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.
Do you unknowingly have a form of dysautonomia?
It can affect you at any age and there are many reasons it can present itself. Perhaps your doctors haven’t been able to put their finger on what’s wrong or you still feel something is amiss? Could it be POTS?
The following article about a young man and his journey to get diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) will provide some interesting insight into what this form of dysautonomia is and how, to the untrained eye, it can be missed. Continue reading Exhausted all the time? Nauseous? Dizzy? Shaky? Could it be POTS – a type of Dysautonomia?
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…
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 Dealing with the invisible
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