Fibromyalgia: I Surrender

nancyemills:

Final Draft – Thank you for reading! I’m enrolled at Southern New Hampshire University, majoring in English, Creative Writing. I love combining my blogging with my class assignments. Fibromyalgia: I Surrender was turned in as my narrative essay assignment. I posted my first draft in January. This is my Final Draft that I turned in to my professor. I love SNHU.edu. My best to all, Nancy

Originally posted on Imagination Is Evidence Of The Divine.....:

antonio-banderas-antonio-banderas-15837749-500-341 Late November I was well, fit, strong, and working out regularly. I was enjoying three years of respite from the fibromyalgia that had been my nemesis for over 20 years. But one day, I walked to my bedroom door and innocently, trustingly, opened it. I caught my breath. He is here. I could feel it. The vampire with the Antonio Banderas personage, who sucks the life out of me, is here.  Languidly sitting on my small couch, his long legs are casually crossed. His graceful arm stretches across the back of the stuffed pillows making a cozy nest ready for me to fill. His hair falls long, too long, just long enough for me. Head tilted, slightly resting on his hand, he is so still, too still. His dark eyes say it all, and the sly smile is his disguise hiding a sinister intent. Armand, my fibromyalgia, was back.

1544432_10202236993739889_1125808601_n

Okay…

View original 2,308 more words

Fibromyalgia: I Surrender

Tags

, , , , , ,

antonio-banderas-antonio-banderas-15837749-500-341Late November I was well, fit, strong, and working out regularly. I was enjoying three years of respite from the fibromyalgia that had been my nemesis for over 20 years. But one day, I walked to my bedroom door and innocently, trustingly, opened it. I caught my breath. He is here. I could feel it. The vampire with the Antonio Banderas personage, who sucks the life out of me, is here.  Languidly sitting on my small couch, his long legs are casually crossed. His graceful arm stretches across the back of the stuffed pillows making a cozy nest ready for me to fill. His hair falls long, too long, just long enough for me. Head tilted, slightly resting on his hand, he is so still, too still. His dark eyes say it all, and the sly smile is his disguise hiding a sinister intent. Armand, my fibromyalgia, was back.

1544432_10202236993739889_1125808601_n

Okay, it wasn’t as romantic as all that.  There never was any romance between me and this syndrome of pain and fatigue. In this essay, I will describe for you, a civilian to fibromyalgia, an example of the emotional struggle between acceptance and denial that I lived through. For you who are my brethren-in-pain, I will explain how I look at fibromyalgia differently now that it has returned to me after a three year interlude of perfect health. Previously, I had a different attitude about my fibromyalgia, I couldn’t bring myself to call it mine. The fibromyalgia, not my fibromyalgia. I distanced myself from it. I was rude to fibromyalgia. I had decided that I would not give it the “respect” it was beating my body up for. When I was suffering, I would label it as stupid-fibro. I refused to own it. It might “have” me, but I did not welcome its advances. Did this tough-love approach help me? Not a bit, it was there, all of the time, this stupid-fibro.

My style of fibromyalgia collapse was dramatic and all-encompassing. I would sink rapidly into exhaustion, more quickly than would be manageable. My whole body would be racked with pain. Any movement, even attempting to make a fist with my hand, was too painful to accomplish. I was not mobile, I lay where I would land. My muscles and joints ached; I couldn’t turn myself over. Any small adjustment was extremely labored. At my worst, I could not lift my hand off of the bed or couch. Laying still was very painful! My ribs would be screaming; my hips would be throbbing. I could feel the connective tissue throughout my body, inflamed and enraged. My voice would go away; I certainly didn’t have the energy to speak, even if I could.

Collapses would visit me for three or four days. I would have only two or three days in between them for recovery. As far as I was concerned, that schedule was basically filling my dance card. A good day for me would be to literally drag myself to the bathroom from the bed to brush my teeth. I would take a long time, with many rest stops spent on the floor. I would then reverse the trek and that would use up any energy I might have stored for that day. My body would be freezing cold inside, my hands and feet like ice. There were sixty to eighty plus symptoms that would present themselves in me, none of them fun. The most important symptom was missing: death. I wouldn’t die. Fibromyalgia would not kill me. I would just linger. I really could not believe there were support groups for this, but there were. I was puzzled how anyone with fibromyalgia could physically get to a support group. I had very few blocks of time where I could pull myself together to leave the house. If I had gone, I wouldn’t be able to recuperate in time for another weekly meeting. Forget it.

After a few years, the stars aligned, and I somehow showed up at a support group meeting at my big-box Baptist church. The meeting was called The Chronic Disease Group. I chose it because of the convenience. I was living, temporarily, next door to the church. We had sold our ranch house in horse country to build our southern antebellum dream home with a stables on 51 acres in a pastoral setting. While everything was being built, we were living with our daughters in a mobile home on the acreage, facing the 10 acre pond.  Our dogs were with us and our horses were living in paddocks in the front yard. We were having a grand family experience becoming familiar with the squirrels, deer and beavers. After three months in the trailer my hair was falling out and my nails were splitting. My fibromyalgia was worse than ever. My rheumatologist determined that all of the warning signs posted on the interior walls, the door handles and faucets in the trailer were directed towards me. The notices on the walls warned of the formaldehyde that was used in the creation of the materials used to build the trailer. Because of the fibromyalgia, I was extremely sensitive to the formaldehyde hazard, and my doctor advised that I needed to move out immediately for the duration of our building project.

full

We relocated to a small townhouse at the senior community where my mother lived.  Being an extension of the church we belonged to, they were gracious enough to allow us to live there for a few months. Here I was, married, raising three children and homeschooling two of them because I couldn’t drive them to school and back amidst all of my symptoms. We had four dogs, many horses and traveled the horseshow circuit most of the year. I was also my husband’s assistant and secretary for his business. I was an overseer of our building project and chief design consultant. Being all that I could be was making me desperate. Constant suffering creates desperation. Even though the support group meeting was not specifically labeled for fibromyalgia, I had decided that whatever they would talk about that night might apply to my situation. I found myself physically mobile that night, so the short ride of a few minutes duration was workable. I hoped. I could never really rely on my physical self.

Arriving at the door of the support group, I was nervous and scared. I felt that I should be ashamed to show up at this meeting with an invisible, unexplainable syndrome of pain and exhaustion. These people were seriously ill, otherwise they wouldn’t be in there. Also, fibromyalgia had an ironic anti-symptom – I didn’t look sick. I had a poised and polished exterior, but inside I was full of physical pain. If you saw me in 3D, real-time, anywhere, I was healthy and well that day. But if I was out of your sight, don’t count on it, I couldn’t. You would be safe to bet that if I wasn’t around, nowhere to be seen, I was in a collapse. During my collapses, I looked like death barely warmed over. But the few days that I had off from my “dark nights”, I looked great! I could glow. A frequent comment to me was, “gee, you don’t look sick!” I am not alone, that is a comment made to all sufferers of fibromyalgia. I am surprised that there have not been a string of assaults by victims of fibromyalgia on those handing us this “compliment”: it gets very old.

Feeling like an impostor, I entered the room and took a seat in a circle of a dozen people. All were women except for one man. Just as I thought, they all had the same look on their face, there were miserably ill. These were very sick people. One by one they went around the circle introducing themselves and sharing what their chronic condition was. By the time they got to me, I had become so stunned, I felt as if I had quit breathing soon after the introductions had begun. As soon as I attempted to state my name I fell apart sobbing. I am not a crier, what was happening to me? It was all too much. After stating my name I then had to say the same phrase that each one of them had said, “…and I have fibromyalgia.” The man in the group, looked completely defeated and emasculated. A smaller percentage of sufferers are men, but they were well represented that night.

The whole support group experience was too traumatic for me, I did not go back. It made me see myself, as in a mirror, in those sad, pained, exhausted souls. It made me face how truly horrible all this suffering is. Looking at them was like seeing the insides of myself. It was hard enough to live through it each day, by myself, without others to gain reference from. That night, looking at fibromyalgia sitting right in front of me, looking into my eyes, was very profound. As serious as I knew this predicament to be, facing this pitiful quality of life made it become even more so. I felt like my head was spinning, the experience was surreal. I was in a state of shock for days. My usual glib self, my dark humored jokes, my coping mechanisms disappeared for a while.

As the years went by, the collapses eased up in severity but not in frequency. I had a three story house and I couldn’t make it up the first flight of stairs. I had three daughters living up there! I might make it up to the second floor every three months. After eighteen years of fibromyalgia, one morning I popped out of bed. Someone with fibromyalgia doesn’t pop out of anything! Normally, I would ease myself out of bed minus the “ease”. Stiff all over, I would not be able to put my feet flat on the floor. My first steps would be small and cobbled. I couldn’t stand up straight, I would be bent over, like someone in their nineties. But this morning I popped out of bed, landed on my feet, and walked upright. That got my attention! I knew at that moment, it was gone! My body walked automatically, I strode out of my bedroom free of pain. What an amazing feeling to have zero pain! Wow, how much pain had I been in? The pain had been more intense than I had realized. I had forgotten what truly pain-free living felt like. It was gone! Was this the new normal? The fibromyalgia had disappeared, and it stayed away for three years.

Why? Why, why? I don’t know. But I was free of fibromyalgia and I was sure that I was going to stay that way. I hit the ground running. I was able to work out at a level that I aspired to. I started a running program and fell in love with it. I became very active and I didn’t take a moment of it for granted; I discovered endorphins! My mood was very stable and I felt I could now start tapering off of the anti-depressants that had been prescribed for me many years ago. My doctors were treating a chronic depression that I had fallen victim to as a young child. With my doctor’s advice I was able to wean myself down to a very small dose of anti-depressant. But there was something important to keep in mind that I overlooked, fibromyalgia is also treated with anti-depressants. Very small doses are taken at night which enable the sufferer to have deep sleep. This is the stage of sleep that is missing when you have fibromyalgia. In deep sleep your body is paralyzed and recovers from the physical activities of the day. Without deep sleep there is no muscle recovery, so the stress, strain and fatigue is carried over to the following day, amping up the level of pain with no relief. Depression was not being an issue for me anymore, I was ready to stop the anti-depressant completely, and I did. I had forgotten that my anti-depressant was also treating my fibromyalgia.

I had made a change in my workout habits, I switched from running to an intense personal training environment with one-on-one sessions. My sessions were a gift from my daughter for me to train with her trainer. He specialized in professional basketball and football players and clients like my daughter, who is an amazon goddess of fitness. I knew I was being pushed far beyond the point that I had been pushed before. I love intensity, and I have paid the price with collapses many times before. My trainer was confident that I could work at this level despite my hesitancy, my age, my asking for some slack and my clever stalling techniques. Couple this with the fact that I had tapered off of the anti-depressant completely by that time, I then felt the presence of my invisible significant other grow stronger. The collapse Armand brought me was very severe and has not relented completely since. I can’t change anything about the pain and fatigue, but I have changed the way that I live with it. I acknowledge the anomaly of fibromyalgia as something familiar; Armand and I have been reunited.

Upon reflection, I have realized that there is one big thing that has disappeared from inside of me while Armand was away, and that is anger. Anger at my illness, and anger at myself for being the host to it. This makes sense, because during the time that I was healthy, I made a lot of personal progress within my own mind. I began to look at the world differently in general. I became more forgiving and forgetting, not only to others but more importantly to myself as well. I don’t harbor any of the old negative feelings toward Armand and his bag of painful, achy tricks either. There is such a sense of familiarity between us. I can call him old friend. Now that I can see his dark brown eyes more clearly, I invite him along as I visit the whirlpool, “Come, dear.” Armand can float along with me as I practice my freestyle stroke in the lap pool, reminding me that I will most likely feel his “caresses” later on. If he insists that I curl up with him on the couch for the rest of the day, unable to move, it will be because he just can’t get enough of me. He loves to engulf me. He has made himself part of me. I am not complaining, because this time, he has revealed himself to be just so damn handsome.

1454908_10202236554128899_1445407598_n

I Raised Myself to be a Soft Revolutionary.

Tags

,

I was raised by very old parents.  My mom was 39 years old and my father was 42 years old.  No big deal now, because our mindsets are much more ageless.  BUT back then it was ridiculous, the generation gap was not bridged.  That is why I had to raise myself, by myself.

I was very grateful when a classmate suggested I read a book that he was finding very useful.  He was a leader of sorts, creating grassroots groups to make a difference, opening minds, being relevant.

The book was titled; The Soft Revolution by Neil Postman and Charles Weingartner. It was subtitled, ” A Student handbook For Turning Schools Around”.  It awakened me just enough so that I could personally turn a few things around for myself – another blog will cover that!

It was a Dell softcover book, published in 1973.Unobtrusive except for the power-to-the-people type fist and peace sign on the cover. It was small enough to hide in your backpack with all that other ‘stash’.  But not invisible enough that when my father found it in my bedside table he confiscated it, along with my bedside rotary phone for midnight under the covers phone calls, by locking them both in a safe.

This is the section of the book that my mind absorbed and never let go of – the usefulness and need for developing a ‘bullshit detector”.

To fine tune your very own bullshit detector, ask yourself these questions when being exposed to another’s rhetoric;

  • Why are these things being said to me?
  • What are these remarks intended to make me feel?
  • What words am I in love with?
  • Can I discount this speaker or his position because he uses those words?
  • Does he mean by them what I mean by them?
  • How do I know that what is being said is true?
  • How many things has the speaker left out?
  • And why?
  • Why did he include the things he included?
  • Why did the speaker choose those particular words, and not some others that are roughly synonymous?
  • Am I reacting to what he is saying, or to him?
  • Are these remarks literal or metaphorical?
  • Am I hearing what he’s saying or what I want to hear him say?

I Take Personal Credit For Creating The Millennial Generation

Tags

, , , , , , , , , , , , ,

I am proud of my age.

My life experiences helped form the present new generation of  people who are the hope for the world.

Yeah, The World, I say.

The GenX/Millennials. They are unlimited, global thinkers who influence each other without the boundaries of race, creed nor country.

The GenX/Millennial’s timeframe is the instantaneous, ever-present now. With a text, tweet, update or necessary e-mail, their minds are not conditioned to wait…to act.

The GenX/Millennial’s mental training resulted in the ability to concisely get to the point without beating around a bush. Communicating so as to not use up 148 characters wastefully, has provided them with the much-needed filter that tosses out the bullshit while sensing out the intent of the messenger before them. It doesn’t matter that they are bombarded with ulterior motives, propaganda, message spinning, media campaigns; they know what you’re really up to and !poof! – there’s nothing to see here – you are moved along.

Antiquated, verbiage screams #FAIL. As well it should; politicians beware.

I feel so comfortable now, in the world I have created I could curl up in an oversized sweater, sit in my bay window and watch the rain as I sip my coffee.

I have always had a Millennial mind.

I have received my fair share of kicks under the table for possessing a, before-its-time, shit detector.  My detector looks like Uncle Martin‘s Martian antenna’s, but invisible and very long, by the way. I know when you are standing right behind me, too.

I have steered many answers that I have received, to questions that I’ve asked, back to port; while throwing out the baggage attached to the response thru evasion, deflection, posturing and condescension.

My day has come, the hard work has paid off, the Millennials are my spawn.

OK, so what did I do?

I spent the formative years of my life in the 60’s and 70’s.

Yes, that was me. I forged the way. I walked into the unknown willingly, following the wafting scent of incense, my eyes gently weeping to the cries of a sitar, my ears being bent by Sgt. Pepper’s Lonely Hearts Club Band.

DN WEDDING 1 CROP

My Hippie/Rock Wedding…he was a lead guitarist & I was, well, the hippie

The 60’s and 70’s broke the mold of conservative society. I was somehow primed ready and receptive to be taken under the influence of mind altering creative energy that was driving everyone to express themselves in unique ways.

I was fearless, and feeling an inordinate amount of love for everyone and everything.

But wait, there’s more;

The British Rock Invasion (what sound can do to mind is phenomenal)

Transcendental Meditation (what mental sound can do to mind is phenomenal)

Expansion of Consciousness via hallucinogens (what chemicals can do to mind, well I’m not well versed but that happened)

NANCY MAY 2013 A 139

Psychedelic Everything (what visuals can do to mind is phenomenal)

The Assassinations of JFK, RFK, and MLK (what hopelessness can do to Peace & Love hippies: create cynics who give birth to ironic children)

The Vietnam War at dinner on television; the 1st televised war (what visuals can do to mind is phenomenal)

 Kent State: Parents in Positions of Power Forcing Older Children to Open Fire on their Younger Siblings in College and Kill Them (what visuals can do to the mind is phenomenal)

A lot to think about.

But the young ones are oh so smart, and they are oh so certain.

They are oh so unique and NOT their parents clones, thank God!

I take credit for my part in making the way easy for our GenX/Millennial kidlings to take what I brought to the table and close the deal – in their time.

You’re Welcome.

I also invented rock concerts, BAM.

Twitter Shrunk My Projection of the World Down to the Size Of A Village

Tags

, , , , , , , , , , , , ,

We are more the same than different; this I discovered from Twitter.

I was very surprised.

I thought that every country gave birth to a people so unique to its own terra that it was as if we are aliens to each other.

Other cultures amazed me with their exotic differences, but I was only grazing at the surface.

My observation was no different from when kids come to the door for Halloween, “Ooo, cool costume!”, only to discover when the mask is removed,“Hey! You’re the kid next door!  How ya doin’?”

I discovered from my regular visits & interaction on Twitter that peops all over the world have 5 basic things in common:

  1. satisfaction from a good night’s sleep
  2. happiness having had a great meal
  3. comfy enjoyment from a hot cup of coffee/tea in the morning                                 (choice of the majority worldwide – coffee, surprisingly)
  4. they LOVE their pets
  5. People in general, do not hate their job! I see little to no complaints.

Thus I was able to wrap my head around the World being made up of individuals who are in essence more like me than not. A revelation.

I started thinking more in the vein of “we” and “ours” than “me” and “mine”.  In the instant, real-time reality of my Twitter feed, I could receive all the validation I would ever need to confirm my observations.

I might add that everyone is very nice.

I’m proud to get to know all the rest of the people in the world.

I’m pleased to help with their rebellions and uprisings. Best wishes with that.

I don’t find that function on Facebook, LOL! Different universe.

What Makes My Life Unique

Tags

, , , , , , ,

I am passionate about Social Media.

My view is visionary; I see a higher, global purpose being served.

I love being part of this movement of fractured and scattered, fellow passengers, uniting together through a send.

A short update,

a tweet of limited characters,

and an insta-pic that puts techno-beauty into the everyday scenes that we see.

They are concentrated storytellings;

a craft with origins in oral traditions all over the world.  Since the beginning of human existence.

I am an actress.

The world is my classroom and every person in it is my study.

I tell their stories on film.

An actor is a storyteller, as well.

I love to share information and watch opinions find their home of agreement somewhere…..

They escape from the hearts of peops with the velocity of pure thought,

without excess words that dilute emotion and confuse purpose.

It’s so powerful.

In the telling, the receiving heart twinges in recognition of a mirror reflection of themselves.

Unity cannot, will not, be avoided nor forgotten.

I think social media tenderizes the heart.

 

Image

Rubber Band Balls Xcite Me

Tags

, , , , , ,

Rubber Band Balls Xcite Me

I use rubber bands daily, do you?

I use them to collect things in lil groups to organize stuff

I use them to wrap up & reseal bags of food & boxes for the pantry, fridge & freezer

I reach, reach, reach for rubber bands all day

I have a preferred format for them

I buy those round balls of rubber bands

1 by 1, I peel them off, day after day, until I get to the prize inside – a superball!!

Sorta a superball, about medium the super

Enough super to throw with abandon, but not enough to produce unleashed mayhem

‘Bout right

Rubber bands on their own are fun anyway, with their shooting ability

What other office/kitchen staple can I have multiple fun with?

Bags of rubber bands that the innocent buy are low creativity quotient

Just looking at them laying all over each other looks like an Instagram of Dante’s Inferno.

Their languid chaos repels me.

I know some of them, down in there, are knotted together!

NOT helpful, you lil demons.

I was raised with survivors of Auschwitz

Tags

, , , ,

During my grade school years, I grew up in a 10 story apartment building in West Hollywood.
1019 N. Hayworth Avenue, to be exact.
It is still there.
In those 9 other apartments lived survivors from the Holocaust.
There was a husband and wife.
The rest of the renters were single. Alone. Far more typical.
All of their family members had died.
In the camps.
The faces of the ‘alone’ ones, I cannot see now.
But, I clearly remember the tattooed numbers on their arms.

I always valued knowing the truth about life as a child.
I would think to myself “I just want to know the ‘truth’.”
About anything.

I discovered my theme song in those years, playing out from my turquoise plastic AM radio:
Peggy Lee – Is that all there is?
If that’s all there is, my friends, then let’s keep dancing.
Let’s bring out the booze and have a ball.
If that’s all there is.

(Hey! I was in Catholic School and I definitely knew what booze was.)

And I definitely knew that I was learning that there was a dark side to life just by living in these apartments.
4th grade. Imagine.

As an adult, I moved away from California. (kicking and screaming)
I realized, because I could tell, that the children had no real knowledge about the Concentration Camps and neither did their parents.
What!? A lip service book report on Anne Frank?
I couldn’t really understand the Gentile fascination with Anne Frank when there were Tattooed Camp Survivors holed up in their apartments in Hollywood!
That’s when I realized that distance makes the heart dumb.

A book report.

That’s nothing compared to living amongst and seeing their constant companions, Fear and Paranoia, manifest.

My parents, as Managers of the apartment house, would answer a tentative knock at our door.
They would find a lovely human being there in the throes of a PTSD attack. My father would go with them back to their apartment, he would enter and search every room and closet for the source of the Nazi voices they were hearing.
Search for their fellow prisoners who were screaming and crying in their bathroom.
And of course assure them all was well. “As it could be”, I would add in my mind.

The tattooed numbers and their fear was explained to me by my mother. And what she didn’t say was all too evident to me, anyway.

I filled in the spaces, later on, with my own personal research.
I become deeply disturbed and immobilized when watching the poignant films that have been made telling the Holocaust stories.
Ok. Sophie’s Choice left me hysterical.
I find the films to be precious jagged jewels that reach to the depths of my emotions and take residence in the pit of my gut.
And I value that.

I’m glad that I know what I know.

And I want to say “shame”.
Shame on you for not knowing.

Forgive me that.

Image

CRESCENT DRIVE & SUNSET BLVD 1911

Tags

, , , , , , ,

CRESCENT DRIVE & SUNSET BLVD 1911

Hollywood, not as we know it. This is what brought people to relocate to Los Angeles. Open spaces, beautiful weather, outdoor activities all year long and gorgeous landscape when in bloom. I miss my Hollywood very much. I was born at Kaiser Hospital on Sunset Blvd and raised in a lovely, bungalow, Jewish neighborhood a block down from Santa Monica and Fairfax

Follow

Get every new post delivered to your Inbox.

Join 2,846 other followers