Tag Archives: Ehlers Danlos Syndrome

Stories about Ehlers Danlos Syndrome (Hypermobility Type)

How I found my new normal

F**k  It.  I’m out.

Once upon a time (in 2016 to be exact), I had been sitting, pondering about officially launching this blog of mine.  I had been holding off going public worrying about how it would affect the work I’d been doing.  Thinking by some miracle my condition would pass (ha).

I didn’t want to look like a fraud (you know, I might roll over one day and be restored back to the manufacturer’s settings??).  But realistically, I had been fooling myself thinking, at that point, that I could resume  a “normal” working life.  Whatever that was anymore.  Dream on. My work had been suffering anyway.  In fact, I had to completely rethink it.

A new normal was required. Continue reading How I found my new normal

What is the Impact of Living on Too Much Adrenaline?

Are you running around on adrenaline, much like ‘roadrunner’ just running non stop?  Living on too much adrenaline?

Following my own rather large run in with adrenaline and the diagnosis of having dysautonomia and being hyperadrenergic (a-dren-err-gic – I still have problems saying it) I’ve become somewhat interested in the role it plays on the body and thought I would share some of what I know.  So here goes…. Continue reading What is the Impact of Living on Too Much Adrenaline?

Living with Dysautonomia and EDS – Chapter 13 “My Top 10 Countdown”

“My top 10 countdown for living with dysautonomia and EDS”

It’s been a few years since things went awry with this body of mine.  I’ve now got myself to a much better place but it’s taken some effort to work out what’s worked and what hasn’t. So, I thought it was time I took stock and wrote part II of my Goldilocks ‘just right’ plan in the form of my own top 10 countdown for living with dysautonomia and EDS!

So here are the “hits” for your enjoyment…

Continue reading Living with Dysautonomia and EDS – Chapter 13 “My Top 10 Countdown”

Exercising with Dysautonomia – Part 3 – “Cardio is too Hardio”

My trials and tribulations of exercising with dysautonomia!

If you’re living with dysautonomia, you’ve probably been told to exercise to improve your predicament. However, it doesn’t always work out that way.  Here’s my story of why I found exercising with dysautonomia hard.

Previous Spesh set me on a routine of daily cardio to grow my blood volume and recondition me and my muscles back to health.  At least, that was the plan.

Here’s a bit of before and after of what has resulted: Continue reading Exercising with Dysautonomia – Part 3 – “Cardio is too Hardio”

Do I have Ehlers Danlos Syndrome (EDS)?

Dizzy? Clumsy? Bruise easily?  Joint pain? Feel faint? Get tired a lot?  Feel anxious?

You might have Ehlers Danlos Syndrome (Hypermobile Type) or hypermobility – a genetic connective tissue disorder.

Continue reading Do I have Ehlers Danlos Syndrome (EDS)?

How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”

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…

Prepare yourselves, especially if you’re a general practitioner/physician…. Continue reading How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”