Embracing life with chronic pain and illnesses.

Posts tagged ‘children’

A Flare Like No Other

Unrelenting pain

Coursing through every cell

The slightest touch exacerbates

Pressure from the softest cloth

Becomes a knife with serrated blade…

Skin crawling

Interrupted by nausea

Hunched over by the cramping

Right arm and shoulder on fire

My body a living pin cushion…

The light is overwhelming

Yet the darkest room offers no relief

No comfort to be found

A headache begins to form

Sensations are racing to and fro…

The intensity of symptoms

Raging and fighting…vying for attention

My brain is on overload

Waves of pain bombard me

My body sinks into the depths…

I take pause

To breathe deeply

Soft spoken words

Pleading for the slightest of relief

Peace comes to my mind…

My symptoms still enraged

As I am enveloped

By a sense of calm

Like a thick blanket

Renewing strength and focus…

 

 

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A Sense of Humor

Struck by the irony

I couldn’t help smile

Another lesson learned

With laughter from my mouth…

I knew this flare would hit

That it was going to overwhelm

No matter the preparations

No amount of rest would change it…

This morning I was given a gift

Unexpected and of great impact

Providing a brief window

To step outside of the intolerable pain…

I had done my part

Resting as much as possible

In anticipation of riding in the rig

To enjoy some time with my hubby and son…

There is truly no way to prepare

My body is its own prison

Yet it will not prevent me

From holding tight to opportunities with repercussion…

This path of chronic conditions/illnesses and pain

Is fraught with boulders, sheer cliffs, downed trees and more

Obstacles unimagined from the mind of health

It becomes the ultimate learning tool…

With overwhelming pain

Stabbing, searing, burning and tearing

Stomach cramping, blurry vision and headache

Lying down and praying for relief…

This flare will ease in time

Symptoms will once again manifest

In a more “orderly” fashion

Depending upon the combination of conditions…

I had gone to bed early

Anything touching my skin

Exacerbating my pain level

Simple prayer to beg for rest…

I knew I would be home bound

Legs heavy with slow methodical gait

Symptoms scream at the top of their lungs

A brief thought of riding in the rig…

Images immediately flash in my mind

Like viewing a video

I see myself saying a simple prayer

I am reminded of my promise to rest…

Caught and called out

I laugh and nod my head

Again amazed by an awesome God

Who shared some humor with me…

 

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chronic pain, hidden conditions, hidden illness

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Living with Hidden Conditions

The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us.  I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…

LivingwithHiddenIllness

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Completely Unprepared

No matter our chronic condition/illness, our lives and the lives of those around us are forever altered.  We are stressed to our breaking point. The emotional toll overwhelms. We are in the midst of the most intense storm of our life.

We are tested at what feels to be beyond our limits as we battle our way through the health care system, working with our doctors to find some sort of relief to allow us to have a life of some kind…our loved ones and those close to us witness this first hand.

We embark on a new journey that is dictated by our bodies…grieving who we were and had hoped to be. We struggle to adapt…to accept the fact that we might be home bound, unable to drive, barely able to maintain good hygiene…yet we do.

Like me, you might have to fight for SS Disability.  Even with the assistance of an advocate/lawyer, this can be an arduous task.  My route went through denials…to a hearing…taking 26 months to finally have the Judge rule in my favor.  All the while, watching our resources dwindle to nothing.

I am thankful to be at this last step…awaiting the formal notification that will verify the monthly payment and solidify medical coverage.  Yet I am bereft of emotion…feeling hollow, raw…an empty shell…praying for this wave to settle quickly…knowing that this journey is far from over.

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chronic pain, hidden conditions, hidden illness

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Blessings

I had the pleasure of having visitors yesterday.  Being primarily homebound, it truly brightens my day!  It provides contact when we are on the sidelines…it is a blessing to be taken out of the day-to-day normal.

During our conversation we talked about how school was going for our kids, they shared their struggles as families to adjust to the new schedules which now include sports activities, practice, homework.  Observing their dedication as wives and mothers, I was struck by a powerful thought…”Do they realize how blessed they are?”

I sat listening…mesmerized by thoughts of going to a HS Football game, driving kids to various activities, preparing family meals. It was like a movie playing out those words as images flew past…again the powerful thought…”Do they realize how blessed they are?”

My brain has been so very thick with brain fog or Fibro Fog that it is next to impossible to put words to my thoughts. It has been a huge challenge to speak…but I could not ignore the seed that had been planted.

I am compelled to share some of these blessings:

  • Having more than one child.  (Do not take this wrong…being a parent of an only child is a huge blessing also!)
  • Driving your children to activities. (It is truly amazing to be able to get into your car and go! No day before and day of resting and naps to have enough stamina…not to mention the required ability to focus.)
  • Preparing family meals. (This act takes SO much energy…only the simplest of meals is made in our household…and that is after hours of rest.)
  • Attending after school activities like a HS Football game. (This is a dream…to be able  to drive to the game…to walk to the bleachers…to sit and cheer.)

What can appear to us as routine, mundane or hectic is often a blessing in disguise. It can take losing one’s health to fully realize the every day blessings that surround us.

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The Glistening Ray

Looking out the window

I watch the leaves dance

In the gentle breeze…

Moving to and fro

The shades of color shift

From dark to light and back again…

The sun’s rays make the leaves glow

Reflecting the rays like colored mirrors

The radiance adding depth to the color…

The rays permeate the trees

Cascading through the leaves

To dissipate into the depths…

My eyes are drawn back

To those top most leaves

Dancing with the rays of the sun…

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Mindfulness

My Clinical Psychologist introduced me to a powerful tool to add to my arsenal. It is called “mindfulness”:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

She walked me through a breathing exercise…complete focus on the breath itself…feeling the cooled air entering my nose…feeling it hit the back of the throat…feeling the rise in my chest as the air enters the lungs…feeling a second, subtle rise of the chest before exhaling…feeling the warmth of the air as it leaves the body.

I was then read a short story about washing dishes, from “The Miracle of Mindfulness”….I will share just one paragraph that sums up the idea of mindfulness very well…

“…If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not ‘washing the dishes to wash the dishes.’ What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future — and we are incapable of actually living one minute of life.”

I applied this during my walk outside this morning. I took the time to not just see the sun…but to, really, “see” it! I felt its warmth…the rays touching my skin…the brightness shining…the reflection on the leaves. I felt the slight breeze…ever so gently twisting and turning the leaves in the trees…the slight movement of my shirt being pressed against my skin…the movement of the hairs on my arms…

It was truly amazing!! My focus was dramatically shifted…momentarily transported into the present time…fully embracing and experiencing what was happening around and to me.

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Patience

As day nine post pain pump surgery begins, it strikes me that my pain specialist really did a great job in preparing me for this! I truly was ready to be homebound for the first two weeks. I was mentally ready to be patient with the process! What a thought!!

My thoughts are still muddled at times…very hard to keep on track. Yet…I can just smile and breath deeply…there is nothing that I have to do…except allow my body the time to heal….allow the scar tissue to build near the pain pump and the catheter.

I am able to step outside now…slowly and carefully with my walker. I do not venture very far…it is just a few steps to feel the touch of the sun on my skin…feel the slight breeze…see the brilliant colors! This is a treat that I enjoy once a day…in the mid morning. It is perfectly timed between rest breaks.

I am thankful that I am able to listen to my body…to sleep when I need to…to relax in my recliner (sitting in the chair…cannot put the foot rest up yet).  My chair is just high and firm enough that I can get to a standing position with my walker as support. I know that I am not yet ready to sit or lie down on the couch.

I am getting anxious for my follow up appointment…I am excited to hear the plan my pain specialist has in mind…it will be interesting to see just how easy it is to remain patient! : )

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Discouragement

It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!

We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!

You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…

Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…

I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be.  Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!

Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.

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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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