The moon as a ball of light eerily peering through the heavy cloud and dark trees…
The moon as a ball of light eerily peering through the heavy cloud and dark trees…
It seems an eternity since I was actively writing about the changes chronic conditions and illnesses have brought with them.
When I experience the thought of “maybe I have reached a plateau”, it appears that all heck will break loose! I am sure that I am not the only one who is caught off guard with changes in symptoms and side effects from the medications, including new symptoms or expressions of our many conditions and illnesses.
Stress is such an enemy yet it is around us at all times. It can manifest in so many ways…being forced to stop at every red light, moving (buying/selling), interactions with others (good and bad), experiencing symptoms and side effects, etc.
Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Spastic Colon, permanent Colostomy, IBS, Gastritis, Sciatica, Neuralgia…these hidden conditions have radically changed my world. I have accepted and am learning to live within the boundaries of my Disability…which includes being primarily home bound and driving to town (15 miles) 2-5 times per month (with my son as escort). This journey from working full-time, hunting and fishing with my husband and son, never thinking twice before hopping in the car for a drive, playing outside with my son…has been very hard. Faith, family and friends have carried me to this day.
A few of my “new” rules…
Breathe Deeply –this is beyond just the act of breathing. For example, when I step out onto the back porch, my eye is drawn to the leaves dancing on the most gentle breeze…I pause to find my mind joining the dance…the breeze softly brushing against my skin…I am carried away for a moment…separated from my constant companion, Pain.
Play with Brain Fog –this means handling the forgetfulness, stopping mid-sentence, repeating sentences, using the wrong words, inability to retain or understand new concept, etc. with a smile! So far this is the hardest to implement. Perfect example, I walk in to the bathroom, hmmmm…I turn and begin to leave…smile…tell myself it’s okay…will remember soon! Repeat at least three times….then upon the 4th now labored trek, I smile as I reach for my toothbrush! Wohoo!! I did it!!! I brushed my teeth! FYI –many prayers have and will continue to be said at this time…including asking God to help me remember and to not be hard on myself.
Ask for Help –clearly understanding my limitations and adapting. This means calling a friend to drive to a doctors appointment or injections. This has given such wonderful time to talk and catch up…and removes the stress of a drive.
I have chosen to embrace this opportunity to live slowly, to adjust expectations, and to enjoy every moment I can with family and friends.
This title makes me smile
As I attempt to relay my reality.
Complex sentences, vibrant words
I can see and feel…yet not express.
Words jumbled and sentences started
To be left hanging as I slowly shake my head.
Fibromyalgia and many of its “companions”
Overload my brain causing words to collide.
I pray for grace and strength
As I struggle to remain calm.
Images of “how it used to be”
Flashing in my mind’s eye like lightning.
Simple conversation and odd pauses
Exasperated by stress…good or bad.
Typing helps bridge this divide
As words appear on screen…
At the onset I had given myself permission
To write as if there were no grammatical rules.
My mind goes to our son when a Tiger Scout
An active mind so easily distracted…
Another mother summed it up — “Squirrel”
Attention span gone, the hunt is on.
Flighty and crafty, darting about
On the search for one of its stashes.
I smile when our teenager gently corrects
Better yet when he supplies the word I am unable to find.
Chronic illnesses/conditions force reform
Reminded of how we are but clay in the Potter’s hand.
Let go the frustration
Dive deeper into prayer…
Handing over the reigns
Trusting with our heart.
Deep breath taken
And laugh at the squirrel.
© Stacey deSoto — 2018
How dare you begin with such a roar!
This month of May is a Lion…
Roaring, growling and then standing proud.
No matter how hard I try to prepare
The end of April starts the roller coaster.
Seasonal allergies will kick in…
Like a last ditch effort to switch gears.
The pinched nerve in my back reared it’s head
Hoping to derail the oncoming storm.
This year was different!
The anniversary of your death, Dear Sis,
Felt like a fuzzy blanket
Wrapped tight about.
The ache of your absence still strong
Yet ever stronger the feeling of your presence.
Within a handful of days
Wishing Mom and Dad “Happy Anniversary”!
Then the greatest news from U of O Law School,
The first Carrie Murray Memorial Scholarship has been awarded!
Wave after wave of emotions…
Your birthday is just around the corner…
I see those brilliant blue eyes
Filled with a true zest and love of life.
Memories will continue to flood our minds
Strengthening our resolve
To celebrate your life and memory.
You are watching from above
Your touch felt by ray of sun or touch of breeze.
Love you, forever and always, CareBear.
As my body calms from the latest Fibro Flare with additional infections that I am prone to have, I am riding an emotional roller coaster.
I know that I am not alone…
We arise each day to slight differences in our symptoms. Our hidden illnesses and conditions exacerbate our pollen/tree/etc. allergies, or rather overly sensitivity to said allergies. The beauty of Spring comes full during May…flowers, trees with blossoms, bees buzzing, birds chirping…
I am hit with emotions…
April is coming to a close…May is on the horizon.
I used to find myself reminded of the short rhyme — “April showers bring May flowers”…this is especially true of the Pacific Northwest. I look out the window to see the snow loosing its grip on the mountain and see the many buds on the trees outside. Yes, May is approaching quickly…too quickly…
This roller coaster of emotions is not new…it has changed over time…it will continue to impact in different ways.
I am not alone in feeling this sense of loss…raw emotion…tears welling…memories are stirred…
I do not want to be reminded…
I could feel your presence yesterday afternoon…I was given the greatest relief of my stresses/worries. I was powerfully overwhelmed by the greatest peace. I had to smile! I could hear my sister’s voice… “You are such a Dork! Remember that you handed the keys to God. Now step back and listen.”
You always knew what to say…accented of course by the eye roll…or the slight throw back of the head…
We will relive those emotions associated with our loss and Heaven’s gain…
We will each celebrate the memory of your life…my dearest sister, Carrie Murray…while we embrace those close to us.
Love you, forever and always, Sis!
Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:
“I am going to make sick look good!”
My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.
Those of us living with Fibromyalgia and its chronic pain (or chronic pain from other conditions) often find ourselves ravaged by a storm…literally! Scientists can argue that there is no relation…that it is not possible. Yet we know there is a link.
Our bodies shut down with no warning. Struck in the gut with a baseball bat. Then the pounding truly begins…every joint stabbing…headache is piercing. Every ounce of energy invoked to attempt movement…feet act as though they are trapped in the thickest mud…legs groan at the beleaguered motion.
Tears well in my eyes. I can barely manage a weak good night as I muster all effort into shuffling back to my bed. Past experience has taught me to not fight this demon. It is best to lie down…propped with pillows to provide as much relief as possible.
This will pass. I am hopeful for the morning as the worst of this storm will be over. My body will be exhausted and require additional rest.
This is a vicious cycle that so many of us live with…as we continue to battle our conditions and symptoms.
Rain brings an increase in temperatures
As it washes snow off the lava…
Rain brings the wind blowing the tree limbs
While cascading the water down the glass…
Rain brings the storm from the Northwest
As it batters the roof and races down gutters…
Rain brings increased ringing in my ears
Drowning out external sounds with its deafening pitch…
Rain brings the joint pain out of remission
Removing the relief of the higher elevation…
Rain brings elevated pain levels
As my body screams out for it to end…
As the sun sets
Majestic colors blanket the sky
The clouds seemingly ablaze
Before giving way to darkness…
So goes my battle with chronic conditions
The intense battle of the past several years
Is giving way to renewed hope
The darkness of unimaginable pain
Has lost its heavy grasp…
So goes my battle with chronic pain
The heartfelt prayers of others
In tandem with my own
Clearly demonstrate God’s hand
As I find myself filled with great anticipation…
So goes my battle with life changing illness
The precious gift of understanding
Provided by my medical team
Peace is granted in knowing
There are no answers…
So goes my battle with unknown conditions
The complexity of ailments
Magnified by extremely, overly sensitive systems
Prevent the use of most medications
The few options have been skillfully used…
So goes my battle with controlling symptoms
Addressing conditions that could be calmed
Along with carefully choreographed days
Fan the flame of hope restored
To embrace my “new” altered self…
So goes my battle with my new reality