I would have laughed in your face and told you to leave me alone. I could never have seen myself ever being able to achieve that but now all I want is more!! So my determination for this half marathon doubled today and there is no way I am stopping now!!

05/09/2017

The positivity from yesterday has died down a bit! My calves are so tight I do not want to lift my feet off the ground, my knee is aching and I feel like my right foot is completely bruised!! Luckily, I had today off so after doing my horse I went home and relaxed watching movies all day. However, this evening I did have a pre-booked personal training session with my brother as my normal Thursday slot was not available this week!

I haven’t really had any pain today, which is very surprising but I was still tired after yesterday! Nevertheless, I headed off to the gym with my brother hoping for a bit of an easier session today. I did not let him know straight away this time that I had been for a run yesterday as I wanted to avoid the stretches! So instead the personal trainer made me start by skipping. This is when I wished I had asked for the stretches because both my calves and knee began to really hurt! But, I carried on and started to feel my calves loosening off although my knee was really beginning to hurt.

In the end, I had to tell him about the run (which he was impressed about) and tell him my knee was hurting with the exercises we had been doing so he adapted mine for me so I could still train while not hurting myself more. This is why I like coming to see my personal trainer because he knows that I do suffer some quite bad pain with some of the exercises but that I am also determined to carry on and try to do them, so instead of telling me to stop he just changes them and then pushes me to do my best! It may seem like a really small insignificant thing, but to me it is much more than that! It makes me feel normal at the gym which I have never felt because before coming to see him the only time I had been in a gym was when I was doing my physical physio. It also makes me enjoy the session even though I am in pain!

We did a lot of weight exercises and the personal trainer was laughing as I was using one weight less than my brother when doing the bicep curls!! Clearly all the lifting of full wheelbarrows does the trick!!

CRPS 2017 Conference in Cork

CRPS UK charity for complex regional pain syndrome

Richmond is heading to Cork with the CRPS UK crew

I am looking forward to the CRPS Conference this week for a number of reasons. The primary reason and purpose is to connect with others who want to drive social change in terms of pain. I will be representing UP of course, and encouraging people to join our community as we forge forward with enterprising work to change the way society thinks about and addresses pain.

Pain is embedded within society and hence is a social problem. You could also call pain a public health problem, with both terms more accurately defining the nature of the issue. Pain is not a medical problem.

Conferences for particular conditions are often dominated by clinicians and scientists. Whilst these groups must be there, so should patient representative organisations, policy makers, MPs and others who must play a role in the much needed change. The best example of this in action was the recent SIP conference in Malta when every group was present to discuss how we can move onward and the next steps.

Sadly, I have neither seen nor heard any positive reverberations in the UK from this key meeting. All the work is going on in Europe. I hope the UK will wake up. I will certainly keep nudging until we do together with my friend and co-conspirator, Pete Moore. Coming soon, we have some short videos of recent conversations we had about pain ~ sign up to the UP website and you’ll receive notification.

The CRPS conference will be a chance to talk to researchers about their new findings. Naturally I can read their papers, but the chance to chat and connect is vital. We need much more interaction between those in healthcare and those doing the research. The science must be distilled into something that can be consumed by all, which is another of UP’s purposes.

I will be tweeting from Cork, so keep an eye on Twitter @painphysio and follow me if you don’t already. Blogs will appear here and on my ow site: Specialist Pain Physio and on Facebook

 

Drugs and pain

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Drugs remain the predominant approach for chronic pain….

…which is one main reason why the problem of pain is escalating. We can never truly overcome chronic pain by thinking that drugs are going to do it for us. We have been brought up in a society in which medication is embedded in our thinking ~ we expect it, healthcare delivers it.

However the reality is very different, which is why the continued use of the biomedical model for chronic pain consistently lets people down. This is now an old fashioned approach that does not work.


Recent headlines

‘Unnecessary’ painkillers could leave thousands addicted, doctors warn’ in The Guardian, May 2017 ~ read here

‘Accidental addiction to painkillers ‘a public health crisis’, says charity’ on Sky News today ~ read here

Mr Shapiro said: “If you look back to say 2009 when the all-party parliamentary group on drugs produced a report on this very issue, including not just painkillers but tranquilisers and anti-depressants and the Government then took a very complacent view of the whole situation… that attitude hasn’t really changed.”

WHY? 

Why is there such little interest from the government, from policy makers, from research funders etc etc? I am sure that when some of these people experience their own chronic pain, they will regret that lack of interest. In the meantime we need social progress for this enormous social problem ~ understand pain a purpose-led enterprise driving social change


You may think that my opening statements suggest that I am anti-drugs. No, I am not. There is a place for medication in the treatment of pain but there must be parameters. For example:

  • What is the best drug for this person and how their pain problem emerges
    • e.g. based on latest evidence ~ ‘Existing evidence on the use of gabapentinoids in CLBP is limited and demonstrates significant risk of adverse effects without any demonstrated benefit’ August 2017 ~ read here
  • Does the person understand the drug: why am I using this one? What does it do?
  • How long will the person be on the drug?
  • When will it be reviewed?
  • How will the use of this drug fit into an overall treatment programme?

The fact that the old model continues to be used means that other serious problems have emerged, adding further suffering and cost: addiction. To use the Buddhist definition of the word ignorance is relevant. To be ignorant is to fail to see the reality. That is most definitely what has happened and this must change now.

Drugs do not teach us how to overcome pain. They merely mask the underlying issues for a short time before they bubble up again. Whilst this can be convenient and briefly satisfy the search for a ‘quick fix’, each time the pain re-emerges and each time the next dose is taken there is a learning.

We learn to gain a dependence on the relationship between taking something and the pleasure of relief ~ this is not addiction, which is another result from over-using drugs or an inappropriate use of medication. The short-termism is perhaps the way we are designed to work, seeking pleasure and avoiding pain as quickly as possibly. This us understandable, yet it still remains the wrong route to truly overcome pain.

Overcoming pain

So if drugs don’t do it, what does? There are simple steps yet it is challenging and hard work. However, hard work and focus are fundamental when we are seeking results and achievement.

“Success comes from knowing that you did your best to become the best that you are capable of becoming” ~ John Wooden

Firstly we must get our thinking straight. Understand pain: like any problem we must understand it to seek the solution.

Then we must take action, repeatedly, in the desired direction. Actions include our thoughts and how they make us feel and direct what we actually do. We must not make the error of thinking that the mind and our thoughts are somehow separate from the physical-ness of ourself. They are not. Our mind is embodied ~ where else can you experience your thinking but in your perceptions and actions? And where do you experience this from? Your body. Each moment is made of thoughts, perceptions and actions that define how we ‘live’ that moment.

Whilst this can sound a bit wordy and a bit philosophical, it creates a practical way onwards with a range of practices and skills that we can develop. What we practice we get better at and what we focus upon we get more of. What do you want?

“What do you want?”

Re-read the question if you need to. What do you want? What does that look like? How can you orientate yourself towards this vision in your thinking and actions each day, each moment? The answer to the first question is not, I do not want this pain. That is what you don’t want, this pain. It draws your attention, focus and resources to pain, pain, pain. Again, think about what you want. Let the image arise in your mind’s eye. Then make it brighter, more colourful and bigger. How do you feel?

To overcome pain we must learn to coach ourselves. We ask ourselves the right questions to start the day off well, committing to be the ‘best me’. Then we practice the skills we have learned that are all in line with your vision ~ movements, exercises, sensorimotor training, mindfulness, communication (with self and others), attention, gratitude, resilience, re-engaging with desired activities, people and situations to name but a few.

The content of each programme is sculpted according to the individual, who always does his or her best, learning all the way. Learning about the causes of on-going pain and how to transform their state over and over so that there is sustained change as the person reaches their potential. This is the essence of Pain Coach ~ the person getting results.

We are seeking social progress. The vehicle to drive this progress is UP or understand pain. UP is a purpose-led enterprise delivering the pinnacle of our knowledge of pain to those in need via workshops (recent CRPS Workshop success) and other means: including the pain sufferers, their families and friends, the policy makers, patient groups, charities and organisations.

Now is the time. Now we must move onwards and embrace the knowledge that we have gained and the new knowledge that will continue to emerge from research and experience. With this we can carve forward to reduce the enormous suffering and costs for a better society that thrives. Drugs are not the answer. The answers are within us.

“Be the change you want to see in the world” ~ Mahatma Gandhi

I would add, be the change you want to see in you. Because you can.

Please contact us if you would like to link, partner and arrange a workshop:

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Ellen’s Running Blog ~ a great story!

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Ellen training for Royal Parks 1/2 Marathon 2017

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!

Workshop for CRPS a great success

Understand Pain & Pain Coach Workshop ~ Bath, 2017

“Thank you very much for today. It was a real privilege to attend”

I was delighted that we filled all the places and had to add several more for the CRPS workshop on Monday. It was an excellent afternoon with a really engaged group, keen to understand and know what they can do to move onward. That is the premise for Understand Pain and Pain Coach Workshops, where we deepen our knowledge of pain so that we can focus on what we CAN to be successful and get results.

This was the first UP & CRPS UK workshop at Royds Withy King in Bath, and based on the demand and feedback, we will be rolling out future dates across the UK. We will also be extending the workshops to a day so that we can have even more experiences of success together. The day is all about taking action and having the experience of what that is like, driving and motivating change in your desired direction.

The popular practices we looked at included the mindful practices that can be used in different ways to create calm, insight and focus, the ‘check in’, and journalising. We followed the way that I do in sessions with people 1:1, starting with the vision, strengths and values. This attunes the person to where they are going and the characteristics they possess to use to get there.  Over the afternoon we covered the key areas:

  • Understand Pain
    • What is pain?
    • The size of the problem of pain
    • CRPS criteria
  • Pain Coach
    • The practices that constitute a lived programme that interweaves into the person’s life, whilst they live their life as a means to overcoming pain — becoming a self coach and a self leader

The three main features of the workshops are simple and digestible:

  1. The model of success ~ how we can be successful
  2. Strengths based coaching ~ how to get the best of you
  3. The pinnacle of our knowledge of pain ~ understand pain to change pain

There is no reason why we can’t address pain, learn, transform, and have fun at the same time!

Here are some more comments:

What did people most enjoy?

  • “being in a space to acknowledge pain, guilt free”
  • “Richmond especially, extremely brilliant way with him”
  • “lovely delivery style”
  • “the way the workshop was presented”
  • “very enjoyable”
  • “good explanations. Simple to understand”
  • “very informative”
  • “I did not expect to be challenged as much as I am now following the workshop — positively”
  • “interactive nature of the event”

Come and join us next time!

Future events driving social change

For release in September ~ In conversation: Rich and Pete talk pain. A series of short videos focusing on the key areas of pain. See Pain Coach and Physiotherapist Richmond Stace + Pain Toolkit’s Pete Moore in relaxed conversation. My aim is to create a community so that we can drive social change via new thinking based on new understanding of pain and the action we must take as a society. This is just the beginning. Join us!

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Understand Pain & Pain Coach Talk ~ Weds 4th October 2017 at The Royal Society of Medicine ~ click here to book

Understand Pain & Pain Coach Workshop for Clinicians and Therapists ~ Thursday 5th October 2017 in New Malden, Surrey ~ click here to book

A community gathers ~ Walthamstow Garden Party

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The potency of community spirit

Yesterday I spent the day at the Walthamstow Garden Party wearing my UP hat. It was a great opportunity to reach out into society and have meaningful conversations with people about their pain and suffering. I think it is fair to say that the misunderstanding of what pain really is remains a hugely impacting problem. This misunderstanding is a barrier to individual’s realising their potential. This is the focus point for UP.

Talking to many people over the day, the conversation with the founder of an organisation dedicated to improving the lives of young people stuck in my mind. Engaging with a local community project, Leaders Community, I felt that this is exactly where UP needs to deliver work that inspires and empowers people. Where could be more potent than in their very own environment?

The Health Zone where we were based had a range of excellent projects on show. This included Bart’s Sexual Health Team, Positive East (free HIV tests), and Waltham Forest CCG (project on how teens and young adults want to be engaged by healthcare). We were very pleased to meet the Mayor, Cllr Yemi Osho, and Council Leader Clare Coghill at the tent.

UP in the community tackling chronic pain
Meeting the Mayor and Cllr Coghill

The Party was full of enterprise. From food stalls, to crafts, to dance, to poetry and music, the beautiful park was brimming with the joyous atmosphere of bringing people together. The day was truly inspiring. Seeing businesses flourishing and being supported by each other, the environment and the people they serve was tremendous. UP felt very much at home within this spirit of cohesion, when society is working at its very best. Pain is a social problem and a public health issue. It will be society’s cohesion and togetherness that will see the vital change we need to ease the current unnecessary levels of suffering.

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Delicious herbs

Onwards ~ UP in the community

Where better to engage people than in their own community. The Understand Pain and Pain Coach Workshops for people suffering chronic pain can be delivered right there, where they are most needed. UP aims to partner with primary care trusts, CCGs, GP practices and others to deliver workshops to both clinicians and people (patients — I prefer ‘people’). Conversations yesterday can lead to actions to results, those being people leading meaningful lives, contributing to society as they can. Now I am working on converting the talk to purposeful action.

RS

 

Walthamstow Garden Party

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Music, dance, food, fun!

Today I will be at the Walthamstow Garden Party, which is a little more than just a garden party! Take a look at all the events. It’s an incredible day of great entertainment and delicious food!

Come and find me in the Health Zone if you have questions about pain or the work I am doing to tackle the global pain crisis with UP.

I am there all day to talk and talk and talk! So, if you suffer pain, treat pain, have to decide upon policy, want to know about the latest thinking in pain science, are interested to partner with UP, set up workshops at your practice, come and see me.

Some useful links:

When you come along, take pics and use the hashtag #UPparty so that we can gain even more momentum with our work to change pain.

In Europe alone, chronic pain costs up to €441 billion each year, affecting at least 100 million people. This can and must change, this being our purpose at UP.

 

Probably the best meeting in the World

More reflections on SIP 2017

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You know what it’s like. You realise at the time that you are involved with something important. Then you get home and start thinking ‘wow’, that really was probably the best and most important meeting in the World when it comes to the problem of pain: SIP 2017.

The problem of pain is undoubtedly one of the greatest challenges facing society, and most people don’t even realise. Up to 441 billion Euros is the cost of chronic pain each year. That is an enormous financial burden that does nothing to describe the suffering endured. This can and must change. Attitudes and beliefs in society need a drastic update in line with what we really know about our potential as human beings for fostering change. Out with the old messages, out with interventions and medicines as the way to solely ‘manage’ pain, out with the notion that pain equates to tissue damage. Out, out, out!

“out with the old messages and in with the real understanding of pain. Then society knows that this suffering can ease

It was fascinating and enlightening to hear so many European clinicians and stakeholders talking about people (patients), the importance of healthcare professional education, and even the word coaching was used. In the room were people looking at pain from all angles, a unique blend in the first place. This set the scene for deep discussion, learning and results.

The openness to ideas and modern thinking about pain was refreshing. The people at SIP 2017 want to understand, want to learn and above all want to make a difference. And we can make a difference by persevering and looking at every possible way to change the way society thinks about pain ~ understand pain to change pain.

No single group dominated the meeting. Instead the forum was truly free for each person to contribute and put forward their thinking and experiences. We heard people talk about their pain, and they were able to discuss this with scientists, clinicians and policy makers in an environment created purposefully. It seems that clinicians ‘worry’ about conferences or meeting where people with pain and suffering can speak about their lives. Instead, this should be encouraged and embraced as we get to the bottom of the problem and take real steps forward. How useful is a conference where academics or clinicians speak about cases and research without ant real stories in the room?

“the openness to ideas and modern thinking about pain was refreshing

My intention is to build and cement relationships with other stakeholders across Europe, be involved with the new EU platform, contribute with UP and Pain Coach workshops and take action in line with the vision of UP: a society that understands pain.

SIP statement

‘The European Commission is following SIP’s lead and has launched the EU Health Policy Platform to build a bridge between health systems and policy makers. Among other health policy areas, the societal impact of pain is included as well and will have a dedicated expert group.’

In the UK we must take this example of how we can move forward. Pain is a societal issue and hence we need to hear from all stakeholders, in particular patient representative groups. The lived experience of the person is the basis of what we are working with to overcome pain. We are seeking to change the story so that the person can say: I feel like myself. Change is what people want, defined in their own terms by things that they want to do in their life. We can and must work on a number of levels to achieve this and we can and must be optimistic. Why? Because we are changing every moment, we are designed to change and need to know how.

Our quality of life is determined by how we feel. How we feel is determined by what we are thinking (consciously and subconsciously). What we are thinking is based on our beliefs about the world, and these stem from all the influences in our life. The moment to moment decisions and actions we take through the day shape our life and the ‘rating’ we give to our life. However, there is constant change afoot and we can harness the opportunity this creates by making decisions to commit to a particular pathway. The pathway is determined by the practices chosen in line with a desired outcome. Being determined to be the best you, with a clear vision and being coached to achieve success and long-term results transforms the experience. This is the essence of Pain Coaching.

With 100 million people suffering pain in Europe, 100 million Americans suffering and the rest of the World following the same theme, we must create the conditions for change. This starts with the understanding of pain because when people truly understand their pain, they realise their potential and a way forward. There can be a role for medication and interventions on occasion, but with this being a societal problem, there are many other actions that empower and enable people to overcome their pain. Together we can do this as a modern society. We have the means and with the costs so high, we have the impetus.

RS

Who should you see for chronic pain?

You have a choice but which is the right one?

The short answer to this question is a clinician who truly understands pain. Such a clinician will work together with the person in a way that is solution focused and inspires change in a desired direction.

Many people will go to their doctor, so they immediately enter the medical model. Informed doctors will help the person understand their pain from the outset and initiate self-coaching practices. Others prescribe pain killers or anti-inflammatories, they may refer for investigations and could provide a tissue based explanation, thereby entrenching the biomedical thinking from the outset. Most of us have been brought up with this model so it is implicit. Our deepest beliefs about pain and injury tap into this because it is what we ‘know’ despite the fact it is actually wrong. Pain and injury are neither the same nor are they synonymous.

“Pain and injury are not the same and they are poorly related

Of course the same can be said for other clinicians and therapists who base their thinking on the biomedical model. Even those who claim to be ‘biopsychosocial’ will maintain a focus on the bio, perhaps with some psycho and rarely any socio. Pain as a public health issue necessitates that this be turned on its head. When a person is in pain, they don’t need to think about chemicals in their body or what their brain is doing. Instead they need a practice that they can use then and there to change their current course.

Is there an ideal clinician or therapist?

You may be surprised to know (or maybe not!) that pain education for healthcare professionals is minimal and falls short of the need. Those interested in pain may follow a further course of study such as the syllabus described by the International Association for the Study of Pain. Others may be examined upon the dimensions of pain, how they interrelate and their emergence in the person as a lived experience. Modern pain education requires input from the fields of neuroscience, cognitive science, studies of consciousness and philosophy as a bare minimum.

Briggs et al. (2015) looked at undergraduate pain education and concluded:

‘Documented pain teaching in many European medical schools falls far short of what might be expected given the prevalence and public health burden of pain’. 

understand pain to change pain

What do we need?

Society needs dedicated clinicians for pain who can incorporate all dimensions of pain and how they blend in the context of the person and his or her life. Each moment is made up of cognition, action and perception within a sociocultural background and on the end of a lifetime of prior experience and learning. The clinician must understand that pain is part of such a moment and be able to lever the opportunity and potential that each person holds. In understanding pain, they know that the person can be successful in changing their life.

In essence when a person seeks help with their pain, they want change. No longer are they satisfied to maintain their current existence. They have decided to change and want to know how. Existing disempowering beliefs have thus far been in the way of successful change — e.g./ pain = damage; fear of pain; fear of change; fear of failure. These beliefs can be far reaching and deep, having existed since childhood. Each person also has empowering beliefs that can be used with their individual strengths, building their potency with practices, much like building muscle. We change by design, but often need the know-how. This is where coaching is a powerful approach. The person with chronic pain needs coaching to reach their potential.

“let’s focus on what you want and what you CAN do

The Pain Coach Programme focuses on the individual achieving results and success. With the foundation of understanding pain in place, the person can learn and develop practices that foster health and well-being whilst other practices maintain the course towards a desired outcome: what do I want in life?

When we need help in life we turn to a trusted advisor who can give us what we need to change our circumstances. The challenge of pain is no different. Only the individual can decide to take action, and it is the action that leads to results. However, he or she needs a clear vision of what they want, new understanding, actions to take and the know-how or practical knowledge of how to apply new thinking and skills. This is why coaching is ideal because it provides just that.


For more information on workshops and Pain Coaching:

UP | understand pain workshops

Pain Coach Programme for complex and chronic pain

Pain Coach 1:1 Mentoring for Clinicians

 

 

We need a new pain definition

What should the definition consider?

Marsaxlokk market with traditional Luzzu fishing boats

Tomorrow I head off to Malta for the Societal Impact of Pain Conference 2017. The areas that will be discussed include:

  1. Pain as a quality indicator for health systems
  2. Building platforms to address the societal impact of pain
  3. Impact of pain on labour and employment
  4. Challenges, models and lighthouses in pain policy
  5. Evolving concepts in the definition of chronic pain: a dynamic process

Overarching the meeting is the multi-stakeholder platform (SiP) that is described on the website as:

The “Societal Impact of Pain” (SIP) is an international platform created in 2009 as a joint initiative of European Pain Federation EFIC® and the pharmaceutical Grünenthal GmbH and aims for

  • raising awareness of the relevance of the impact that pain has on our societies, health and economic systems
  • exchanging information and sharing best-practices across all member states of the European Union
  • developing and fostering European-wide policy strategies & activities for an improved pain care in Europe (Pain Policy).

The platform provides opportunities for discussion for health care professionals, pain advocacy groups, politicians, insurances, representatives of health authorities, regulators and budget holders.

The scientific framework of the SIP platform is under the responsibility of the European Pain Federation EFIC®. Co-operation partners for SIP 2017 are Pain Alliance Europe and Active Citizenship Network. The SIP 2017 symposium is co-hosted by the Malta Health Network and the No Pain Foundation. The pharmaceutical company Grünenthal GmbH is responsible for funding and non-financial support. SIP 2017 is made possible with the financial support of the Ministry for Finance in Malta.

There are some very important conversations that need to be had, and these must then be translated into positive work. I am absolutely focused on the positive work aspect because we need change, society needs change and we need results. I believe that this is achievable. Of course with all this talk of pain, the question is whether we are talking about the same thing?

The IASP definition of pain:

“an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”.

This was published in 1979 and based on work from 1964 by Harold Merskey. Perhaps it is time for an update! The IASP definition certainly captures some of the features but there is one major bit missing as far as I am concerned. The person.

Pain is a whole person experience. Regular readers will have an understanding of pain now, and the fact that pain is not grounded in any structure or pathology (the biomedical model). Instead, pain is part of a whole person state of protection when there is a perceived threat. The key word is perception and much of perception involves biology in the dark and the hidden causes of sensory events; i.e./ we are aware of certain expectations with regards to pain, but most of the biology is going on without our conscious knowing.

A person suffering chronic pain spends a significant amount of time in a state of protect, much by habit. The range of contexts within which the experience emerges in the person widens as threatening situations are increasingly interpreted (biologically and consciously via habits of thought) as threatening.

I would encourage people to think about a definition of pain encompassing these key features:

  • the whole person
  • perception
  • threat

This would be a good start point. From there we can consider the sense of self and how our understanding of this contributes to the experience of pain. I love the notion of ‘expecting yourself’ as put forward by Prof Andy Clark, a leading philosopher who’s work I think will impact enormously on our thinking about pain, together with Dr Mick Thacker and others who are leading the way.

Exciting times and exciting times ahead. There is MUCH hope now and so there should be. This thinking needs to pervade society and this is the purpose of UP, to deliver the right messages and to deliver solutions with results. Positive work to be done!

RS