Eventually, we just had to press ahead with the operation to remove the ISKD – my weight gain had continued, much to my frustration and although still in a lot of pain with my leg and back they had settled down to a more manageable level. I was also on the waiting list to take part in a Pain Management Programme in Leicester, which I was hopeful would make a difference.

I continued to experience regular stress fractures, difficulty walking and was still reliant on crutches at all times, as well as a wheelchair occasionally. Things settled for a while in my late teens but by my early twenties the toll that had been taken on my back …

I could easily fill a book when it comes to my medical history and experiences, it is so vast and complex. For now I’d like to share a potted version to bring you up to speed and hopefully see how my experiences thus far have led to the creation of this blog.

I have lived with physical dis-ability and chronic pain for 27 years due to a rare bone condition that affects my left tibia and remains only partially diagnosed.