(Agnes Toth, Empathy. Source
I'd love to track down a print of this, but I couldn't get her site to load.
If anyone knows, or can get the site to load and check, that'd be cool.)
Today has been a fatigue and pain filled day. It feels piecemeal. My exhaustion and irritation morphing into an aimless picking at life. A bit here a bit there, and disatisfaction all around. Read every third word of this paragraph and try to understand what has been written. That is what I use to explain it, to the well people in my life. The fragments fail to coalesce and you are left with a hint, or an echo of the intent, of the day. So I wrote, as I am want to do in these states. The fatigue of chronic illness is unlike any other. There is a weariness to the soul as much as the body from unrelenting waves of illness. Even the most prepared and sanguine patient feels this from time to time. You can run from it, and pretend it doesn't exist, but it'll catch you, and pin you down, eventually. And then like the painting above you are forced to search for meaning in the pieces. We are hardwired to find the gestalt, the global whole. There is a pressing need for understanding and balance. And for me it is found in the writing and sharing of the experience.
Today has been made up of snippets.
A little piece here.
A little piece there.
My day broken into unconnected activities.
Things started and discarded.
Only to be picked up an hour or two later and discarded again.
I try and fit all the pieces together.
To piece together my day.
To find continuity.
To account for all the time that has passed.
Only to come up short.
Tired fractured thoughts
Equal tired fractured activities.
The weariness of activities undertaken on the days prior.
The weariness of pain.
The weariness of the drugs used to take the edge off the pain.
The weariness of existing in a broken body.
The weariness of not being the you that exists in your mind.
The weariness of a mind that
Confined within a body that is not.
So I start to type and stop.
I open up my email and close it.
I try to stand and quickly lie down.
I make it to kitchen and look longingly out the window and my sun-filled yard.
Back to my default position,
Supine on my bed.
Propped just right.
Down to the exact millimeter and exact angle.
To manage the pain.
And the blood pressure.
And the nausea.
And I pick up the new pack of post its.
I take off the plastic wrapping.
But can't find my pen.
The pen that is right.
The only one that lets the words flow.
So I toss them on the sheets next to me.
Irritated and defeated.
To pick up my phone
And mindlessly scroll through.
Little more than a blur of colour.
Names and images fail to register.
Until it too is tossed aside
To sit next to the notebooks
And pill box
And empty silver squares
Crumpled in anger at the nausea the contents control.
I flick through the channels on the television.
I'm not watching.
No details emerge.
Yet I know
All of it grates.
Nails on a chalkboard.
Ice scrapped in the freezer.
Tearing at already frayed nerves.
Because nothing fits.
When you are in the midst of exhausted,
So I reopen my lap top.
And start to tap on the keys.
And write down the snippets.
Of which this is one.
And try to piece together my day.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.