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Archive for January, 2016

Living with Loss

I am still struggling…

Still learning to live without you…

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Without your physical presence…

It is strange…

I reach for the phone

To call…

Your voice message comes on

Perky and full of life

Yet….

I am faced with the stark reality

You are not here…

You are no longer with us physically.

This precious bear

With its wonderful necklace

Is with you

Will be with you forever.

As your nephew wanted

You will forever have

The presence of Lucky with you!

It is so hard

To not hear your voice

To not be able to see you.

Your presence is missed so much!

I hurt for those

So close to you

As I feel their pain…

You made such an impact

On so many…

In so many ways!

My words are such a shadow

I can barely shine

The barest feeble light…

Compared to you!

Balance?

The idea of balance and Fibromyalgia….a thought I am still trying to get my head around! LOL

I have been reading…researching…doing my best to fully understand to grasp as best as possible a better understanding of my chronic conditions.  The combination of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/Permanent Colostomy and who knows what to be officially added!  LOL  (Those with Fibro and its related conditions understand my tongue in cheek!)

I continue to come across the same paradox…..we are to exercise to relieve the pain…to increase our ability to have the restorative sleep that our bodies so desperately need.  Yet by exercising…we hurt (often a day or so later)….our fatigue is increased….coordination is thrown out the window….and on and on.

How to tackle this concept of “balance”?  Especially if you are like me….when a simple ride to town to go to the store (about a 15 minute drive there then back again)…even using your wheelchair and carefully walking from the front of the car to your chair (while using the car as balance)….leaves you completely exhausted!

I know that there is no simple answer….there is no “miracle” cure….there are so many different medicinal options/combinations as well as supplements.  I am one of those that cannot have most of what is out there that doctors will prescribe! I am also very limited as to supplements….my overreactive system prevents the use of something as simple as Tylenol!

So…until I have my appointment at the University of Utah….I do my best to get some movement….some stretching….while resting…reclining.

I have ordered a DVD on Tai Chi for beginners….that has options from seated to standing….I have read where this gentle movement…stretching routine has helped many other Fibro sufferers.  I will test this out….

Above all I know that coming to some type of “balance” will take a long time…this will be a long….slow trek….patience will be required.  Patience with myself….with my conditions…

Just take heart….if you are newly diagnosed….or find yourself severely limited as I do…Fibro is a dictator…that is for sure!  However, as any dictator….it will fall!  Each of us will be able to find that “balance”…..

Whatever that “balance” is for each of us!

 

Burning!

I feel the searing flames

From deep within

Shooting out my groin

Where shingles usually

Make first appearance.

The flames are also licking

Along my back

Surging upwards from

Waist to shoulder

To soon envelope

My neck…and possibly the side of my face.

Flames are searing

My right leg

The burning is intense

The smoke alarm should be going off

Why are they invisible?

This horrible burning

It is occurring

From the depths of my being

To the outermost skin

I can feel the cold air

It intensifies the burn

As if to fan the flames.

Take Pause

I stood next to my rig in the garage…..

It still seems so surreaIMG_4092l….

I caught myself just staring…

Looking at the words…

As if they were a jumble of letters…

Letters and numbers….

Uppercase….lowercase….

Cursive…bold…italics…

Images are flashing….

As if on a different screen…

As my eyes continue to stare ahead….

At the vinyl image on the window…

This beautiful tribute….

To my most precious Baby Sis!

Thoughts of Pain

It wraps itself around

Our innermost being

It swells and

Sends tendrils to

The most distant parts

Leaving no nerve unmolested.

It has so many faces

Making its capture

Much more convoluted

Morphing, shifting, ever changing.

Its manifestations are many

Taunting each of us

In unique ways

Similar faces many of us see

Yet some are spared

The vast multitude of masks.

Others it would seem

Those like me

Are being shown

More faces than could have been imagined!

The reason for Pain’s

Many faces…..masks

Science does not yet understand.

Definitely not found

Alone in the mind

Pain is a true

Physical opponent

Fighting for control.

We each battle

We wage our own

Individual war

Yet we share

The common opponent!

Morning Peace

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The wonderful, peaceful view this morning from our back porch! The tranquility of the moon in the early morning….its radiance still reflected in the glistening snow!

The beauty that surrounds me aids in calming my racing mind….and aids so much in the much needed distraction from the pain coursing through my body!

Truly a God given blessing!

Sleep Attack!

I am thankful for the many forums/blogs/etc. shared on-line by those with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/and other chronic conditions/illnesses.

I am dealing with another one of our “shared” symptoms!  That of the dreaded “Sleep Attack!”  That feeling of not being able to wake up!  Sleeping hard for 11 hours (YES!  Unbelievable)….forcing myself to get up…knowing that I could continue sleeping for hours!

In the past when this “Sleep Attack” has happened, that is exactly what I have done!  I have slept….gone back to bed to sleep for hours….awoke to snack….went back to bed…to sleep…awake for another snack….then back to bed to sleep for the night….only to awake exhausted.

I have not given in to a nap yet…even though my eyes are heavy as if weighted down….my body extremely exhausted and not wanting to respond. I will give in to sleep for a while….and just again enter the sleep…wake…sleep pattern.

I find no trigger for these attacks….just know they hit at random….can occur when feeling miserable (as I have been the past several days)…..can occur after numerous nights of lack of sleep….or after nights of 5-6 hours of sleep.

It would be awesome to figure out some type of pattern! I know this would vary from person to person….but it would better help us to have an idea….all tests run to date show no true reason for me to have these battles.  I know that we can only add it to the many symptoms that we share.

Not everyone with chronic conditions/illnesses experiences these “Sleep Attacks”….but those that do understand how disruptive and truly scary they are! I am thankful that I do not have to consider driving during these days…..most days I prefer my husband to drive….I am a bit concerned about my ability to truly focus.

I know that this “Sleep Attack” will subside….it will retreat and hide……awaiting another day….another time to rear its head.

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