My story of how I got diagnosed with Ehlers Danlos Syndrome (EDS) and Dysautonomia – “Google Saved my Soul – but I’m Still a Little Bit Mad”
OK I’ve been saving this one up. Stewing on it and cooking up my mad woman.
Hence attached photo of angry woman – she is how I feel on the topic to come. I make no apology for the length of this post, it’s reflective of the time it’s taken me to get the correct diagnosis of EDS…
How to find more balance in your life – by “Meditating like a Mad Woman” of course!
If you had asked me two years ago what I thought about meditation, you would have got a scoff, a sniff and even perhaps an eyeball roll.
I had had some experience of trying it before but I often came out wondering what visualising, body scanning and breathing actually did for me (other than the obvious!!).
What I hadn’t appreciated was the calm I often felt during and after doing it. Me thinks now my head was probably just buzzing a bit much for me to see the wood for the trees!! Continue reading Finding Balance in the Madness – Chapter 1 “Meditating like a Mad Woman”
My trials and tribulations of exercising with dysautonomia and EDS – “The Perpetual Cyclist”
What is it with tourists?
As I was cycling along today (which I am meant to do everyday – hmm subject of another post) the inevitable happened. A nice looking couple (obviously from my home country England, judging by the accents) decided to ask me for directions to the beach.
Me – who obviously just looks like I’m out for a morning meander on my cruiser bike rather than the huffing, puffing lard arse that I was feeling. Continue reading Exercising with Dysautonomia – Part 1 “The Perpectual Cyclist”
What living with dysautonomia and EDS feels like – “The Poo Truck”
My wham bam health issues appeared in November 2014. However, looking back, before my ‘tsunami’ of symptoms hit, a slow trickle of odd symptoms had appeared. I’d been under quite a bit of stress from a job for a period of 6 months and I had a few odd, isolated bodily symptoms occur (which I can now recognise as the early warning signs). I had weird aches in my hands, I was thirstier than normal, I was wired and tired, I got the shakes when under pressure and I started getting weird nightmares on top of insomnia (Dennis the Menace flying spider kind of nightmares). I then experienced the ‘oh god I feel shit I must be unfit’ after pilates (come on?) and I had my first proper almighty so-called panic attack (an ambulance job). But many of these were simply explained away as stress related reactions.
Then I sealed my fate by visiting some hot springs for the day in late November 2014. Continue reading Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”
What living with Ehlers Danlos Syndrome feels like – “Pushing through Fatigue”
I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on… Continue reading About Ehlers Danlos Syndrome – “Pushing through Fatigue”