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Being healthy requires a state of mind that focuses on joie de vivre. But Being physically healthy often comes and goes.

Being full of life’s joys must Not.

As someone confronted with chronically painful days, I appreciate the effort to highlight Invisible Illnesses during the week of September 26rd. The challenges of chronic illness are difficult to explain. Christine Miserandino does so admirably with her  spoon metaphor.  

Below I offer one day, a day that offers a glimpse into balancing health issues with living well goals, especially  as illness threatens to overwhelms my will and my zeal to live my personal life motto- 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 wanted to write today.

Turning over, cringing, I struggle to remain calm. The pain is a heavy boot stomping on my head, pressing me into the mattress, daring me to move.  Vice clamps squeeze on both sides of the face, and it is all I can do to begin the now well-known technique- just breathe, in and out. 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 an enduring survivor 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. Gripping the bathtub tap, I sip cold water, then, stream hot water on a cloth. Both will do nothing to ease the slicing pain, the increasing pressure on top of my head or the tightening face vise.  I must keep hydrated.  I sink down beside the bathtub, filling now with running hot water. Lifting the washcloth, I consider lowering myself into the bathtub, to keep the chills at bay that invade my body. Unwise move. 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. And wait. The automatic process of breathing has shut down, as it always does. I must concentrate on the simple chore of life-giving breath.

Danil Dante

Each moment passes in a daze as the pressure swells my face and body as clamps clutch my head 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 last time the pressure will break within, and my ultimate release will occur. Closing my eyes with grief, I quickly breathe out a goodbye of love to all my sons, and my husband.

I live only moment by excruciating moment.

Later, with some wonderment, the room comes into a blurred focus. Breathing becomes the automatic response it is meant to be. The pain and swelling dam bursts, cascading 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 wandering in wonderment, living an actively lived life;

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

When a new morning’s sunshine illuminates my focus on my bedroom’s blue-sky ceiling, the calm rhythmic breathing of my husband and my own fills the room.

Turning over, I smile.

Today will be a good day to write.




Related: Brain Less Blogger

Invisible Awareness Week FB 

(Photos Spoon Shortage Sue FB )