Ruby's story
"Two years ago Ruby was on crutches and reliant on a wheelchair, today she is a different child."
My daughter Ruby has always been an extremely active child doing lots of dance and P.E. About five years ago Ruby, then aged 9, started complaining of pain in her left foot. Over the next two years she had to resort to using crutches and a wheelchair. She was diagnosed with complex regional pain syndrome and she was referred to Bath. I found seeing Ruby inactive for so long was heartbreaking.
Two years ago Ruby and I took part in a three week Pain Management Programme at Bath. Ruby had then been using crutches and a wheelchair for over two years. We were both very open-minded about the course and were prepared to give anything a go.
There were seven adolescents on the course and even though Ruby was the youngest she really enjoyed getting to know the other adolescents and sharing their similar experiences. The Team could not have been more welcoming and it was so reassuring to know that they understood what we had been going through.
The three weeks were extremely demanding both physically and emotionally. We really had to explore our feelings and it really brought home the impact that Ruby’s pain had had on the whole family.
My husband managed to come down for one afternoon. It was so useful to do this. My husband and I had very different approaches to dealing with Ruby’s pain. This was mainly because I was the one constantly around her. They explained that neither of us were right or wrong and gave us some really useful advice on how to tackle issues together.
I was worried that the programme would not be physical enough for Ruby. Two years after the course I can see that the skills we learnt such as checking in, acceptance and looking at your goals have been essential in the long-term progress that Ruby has made. After 3 weeks Ruby managed to walk without her crutches for the first time in over two years!
I was extremely nervous about leaving Bath as we had been in this bubble for three weeks but the Team reassured us by saying we could contact them whenever we needed help. Since leaving the course Ruby has had various challenging issues to deal with but the Team has been really supportive. As a parent I think it is vital to view the programme as being equally important for you and your child. Prior to attending, I thought I would be handing Ruby over for the Team to deal with but this is not the case at all. You take just as big a part on the programme and this is essential to a successful course and to moving forward in the future.
Two years ago Ruby was on crutches and reliant on a wheelchair, today she is a different child. Although she still experiences pain she has just signed up to do her Bronze Duke of Edinburgh Award, she attends a local gym and is looking forward to her future. Ruby doesn’t believe her pain will stop her achieving anything in life.
