I Don't Do Mornings

"If people were meant to pop out of bed, we'd all sleep in toasters." ~Garfield

"Pre" SPS, I would wake up at 5:00 AM, shower, make my bed and lunch, arouse a sleepy and grouchy toddler, dress her and make her bed while the commotion awakened her older brother to get ready for school. Then--a dash to the babysitter, a prayer for no train at the railroad crossing, and clock in at my usual two minutes before the 7:00 deadline--early for work. One of my friends greeted me one morning with, "How can you always be so perky so early in the morning?"

Well...I still wake up at 5-6:00 AM, mentally. My SPS body is indifferent to the adage "the early bird gets the worm." Frankly, my body does not care if there are leftover worms.

I work on my morning warm-up which is feet on the floor, body remaining vertical en route to my first bathroom trip of the day--without event. Morning meds follow coupled with a quiet time to allow for peak efficacy...turtle pace without spasms.

Morning appointments can throw my routine into an SPS free-for-all tailspin. Locked muscles, back ripples, and increasing angst over making it on time make clock-watching seem like a death row midnight vigil. Mentally lighting my oomph candle, I chant, "Free Debbie!"

I had my infusion yesterday morning. It has to be morning because an infusion is a several hour process. I woke up feeling well, but the dreaded 'get up and go' kicked in my symptoms as I allowed myself four hours to prepare for my appointment. I showered the night before. Hair was just brushed and makeup was minimally applied. I managed my clothes, but shoes were an obstacle. I allowed myself a couple of 15-minute breaks to calm excited muscles as I chugged 3-4 bottles of water in preparation for my infusion.

Leaving an hour early, my body trembled slightly as I left pulling my food, drinks, reading materials, purse, and glucometer in a surrogate walker disguised as a computer case with my hiking pole in the other hand. My body jerked slightly as I got my gear and rear into the car.

Listening to an oldie station, my body settled as the hard part was temporarily over until I arrived at the parking garage. Luck was with me yesterday. A handicapped parking space three over from the door and elevators! (Available handicapped parking spots at hospitals are for another post.)

My veins were pumped. The IV was easily started an hour after my appointment, but my infusion went without a hitch. As I was released, my body was in a totally different temperment than when I arrived--it co-operated. It was afternoon. Like Garfield, I don't do mornings.

Graphics Hunt

Copyright © 2010

My Strong Refuge

"I am as a wonder unto many, but thou art my strong refuge."
~Psalms 71:7 KJV

Part of my emotional coping is my spiritual faith. I enjoy a quiet time in the morning reading Scripture and praying. I relate to King David and enjoy his writing in the Psalms.

When I read the opening verse, I smiled. With SPS, I am "as a wonder to many," myself included. I loved David's recognition of God being his strong refuge. It is how I feel. Whether alone, happy, sad, scared, or uncertain, He is always my strong refuge.

Copyright © 2010

Stay Down Or Get UP

“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.*

Copyright © 2010

A Date With Solitude

"I think that I cannot preserve my health and spirits, unless I spend four hours a day at least - and it is commonly more than that - sauntering through the woods and over the hills and fields, absolutely free from all worldly engagements." ~Henry David Thoreau

With SPS, 'sauntering' would be an achievement and four hours in the woods would be a news-breaking star search for me by the 911 rescue team. (I wouldn't get far!)

To maintain physical health, I need to nurture my spirit, and that requires times of solitude. Yesterday was such a nurturing time, a date with solitude.

Starting my morning with a wonderful dose of soul food at church, (wonderful message and stirring music), I stopped for a Subway $5.00 special. Recession savvy, six inches for lunch--six for supper, compliments of a gift card from one of my children.

I felt good, light, free...a delusional moment from my SPS reality. After savoring my lunchtime portion of Subway's Spicy Italian, (Sounds like a hero from a romance novel.), I donned my new lightweight walkers, grabbed my two hiking poles, and headed for the tranquility of a walking trail discussed at church.

Meandering along the river, ancient oaks provided an occasional canopy over the trail in cooling relief from the afternoon sun. In a shock to me, I crossed the road to access the trail with ease. Emboldened with my feat, I started walking along the trail, enjoying the faint breeze caressing my face.

Sometimes my body remembers how to move with a rusty fluidity pre-SPS. This brief respite allowed me to enjoy the beginning of my walk--sparkling water gently lapping the shore, the intermittent shriek of a sea gull, the rippling splash of a jumping fish, greeting a sporadic walker--feeling almost normal.

SPS sensitivities noticed cracks in the sidewalk, deep chasms to syndrome perception. Dips in the sidewalk resembled alpine declines. SPS paranoia lingered under the surface of my pleasure reminding me to breathe...slow, deep breaths.

"Good" is a window of time for me or a math equation. Medication + exertion = a set time. Reaching a point I mentally designated as halfway, I turned to go back. SPS is unpredictable. My perception of the same walk on my return was completely altered. Unnoticed expanses of open space emerged, coupled with the energy I had already exerted, made my return a challenge.

Breathe deep and slow, stop, bend and stretch my back. Stop, sit on this stump. Go to the next tree. Stop. Rest. Go to the sign. Stop, bend, breathe. Look down, look over the water. Stand still. Breathe. Crossing the road to my car loomed in my mind as the final major challenge. I prayed. Reaching the dreaded crosswalk, a woman was taking out her garbage from across the street. I asked her for help and she navigated me across the road.

Back in my car, I exhilarated in my walk with a toast of my remaining bottled water. "In spite of" SPS, I enjoyed the tranquility and beauty of the place and found healing comfort in my solitude.

After the fear threat subsided, the walk had limbered me. Feeling triumphant and deliciously feminine, I ran a hot bubble bath, (not too full), with a cranberry soap. Dimming the lights, lighting scented candles, and playing soft mood music, I soaked and thanked God for a wonderful day of solitude, life, and living.

Solitude was not only cathartic but a fun date.

"We live in a very tense society. We are pulled apart... and we all need to learn how to pull ourselves together.... I think that at least part of the answer lies in solitude." ~Helen Hayes

Copyright © 2010