In June of this year, I found myself sitting in a room with five other chronic pain sufferers, under the care and tutelage of the experts from the Royal National Orthopaedic hospital in Stanmore, Middlesex. I had been waiting for almost one year to get onto the course and it has changed my life in many ways.
First of all, I didn’t realise that Joint Hypermobility Syndrome is also known as Ehlers-Danlos Syndrome – Hypermobility Type 3 (EDS-HT). It is a genetic condition, causing widespread pain because of the hyper mobility of joints. It also presents problems with concentration, memory, sleep, appetite, memory and anxiety. All I knew was that following my multiple ankle surgeries, my health was worsening, instead of getting better.
Once diagnosed with this condition, I felt a sense of relief; gratitude for the help and support of the experts at RNOH but also devastation at the realisation that this was not going to go away. My life has changed forever.
Not that I’m complaining and, to a degree, I’m pleased that I was struggling on in blissful ignorance. But knowledge is power and the theory is, the more the patient (and you do have to be patient with this condition) understands the nature and behaviour of a chronic pain condition, the better they can learn to manage it.
Several of our recently successful paralympians suffer from EDS-HT and have learned not only to cope with it, but to find a whole new outlet for their talents.
So… I’m at the beginning of a long journey, but at least I can see the road ahead. I have fantastic support from our wonderful NHS and I’m so grateful for the friends and family helping me out on a daily basis. I’m not the person I used to be, but I’m looking forward to discovering the New Me and whatever she can do.
This blog space may lay dormant for a while, but please watch out on Facebook (Dog Days and the Buddha) for news of more blogs about EDS-HT and my journey of discovery; for more news about Alan the puppy I donated to Medical Detection Dogs, and the work of that amazing charity; and I’ll also be posting more pictures of my experiments in glass and precious metals jewellery.
For the immediate future, I have to concentrate on my health, rehabilitation and moving forwards within my altered bodily system. Ta Ta for now, the Buddha is going on retreat for a short while. Take care of your good selves.