Embracing life with chronic pain and illnesses.

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Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

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My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

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chronic pain, hidden conditions, hidden illness

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Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

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chronic pain, hidden conditions, hidden illness

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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…

© Stacey deSoto — 2018

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Awake?!?!

The beauty of the sky

The myriad of colors

The sounds of life abound

Even with the ever ringing in the ears…

It is as if I had been in a lifetime slumber

My senses forever dulled

Reaching upwards for help

While overwhelmed in quicksand…

Illness strips us of the familiar

We are thrust into the unknown

Each step taken as with a blindfold

Hands outstretched groping in darkness…

Our medical teams struggle

Conditions and illnesses so misunderstood

Further muddled by myriad of symptoms

Each of us so different from the other…

We search for answers

Yet try as we might

We find health elusive

Stripped from us and locked away

Secreted in the darkest, farthest corner…

We are tried and tested in ways indescribable

As words are a shallow testament

To the inner symptoms that abound

Forever changing and challenging…

 

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Emotions

Below the surface

Threatening to erupt

writing-with-pen

The inevitable struggle

Whether recognized or not…

Why is there such stigma

An artificial wall per se

Associated with our feelings

That cause me to hide…

For some emotions are friends

The ability to interact

To easily express

I think you have a special gift…

To me the intensity

The incredible raw power

Harnessed within its grasp

I would rather not feel…

I channel in pieces

Through writing

The emotions that

Are churning within…

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It’s Okay!

I awake in the early hours

To the throbbing and stabbing

Coursing through my body

I take leave to crawl into a hot bath

…It’s Okay!

As we watch a favorite program

Sleep overtakes me

Unable to keep eyes open

I have no strength to fight

…It’s Okay!

Plans are made

To spend time with friends

Nap taken and extra rest

Do not prevent a flare

…It’s Okay!

Apologies sent

No need for self doubt

There will be other chances

Our family and friends understand

…It’s Okay!

Hidden conditions are in control

Our bodies dictate actions

We are forced to be patient

To live within the invisible boundaries

…It’s Okay!

There are times we cry

We battle with frustration

We struggle with isolation

We wrestle with guilt

…It’s Okay!

We cry out to God

For His peace and comfort

We hold tightly onto our Faith

Knowing our path is fraught with boulders

…It’s Okay!

We deal with thick brain fog

With vision that can blur

Often unable to remember

Or use incorrect words

…It’s Okay!

 

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Dry Tears

The incredible stabbing pain

Coursing through my groin

Burning as with flames

Eagerly licking the dry wood

Growing higher and hotter…

Thinking is muddled

As distraction is impossible 

No measure of stillness

No medication can calm

The overwhelming sensations…

I cannot hide the grimaces

Moans escape on their own

For I am not aware that I made them

As the searing knives slice my flesh

And the ice picks pierce through…

Tears are not falling

Dry eyes hide the truth

That which is hidden from sight

No image depicts the war

That wages within…

If only the pain 

Could be captured on X-ray or MRI

To be shown as the cruel dictator it is

The thief that has taken so much

Yet is never satisfied with its spoils…

To hope for a less painful tomorrow 

Not knowing what will come

Grasping for breath to attempt to dispel

The downward spiral 

Of a body out of control…

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Wave Upon Wave

As the waves

Crash upon the shoreline11803762-sea-waves-breaking-on-the-rocks-stock-photo

So the waves

Of pain cascade throughout

Transforming every nerve

Into a volatile eruption

Senses overwhelmed

As spasms wrack an all ready tired frame…

Relentless crashing against the rocks

The waves continue to pound

As a hammer yet without mercy

Pounding and changing the shoreline

Demonstrating such power
As it rewrites the coast line

So with the intensity of pain

Every fibre of our being

Crying out…rather screaming

Albeit a silent scream

Unheard by human ears…1081-1242414452ggmy

Tide pools are hidden

As the waves come in

The tide ever rising

The sand disappearing

Its watery blanket

So the transmission of activity

Nerves not relentingThe grimace…the groan…

The feeling of weakness

The tears that well up

That refuse to fall

Release from the tight grip

Wishful thinking…forcing a bowed head

Prayers for relief

Just the slightest…please…

Waves continue

To batter the shore

The intensity will

It must refrain

This heightened level will not keep

As prayer for strength

To navigate this path…

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Renewal

A new year approaches

Hopes and opportunities abound…

As the current year comes to an end

We look back at the many twists and turns…

The struggles that have made us stronger

The events that have brought us closer…

What will the new year bring?

No one knows for sure…

Yet our hearts are filled with hope

With light hearts and open eyes…

We embrace the start

Of a year not yet written…

It is a renewal of sorts

To take place on another stage…

The paths that will open before us

The mountains we will climb…

The challenges that await us

Along with the joys and laughter…

Our illnesses and conditions

Will continue to be with us…

As we continue our battle

Our eyes more alert, our resolve strengthened…

Let us take advantage of this new year

To choose to be positive…

To resolve to appreciate those dear to us

To take every opportunity to say “Thank You…

To embrace our loved ones and friends

To say “I love you” with sincerity…

To refrain from anger

Instead breath deeply and count to ten…

To really listen to what is being said

Rather than thinking of what we will say…

To pray with our entire being

Instead of uttering memorized words…

To share smiles and laughter

To not allow pain to be our master…

To be thankful for our life

To embrace each door opened by Heavenly Father…

Knowing that He is with us

Every step of our journey…

Remembering the scripture, Isaiah 40:31 KJV:

“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

We may not be able to walk far

We may be confined to our bed…

We may find ourselves fatigued

Unable to keep our eyes open…

Know that our spirit is renewed

Granted strength from Heavenly Father…

We can pray for those around us

We can lose ourself in reading the scriptures…

We can remember the trials of Job

And know that we are never alone…

So as this new year approaches

Let us each take pause…

 

To awake each day

With a thankful heart…

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