Monday, August 27, 2012

Engaging with positive auras improves your well-being

My last blog was focused on Highly Sensitive People and the impact  the environment has on these people.  You may be able to identify with some of the characteristics of being highly sensitive and other characteristics probably didn't quite fit for you.  This is because the human brain and the development of personality are so complex and each of us express our genes in a way that is unique to each of us.  I am an identical twin and I have been fascinated with the differences between my sister and me.  While we are so much alike in some ways there are also vast differences between us too.  I have fibromyalgia and my sister does not.  Since my sister and I are genetically identical, what accounts for those differences?  The latest research shows that the differences are expressed in the "tune" each of us has decided to play with our own unique variation of the same song.  Our genes are therefore expressed differently and with the differences in our environment we have developed into very different people.  The Highly Sensitive Person may be histrionic and theatrical . . . that does not describe who I am at all.  I tend to be stoic and practical, and I enjoy sitting back and observing "the action" around me.  I am not overreactive and take the time to process and analyze sensory information to the nth degree.  Sometimes I process and analyze that information too much!  I find that I instinctively seek out places to go that have good karma.  The gentle yoga class I attend has such good karma and the people there are warm and inviting, and they understand the challenges that life has posed for me . . . they share the same daily challenges too.  Inspite of those challenges we all laugh and hug and share those positive energies that highlty sensitive people so readily share.

So let me tell you about my favorite cafe that I am instinctively drawn to.  I have mentioned this cafe in a previous blog post . . . it's called The Z Cafe.  This is a place that has very good karma and I have analyzed and processed the interactions I have there that renew my energy and help me to feel better.  At first I thought it was just about the wonderful latte that is served to me each time I go or the Mikey's Special Oatmeal that I order with fruits, nuts and fluffy steamed milk topping an otherwise drab and tasteless dish.  This energy gift that I receive most times I am there is about the beautiful,

Saturday, August 25, 2012

Highly Sensitive People seem to develop fibromyalgia

I have always been interested in new theories and scientific research related to healthcare and human behavior.  It seems that behavioral science is coming closer to unraveling the fibromyalgia mystery.  I am active on a fibromyalgia forum and was interested to see a post that had been made by a psychologist involved in research.  This psychologist is evaluating the effect that childhood experiences have had on the development of fibromyalgia.  The theory being studied is that people with fibromyalgia have had an overprotective or unpredictable childhood that resulted in stress.  One of the interesting factors is this stress was not recognized as a stressor by the child.  In addition, it is thought that the absence of non-performance based acceptance and predictability is enough to cause serious psychological wounds.  Other characteristics that are implicated in fibromyalgia are perfectionism, needing to hold it all together, using your head to make decisions regardless of how you feel, poor self care, always being there for others to help fix their problems and having a Type A personality.  Certainly some interesting research.

The August 2011 issue of Psychology Today had an article titled Sense and Sensitivity.  This article discusses concepts regarding the 20 percent of the population that are highly sensitive people.  The highly sensitive person absorbs the moods and feelings of others around them and is able to sense moods in an entire room and cultural trends too.  The highly sensitive person is "attuned to subtleties of all kinds, they have a complex inner life and need time to process the constant flow of sensory data that is their inheritance."  The highly sensitive person has a nervous system that is set to register stimuli at a very low frequency and then these stimuli are amplified internally.  It is thought that the highly sensitive person is particularly prone to disorders such as chronic fatigue syndrome and fibromyalgia.  The highly sensitive person gets their feelings bruised easily and tend to personalize

Thursday, August 23, 2012

Are you sleeping at night? PART THREE

 I know the answer to "Are you sleeping at night?"  The answer for most of us with fibromyalgia is "no".  I had an appointment with the sleep specialist yesterday to learn the results of the sleep study that was done 1 1/2 weeks ago.  The good news was that I don't have sleep apnea.  I really wasn't interested in wearing a Cpap mask every night.  The other news I received was that my sleep study was "normal".  There was no evidence of Willis-Ekbom disease, probably because I'm taking Ropinirol to treat this.  There was no evidence of alpha EEG anomaly and no periodic limb movement disorder, which is frequently a component of Willis-Ekbom disease.  As I recall that sleep study night, I had slept poorly, experienced periods of "twilight sleep", had several episodes of awakening suddenly and woke up frequently to change positions and try to get comfortable.  The sleep specialist thought I need better pain management at night, but otherwise I am sleeping fine.  The disconnect that I see is the fact that even though the sleep study demonstrates that I'm sleeping normally, that isn't my experience and the sleep I get is nonrestorative.  The sleep specialist said that I would probably benefit from seeing a psychologist for cognitive behavioral therapy to improve the anxiety I have about going to bed at night.  I explained to the sleep specialist that I have absolutely no

Sunday, August 19, 2012

Feeling alive during the darkest days

Today is a really tough day for me, because I have more pain, no vital energy, a big headache, more "fibro fog", body aches, GI distress and generalized malaise.  How do we all explain this to people that don't know how we feel?  I can't pinpoint what has caused this flair although the weather is hot and humid with a hot wind blowing so this extreme in weather may be the culprit.  This is part of the rhythm of this illness and I don't really know how to stop the flairs that come and go when I haven't really increased my activity.  I have noticed that I have more flairs on Sundays, which I could explain when I worked full time.  All that activity during the week would make me start to crash by Thursday with a full blown crash on Sunday.  I was at a birthday party last night and I had such a flair of "fibro fog" that I couldn't hardly carry on a conversation with people.  I try to laugh that off most days, but last night was difficult, because I was talking with

Saturday, August 18, 2012

Joy and hope defeat the pain and fatigue

I am always amazed at the power of the human spirit.  There are countless stories about people surviving when all odds are against them.  When those situations are examined more closely the reason some people survive and thrive when others don't is all about determination, a positive attitude and the belief that they will survive the challenge they face.  I have a small book of quotes that I have had for at least 18 years.  The book is titled "Your Attitude Determines Your Altitude" and one of my favorites is "Whether you think you can or you think you can't, you're probably right."  Henry Ford said that.  Another one I like is "A person will be just about as happy as they make up their minds to be."  Abraham Lincoln said that and he suffered from major depression.  In those days there were few treatments for depression so he had to rely on the power of his own spirit to overcome depression.  That's not an easy task.

Those of us that have fibromyalgia have some major hurdles to overcome and depression, anxiety and feelings of hopelessness are common.  Fibromyalgia pain is a powerful force and the exhaustion that accompanies the pain only makes it more difficult to manage the pain.  I talk with so many fibromyalgia sufferers that are taking a number of strong analgesics with little to no pain relief.  In addition, it is imperative to monitor activity level because too much activity causes fibromyalgia symptoms to flair.  And it is difficult to determine just how much activity is okay and when the line is crossed, which leads to feelings of frustration and discouragement.  It is an understatement to say these two fibromyalgia symptoms impair quality of life.

So how do we overcome the fibromyalgia hurdles and improve quality of life?  The answer to this question is critical for all of us.  When I first started this blog I wrote about being the same person I have always been in spite of having an injury and becoming ill with CFS and then fibromyalgia.  I believe that we must incorporate all facets of ourselves to be a whole human being.  Our lives are a journey that lies on a continuum and as we age we wear many battle scars.  Fibromyalgia is just another chapter of our lives.  So we must know that every day we get out of bed is a good one and we know we

Wednesday, August 15, 2012

The patterns and rhythms of life

All around me I see the patterns and rhythms of life.  I see clouds morph into a familiar form and then dissipate into thin air.  The sea ebbs and flows sending rhythmic waves onto the sand leaving an imprint that remains until the next wave leaves its footprint.  The stars in the sky form a brilliant kaleidoscope that is an ever changing organized landscape.  The moon marches diligently from east to west waxing and waning.  Birds sing their own specific song from dawn to dusk as they invisibly cordon off their territory and search for a mate.  The seasonal rhythms are evident in my tomato plants.  These plants are aware of the declining lighthours and as their leaves brown and wither the plants urgently produce their fruits.  Our circadian rhythm is a function of daylight hours.  The increasing and decreasing seasonal daylight fluctuations trigger our seasonal activity levels.  As daylight diminishes in autumn we are aware of the need to prepare for winter.  There are so many patterns and rhythms of life around us.  Some are predictable and stable while others are unpredictable and dynamic.  If you are aware these patterns and rhythms exist they

Monday, August 13, 2012

Are you sleeping at night?? PART TWO

In response to my last post of "Are you sleeping at night??" I received an anonymous response, "The answer is no."  That answer is no surprise because people with fibromyalgia are exhausted from unrefreshing sleep.  This is one of the hallmarks of this illness and I believe that lack of sleep is worse than the severe pain that people with fibromyalgia suffer.  If people can get refreshing sleep, other symptoms will improve, but without adequate deep sleep we are like dogs chasing our tails.  I certainly feel your exasperation with trying to function with months and years of inadequate sleep.  In fact, people with fibromyalgia have sleep that is so inadequate that we might as well have not gotten any sleep at all.  I can tell you that is a difficult concept for others to comprehend.

I had a sleep study last night and it was a very tough night.  For those of you who have never had a sleep study, let me describe more about my experience.  After my arrival at 8:00 pm the tech began to hook me up to the equipment that would be my bedfellow for the night.  Electrodes were attached

Saturday, August 11, 2012

Going to the garden to feed worms!

Have you ever thought about the important work that worms do?  When I was a kid for some reason or other I frequently wanted to talk about worms when my family was gathered around the table together eating dinner.  I don't recall the context for the worm conversation at the dinner table, but I can tell you my parents were not happy.  I believe that I was destined to be a gardener given the fact I was so interested in worms.  When I think of it, watching worms is almost equivalent to watching the grass grow.  But as I said in my last blog, I watch for the little things because I don't want to miss anything.  Another interesting observation I have made is that every time I visit my worms I have two cats and a dog supervising the visit.  They all watch me closely as if I might slip some contraband into the worm bin, although the dog may be mostly interested in the veggie slurry I am "scattering" into the bin.  The dog has a bad habit of trolling for groceries wherever she goes and has decided to forage in my cucumber bin for those crunchy veggie treats.  I have lost three cucmbers so far this summer.  That dog can be very clever.  But I diverge; back to the worms.

I have recently taken up vermiculture, which is the art and science of composting veggie scraps into a rich compost just by feeding worms.  It sounds simple, don't you think?  Actually it probably is a

The unconquerable human spirit

INVICTUS by William Ernest Henley (1849 - 1903)

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate;
I am the captain of my soul.

from One Hundred and One Famous Poems, copyright 1958, Contemporary Books, Inc.

This is one of my favorite poems, because I can identify with the tenacity and endurance that is required to live well despite the many difficult life challenges.  I have never been a particularly theatrical person; I tend to be more on the stoic end of the continuum.  Some people may believe I am a pollyanna, because I choose to live my life counting blessings rather than counting hardships.  But I can tell you I'm no pollyanna.  I have a firm grasp of reality that doesn't always serve me well.  Sometimes I think it would be so much easier living in a shroud of fantasy, because reality can be pretty darned tough at times.  I prefer to be in control over myself and

Thursday, August 9, 2012

Life paths and the hidden blessings

Life is full of ah-ha moments and opportunities for learning and gaining insight about ourselves.  Do you ever wonder what your life path would have been if different decisions had been made during the journey?  I have observed that life's most powerful lessons have come to me during the most difficult times.  And if I would have changed anything during the journey I wouldn't be where I am right now.   During the worst of times I have always searched for lessons to be learned and the positive message that was hidden in the struggle.  The interesting thing about the hidden message is I wouldn't have had an opportunity to ponder that message if I hadn't experienced those challenging struggles.  Those difficult moments are an opportunity and it's important not to miss it.  It's as though some higher power is giving me a kick in the seat of my pants to get my attention.  I have thought, "Well I wonder what that was all about!"  Those "kicks" have made me stop and take another look at my priorities and values, and as a result my life path has been forever changed.  Whether that change is for the good or for the bad depends on how well I listen and what I ultimately do with that information.

My life path has taken me on a fibromyalgia journey and I am in good company.  Fibromyalgia has

Sunday, August 5, 2012

Keeping the energy flow . . .

You know I just love those old muscle cars.  Do you remember all those 50's and 60's cars running at the drag strips across the country.  When I was in my 20's and 30's I was going at top speed just like those old cars were in their day.  But then I hit my 40's and I hit rock bottom with CFS/FMS.  As the years have gone by I have spent time longing for those days when energy was in abundant supply and I took it for granted.  I have found that as I age I take less and less for granted and appreciate life's little moments.  I have a number of strategies for keeping my energy flow going.  I have learned to temper my activity even though I have a day with a little more energy.  I savor those days and don't run around like a wild woman depleting my energy bank, because I know I will be in negative numbers the next day.  I always set a few goals for the next day instead of fretting over the long list of things that need to be done.  The stress of fretting is harmful and after all I get to set up the rules.  Right?  I listen to my body carefully and respect the messages it is conveying to my brain, which used to override anything my body had to say.  In the end the body rules and when the brain doesn't listen to

Saturday, August 4, 2012

Are you sleeping at night??

So, are you sleeping at night?  If you have chronic fatigue syndrome or fibromyalgia the answer is most likely "no".  Difficulty sleeping and waking unrefreshed are hallmarks of both disorders.  I have recently done more research on the subject and I was surprised to find out that so much is known about fibromyalgia related sleep disorders.  The National Sleep Foundation ( provides some basic information about this unique sleep disorder, but a Web site that provides the most comprehensive information about fibromyalgia and all the difficulties encountered with this syndrome can be found at  If you would like to read specifically about fibromyalgia related sleep disorders you can access that information at  It seems that people with fibromyalgia have what is called an alpha EEG anomaly.  An EEG (electroencephalogram) is a

Friday, August 3, 2012

Willis-Ekbom Disease (aka restless leg syndrome) continued

Yesterday's blog was about the renaming of restless leg syndrome to Willis-Ekbom disease and I described symptoms and the seriousness of this disease on quality of life.  Today I want to share my personal experience with this disease.  If you go to the RLS Foundation Web page there is a button to click that shows the faces of RLS.  There are so many children that have this disease and the faces really bring a human element to this debilitating disease.  Your face may be one of the many faces that remain unpublished.  I know mine is.

When I was growing up I would have restlessness and that crawling sensation in my legs on occasion.  My mother told me it's just growing pains since that's what she was told as a child.  My maternal grandmother was also a "Nightwalker".  Sounds sinister don't you think?!  So I too am now

Restless leg syndrome's new name is Willis-Ekbom disease

So very little has been know about restless leg syndrome (RLS) and many people don't realize how debilitating this disease can be.  The RLS Foundation is leading the charge to change the name of Willis-Ekbom disease in an effort to give this disease credibility as a neurological movement disorder, which is related to Parkinson's disease.  If you, a family member, or friend are currently suffering from this disorder it may be beneficial to see a neurologist to assess the need for treatment.  You also may need to see a sleep specialist for a definitive diagnosis.

Willis-Ekbom disease involves the neurotransmitter dopamine.  Parkinson's disease also has a dopamine deficit due to the part of the brain creating dopamine is no longer manufacturing dopamine.  With Willis-Ekbom