Officially diagnosed with Ehlers-Dalos Syndrome type 3 in August 2015, but having lived with the incredible pain and main symptoms for the last three decades, I find myself suddenly on a journey that I had NO idea I was on, yet unlike many diagnoses, this is in no way step one! This train left the station a LOOONG time ago, and so I am having to process the ripple effects both backwards as well as forwards!
Plus process the pros and cons of getting a diagnosis of a life long, inherited, debilitating condition at the age of 48 that I have also handed down to my children!
The down side to such a late diagnosis is that had I known, there was much that I could have done to look after myself very differently, but on the up side is that I pushed myself to do all kinds of things that I would never have done had I known! It’s a tough balance… pushing one’s self beyond our “limits” is very often a good thing, but it can also be a bad thing, and perhaps much of my health could have been preserved had I been a bit more gentle on myself… But there is no point in going through the “what if”s …
The looking back on the ripples behind, is about learning from the experiences, explaining things that caused so much angst, confusion and heart ache, (and physical pain) over the past three decades, and putting them to rest, using them as important building blocks for the future, and gleaning as many lessons from them as possible! The changes that I am making in my life that are having the biggest impact so far, are from learning from looking back on the journey already passed!
The looking forward is about planning and protecting. In theory, EDS is a rare condition, but in this day and age of the internet, the EDS population around the world has been brought together through community forums, and there is SOOO much to be learnt from those ahead of me on the journey! Asking advice, sharing experiences, asking for practical help and so on…
I also have an insurmountable task ahead of sorting out my health and future!
This blog is as much a personal journal, and way to record information and helpful links, and advice etc for myself, as it is a place for others either with EDS, or for friends and relatives of those with EDS, and just as importantly, it is for those walking this journey by my side, where they can follow my journey, understand what is happening for me and why, they can leave comments, ask questions, and understand this crazy condition. The idea will be to collate all the information that I can find, as well as add my own personal thoughts, ideas, successes and failures..
Especially at the beginning, this will very much be a work in progress, but hopefully it will grow to be an important resource for myself and anyone else who is interested.