Embracing life with chronic pain and illnesses.

Archive for February, 2016


Failure…..Webster defines it as “1. an act or instance of failing or proving unsuccessful; lack of success. 2. non performance of something due, required, or expected. 3. a subnormal quantity or quality; an insufficiency. 4. deterioration or decay, especially of vigor, strength, etc….”

Each of us deals with failure or feeling like we have failed at some point in our lives.  It could have been the first time we tried to ride a bike….only to find oneself falling over time after time…unable to stay up.  It could have been one’s attempt to learn how to hit a baseball….swing to miss….swing to miss…

These memories or times in our lives proved one thing to us.  If we continued to practice….continued to pick ourselves up….eventually we were able to master (or somewhat master) a new skill.

Now taking this a step further……I find myself in a very difficult situation….I am living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/Pelvic Floor Syndrome/Spastic Colon/Colostomy and ALL their related symptoms.  Because of all my underlying internal issues, I cannot take medications that would help “jump start” a recovery path for my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder.

I have left specialist after specialist….doctor after doctor….and ultimately a medical university team scratching their heads……..nothing at all that could be offered to me…..only looks of compassion.

Time and practiced patience….commitment to being as positive as possible…..daily attempts to maximize rest….gently stretch and to attempt movements…all while enduring all symptoms that my conditions can throw at me.

Amidst all of this, there are times that I struggle with an overwhelming sense of failure…..the sense of letting those dearest to me down.  After all, I can no longer work, so I have added an extra layer of financial stress to my husband.  Our son has never experienced a “healthy” Mom, so he has had to bear more responsibility than a child should.  There is not an aspect of my life…our our lives that my conditions do not impact!  This is true for ALL of us battling chronic illness.

These feelings of failure ARE fleeting….even though they seem overwhelming while we are in the midst of this emotional meltdown!  We may not share or show these feelings….I know that I do my best to conceal them….I do not want to worry my husband and son any more than they are all ready.  I choose to express through words….to release any negativity by sharing with others that are dealing with the exact same roller coaster.

We are not where we would have planned to be….we are not living life like we had dreamed….yet…I know…we have NOT given up!  We are still dreaming and planning for that day…..the day when our conditions are under some semblance of “control”.

Each of us is traveling our own “pain path” that will be wrought with twists and turns….ups and downs…..slips and falls…..there will be times of frustration….of failure….of despair….and even times depression.

Remember to use the tools at your disposal….watch a funny movie or your favorite movie….paint or write…..sit outside in the sun…..take a nap……allow yourself some form of distraction….of relief….and do not torture yourself over those feelings!  In doing so you will return to yourself…..your feeling of “failure” will lose its grip….you will once again be invigorated to continue with your efforts to contain your pain and many associated symptoms.


as this tree
This mountain

This ground

Is captured

In a moment

Frozen in time…

So are my thoughts

Your bright blue eyes

That match the sky

Your infectious laugh

The strength of your hug…

My mind is drawn

To the last time

I saw you….

When you were

Still physically with us

The bright blue sky

The day was hot

Your excitement was infectious…

I then pause

My mind freezes

You are gone…

What?  Why?

That moment

That phone call



Frozen in my mind’s eye.


The bright sun

Casts its light

On the small buds

Forming on the trees.

I feel the change

The warmth

Through the window

The warmth on skin

When I stepped out

On the porch.

Snow still surrounds

Slowly retreating

Giving way to

The change of season

Soon to come.


Living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. test us each and every day.  We struggle with new symptoms….we struggle with sleep….we lose a part of ourselves as we push to regain some semblance of “normalcy”…..

I, for one, have a LONG way to go before I will be able to say that I am gaining on “normalcy”! LOL  I am on the path….the long….hard….twisted path that each of us must travel.  Each one is unique….some have more twists….some more hills….some more mountains to climb.

Now I find myself dealing with nightmares and dreams so vivid, I awake afraid…..I am afraid to sleep….for fear of seeing more of these!  Yet….I know I must relax….comfort my inner child….and attempt to provide confidence to sleep…..at least attempt sleep as best as possible!

These dreams are a further realization of the battle that rages within my body.  I am taking on all aspects of life in my dreams….from losing our home….to getting separated from my husband and son…..to battling zombies alongside my Sister who has passed (this is one of the rare GOOD dreams!)….to crawling through tunnels (I am claustrophobic)….to having no appliances (I am a permanent colostomate)….to death of loved ones…

These are more vivid than any I have ever had…..they develop during those rare hours of sleep…..followed by at least an hour of quiet prayer….to attempt to regain some calm….some hope of capturing a few more hours of rest…..

Another “battle front”….another symptom of a fatigued, overwhelmed body…..an over-reactive, hypersensitive body!

Shadow Play

The moonlight casts is glow

Against the glistening snow…

My eye is caught by the movement

Subtle at first

Movement that is slow and graceful…

The beautiful dance begins

Shadows bending close

Then turning away….

The dark lines

Dance upon the snow

Daring to touch for a moment…

Back and forth the limbs entwine

Twisting and turning

Orchestrated by nature…

The swaying and gentle movements

Relax my bleary mind’s eye

Feeling its mesmerizing affects….

I am hypnotized by its graceful movements

Tied to a precious moment

Taken away from the every day pain

To a surreal moment in time….

Voc Rehab

My advocate for Social Security Disability…..yes…we are still fighting to obtain disability for me….suggested that I set an appointment with the local Vocational Rehabilitation Office.

I have an appointment on Tuesday.  With my Hubby’s help, managed to complete the questionnaire that they require to bring along.  I found it quite interesting that they do not do any type of home visits!  Thankful that my Hubby will be able to take me to the appointment.

I asked our son if he thought they would be able to find something that I could do.  He said, “Yes…if they are like the Social Security Administration….man, Mom….I KNOW you can’t do anything!”  I then told him that I would be meeting face-to-face with a real person for this.  He quickly changed his tune then.  “Mom, they won’t be able to find anything that you can do!!”

So yes…a little nervous….glad that I will have an opportunity to meet face-to-face with a person and possibly get more support for my disability case. What a long, tough road!!!


“Falling”….the word itself conjures many images….from incidents in our past to what we have seen.  If we add an additional layer….say chronic pain from Fibromyalgia/Polyarthralgia/Chronic Pain Disorder or the like, our minds race to other images….to reliving terrifying experiences!

It brings to mind stepping out of the pickup….to find myself sitting/laying in the snow….wondering how I got there!  Walking into the kitchen…..to find myself sprawled on the floor with our dog by my side…..realizing that my lower back, elbows and head were hurting!  Or…most recently….getting up from bed in the middle of the night to slowly amble to the bathroom…..only to find myself in a crumpled heap near the bathroom door!

“Falling” brings other revelations to light….the “side effects” that come from our hidden illnesses….the bruises….the headaches….the pulled muscles…..the broken bones…..all of which add another level of pain to that which we endure…..each and every day….day in and day out…

The worst part?  The one dreaded word that has not yet been mentioned……that being fear!  Fear from the realization of how close my head came to the counter in relation to where I found myself on the floor…..the fear of walking too close to the stairs…..the fear that shakes our confidence in what small amount of independence we might be have.

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