Francesca Butler
Frankie's Wheelchair Marathon for RUH CRPS Clinic
Fundraising for RUHX
Story
What am I doing!?
I am completing the Dorney Lake Marathon on Sunday April 24th 2022.
It has always been my dream to complete a marathon, I just never had the chance when I was running. So, I set myself the challenge of completing this marathon in my wheelchair.
I am doing it in a 'day' chair not a racing chair, so this is like bringing a heavy mountain bike to a road race- a challenge! But I've never shied away from one and I'm determined to complete this event and raise money for an incredible CRPS centre.
I am completing the event with my awesome pal James Parkinson who'll be running alongside me listening to 4.5hours worth of chat!
What is CRPS & what happened to me?
One day I was an elite athlete about to represent my country on the hockey field and the next I was in severe agonising pain and could no longer walk. All due to being tripped up mid sprint. My injury led to reconstructive ankle surgery which, unfortunately, aggravated the pain further.
I have been suffering from a debilitating chronic pain condition called ‘Complex Regional Pain Syndrome (CRPS)’ for over 3 years. It's a maladaptive response of the nervous system to normal stimuli, so my brain perceives any external stimuli eg. pressure/temperature/vibrations etc as pain. Copious volumes of strong opioids have to be taken each day to suppress some of the pain I feel, these come with a whole host of side effects.
The pain is all consuming and with me 24/7, it robs you of choice, freedom, peace and reduces every joyful moment to excruciating seconds. The crushing grief of the life I’ve lost, feels like a weighted vest, compressing my chest, robbing me of the air I breathe. I miss the joy of running, the flow state I found when I played hockey and my old life. It was imperative that I found a way to cope and deal with the constant pain and the toll on my mental health.
Why 'The Forever Friends Appeal- RUH Bath?'
In January I was invited to the Bath centre for pain services for an intensive two week residential pain clinic treatment course. To help coping and living with Complex Regional Pain Syndrome (CRPS).
The Bath Centre for Pain Services was only opened in 2019, so I’m incredibly lucky to be 1 / 120 patients that they accept each year.
It’s the first hospital that I’ve seen the acronym ‘CRPS’.
It’s an incredibly rare & relatively unknown condition- I’ve struggled to get any help through my GP as the condition is so poorly understood.
Leading up to the course my anxiety levels so high, terrified that I’d be hurt & they’d touch my leg (which is a HUGE no no). Also, I was concerned that being in hospital would reignite the trauma I felt following my injury in 2019.
However, my worries were not realised. I couldn’t have asked for a kinder, more compassionate, altruistic group of people than those I had the joy of being around.
The staff were invested in us as whole person, asking what we want to achieve in our lives and how they could facilitate us finding joy and meaning in all that we do.
As for many of us that face great difficulties in our lives- it can strip us of our identity, upend our values and leave our future agonisingly uncertain.
I was alongside 4 other CRPS patients, inspiring tenacious vibrant people - I feel I’ve made some lifelong pals.
This course was never going to heal CRPS, but it’s truly given me hope that I can beat this condition one day in my life. I know it’s going to take a long time, but for the first time since the accident on Feb. 24th 2019- I feel hope. I had forgotten how uplifting that feels.
I have lots of tools/ techniques to help me reach that goal- all whilst living my life despite the condition. Due to the severity of my condition I’ve been invited back later this year- I’m already looking forward to it 🤩
I really enjoyed being somewhere purpose built for wheelchair users, I felt equally capable as those around me - I could shower whenever I wanted as it was all fully accessible :) this very much helped my confidence and meant I didn’t have to spend as much as energy as normal on essential tasks.
I hope one day I’ll be able to tell you all that I’ve bopped CRPS (complex regional pain syndrome) on the head. Remission IS a possible and I am full of HOPE. 😊
The Bath Centre for Pain Services was only opened in 2019, so I’m incredibly lucky to be 1 / 120 patients that they accept each year.
It’s the first hospital that I’ve seen the acronym ‘CRPS’.
It’s an incredibly rare & relatively unknown condition- I’ve struggled to get any help through my GP as the condition is so poorly understood.
Leading up to the course my anxiety levels so high, terrified that I’d be hurt & they’d touch my leg (which is a HUGE no no). Also, I was concerned that being in hospital would reignite the trauma I felt following my injury in 2019.
However, my worries were not realised. I couldn’t have asked for a kinder, more compassionate, altruistic group of people than those I had the joy of being around.
The staff were invested in us as whole person, asking what we want to achieve in our lives and how they could facilitate us finding joy and meaning in all that we do.
As for many of us that face great difficulties in our lives- it can strip us of our identity, upend our values and leave our future agonisingly uncertain.
I was alongside 4 other CRPS patients, inspiring tenacious vibrant people - I feel I’ve made some lifelong pals.
This course was never going to heal CRPS, but it’s truly given me hope that I can beat this condition one day in my life. I know it’s going to take a long time, but for the first time since the accident on Feb. 24th 2019- I feel hope. I had forgotten how uplifting that feels.
I have lots of tools/ techniques to help me reach that goal- all whilst living my life despite the condition. Due to the severity of my condition I’ve been invited back later this year- I’m already looking forward to it 🤩
I really enjoyed being somewhere purpose built for wheelchair users, I felt equally capable as those around me - I could shower whenever I wanted as it was all fully accessible :) this very much helped my confidence and meant I didn’t have to spend as much as energy as normal on essential tasks.
I hope one day I’ll be able to tell you all that I’ve bopped CRPS (complex regional pain syndrome) on the head. Remission IS a possible and I am full of HOPE. 😊
I am hoping to give back to a critically underfunded area of the NHS so that others can have the same positive experience that I have had. They truly have changed my life for the better.