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
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”
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.
Exhausted all the time? Dizzy? Anxious? Could it be POTS or 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 Could it be POTS or Dysautonomia?
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…
How to find balance in life – “Why Breakfast Events are History”
I am a mother. I am a wife. I am a freelance consultant. I am actually quite a lot of bloody stuff. Now with a health doo dah thrown in.
As I continue to understand this thing I have, I continue to make strides (in a somewhat haphazard way) to battle against the old expectations of myself and to carve out the new me. Whatever that is. This week was another one of those weeks where I continued to make progress in rewriting my book of life…specifically my work life.
It was another one of those ‘old expectations’ weeks. The ‘old chestnut’ that pops up a lot. Continue reading Finding Balance in the Madness – Chapter 2 “Breakfast Events are History”
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”