When they say it is progressive, they mean it.
Last updated: March 2021
When they say you have Primary Progressive, they mean it.
It has a habit of progressing. The last few weeks it has changed course on me. It has become a tidal wave of intense sensations, a tornado of electricity. It's cacophony is thunderous.
I used to be able to tell people each symptom in precise detail
I could describe it as a large color palette. Each color a feeling, a symptom. Now, the colors have swirled in a large bowl of water. The colors morphing, spinning out of control, into shades unrecognizable. Unfathomable.
It's not what it once was
I want to phone my doctor. I want to beg for help, as it is not what it once was. It is not what it’s supposed to be. What is, is a beast that holds me tight, it’s claws dig deep. It looks me in the eyes, it’s narrow slits gleaming with anger. Gnashing it’s teeth and snarling with malice.
Enduring primary progressive
Yet, I know I cannot phone my doctor. As there is nothing they can do for me anymore.
I try my best to make peace with it, to give it a place. Yet my shelf is not big enough anymore. There is just no more room to hold it.
I close my eyes, trying to endure. Hoping for a chance to breathe. Yet it is relentless, it’s hunger never abates.
Do my body and spirit have the strength?
The life that we live, it will still be there. I know this, but does my body have the strength, will my spirit stay true?
Only time will tell.
I will fight
But I do know this, I will never give in. I will never let it win. I will look back into its eyes, I will gnash my teeth and snarl with a vengeance. And I will scream, scream with all my fury.
I will fight. For this is my life, this is my body and this is my soul. Mine.
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