Posts Tagged ‘pain and fatigue’

Time out…

Mystical Mountains

Sacred Oats fall Crows came to call

A magical view of those rolling green hills

those hills sure do call my name

My beloved 4-legged guardian and I walk barefoot

green grassy meadows where the ground is soft, white-tail deer roam and crows come calling

Where the Sacred Oats fall…  Crows come to call

Suddenly we danced in the night around the fire

We danced at night.

Below are some of my journal entries during my camping trip.  They speak mostly to pain and challenges.  I’m a little surprised.  I did actually enjoy myself, at times, but apparently there was more pain and hard times than I realized.  I do love those hills.  I loved some parts of the trip.  Still, these entries mostly reflect how hard the trip was for me.

–Today we are in the mountains.  Many things occurred over the past few days as I was getting ready to go camping that I didn’t like.  But I’m here.  A moment alone now as my son, a man now, and our two young friends are with me.  Of course our four-legged are here too.  Well, my moment is over.  Son is back.

–Preparing for this trip was extremely hard.  Bending over a lot while packing caused severe lower back pain for me.  I had to walk through the fatigue.  I had to dig deep inside for the will or whatever it was that I had to have, determination I guess, to keep on packing despite severe pain and fatigue.

–I fell.  Slid down a moss covered set of stone steps.  No bruises.

–Sacred oats gone bad.  I am not eating from that bowl.

–I’ve been terribly sick and pretty much having to go at things as usual without much help.  It’s been hard.  I had to do most of the work preparing this trip.  My son isn’t doing well.

–I’m exhausted.  Completely.  My pain levels are off the scale.

–It’s nice writing out here.  My dogs are lying next to me.  The young people went on bicycle rides.  It’s very quiet.

–I love being here.

–Butterflies are everywhere.

–I think the sacred oats that went bad have left us now.  I hope.

–They’re back.

–Well, maybe those bad oats didn’t leave us.

–My pain has hit hard sitting here writing.  I’ll lie down soon.

–God I’m tired!

–My son is having a psychotic episode.

–My intestines hurt like hell.

–I’m watching the last log burn.  Now this wood, well, it’s amazing!

With all the pain and frustration that came with that trip, I managed to get some time out.  I needed to get away from flat land.  I needed to go where the hills surround me.  I needed the cool breeze that always travels through those rolling green mountains.


Without the label of fibromyalgia

why do some people dislike labels when they help us understand what is going onWithout the label of fibromyalgia, I’m a human being in severe pain.

I am a human being who feels pain 24/7, 365 days a year.

Without the label of Chronic Fatigue Syndrome — I am a human being who is more than simply exhausted.

I’m not talking about the kind of tired I used to feel after a hard days work.  Not the kind of tired some people say I might have, “because I don’t run ten miles a day like they do,” or “because I write,” or “because I need to get out more often.”

People who think they know why I’m tired or in pain, who don’t know one little iota of truth about fibromyalgia and Chronic Fatigue Syndrome, are people whose opinions mean zilch to me.

I was a firefighter.  My training made me so tired I had to go to the doctor.  This was before any diagnosis of fibromyalgia or Chronic Fatigue Syndrome.  This was before Lyme disease in 2003 and near death from Rocky Mountain Spotted Fever in 2005.

I got over being tired after that training.  The doctor, who is a homeopathic physician, told me to rest and drink fluids with electrolytes.  So I did and after a day or two,  I could run with the best of them again.

Without the label of fibromyalgia, I am a person who has severe problems sleeping.  I never get good sleep.

Without the “label,” I am a person who sees days where taking a shower wears me out.  I get all nice and clean.  I get dressed.  I fix my hair.  Sometimes I even put a little makeup on.  Then I take my shoes off and fall on my bed from sheer exhaustion.

Without the label, I am a person who cannot live an active life.  Some days I’m a person who spends the day in bed, not sleeping, too tired to read, too tired to move, who just lies there like the living dead.

Without the label, I am a person who strives to make it through one trip to the grocery store and 98% of the time I can’t get all that I intended to get.  I could if I used one of the riding carts or whatever they are called, but I’m not there yet.  I’m not at a place in my mind where I feel I’m ready to reveal to the public how disabled I am by FATIGUE.

Without the “label” I am a person who hurts when I take wet clothes out of my washer.  I am a person who hurts when I push a vacuum cleaner.  Many days, I’m a person who feels like a plastic bag weighs ten pounds.

Without the label, I am a person who gets so tired that my brain seems to collapse inside my head.  This is called, brain fog, but some people can’t take labels.

Without the label of brain fog, I’m a human being whose brain stops functioning and I have a hard time adding 2 + 2!

Without the label, I would be quite confused as to what the hell is happening each and every moment I live!

Too tired to say how tired I am of people who don’t know squat about what it means to live with Chronic Fatigue Syndrome and the pain of fibromyalgia.

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Image of ferns by, “The Graphics Fairy”

I chose the image of the fern because even plants have labels.  I stand on both sides of the fence, or perhaps I’m the FenceSitter, regarding the use of labels in medicine.   Labels are useful but can be abused.  Labels can be used to identify a whole person and I believe, those of us who have an ongoing health issue, illness(es) or disease(s), know that we are more than a label.  We remain fully human.

Thank you for visiting my blog.