Ellen’s CRPS story

IMG_3278My name is Ellen Williams and I have had CRPS for 5 years. My CRPS story began 6 months after I had an arthroscopy on my left knee after a sporting injury. Being told I was suffering from an incurable disorder, which is also invisible to everyone apart from me, was a rather daunting prospect at the age of 15. For the first 2 years I was told that I had a good chance of it disappearing, as I was young and fit enough to “fight” it like it was some sort of infection. 18 months of intensive physiotherapy, on a weekly basis helped to a certain extent but not enough to click my brain back. When the physical physiotherapy stopped working, I began asking questions. My doctor was the one to give me the news I did not want, telling me that now it was unlikely to go for a long time, if ever. As a 17 year old, hoping to go to university, beginning to think of what the future it felt like nothing mattered anymore because I was never going to be able to live the “normal” future I had been planning since I was 10. Needless to say this was the first time I had got very depressed during my battle with CRPS. However this is when I began to see Richmond. He gave me and my family the answers we needed but had never been given before, that yes I may have to live with this disorder for the rest of my life but that does not mean that life cannot be as good as it was always going to be. Learning to manage my disorder has had its difficulties along the way however every bad moment was worth it when I look back at how much I have managed to achieve since the first time I saw Richmond. My family has been there the whole time, through the tears, pain and happier times however I have always wondered about how hard it is for them. I struggle to see my mum unwell so I cannot imagine how she feels having to see me in agony and knowing there is nothing she can do to stop it. The one piece of information I would give to anyone with CRPS is that it is not just the person who suffers, so if you cannot try for yourself, maybe try for the ones who love you. Needless to say I am now 6 months away from finishing my degree and am doing what I love on a daily basis. I am happy. I never thought I would be able to say that 3 years ago and that does not mean I do not have bad days, some worse than others however my daily life is happy and is “normal” for me.

CRPS UK Conference November 2015

CRPS UK Conference 2015
CRPS UK Conference 2015

Here’s a quick reminder about the CRPS UK Conference that is coming up on 14th November in Bath, when there will be some fascinating talks from leaders in the field — see the flyer for details and booking.

I will be discussing practical elements of blending pain science and philosophical thought within a coaching model, a concept that I term ‘Pain Coach’, accompanied by Georgie from UP and Jo Moffitt who will both be sharing their experiences of CRPS. Our session aims to show you how we can go about changing pain and resuming a meaningful life with the right thinking and action, based on understanding pain.

The CRPS UK conference will be on the back of our next UP event, which is on Saturday at T5 London Heathrow, where an even bigger choir will be singing out all day to raise awareness of the problem of pain. We will be filming the event and putting out the footage so that you can enjoy the music — music being such an uplifter.

CRPS UK Conference | November 2015

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I was very pleased to be asked to speak at the CRPS UK Conference this year (see flyer for information). A few years ago I went to the conference and gave a talk about some of the latest approaches to treating CRPS, and since then there has been further progression in both thought and action. I will be looking at these developments as well as sharing the stage with Georgie who will be telling her story.

Those familiar with the UP mission will know that we are delivering messages about pain based on fact and science, illustrated by people’s lived experiences that demonstrate how individuals can move forward and live meaningful lives by understanding their pain and knowing what they can do at any given moment.

One of the problems with treatment and ‘sessions’ with healthcare professionals is that the actual face to face is limited in comparison to the rest of the time. Hence the individual must develop their knowledge and skills so that at any moment they can make a clear decision about the best course of action in terms of how they think and what they do. Arising as a solution to this problem, I developed Pain Coach, which is not only about coaching the individual in pain but also guiding them to become their own coach. This is a blend of the latest neuroscience, thinking in pain and a strengths based coaching model — we all have strengths and values that we have used in our lives, and we can use these for success with our painful problems as well.

The CRPS UK conference will be off the back of the UP event at Heathrow in October, so we shall be full of beans! UP uses singing and music to deliver our messages, but I leave that to Georgie and her choirs — I will not be subjecting you to my tones!

Hope to see you there!

Co-founder of UP Georgie Standage interviewed on BBC radio

Georgie Standage
Georgie Standage

Before the UP launch yesterday, Georgie was interviewed on BBC radio talking about how she has overcome complex regional pain syndrome (CRPS) to lead a full and meaningful life.

Georgie was in full swing as she and the other choir leaders directed their members to perform the most uplifting sets through the day at Heathrow Terminal 5. It was an incredible day.

You can listen to the interview here at 2’08.