Tag Archives: Dysautonomia

Stories about living with dysautonomia and the symptoms of dysautonomia

Why exercise with dysautonomia is hard

If you’re living with dysautonomia, you’ve probably been told to exercise to improve your predicament. However, it doesn’t always work out that way. Here’s my story of why exercise with dysautonomia is hard.

Previous Spesh set me on a routine of daily cardio to grow my blood volume and recondition me and my muscles back to health.  At least, that was the plan.

Here’s a bit of before and after of what has resulted: Continue reading Why exercise with dysautonomia is hard

Brittany Wattenbarger: Living well with chronic illness

One of the things I aim to do with this website is offer inspiration to others faced with illness in living their lives as best they can.

This is the first article in a series of feature posts called “Living Well with Chronic Illness” and I am extremely pleased to introduce Brittany Wattenbarger, of A Southern Celiac, as my first guest.  Drum roll please… Continue reading Brittany Wattenbarger: Living well with chronic illness

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

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?