Tuesday, July 31, 2012

How Do You Cope With Chronic Fibromyalgia Pain?

Coping with chronic fibromyalgia pain is a difficult task to say the least.  Chronic relentless pain may result in a number of consequences including sleep impairment, increased fatigue, difficulty coping with everyday stressors, depression, an impaired immune system, irritability, difficulty concentrating, difficulty with decision making, reluctance to socialize, loss of personal relationships, inability to complete daily tasks, inability to participate in activities, and feelings of grief, loss, loneliness, sadness, anger, and frustration, just to name a few.  In addition, fibromyalgia is an illness that is poorly understood by family, friends and healthcare professionals.  Chronic fibromyalgia pain

Sunday, July 29, 2012

The Invisible Illness

One of the most emotionally distressing components of fibromyalgia syndrome is the feeling of being invisible to those around us.  It seems as though no one "gets it".  I have friends that seem to listen intently as I tell them about my pain and the myriad of other symptoms that make up this complex syndrome.  I can see their impatience as their eyes glaze over and they change the subject.  I realize that I have just used what precious little energy I have on an seemingly impossible task.  I feel defeated, alone and frustrated . . . and angry too.  I think about my strategy in attempting to get my message across to just one person, but my strategies have been exhausted and I want to stand on the rooftops with a megaphone like a curbside preacher and try one more time.  Doesn't anyone understand?

Let me tell you about my daily encounters with Freddie.  I have a small garden lizard that comes out to sun himself on the couryard wall.  I named him Freddie since our daily talks have turned into a good friendship.  He always looks as me suspiciously as I discuss the events of the day with him.  While I talk he keeps a keen eye on me while simultaneously watching for a meal in the form of an unsuspecting insect.  He also watches carefully for the Roadrunner that suddenly appears out of nowhere and threatens to devour him in a single bite.  As I talk with Freddie he seems to be a good listener as he gazes into my face.  But as I watch him closer I can see his indifference about my personal concerns.  Can't you just see the indifference in his expression?  I can tell he is more interested in his own daily plight and he is quite preoccupied with

Thursday, July 26, 2012

My Inspired Life With Fibromyalgia: We Need to Fight Fibro Indifference

My Inspired Life With Fibromyalgia: We Need to Fight Fibro Indifference: Indifference refers to the lack of interest or concern from others. Everyone I have spoken with who has Fibromyalgia has suffered not just...

Hi Emily,  I think people's lives are so busy and preoccupied with their own survival that there is little time left to think about the many invisible diseases, including fibromyalgia.  I currently have people in my life that are rather harsh, critical and have little understanding or empathy for the struggles of others.  I have tried to educate people like this and its as though I have spoken to a brick wall.  I think people are who they are and we can't change that, but we do need to insulate ourselves from that.  After all it's one person's opinion and how much is that valued anyway?  When that criticism and lack of understanding come from healthcare professionals it is a far different story.  People are truly vulnerable when in the presence of these professionals.  The healthcare professionals have power over us, so we must choose carefully.  The fibromyalgia community is becoming stronger and more globally connected and that is important for all of us.  May the future for fibromyalgia sufferers be brighter!  This is truly a debilitating disease and care, compassion, and love are part of the cure. 

My best to you,  Valda

Auras of Energy

I have started going to a gentle yoga class weekly.  It is a small, intimate group that meets in a community meeting room with an expansive view of a small lake.  A wonderfully refreshing ocean breeze wafts gently over each of us through open windows and doors.  This ocean breeze originates from the Pacific ocean and travels through the canyons to cool and soothe us as we meditate and bend and twist into our gentle yoga poses.  Each week before we get started we  randomly choose as many inspirational cards as we want as a focus for our gentle yoga practice.  I chose two cards; the first

Monday, July 23, 2012

Hope is the thing with feathers . . .

Hope is essential to survival and yet what is hope?  Have you ever been in a place in your life when you have lost hope?  When hope fades a hollow cavern remains.  It's as if someone or something has stolen your very soul and spirit.  Emily Dickinson wrote of hope in her famous poem:

"Hope" is the thing with feathers
by Emily Dickinson (1830 - 1886)

"Hope" is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard,
And sore must be the storm
That could abash the little Bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

from The Complete Poems of Emily Dickinson, edited by Thomas H. Johnson at

Have you ever endured a storm so fierce that hope began to fade and that little bird no longer sang?  That moment is the most difficult of times in your life.  It is so important to protect that little bird -- feed it, nuture it and shelter that little bird, because your life and survival depend on that.   One thing that I am absolutely sure of is that even during your darkest hour that little bird still sings.  He may

Saturday, July 21, 2012

A little liquid sunshine . . . wheatgrass!

Did you know that wheatgrass is known as a miracle cure for everything that ails you??  That's right.  People have claimed that wheatgrass is the fountain of youth, is an appetite suppressant, improves digestion, purifies the liver and even keeps your hair from graying.  Just think of the time and money you could save at the beauty salon?!  Now don't run out and chew on some wheatgrass, because it isn't quite that simple.  First you have to find a good deal on some wheatgrass seeds also known as wheat berries or red wheat berries.  You can find them in bulk foods in your neighborhood health food store.  I found them at Sprouts Market.  Anyway, get yourself a planter, some organic soil, maybe some steer manure (plants love it), mix that soil up good and throw the soil in the planter.  Take your wheat berries and soak them in water for 24 hours.  I had sprouts coming out of the wheat berries within 24 hours!  Next, sow the soaked wheat berries in

Wednesday, July 18, 2012

Good humor goes a long way

No, I'm not talking about the ice cream!  Although that's good too . . . I'm talking about the laugh outloud good humor.  If you happen to be short on some good laughs it's always beneficial to watch your own behavior.  Having the ability to laugh at yourself is really wonderful. That means you are okay with being human and you freely forgive yourself and accept yourself just the way you are.  Your authentic self!  I remember a woman from many years ago that suffered from schizophrenia.  She was a sweet woman with a naive innocence.  She had upper dentures that were too loose and her

Sunday, July 15, 2012

The Fibromyalgia Warriors . . .

A long time ago, maybe 18 years, I was reading a mini book about chronic pain and there was a quote that struck me, and you may have see this before too:  "Pain is inevitable, but misery is optional."  I wish I could give proper credit to the author, but that little book is long gone with the several moves I have made.  The reality of Fibromyalgia/Chronic Fatigue Syndrome is that both chronic pain and misery are inevitable.  The optional part is how you choose to approach pain and misery.  Not a task for wimps, that's for sure!  I am impressed and inspired by the number of people with Fibromyalgia/CFS that approach their illness with dignity, grace, fortitude, humor and comraderie.  Not every chronic illness has both components; dealing with pain and misery together is the sign of a courageous warrior.  It isn't easy to identify these warriors, because they wear a clever disguise:  smiles.  How remarkable is that?  These warriors look "normal", they act "normal" and they don't complain.  Hmmmmmmmmmmmm.  The energy it takes to be among other people and have a conversation is astounding.  Especially when word find is so difficult and fighting through foggy confusion to gain clarity is ever present.  And that dang pain and misery can be so hard to ignore with its constant tug at the consious brain.  Kudos to all those warriors that wear their clever disguise every day and to those warriors that dare to tell the truth in a public forum.  You open yourself up for criticism, but to say nothing is to risk nothing and is to be nothing.  I heard that line not long ago and I'll be darned if I can recall who said that!!

I thought I would share something from my garden that inspired me today.  These blooms are so fleeting, they last about a day.  It reminds me of the moments when I can push the pain and misery from the forefront and it becomes mere background noise.  Whatever you do today, enjoy your moments!  Blessings to you . . .

Friday, July 13, 2012

Rainy Friday

What a beautiful day!  It is rainy and humid and smells just like a Louisiana swamp . . . yesterday too.  The hummingbirds are in a feeding frenzy since I discovered how to make my own hummingbird juice.  The sugar to water mixture I have tried in the past was rejected, but I discovered they have a really BIG sweet tooth!  I am now mixing 4 cups water with one and a quarter cup surgar.  That mixture will spoil faster, but from the feeding frenzy on my side patio I don't think that will be a problem.  Ha!  I love to watch them argue for territory and then they settle down around the feeder like good friends having a drink together at the bar.  And then one disrupts the group and a bar brawl breaks out.  It reminds me of a good John Wayne western!  I attempted to take a pic to share, but those little birds are far too fast for my shutter finger.  A video may be a better idea.

I'm still working on gaining a clearer understanding on how all of this technology works.  My brain is not as sharp as it could be so I spend time relearning the technology frequently.  I don't get frustrated . . . I just keep plugging away at this with determination.  Thanks for your patience!

Getting some sleep last night was a familiar challenge, so maybe stopping the 50mg Benadryl was not the best idea.  I will be seeing a sleep specialist on August 1st so it will be good to possibly get some new ideas on how to manage sleep.  Does anyone have thoughts and expertise on getting a good night's sleep??

Thursday, July 12, 2012

The Cycle of Life

Everywhere I look I am reminded of the cycle of life.  I especially see it in my garden, because that cycle is so abbreviated.  I also see the struggle and fortitude of the living things around me; plants as well as animals.  Last spring I took my loppers and chopped away at a neglected hedge that had sent long stems out to intertwine with each other.  In my effort to reshape the hedge, my vigorous chopping resulted in neatly rounded sticks where vegetation once grew.  Sid thought I had killed the hedge, but I had faith in the survival instincts that living things rely on when met with a formidable challenge.  That was 3 months ago and it makes me smile when I see how vigorous this hedge is growing, sending out vines of flowers to lure bees and hummingbirds.  I wish I had taken a picture of that slumbering hedge as it prepared to reawaken with vigor for life.     

I had also chopped away at the Rose of Sharon, which had so unruly attempted to cover the house.  The branches had sprawled past the roof edge threatening to close off every ray of light.  I was so satisfied by the progress I made in controlling this plant and I held the false belief that it would take several growing seasons for this scrub to recover.  Instead this plant rewarded me with a burst of lilac hued blooms edging past the roof edge as if to laugh in my face at my futile attempt to control the vigor of life.

 I too have been challenged as all living things are and at times I appear to be a mere wisp of what I once was.  But today I am better and so I get out of bed with a zest for life, put on my makeup and go out to say hello to people around me and I laugh.  I am not so easy to extinguish even though my vital energy hangs in the balance.  It is my spirit that is full of fire and I protect it as a fierce warrior protects a precious jewel.
My identity hasn't changed since I have developed FMS/CFS.  It has been important to me that this illness does not rob me of my life.  Life is certainly different now, but throughout our lives all of us must make accommodations for all the changes that take place.   I have seen so many ill people in my career, which makes me feel fortunate and grateful that my health isn't worse.  I say that in the spirit of not minimizing what each person's experience is.  It is so important to provide emotional support, caring and kindness to one another.  After all we are in this together!  Blessings to everyone coping with a chronic illness.  Warmest wishes,  Valda