Tag Archives: featured

How to Get a New Life – Chapter 3 “Discover Some New Dreams”

“How to Stop and Discover Some New Dreams”

One of the best things by far that has come out of my enforced simpler existence has been to re-experience stuff.

Stuff I had forgotten about or stuff I’ve discovered that’s completely new.

Finding out I had a chronic illness has meant a complete rewrite of me and the discovery of some new dreams.  Continue reading How to Get a New Life – Chapter 3 “Discover Some New Dreams”

Living with Dysautonomia and EDS – Chapter 8 “What it Means to be a Spoonie”

What it’s like living with dysautonomia and EDS – what it means to be a spoonie and manage your day according to spoons.  Note: nothing to do with spontaneous acts of spooning – sorry to disappoint! 🙂

Spoonies I’m in some strife and I need your help with my pacing strategies.

This is your call to action….. (Everyone else, strange ‘spoonie’ and ‘spoon’ references will become clearer….)

Life these last few weeks has been ridiculous.  This crazy, stupid, mad woman has been cramming just too much in.  My pacing strategies have gone completely out the window.  And for what? To try and earn some god damn money.  Damn it. Continue reading Living with Dysautonomia and EDS – Chapter 8 “What it Means to be a Spoonie”

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”

Living with Dysautonomia and EDS – Chapter 7 “Dealing with the Invisible”

What it feels like living with dysautonomia and EDS – “Dealing with the Invisible”

Frustrated.  Angry.  Disappointed.  Bloody over it.

Woke up this morning not in the best mood (can you tell?).  Too many expletives to mention exited my mouth.  Husband has slunk off to a quieter place.  Though he did make me a cup of tea first.  All because of my invisible illness.  Continue reading Living with Dysautonomia and EDS – Chapter 7 “Dealing with the Invisible”

How to Get a New Life – Chapter 1 “The Unwanted House Guest”

How to get a new life – “The Unwanted House Guest”

I love a bit of Rumi and this poem really resonated with me given I have my own version of an unwanted house guest that forced me to change my life and slow down.  Take a moment to read it: Continue reading How to Get a New Life – Chapter 1 “The Unwanted House Guest”

Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”

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”