“When life knocks you down you have two choices- stay down or get up.”
~Tom Krause
November 7th. I woke up feeling good. I love my new church and waited for meds to kick in to shower and go. With Stiff Person Syndrome, that "feel good" feeling can change on a dime. (I lost that loving' feelin.')
Being a little on the chilly side outside, and with my SPS angst of getting "ready, set, go" with out of the house preparations, minor back ripples announced a danger possibility as I adjusted the shower water to hot. Alone, I laid my SPS battle gear on the back of the toilet: opened medications, cell phone, telephone, and towel. Feeling somewhat bolstered, I stepped into the shower.
Hot water ran down my rigid spine as I soaped my hair with one hand while I white-knuckled the soap handle with the other. Occasional ripples converged into full-blown torso spasms as I heard my mentor, *Stephen, coach me that only ground zero will break the clonic spasms. (So the SPS tinman falls.)
Somehow, my shaking hands managed to grab a few "as needed" extra meds as I slid to the tub floor on my side. As my body hiccuped with the dissipating spasms, I was still white-knuckling the soap handle. A recession boon--Admission to the shower thrill was free!
I managed to turn off the water with my foot as I lay on the tub floor to give my medication a chance to find its way to my errant GABA. Cool air caressed my skin in SPS aggravation, sorta like a very unwelcome advance at the drive-in with an algebra geek pity date?
Pulling myself into a kneeling position, (It was Sunday and I was praying.) I shimmey-shook as I one-armed rinsed my hair and bathed. A hammer and chisel-wielding Hulk would not have disengaged my stronghold on the soap handle.
The next hour was an interesting battle of staying up vs going down as I dressed my rebellious body. Settling in my rocker, I soothed frayed nerves and rested stressed muscles as I mentally prepared to leave for church.
My soul was blessed by the music, message, and new friends, but major fatigue set in over the morning's struggle. After choosing to get up, an afternoon nap was my choice to stay down.
*Stephen was a beloved friend to many with SPS, teaching me about SPS quirks with his 30 years experience of living with the syndrome. Ironically, I understand his untimely death was not due to SPS.*
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