As most readers of this blog know, I am active online supporting the CMT community, particularly through our CMTAthletes Facebook Group. But what some people might not know is that I also am a site admin for two Ehlers Danlos Syndrome Facebook Groups. On one of these EDS groups, my fellow admin and friend Justine posted […]
In 2014 a documentary about Ehlers Danlos syndrome, Issues with my Tissues, was released. The 48 minute film chronicles the journey of Lara Bloom, Chief Operations Officer for Ehlers Danlos Support in the UK, as she trains for (and does!) the London Marathon. First off, I have to hand it to Lara. She does a […]
Oh cobbles. Most days I go about life, more or less unaware that I have a nerve disease. And then somedays I walk on cobblestones. And I remember. The uneven surface of the cobbles is murder on my ankles. I have a real tendency to roll my ankles due to the muscle atrophy I have […]
I’ve often said that friendships are the stars in my life. Shared memories their light. Some friends may be fleeting, in our life for a moment. Some may be around for years and years, our suns. But no matter if fleeting or forever, the memories… Those shared memories stay with us, forming our own personal constellations, […]
Evolution. Change. It is ALWAYS difficult, on some level. This past week I have felt a lot of things come to a head when it comes to facing up to changes. Community Life I am involved in assessing a big development planned for my community, some of it on my street. It is quite simply (and […]
This morning I was scrolling through my social media feed and happened upon a gorgeous picture of some flowers. The caption was something along the lines of “Beautiful and so nice to have something frivolous.” (not a direct quote in case you go searching!) I have to admit I stopped, took a deep breath, stopped myself […]
Grab a beverage of your choice, and pull up a chair. It has been a while, and it is time for a quick catch up. Me? I’ll have a bottle of rootbeer. In fact, I had one on Saturday. Rootbeer has to be my number one guilty pleasure beverage. And to my horror I discovered that the diner […]
Since 2013 I have set a “theme word” for myself to carry through the new year. In 2013 it was “intently”. In 2014 it was “rooted”. This year, in 2015, my word is “welcome”. Photo taken of sunrise on 31 December 2014 along the Suffolk coast, in England The word appeared to me as I […]
This post is one of a series I call “The Paratriathlete Diaries” – in the series I hope to take a regular look at the random things that happen in my life as an athlete with challenges. Any ideas, questions, or suggestions throw them my way. I would like to use this feature as a […]
On Monday I turned 44. The day was like any other day, except for the small fact it was my birthday. The day… Like almost any other day, I woke up to these guys. Photo by Nina Sologubenko I took Felix (the young dog) for a walk. And then I went to work. A very […]