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.
Another instalment from a day in my life of living with dysautonomia and EDS!
This week is an anniversary of sorts. An anniversary that coincides with a famous horse race, The Melbourne Cup.
It marks the time I last skipped in front of the TV!
Here’s a recap from that memorable day in November 2015….
Continue reading Living with Dysautonomia and EDS – Chapter 14 “My Last Flutter with Too Much Fun”
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?
“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”
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”
My latest musings on living with dysautonomia and EDS that I shall call “The Rise and Fall of the Red Card!”
A tale of attempting silence by non verbal cues in my house… (Anyone that knows my house will know where this is going…)
Talking and laughing, the things that we all take for granted, are the things that I can no longer do a great deal of. Which is a complete shit because, hey, who doesn’t like doing those things? It’s called fun, right?
Continue reading Living with Dysautonomia and EDS – Chapter 10
“The Goldilocks Plan” to living with dysautonomia and EDS.
Living with dysautonomia and EDS has been a massive rollercoaster.
The downs have been many but I wouldn’t have made it through the last two years without the ups.
The ups are simply those gorgeous people around me who have helped keep me sane and to feel cared for. Numero uno, my husband (who does just about everything there is to do around here), then there are my children (for forever giving me something to laugh about and for just loving their mum), my family (for being there during the tough times and helping me in whatever way I needed it) and, finally, my friends (the rock stars who have stuck by me and not put me in the ‘too hard’ basket).
This last year has also been about developing what I’ve now called my Goldilocks recovery plan. So named because quite simply it’s been about finding out what’s ‘just right’ for me. There has been much trial and error!
Here’s the list of my do’s and don’ts which hopefully should help others suffering from dysautonomia and EDS. Continue reading Living with Dysautonomia and EDS – Chapter 6 “The Goldilocks Plan”