Category Archives: My Chronic Doo Dah

My daily ramblings and collections on living with a body that just does shit.

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 The rise and fall of the red card

What happens when adrenaline is your poison

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

I can’t spoon for toffee… say what?

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?

Just for a bit of sleep

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.

justforabitofsleep

Exhausted all the time? Nauseous? Dizzy? Shaky? Could it be POTS – a type of Dysautonomia?

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?

Getting a diagnosis should not be this hard, should it?

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…

Prepare yourselves, especially if you’re a general practitioner/physician…. Continue reading Getting a diagnosis should not be this hard, should it?

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 Dealing with the invisible