Saturday, October 8, 2016

Rise and Fall- Dysautonomia Awareness Month

This one's for the fighters. For the Gatorade hoarding and the salt obsessed. For the IV saline loving and the compression wearing. For the supine superheros with a foggy brain.

This one's for the 70 million people around the world with Dysautonomia.

Rise and fall
I rise.
Feeling the calm before the storm.

A wave
Voices start to fade
A world of distance forms
The mighty drum begins to beat
While darkness becomes the frame
I'm heavy yet a feather
All feeling lessens
Intertwined in my thoughts,
Yet detached from physical feeling
My legs are no longer my own.
The black curtain begins to descend
Signaling an end and a beginning
A stranger in my own shell
A ghost waiting.

I fall.

Head down
Legs up the wall.

I breathe.

Darkness retreats
Feelings regained
Gravity tugs me into its embrace
Thoughts connect
Reality draws in

Legs down
Deep breath
I rest.
Becoming one again with the body I once knew
And then I will rise.

I will rise,
And again I'll fall.
In this never ending loop
But finding serenity in this storm,
I will rise again.

This poem is a small peek into the everyday life for many Dysautonomia patients. Syncope or presyncope (fainting or near fainting) episodes like the one depicted above are often only one tiny piece of the symptoms Dysautonomia patients constantly live with.

Dysautonomia is an umbrella term to describe the various forms of autonomic nervous system dysfunction. The Autonomic Nervous System, or ANS, controls all of the functions your body should perform and maintain automatically like temperature regulation, digestion, blood pressure, hormonal balances, and lung function, and a whole lot more.
All forms of Dysautonomia  are wildly underdiagnosed, misunderstood, and underfunded.
About 1 in 100 people in the world have some form of Dysautonomia, yet 60% of patients are told by medical professionals that they are faking or have a psychosomatic illness.
This is why we need to educate and advocate for change.

For information and resources on Dysautonomia from Dysautonomia International, click here.
To find out how to get involved and help raise awareness by click here.
For profile overlays, banners, and informational pictures to use on social media to #makenoiseforturquoise click here.