As May is EDS Awareness Month, I decided to do what I have never really done before – I signed up for a conference to learn a little more about EDS. EDS UK hosted the medical team from the Royal National Orthopaedic Hospital at Stanmore to present a day symposium on “Managing Your EDS” – […]
You know that feeling when you comment on something, and then the original post is then deleted? That feeling of “hey, I thought my comment was insightful, and now the whole discussion has just vanished”? Well, this weekend I had that feeling. Without revealing too many details, I had reacted to a discussion about feeling […]
This post was originally published on Baseline Physiotherapy to raise awareness of Ehlers Danlos Syndrome. May is EDS Awareness Month. To learn more about EDS Hypermobility type (the type of EDS I have been diagnosed with) please visit the Hypermobility Syndromes Association. Growing up I knew that I was double jointed. I used to think it […]
This is the face. The face of someone who just realised they had to cycle up a short sharp hill not once but nine times. And the face of someone who then realised that the same hill needed to be tackled twice again while running. Oof. On Sunday I did the Crystal Palace Triathlon. This […]
I can’t tell you how many times I have read stuff about “eliminating negative self talk” – but what does that MEAN. I mean, first of all, what is negative self talk? And second, can you get rid of it? Here’s my “a-ha” moment of the day. This morning I was at swimming. I swim once […]
Finally! Finally I am feeling myself coming back to my normal! On the last day of February I started to feel really really unwell. Last week I waited for the sickness to pass. This is a cold, I thought, so it will lift in a few days. But when I got to my seventh day of […]
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, […]