I started to become curious about my strange body after a trauma at work in 1999. Won’t go into it here….it’s all in the section My Story. But after five years of sleeping the greatest part of each day and not being able to concentrate to read even a page of a book, and a further five years of continuing not to work (sixteen years later I still cannot work full-time and probably never will be able to), I knew something was dreadfully wrong. Kind and well-meaning people gave the normal advice: all in the mind, in some way or other. I had a pretty shrewd idea it was all in the body, triggered by trauma. In January 2013 my daughters and I were diagnosed with Ehlers-Danlos III, Hypermobility Type. Diagnosis means freedom in the sense that at last I knew that the invisible aches, pains, subluxations, dislocations, chronic fatigue, depression and inability to function had a real physical cause.
There is no cure. Yet.
Daily I am trying my hardest to make sense of this newly-discovered condition, unknown to most people, and which has little research or media coverage (no doubt until someone famous starts to tell the world about it).
Welcome if you too have Ehlers-Danlos, or if you’re supporting and loving someone else who has, and want to understand more. I wrestle with a feeling that it is indulgent omphaloscopy to write a blog. Who wants to listen to everyone else’s aches and pains when they have enough of their own! But I’ve found it surprisingly helpful to join forums and read about the journeys of others with EDS, and my aim is to make this something of a diary as well as a repository of helpful articles, links and progress in EDS research. If it helps others too, then I couldn’t be happier. Please contribute. Your ideas and thoughts matter to me. Thank you for your love and support.