As the UP story gathers momentum, in particular the #upandrun project (ultrarunning, marathon running and the UP education programme), we are delighted to welcome two new UP ambassadors: Chris and Jeff. Both will be running for #upandrun so keep an eye out for blogs, pictures and always the hashtag!
If you see #upandrun hashtag, give us a shout out! Take a pic and post it on Twitter or Instagram.
Chronic pain affects so many people for so many reasons. The measure of our success will be how many people we can inspire to move on to live their best lives.
This week look out for…
Richmond running along the Thames Path tomorrow (Thursday) from Hampton Court to the Thames Barrier
Next week look out for…
The UP talk and workshop on Weds 3rd July at 2pm at The Groves Medical Centre. Get your place here >> tickets
This is a strong message and one that must be realised.
Life is only possible because of change and impermanence. Each moment unfolding is new, and fresh. Bodily sensations such as pain appear in our awareness as the objects and contents of consciousness, just as thoughts, sounds and what we see appear to us. This is our lived experience. When we stop and watch our own experience, this can be realised.
What often stays the same and recurs is what we tell ourselves about the pain we are feeling. Of course this can be reinforced by the fact that the same things are challenging each day. We attach to our stories. The inner dialogue can be so influential despite the fact that much of what we tell ourselves is untrue, self-critical or pure nonsense at times. What we need is a self-encourager that comes from self-compassion.
A problem that we can all have is the remnants of, or continuation of coping strategies that we once learned to shut off from stress, avoid pain and protect ourselves in the short term. However, in the longer term, the coping strategies cause dysfunction and prevent us from getting better and improving our lives. These are not set in stone and we can create new habits that build wellness and resilience, which support us create a better life.
Mindful practice and meditation is one way of realising this experience, gaining insight into the difference between the sensations of pain and the thoughts that we have about the pain. Learning how to observe our thoughts, feelings and experiences enables us to cut through the sense of self, be in touch with reality (the present and only moment), let go and liberate ourselves from on-going suffering.
Buddhism talks about the two arrows. The first arrow is the pain that you feel. The second arrow is the suffering caused by the way you are thinking about your pain. Learning about the knowing the difference is important.
There is much to be hopeful for. For some years I have focused on helping people gain insight into their suffering and what they can do to move onward. Compared to 10 years ago, people are much more open to what we know about pain rather than being dominated by limited beliefs and social conditioning that we are all subject to in unique ways from childhood through. The research and study of pain continues to reveal much that we can distill into practical tools for day to day use. Improving lives is a learning process, taking on new habits to build momentum. Some of the skills initially surprise people, but soon enough they realise their potency in changing our experiences sustainably.
On Monday I will be delivering an Understand Pain Workshop in Newport. This is one of the UP social initiatives, whereby when I run a Pain Coach Workshop for clinicians and other professionals, I the run one for the people locally for free. It is a 1 for 1 model.
Both the workshops and my clinical work is informed by the latest thinking in pain science and associated fields, delivering the pinnacle of understanding in a practical way. As with any problem, when we understand it, it is no longer a problem but something we must transform using tools that work. As an example, last week I spent 3 days in the company of some of the greatest contemporary thinkers about consciousness and life. Pain is arguably the best example of a conscious experience, and hence understanding this is a key aspect of understanding pain. For those of you who are interested, this included Dan Dennett, Karl Friston, Andy Clark and Anil Seth. In the room though, were many brilliant brains (whole people!).
The basis of a workshop is that people leave with practical skills and a working knowledge of pain so that they can go about implementing and integrating these into their life. I am an avid believer in living life as a main purpose. What I mean by this is that many people suffering chronic health and pain will put their lives on hold and await a change. The science and I argue that the way to get back to living, it to actually get out there and live. Of course there are ways to do this and the purpose of the workshop is to show people how they can; emphasis always on the word ‘can’.
It is worth noting that the Newport workshop (call 01633 820321) is for anyone suffering chronic pain. There are also specific workshops for conditions, for example complex regional pain syndrome (CRPS). There is a CRPS workshop on Tuesday in Bath — see here
You can keep up to date on events and read blogs and tips by following me on Facebook (click on the ‘like’ button), Twitter and signing up to my blog here.
Whether you are a clinician who works with people in pain, a professional such as a lawyer or case manager, a patient or carer, I hope to see you soon!
The next CRPS specific Pain Coach Workshop is coming up in Bath — link at the bottom for tickets (free). We had great feedback from the last workshop, but took note of people’s comments and extended the session. This one is longer so we can really tuck into some of the practices, and have the experience together.
The Workshop is by design a positive experience. We very much focus on what we can do and the choices we can make to lead the best life.
Together with specific practices that are important to address CRPS (and other painful problems), we will be looking at the skills that are known to be key for a healthy life. These skills are the best buffer for life’s challenges and hence play a foundation role in overcoming pain. And that is what we are seeking to do. Not ‘managing’ or ‘coping’, instead overcoming and moving to a new level.
The final part of the session is about how we can implement and integrate the practices into our life so that you can make a plan that you can follow in your world and reality.
This morning I woke up feeling like I was going to do an exam. Wondering if I had done enough practice in the last few weeks to enable me to perform on the day. I felt sick to my stomach, had hardly slept and just wanted to get to the start line so I could get it over and done with as soon as possible!
We left at 6am; I was layered up to the max not only with my running gear on but 2 jumpers and my thick jogging bottoms over the top, to keep my body warm and loose. Dad had made me swallow down some porridge with half a bottle of maple syrup in it to make it more bearable, before we left. That really did make me feel sick!
We jumped in the car and began the hour and a half journey. My nerves were getting worse so I started listening to my iPod music to try and settle myself down. Music has always been my go to thing to calm my nerves, even during flare-ups; singing to the music settles my breathing and brings me back to normality.I was so tired and kept feeling my eyes drooping but I know sleeping before the run would be a bad idea as it would probably just make me more tired.
We arrived in London and I wish I could say my nerves had gone but they hadn’t. Not one bit. I took my 15 thousand layers off in the car and then we walked towards Hyde Park. We had no idea where we needed to be so the four of us probably looked like headless chickens! We got into the park and it was so much bigger than I thought! People were flooding in and I was feeling more and more intimidated by the minute. What had I got myself in for!!
Richmond and his wife arrived, so we got to see our t-shirts for the first time. It was so strange to see my name on a sponsored shirt! It was suddenly really real and I just needed to get to the start line. We said goodbye to mum, Tom and Cooper and headed off. We got ourselves into our start section, and then did the 30-minute wait till it was our turn to head over the line! Dad and I took some last minute selfies, looked at each other then started our gentle run over the big white start line! All I had to do was get back to this line, to finish!!
The route was even more beautiful than I imagined and having that many people shouting my name as I ran past made my legs just keep going without me even really thinking about it. About 20 minutes in a man was running next to Dad and noticed his shirt. He said “CRPS?” and Dad explained that we were raising money and that I had the condition myself and was still running it. He said he had a friend who was suffering with it in his back and he needed help, so Dad told him to speak to Richmond and then the man congratulated me for what I was doing! I did not think anyone there would actually know what we were running for as most people look at me blankly when I tell them about my CRPS so it was such a positive boost that not only did someone actually know and understand the condition but that they also realised that this was not an easy challenge I had set myself! The issue with a invisible disorder is that no one can ever tell, day to day, unless it is obvious on that day so to everyone on that run I was normal but that day I didn’t want to be normal. I wanted everyone to see my condition and how hard I had worked and was trying to get round this run!
The first 6 miles seemed to fly by and it felt like as soon as we had come out of Hyde Park we seemed to be going back into it. The pathway through the beginning of Hyde Park was full of people; I couldn’t help but smile at the support and music blaring either side of us. There was so many people, I could not recognise the individual faces however suddenly I could just understand recognisable voices shouting both mine and dad’s names to which Dad then pointed to the left hand side and there was Mum, Ben (my brother), Tom and Cooper. I didn’t want to look directly at them as I knew I looked like a tomato and was panting like a dog! But just hearing them made me smile ear to ear and I could feel my legs pushing through more and more.
We got to the 8 mile mark and we were still running although it was starting to get hard now. Both Dad and I were starting to breathe differently although I could tell that neither of us wanted to be the one to ask to stop first as that person would then feel like they were letting the other person down! There were some slight hills but nothing as bad as what we have done at home so the hills weren’t too bad it was just the general ache in the whole body that was starting to slow us down. Dad suddenly stopped so I did too, and if I am honest I was relieved, I was in agony but I knew I would not stop if Dad kept running. The walk break allowed both of us to catch our breath but it also made the pain within my legs become more intense. This meant that when we started running again my legs hurt twice as much as before. But I just kept setting little goals for myself so I just had to get to that tree and then when I got there, I would set a new one.
This method worked for a while however then the CRPS started in my left hip and I was really struggling. In my head I was just thinking “I can’t do this, its too much” but no matter how much I thought this, my legs just did not stop running. We got to the 10 mile mark and Dad said we would just keep doing a mixture of both running and walking up to the 12 mile point. Dad was suffering with terrible cramp by this point and my hip felt like it was going to pop out of the socket any second. More and more people around us were walking too but everyone was so determined to keep going to the end! I have never had a 2 mile run feel that long before but today it felt like it was never going to end, like one of those impossible mazes you cannot get out of!
We eventually made it to the 12 mile mark and at this point, the walking was more painful than the running for me however for dad it was the opposite because of his cramp! So it then worked out that while Dad was pace walking, I was jogging beside him at the same pace and that is how we got through the final mile. As we finished that final mile, we were on the straight path in Hyde Park and we could see the finish. It was so close but considering the pace we were going it was still a way away. But slowly we got past the 800m mark. Then the 600m mark. As we went over the 400m mark Dad began to run again, and I suddenly felt my legs kick into a new gear. Very suddenly the finish line was right in front of us and Dad grabbed my hand. I could feel the tears coming up into my eyes. As we came over the finish line, hand in hand, together as we had started I burst into tears and fell into Dad. We had actually done it.
6 months ago when I agreed to do this I never actually thought I would make it to the end. Until I felt that feeling of getting over the finish line, it had always completely felt like a dream! I was so proud and happy my dad agreed to do it with me as I knew I would never have got round it without him. He really is my hero.
We got our medals, banana’s and free water before trying to make our way out through the crowd to find everyone. We knew Richmond would probably have finished already but we were not sure about Jo. We eventually caught up with Mum and everyone and once again I cried as soon as I saw Mum (I am blaming the tiredness for this!!) and just felt like I wanted to collapse on the floor. We caught up about it then found out that Jo had just finished so we decided to wait till they got back before we left. I sat on the floor and stretched my legs out however I struggled to get back up so had to get Tom to lift me back up! Although my body felt tired, I didn’t feel physically tired, surprisingly I felt okay! Everyone finally was all back so once we had all caught up we headed back home, with our branded hoodies, wooden medals and pride beaming from us.
6 years ago I never would have even contemplated doing something like this let alone actually do it. I am a very different person to 6 years okay, some things for the worse and some things for the better. My determination to prove people and myself wrong about my condition is definitely something for the better. Today made me feel more normal than the average person as not many people are able to say they have completed a half marathon but now I can and if anything, it has made me want to do more. Maybe not another half marathon for a while but who knows what will happen in the future so why not enjoy life to the full now. Today I am proud of where I have come in the last 6 years, and hopefully in another 6 years time I will be even prouder.
The final thing I want to say is a huge thank you to everyone who sponsored me, to everyone that has supported me and wished me luck and of course to my amazing family, especially Dad. Everyone was hesitant at first about me doing it however I hope I have proved to them that I am a lot stronger than I look. The amount I have managed to raise is amazing and will do such amazing things to help others not as lucky as me. So a huge THANK YOU goes out to everyone and my last piece of advice will be that if there is anything you have ever thought of doing but think you cant, just do it because trust me you will not regret it!!!!!
So this morning, after work, I got home and decided to go for a run. I felt good and knew I was going to aim for 5km and depending on how I felt when I got to the end of the 5km I might try to go further.
Unfortunately I did not come back with the same positivity that I left with. The first five minutes of the run was good however after that every time I stepped down on my left foot, it felt like someone was stabbing a sharp knife through my kneecap. I managed to run the 5km however came back crying. When I got back, both my mum and dad were around but I did not want to show to them that I had struggled so I just said I needed a minute and went up to my room. I had to strip off as my brace was too tight round my leg and then my running trousers were making my knee more sensitive. I managed to calm myself down enough to stop crying but just felt defeated, which then led on to me feeling like I had bitten off more than I could chew with signing up for the half marathon!
About 5 minutes later, my mum came up to check on me. I wiped the tears away but she could tell something was wrong! I could not help but break down, telling her my worries about not being able to complete the half marathon and letting all the people who have sponsored me down. For some reason the thought of my future life was also upsetting me.
Ever since I’ve had my CRPS I have always had goals to get to the end of. At 15 it was my GCSE’s. At 17 it was my A Level’s. At 20 it was finishing University. With all of these focuses, thinking about my long-term life never really happened but now at 22, in full time work, there is no end goal. This means its more about thinking of moving out, meeting someone, having children things like that and also knowing that I might be suffering with CRPS for the rest of my life. I know that life could be as good as any life I was going to have before CRPS but the thought of living with pain everyday for the rest of my life is still absolutely frightening and upsetting.
My mum has never really liked to talk about this aspect of the CRPS because no one wants to think of their child being in pain for all their life but today she listened then did what my mum is so amazing at. Distracting me, and pulling the real me back out! We chatted like mother and daughter do and started giggling and the pain finally subsided. Today was a bad run, but I am sure even Mo Farah has bad days!!
This week really has not been good so far! After Sunday, I took it easy yesterday hoping not to make it worse. I hardly did anything all day but still had stabbing pain through my kneecap still. I went to bed at my normal time however could not get comfortable and so could not sleep. After an hour of laying in bed I gave in and took some painkillers. However even these didn’t work and so 30 minutes after I’d taken the ibuprofen, my knee flared up. It was a short one but where I was drained from all the pain during the day already, the flare up made me feel extremely lightheaded. Within 2 minutes of the flare up settling down, I had layed down and basically passed out. One wake up in the middle of the night and then I was up for work as normal this morning!
I wore my big metal brace all day to support my leg while I walked, which meant I could get through work and then also drive to my physio appointment. I do not like wearing the brace as it draws attention to my issue, which I cannot stand but what I cannot stand more is feeling sick because of having to take so many painkillers. Wearing the brace means I do not have to take pain killer throughout the day so it is the lesser of two evils! Luckily I do not loose my freedom anymore when it flares up as last year I got an automatic car, which means I can drive without using my left leg, and so means I do not suffer pain when driving anymore!
At physio I spoke to him about everything I had spoken to mum about on Sunday and he reminded me that each day is different and so I will never know what the future will hold so what is the point in worrying about it! With regards to the running he reminded me that a week ago I ran 7 miles. No one forced me, my determination did it so my determination will be what gets me round the half marathon! He told me that this last month before the run, needs to be more relaxed and I need to focus on getting myself to the start line, rather than the finish line! This gave me a boost and the confidence I needed to carry on running, just once my leg is 100% better!
So at the beginning of the week, dad told me he was not going to set up his own fundraising page, and instead he was going to ask all his friends to donate to my page and then he would match whatever I make! This morning he emailed the link to my fundraising page out to his friends and my goodness have I been overwhelmed by emails telling me how much people have sponsored me! The amounts keep getting bigger and bigger and my target of £500 had been doubled within a few hours and the sponsorships just keep on coming! Means I definitely cannot back out now because thinking of what that money can do within both CRPS UK and UP makes me jump for joy! Although think Dad is starting to regret saying he would match whatever I make!!
So from a week after my last run tonight I finally felt strong enough to put my trainers on again and try to go out running! I had a vague aim of where I wanted to get to for my run but knowing how bad the last week had been I knew that setting a proper aim might make it worse so I just needed to go out and do my best. As I was getting ready my four-legged running partner, Cooper was staring at me, begging me to take him with me. Knowing the companionship, even from a dog, might make the run easier, I took him with me!
We both got into our rhythms and just kept on running. Cooper is really good because he quite happily just trots alongside me and does not get too distracted, which means I do not have to worry about keeping him on too tight a lead, which would affect my arms while running. What always amazes me about him is that if for some reason my normally breathing pattern while running gets disrupted he immediately looks up at me to check on me! He is a really good running partner as he can run exactly the same as me but also check on me!
We kept running and running and when we got back home, I had the biggest smile on my face as we managed to run 4 miles in 45 minutes! There was a little bit of pain but that seemed to be coming from the ill-fitting brace rather than my actual knee. With this in mind I have ordered a new support, which is more open so is not too tight and will not make my leg quite as hot while running! I cannot wait to get back out at the end of the week!
I was expecting some backlash pain after my run on Monday but I felt nothing. In fact I felt better than ever! My new brace also arrived and I was desperate to try it out however today was gym day, so the running would have to wait! With it being so close to the run, my personal trainer thought it would be best to just work on stretching out my legs properly and working on general fitness. With having to have a week off, I thought I would be puffed out within 5 seconds of lifting a weight however surprisingly I was fitter than ever! I skipped the most I’d ever done, I lifted the largest weight I’d ever done and I did the best pull ups I’d ever done! I thought the week off would slow me down, however it seems it’s just made me stronger. I feel more ready than ever for my run, which is now on only 17 days away!!!
I was desperate to try out my new brace and I felt I needed to try out running a long distance again. I decided I was going to try running a 10km although Dad is away so was worried I might struggle a bit without any company to keep me going. I had a plan of where I was going to go in my head however did not completely set the route as I never do, to reduce the risk of any pain. When I set out I just thought I would try my best, whether it would be small or long.
Every run I have previously done from home starts the same way, by going up a steep hill onto the main road I run along. Previously I have never been able to run all the way up this hill, normally get half way up before I start puffing however today I ran and ran and ran and then was at the top. Before I had even started the proper run I had the biggest smile on my face because I had managed to get up the hill! It gave me such a boost and so the main run began. I changed the route in my head as soon as I started, as I wanted to make sure I was as comfortable as possible. My first part of my run was only about 1km so I went slow and steady and used it as my warm up.
My new brace was incredible and so I had hardly any pain, which meant I got into my rhythm really quickly and still had the biggest smile on my face! It was getting warm but my breathing was under control so I was still feeling comfortable! I got to the point, which I originally decided would be turning around point as I was going to do, two laps but I was then worried if I turned around the pain would start so I carried on. I ran down a road that was very up and down but I was still running by the time I got home. I was so happy with myself however still wasn’t sure how long I had managed to do! I got my phone out to check and I had run 10km and felt like I could have kept going! It was hard but it was also such a boost!! I finished my run today, really excited for the actual thing!
It’s been a quiet beginning of the week as I did not want to do too much with the race day getting closer and closer. However today is the turn of my last proper gym session before the real thing! The main focus was overall body strength and all was going well until the second round of dumbbell presses on my right side. As I pulled the weight up, the left hand side of my back too a big stab. I dropped the weight and sat down. I hate when my condition becomes obviously within a public place as it makes me so nervous, which then makes the pain worse. However my personal trainer was very good, letting me sort myself out before getting me to carry on but move onto something else, which would not be as irritating. We did lots of different backstretches, which dispersed the pain so I still walked out normally. I was so happy about this as I had also planned to go for another long run with Dad tomorrow and I really did not want to miss that, as I knew how important it was! I may not have worked out as hard as I wanted but I feel today was more of a success with the fact that even with some stabbing pain, I could carry on!
Work went way too quickly this morning. My nerves about going out for my first ever 16km run was at its maximum. I went to meet Dad at the office and was so nervous I could not even speak to him; I just wanted to get going to see what I could do.
We set off both feeling good, except for a massive stitch that I had in the left side of my abdomen. The first 5km seemed to go so quickly. I think this was because for the first time I actually spoke to Dad while running. I’ve never done it before because I was always worried about disturbing my breathing. I’ve worked on my breathing rhythm so much that now it just comes naturally and I do not focus on it. This made me feel better about talking to Dad, and when I did start talking to him, it brought me straight away from any aches I had.
We ran pretty much all of the first 12km however as we started our last 4km loop, Dad began to suffer with some pain within his legs. This meant we did a mixture of walking and running but that was fine as my pain was starting to get worse so it also gave me a bit of a break! I am so determined to run this half marathon that even when I have been in agony on training, I do not stop and I do not say anything because I feel I can just keep going, even if that makes the pain worse. So actually Dad needing to stop was a bit of a benefit as it made me take a break and let my body settle a bit.
We made it to the last 1km and now Dad had to keep me going as my hip felt like it had completely dislocated. I was running, if you could call it that considering I was limping, all the way to the end! Even when Dad pulled up with cramp I continued to the end. I got into the office and thought I was dying, but then I looked over at Dad and he looked exactly the same as me so I felt a little better! Now I know I can run 16km, I feel a lot more confident about next week as now it is only the last 4km that will be new! I cannot believe in 8 days I will be running the real thing! It has come so quick but I am so excited for it now!
So unfortunately the happiness and excitement of Saturday’s run was not long lived. After going to the cinema Saturday night, I suffered a flare up, which was a bit of a knock back. It has always been normal for me to be left in pain after the cinema so adding the pressure of the run on top of that, meant I was not surprised when it happened. People always think I am strange when I just accept the flare ups, but if I do not accept them, I cannot move on and get on with my life each day. That does not mean they do not still frustrate me and upset me every single time but I left myself feel those feelings then I carry on.
I carried on, on Sunday, doing my horse in the morning then going to work and although it was hard, my will power keeps me going. The afternoon was not so easy, the pain got worse so I knew it was time to ask for help. I asked someone to look after my horse and luckily I did as I then suffered a second flare up. Having double flare ups in the space of 24 hours does not tend to happen to me anymore so I try not to dwell on them but it is hard as you feel like you are being knocked down twice!! However once the second flare up was out the way the aching lifted a little, just enough that I could smile again.
I thought the last few days would make me more nervous for the run however all its done is make me be more realistic. I have just accepted that I will probably be in a lot of pain after my run if not suffer a flare up, but that’s okay because it would have been for a good reason and maybe just this once, the pain would be worth it.
I agreed to go and see the personal trainer to discuss my nutrition for the last few days before the run and also to stretch myself out properly before the run. I never knew stretches could be so painful!! Everything ached and twinged as the personal trainer helped stretch me out. However afterwards I felt so good and loose. Felt like I could go run a marathon, which is luckily because I’m running half in 4 days!!
We spoke about the best things to eat on the day and to eat before hand and I was so glad he said I didn’t have to eat beetroot as every runner had told me that I needed to have a shot of concentrated beetroot on the start line, but I hate beetroot!! He said it might be an idea to have some jelly babies in my pocket during the run to give me an energy boost when I need it, however I then remembered that on my Duke of Edinburgh I ate jelly cubes and so that was it, I was taking jelly cubes to the run with me!
I cannot believe how quickly the run has come around. I am both excited for not only getting myself this far but also for the possibility of the actual day and also nervous about letting people down. People have been so generous donating to me and I really will put my best effort into running it on Sunday! Let’s hope I make it to the start line!
RS: I am sure you will! All the hard work has been done now — a very positive approach taken, inspiring many.
A story of courage, perseverance and a ‘can-do’ attitude to life
My name is Helena, I am 20 years old and from London. I developed CRPS in my right leg as a result of a kayaking accident in 2013. My CRPS deteriorated very rapidly and suddenly in February 2016 leaving me in a wheelchair.
I missed kayaking a lot and I was bored of being stuck in the house. So I started researching Paralympic sports which is when I came across para or adaptive rowing. So in September I had a taster session at the Royal Docks, I enjoyed it so much that I was introduced to the Royal Dolphins and London Youth Rowing (LYR). The Royal Dolphins are a very small disability rowing group coached by LYR. Over the coming months my condition slowly started to improve and within a few of months of starting rowing I was waking unaided although still in pain.
The Royal Dolphins compete in the Great River Race every year and I was quickly asked if I wanted to join the crew for this years race. I was in two minds my head was saying no my heart was saying yes. After deliberating the idea I said yes.
So on the 9th of September I completed the Great River Race. The race is London’s river marathon and is 21.6miles down the Thames from Millwall Dock to Ham in Surrey.
We started at Greenwich pier where our boat (called a Cutter) was docked. The river was very rough and we were towed by our safety boat to near Millwall Dock, this is where we started our journey, passing a large ship which marked the start line. The bridge count began, there was 29 bridges between us and the finish.
The first big landmark was Tower Bridge and it was amazing to go under such a historic bridge. We rowed at a steady pace and soon enough we were going past the Houses of Parliament and Big Ben.
Battersea Bridge marked the halfway mark and by this point my CRPS leg was starting to complain. I kept moving my leg trying to get comfortable. I was determined that this was not going to stop me, there was no way I was letting my crew down. Knowing we were halfway the adrenaline started pumping through my body and I had a burst of energy.
This burst of energy got me all the way to Chiswick Bridge, we had been rained on and we were now starting to tire. My CRPS leg was going all kinds of colours, my foot was swelling slightly and my lower back was killing. We kept up the steady pace as we needed to get as close to Ham as we could before the tide changed.
Unfortunately the tide changed a few miles from the finish, the water all of a sudden felt heavy and we we were having to row harder to keep the boat moving. By this point the surroundings were very rural and there were not many people around.
There was a sigh of relief when we eventually went under Richmond Bridge, the last Bridge! We all came together and rowed the best we have ever done, over-taking several crews who had gone out too fast. We could hear the tannoy at the finish party and the gun went, we had finished!
It was the hardest but most amazing thing I have ever done. It has only just sunk in what I achieved. If you are a CRPS sufferer reading this, if you take one thing from it, let it be this, you can do anything with CRPS, you’ve just got to adapt!
You can follow Helena on Twitter here and her blog here.
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There can be a place for interventions in a rounded treatment programme for CRPS. However, like drugs, they do not give the individual the opportunity to learn about and transform their pain. Instead it is an attempt to change the symptoms without addressing the reasons. In other words, a short term, possible fix. It is understandable why someone would go for that option. The responsible clinician will ensure that the person continues to work upon their practices together with the interventions and drugs. ‘Is this what really happens?’ is the question.
Technology is advancing all the time and hence in society is perhaps an implicit expectation that a ‘machine’ will solve the problem. Clearly interventions have not solved this problem, the numbers of sufferers are ever-climbing. I am not sure that they ever will be more than an occasional contributor because the only way a person can really create a meaningful life is by doing just that.
You get back to living by living, not waiting for something to happen or for someone to do something to you. There maybe parameters to work to and practices to practice, but engaging with what you expect of you and your life is the way to gain success. Drugs and interventions may be useful along the way, but not as the main thrust. To offer such a way forward is not giving the person the opportunity to reach their full potential.
To offer drugs and interventions as the way forward is not giving the person the opportunity to reach their full potential. Only by understanding their pain will the person see their own potential to get better
We should be keeping an eye on the balance of funding for research. Is there the necessary funding for study of the condition versus funding for possible interventions and technology? Who is providing the funding? This was an interesting and relevant observation from one of the speakers.
What about the immune system?
The mid-morning session was of interest to me. I find the immune system fascinating as one of the important systems that play a role in protecting us. What goes on in the immune system in CRPS? Are we seeing an over-inflammatory response in people who suffer the condition? How have they been primed and how has their neuroimmune system learned to protect and heal over the years? Dr Andreas Goebel and Professor Frank Birklein delivered very good scientific talks on the topic, offering their insights into the relevance (see links to articles below).
There is a search for sub-types so that treatment can be tailored for these categories. The question is whether we can ever reduce the immeasurable number of variables that constitutes an individual with their unique story into a sub-type? Whilst studying the microbiology of inflammation in CRPS may deliver some important insights into parts of the condition, we must maintain a picture of the whole and remember the person. Chemicals, receptors, signalling pathways are all fascinating (I do love looking at them) but the patient can rightly say: ‘so what?’. There must always be relevance for the person: “What does this mean for me?”.
So what is the relevance? If we can understand these pathways and the role of inflammation, develop ways of determining their influence and how this manifests as the lived experience, we could possibly develop pharmacological treatments that help. Again, this does not replace the need for the person to learn about and transform their lived experience but it could help. It appears we have a long way to go. Additionally, is the fact that any agent that has an effect upon the immune system is likely to have other effects, often unwanted. Chatting to a rheumatologist, she made it very clear that extreme caution is needed in using an ‘auto-immune’ approach to treat CRPS because of the possible side-effects.
Here are some of the studies that are relevant and were referred to:
The posters presentations were punchy, which is exactly right. It is a skill in itself to keep to your allocated time, allowing all speakers to tell the audience about their work. With the advent of TED talks and this becoming the accepted way of presenting your point, it keeps the delegates on their toes and fresh for the information.
Janet Bultitude won the poster competition for her work on the spatial elements of CRPS.
The afternoon was completed with a discussion about amputation and whether this should be a treatment option for people with resistant CRPS. This could have been a highly emotive subject but in fact there was a very sensible and reasoned conversation. Examples were given when amputation was necessary, e.g. when the limb was gangrenous, including Victoria Abbot-Fleming from Burning Nights giving an account from her perspective as a double amputee. Just as Day 1 was rounded off with real experiences, this was true of the second.
With final comments and thanks from Dr Dominic Hegarty, the feel was certainly one of achievement. The conference met its expectations in the main, drawing an international crowd, a host of top names and talks that covered the ground. For me though, there was a missing ingredient: the actual people whom we have been discussing, those suffering CRPS. This is a consistent omission at conferences and one that I feel misses a great opportunity for important conversations.
At the SIP 2017 conference in Malta there was equal participation in all areas, including the working groups, by all delegates: patients, patient representatives, clinicians, policy makers, MEPs, scientists and charities. All contributed meaningfully so that the complete story was told with equal contribution. Opportunities and possibilities resulted in positive work being done at the conference, rolling onto action in Europe. Sadly, on return to the UK there was no change. No-one I spoke to had even heard of SIP let alone the work. We are embarrassingly behind.
Change is inevitable, but which way?
Undoubtedly, there is positive work being done in the UK but is it fragmented. Despite having organisations such at the British Pain Society and the Pain Coalition, again most people have never heard of them and have no idea what they do. When I say people, I mean those that need those organisations to function: patients and their families. There is little point in having societies and working groups if the beneficiaries are not receiving answers to their ‘so what?’. This must change. The change will occur in society and has started. This is the reason for UP, to drive such social change because this is where the problem of pain is embedded.
Returning to CRPS, one of the distinct points to come from the conference is indeed the complexity. With different research groups looking at different elements, of course we must draw it together to explain the 1st person experience: pain, altered body sense, altered perception, altered emotions, altered cognition, altered movement, sensitivity, the ‘what it is like to have this’, what it is like to look at my limb that is part of me but does not feel it and much more. In 2011 I wrote a blog entitled ‘It feels weird‘, one of the features of CRPS that is often described to me by patients. Frequently they would tell me that no-one had listened to this before and hence they were nervous about telling me until they understood that I wanted to hear about it!
We are complex. As I have already said elsewhere, there are innumerable variables that make each moment unique and within that our experience is unique and we are unique. You cannot wholly control for that reality. However, I believe that there is great hope and that includes using all of the work we have heard about over the past few days. There was frank honesty about what is known and what works as well as what hasn’t yet. Perhaps the complexity of existing is the reason why and we may not have answers anytime soon. But, and this is a BIG but, that does not mean that people cannot get better. They can, You can. We don’t fully understand consciousness yet but this does not stop us from experiencing and manipulating it. Pain is one of the best examples of a conscious experience together with love, and as we get to grips with this, we will understand pain more and more.
People can get better
Pain is one of the defining features of CRPS. To understand pain means that the person realises and actualise their potential. Pain is characteristic of the person and hence unique to them. To change pain, which we can, we have to change, which we can. Each person has great potential that is often untapped. We have opportunities and possibilities when we are open, learn and use practices to steer ourselves onward in a chosen direction. We begin by asking ourselves ‘what do I want?’. The answer to this is not ‘I don’t want pain’. Think about what you want, not what you don’t want. This is the beginning.
I would love to know how CRPS Cork will inform practice as from the following Monday morning. It is unlikely we will ever really know, but this is the real measure of success. How will this conference have an impact upon society and the people suffering CRPS? Now that would be an interesting question to answer.
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
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 is next Sunday, 23rd April. This means a week of relaxing, putting my feet up, being fed grapes and generally letting everybody run around after me. Well, that’s the dream….
It’s an interesting time during the tapering. I feel that I should be doing more. My body behaves like a dog waiting at the door with lead in mouth, yet I know (from some excellent advice) that the opposite is what is needed right now. A few easy, short runs will be just fine, I keep telling myself.
It has been hard work but a thoroughly enjoyable test of one’s ability to keep going and maintain a training routine of 40+ miles a week. That’s a lot of time. Some may say ‘me time’. I am grateful for those close around me for allowing me to spend a good chunk of time out there and then putting up with my stretching, moving, twitching and generally fidgeting to ease the aches and pains. I have also probably become a bit ‘boring’ as I talk about the times I have run….
It is hard to avoid thinking about a time. Initially I was just aiming to finish but now I am eyeing four and a half hours. But who knows! I have never done this before so it is a leap into the unknown!
I doff my hat to all my fellow runners and wish them all well on their individual quests. By all accounts the London Marathon day is a great one and I am thankful for the chance to experience the crowds, the buzz and the bobbing heads of the sea of runners.
If you can come and support CRPS UK and UP, you’ll be a welcome voice from the crowd! You can also support our work by coming to our quiz on Thursday (20th April) (click here) or donate here