Embracing life with chronic pain and illnesses.

Archive for the ‘hidden conditions’ Category

A New Year

As 2019 is well underway, my son and I are now on our own. My husband could no longer handle being around me….as I am a shell of my former self.

This new reality took some time for us to adjust. Now we find ourselves with our own routine…including me joining my boy and the dogs in the Family Room to watch movies or watch him play a video game. The couch provides such a cozy place to relax!

My weight loss has stabilized thankfully! All of the stress wreaked havoc on my all ready weakened body. Fibromyalgia, Polyarthralgia, Spastic Colon, IBS, Sciatica, Sacroiliac Problems, Pelvic Floor Syndrome, and the list goes on. These have taught me to be a fighter!

I hold tight to my Faith, Family and Friends. Having such a great support group helps tremendously!

My focus is on my high schooler and watching him develop into such a terrific young man! I am anxious about the next couple of years as we submit applications to colleges and work with school counselor to apply for scholarships! I know he will qualify for financial aid, yeah!

What great new adventures await us in this New Year?!

Silence

As the snow deepens

The silence grows

As if time is standing still…

My mind is refreshed

As this quiet seeps to my core

Banishing all doubts and fears…

The clanging in my body

Fights the stillness found within

I close my eyes to return to the calm…

The falling snow builds

My mind again quiets

The screaming in my body subsides…

Such a blessing is granted

To reaffirm Faith that is tested

My soul is stirred…

Eerie Lights

The moon as a ball of light eerily peering through the heavy cloud and dark trees…

Long Absence

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.

My “New” Rules

Breathe Deeply

Breathe in deeply to fully take in the beauty that surrounds us.

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.

“Squirrel” Brain

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.

Heartache, Struggle, Persevere

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…

Crying…laughing…singing!

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.

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