Adrenaline, my adrenergic tendencies and I have become very acquainted. It’s my side kick in life.
It’s a bit like your favourite tipple at the pub when someone asks ‘what’s your poison?’. You lap it up at the time but suffer from the effects of it big time when you’ve done it to excess. And having had to live with the excess side of things since 2014, when my body just went completely haywire, I’ve become quite knowledgeable about its impact.
Continue reading What happens when adrenaline is your poison
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 I can’t spoon for toffee… say what?
Not my usual buoyant self. Woken from sleep. Mind you it was 1am in the morning and my patience was wearing thin. Freddie Kruger was in the house.
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 Ehlers Danlos Syndrome…
Living with dysautonomia 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. Continue reading My “Goldilocks” recovery plan for living with dysautonomia
When things went wrong 18 months ago, it felt like a malfunction, like the machine went wrong or like the accelerator got left in the on position. Well yesterday I got validation this is indeed correct. It’s called neurally mediated hypotension. Da dah! Continue reading How I found out I had neurally mediated hypotension
A friend of mine who made a daily appearance for 6 months, stopped for 2 months and has now come back again is Grog, as I have now named him (aka bear with a sore head). When he’s in full swing he’s like the hangover (with full on banging migraines) that won’t go away and, over the last 12 months, has become a pretty consistent member of my crew. It seems it’s all part of the delightful bag of tricks this weird condition brings. Continue reading Grog the head