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I appreciate Lady Gaga’s film  highlighting her Invisible IllnessesAs someone confronted with chronically painful days, the challenges of chronic illness are difficult to explain. Christine Miserandino does so admirably with her  spoon metaphor.  

Below, I offer a glimpse into how my invisible illness threatens to overwhelm my will and my zeal to live my personal life motto to live life in crescendo:

Slowly awaking, I realize that my blue sky with clouds ceiling is only half in focus. One eye refuses to open and with that dismaying realization the knifing pains hits.

No, please no.

I want to write today.

Turning over, cringing, I struggle to remain calm. The pain is a heavy boot repeatedly stomping on my head, pressing me into the mattress, daring me to move.  Vice clamps squeeze on both sides of my face, and it is all I can do to begin the now well-practiced technique,

Just breathe.

Panic threatens to engulf me as my body fails to adequately respond to that command. Oh so carefully, I sit up. Waiting.

As a survivor of years of crushing chronic pain, there is no where to go, nowhere to escape. Standing still, I wobble, gripping the bed rest. Moving towards the swimming walls, I reach the bathroom.

Think.

Focus.

I grip the faucet, pouring cold water to sip, then streaming hot water onto a cloth. Both will do little to ease the slicing pain, the increasing pressure on top of my head, or the facial tension as an invisible vise tightens my face. 

Sliding to the floor, I focus- just Breathe.

I slide beside the bathtub, filling now with running hot water. I must keep hydrated. Lifting the washcloth, I consider lowering myself into the bathtub, to keep the chills that invade my body at bay. Unwise. One time, my head slid underwater.

Instead, I crawl to the couch, grabbing a blanket always left there, and with no ability to get on, cover myself.

Breathe.

In.

Out.

Sitting there with half-glazed eyes, I am remotely aware of the escalating pain and pressure. Despite the summer day’s heat, I shiver. The automatic process of breathing has shut down, as it always does. I must concentrate on the simple chore of life-giving breath.

Moments pass.

Hours.

In a daze,  I sense the pressure swelling my face and body ever tighter. My body is totally engaged with this pain, surging now as if in a musical crescendo. Waves of fear overwhelm, crushing and suffocating me.

Dimly, I wonder if this is finally that moment – this is it.  This time is the last time. The pressure will break within, and my ultimate release will occur. Closing my eyes with grief, I quietly breathe out a goodbye of love to all my sons, my husband, my friends.

I live only moment by excruciating moment.

Later,  the room comes into a blurred focus. Breathing becomes automatic, as it is meant to be. The pain and swelling dam bursts, releasing a cascade of pressure flooding and pounding my whole body.

Often for days after, I will wander without energy or thought, unable to read, to laugh, to truly live.

Awakening each morning always begins with one thought:

Will this be a day of living an actively lived life;

Or, will this be a day of living a painful wasteland in a half-seen, half-felt, half-lived life?

When a new morning’s sunshine illuminates my bedroom’s blue-sky ceiling, my calm rhythmic breathing fills the room.

Turning over, I smile.

Today will be a good day to write.

 

 

 

Related

Chronic Pain Info FB

Invisible Awareness Week FB 

Spoon Shortage Sue FB 

And sadly, oh too many others to list,  but The Mighty is a good place to start.

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