Conquering the Pain

A zuni bear bracelet and matching earrings

Pain is quite a formidable foe.  It demands our constant attention, saps us of our energy, destroys our quality of life, turns us into grumpy people that no one wants to be around, and robs us of our life.  People with fibromyalgia have a daunting task to cope with pain that expresses itself as pins and needles, burning pain, sharp, shooting and stabbing pain, throbbing pain, body aches, dull aching pain, cramping pain, muscle pain, focal or global headache pain, pressure pain . . . have I described this accurately?  If you have fibromyalgia I'm sure you have additions to this list.  To sum it up it's total misery and fibromyalgia pain can prevent us from participating in activities that we enjoyed prior to the onset of this illness.  But never underestimate the power of the human mind.

Bead embroidery: a work in progress

The human mind has the capacity to overcome many obstacles regardless of how impossible those obstacles may seem.  The joy of learning is a key component for overcoming moderately severe or even severe pain.  This may sound too simple to be true, but it is.  People with fibromyalgia tend to be Type A personalities and that can actually work in our favor.  Challenges and learning something new exercises the brain and improves cognition to lessen the confusion, brain fog, and disorientation.  Learning when cognitive impairment is present requires a great deal of patience and determination, but as the brain engages in learning, cognition does improve.  Another component to overcoming fibromyalgia pain is fortitude.

My friend, Lori's, bead embroidery

A good friend of mine that has fibromyalgia and other chronic illness reminded me of how to overcome the pain and misery of fibromyalgia by introducing me to the world of beading.  I have found that beading gives me a creative outlet, provides me with social time each week with beading friends, and lessens my pain by engaging my brain with a new found passion.  I just love to look at all the beautiful beads and dream about what I can make with my beads.  The biggest problem with having a passion is having the sense to know when I need some rest.  Balancing activity with rest is the most important and beneficial tool that we can have in our fibromyalgia toolbox and it's a fine line between the two.  If we get too much rest we go downhill physically; if we get too much activity we go downhill physically.  It's quite a dilema and requires an astute balancing act, but with practice it becomes easier to know where that line is drawn. Balancing activity and rest is different for everyone and changes from day to day so no wonder this is a difficult task.

A set that I just finished this morning

If you want to lessen your pain and increase your activity, find your passion and balance your passion with other responsibilities and intentional rest periods.  You will feel better both physically and emotionally, you will increase your energy, and there will be more joy in your life.  Please send me comments about your passion and how that has helped you overcome the pain and other symptomatology related to fibromyalgia.  You may sleep better too!  Take good care and blessings to you as you face each day with fortitude, determination, and lots of patience
while you are discovering your passion!

Beyond the winter solstice

Now that winter has officially arrived in the northern hemisphere I'm wondering how everyone is doing.  The changing seasons and weather extremes are known to increase Fibromyalgia symptoms and pain.  Couple the colder weather with more activity than usual through the holidays and the result can spell disaster in the weeks following.  Even if you paced yourself the disruption of your usual daily schedule may lead to increased pain and fatigue.  I'm thinking that most of you are probably wiped out.  In addition, the shorter days have an effect on our bodies as our brain receives less daylight, which triggers a hibernation response.  When shadows grow long a sort of melancholy sets in.  The lessened daylight signals to the brain has an effect on neurotransmitters, those chemical messengers responsible for our feeling of well-being.  I am reading more and more research studies involving the neurotransmitters.  Neurotransmitters are the focus for so many chronic illnesses, which may be the critical key that will unlock the mysteries associated with chronic illnesses that currently have no cure.  Meanwhile, we must manage our daily symptoms during these bleak winter months that follow the winter solstice.

Male Northern Cardinal

I have always celebrated the winter solstice with great enthusiasm.  Despite the fact that winter is in its full glory there will soon be signs that spring is emerging, promising new life.  In the northland where winter is long it is especially important to watch for those subtle signs of spring.  In late January the male cardinal begins to sing his song in the tallest treetop perch, already staking out his territory.  He is easy to spot in his lofty perch since all the trees remain dormant and are leafless . . . and after all he is a brilliant scarlet bird that dares to taunt the predator hawks and kestrels while in such a vulnerable position.  He sings urgently

Your pain experience is unique and personal

Pain is a poorly understood phenomenon.  Pain has been treated and studied for so long, and Western medicine has made extraordinary advances in so many areas,  but we still have only a fundamental understanding of pain's mechanism.  Pain is a complex mechanism that involves physiology, spirituality, emotions, and perceptions.  As in all health issues, it involves the mind/body connection.  When people are in pain it is a completely subjective and personal experience.  Pain makes people feel emotionally out of control, which increases anxiety levels and increases the intensity of the pain experience.  That is why lavendar aromatherapy decreases the perception of pain; lavendar is a calming herb.  When I was working with an Interventional Radiology Department I observed that women experienced more pain than men when a chemotherapy port was placed in the upper chest.  When I presented that information to the port placement team it was decided to give women a prescription for pain medication before they were discharged back home.  In my follow up calls women reported they didn't fill the analgesic prescription, they still had pain, but they tolerated that pain better because they knew they were in control and could opt to fill the analgesic prescription if they wished. I have also observed from my own experience that the more pain medication I use the more I seem to have a rebound increase in pain.  Therefore I use pain medication as judiciously as possible.  That rebound pain experience

Smashed Melon

Pain. Why must you remain?
The sun's too bright . . . I like the rain.
             Everyone thinks Im insane, but its pain.

Tired -- but also so wired!
If I could get a job I would be fired.

It's hard to cope when you're losing hope.
Do you want to go?  I have to say No!

When will it end? I don't have a friend . . .
            my head needs to mend.

It's hard to fight when you can't stand the light.
There's others like me, all stuck up a tree --
            no, maybe a cave, to this illness I am a slave.

I'm losing my fight, 'cause I can't sleep at night.
I'm up and I'm down . . . my face growing a frown.

People so rude!  I've gotten a bad attitude.
People think you're lazy and crazy,
             my eyes are all glazy.

I'll pop the pill, to get the will, to climb the hill.

PAIN . . .

My eyes always red, a metal bar through my head!
Yeah -- I know what was said, these feelings I've read.

I wish it would all leave, and that they would believe --
it makes me want to heave.

When will it be gone?  It has been too long.
I will keep up a smile, but how long is this while?
              I fall in a pile.

Tomorrow will be better, so I can be a go getter.
Yes, I'll boo hoo from pain and my messed up brain,
              I'm glad for the rain.  

I can.  I can still love, I can still smile.
And at times the pain goes for awhile.

Life is not lost, but I've paid a high cost.

The Laughter is still here, although not as clear,
               but I'm losing my fear.

                           Kind of ironic in a great way....NO HEADACHE TODAY!!!


My wonderful, loyal friend, Lori, shared this poem that she wrote.  Lori is a creative jewelry artist that loves life, gardening, and people.  She has a clever sense of humor and is compassionate with others; Lori has been a wonderful support for me even though her own days are so challenging.  She is a beautiful and sensitive woman and has been ill with fibromyalgia and other complications since she was in her teens . . . for about 31 years.

It's Just a Day . . .

Do you see the pain I feel

                  in my face or in my eyes?

Do you believe that this is real

                  or feel I'm living behind a lie?

 

When I cry do you hear?
                   . . . do you listen when I talk?
Do you understand my fear?

                   . . . or am I just someone to mock?

 

Does anyone out there even know

                 what each day I face could be?

I can't stay but I don't go

                  sometimes it's hell just being me.

 

So I walk away head held high

                  back held straight and strong.

It's the way that I get by

                  lasting only as the day is long.

 

So here we go

                         another day

                                              I don't know

                                                                    what's left to say . . .

My good friend, Tracy, wrote this poem.  She is a strong, accomplished and beautiful woman with a delightful sense of humor.   Tracy loves gardening, and her wonderful dane puppy, Jagger, and she is enthusiastic about life.  I treasure her friendship more than she will ever know!  Tracy has had fibromyalgia for 18 years.

Enthusiasm goes viral!

People are automatically drawn to high energy people that are passionate about life. That energy and passion are so "hot" that they are out front and center. These are the people that love life so much that they wear it every day as if their own life depends on it. In a way, their life does depend on it, because where is the quality of life without enthusiasm?   When enthusiasm wanes so goes joy, passion, happiness, satisfaction and life purpose. When your life purpose is lost and enthusiasm becomes a distant memory, your brain will retreat into a sad and dark place.

Have you ever watched a child at play?   They love to explore everything in their world with a great passion. It is so fun to watch their life adventures as we personally yearn for the enthusiasm of those earlier years. Children are so enthusiastic that they run wherever they go and they are living life large at full steam ahead at all times. No wonder they sleep so well!   So what happens to that enthusiastic frenzy that characterizes the waking hours of a child?

Maintaining enthusiasm and passion for life requires energy and resilience. Each year serves up challenges that test our resolve. These challenges become more intense as energy wanes with age or from a chronic illness, like fibromyalgia. As the years go by we vigilantly compile a mental scrapbook of all our life experiences and challenges. Every day our brain revisits that mental scrapbook in our conscious and subconscious mind. That scrapbook review shapes your day and your response to all the day's events. Your life scrapbook that showcases all your life experiences is a truly powerful book indeed! Your life experiences scrapbook demonstrates who you are and those pages are shared selectively with others every day. As your scrapbook's pages fill up you may get weary of keeping it up to date and decide not to add more pages. That's an indication you have decided to lose your enthusiasm. So what have you put in your scrapbook, what is the title of your scrapbook and how have you displayed your important life events?   Have you decided to use bright, eye-catching colors for those difficult days or for the valuable lessons learned?   Does the title of your scrapbook portray a life of enthusiasm and passion, or a life of defeat? 


Sid

Sid is a remarkable man.   He is an excellent example of enthusiasm for life. The only way people know that Sid survived stage 4 malignant melanoma and several years of potent chemotherapy that would have been the average person's demise, is the radical neck dissection scars he wears every day.   Sid maintained a positive life outlook and enthusiasm for life despite the doctors that told him he was going to die. That didn't discourage Sid, and his determination and enthusiasm ultimately defeated

My Garden Guest

There came a little garden guest
a rapping on my door
to ask of me about my quest
and about the pain I bore.

She delighted me as she flew
and looked me in the eye
as if to tell me that she knew
I worked to just get by.

There comes a day, she conveyed to me,
when hope will find a way
to let me know friends are the key
and love me come what may.

And as she spoke to me that day
the tears began to flow.
I had no single word to say
so how was she to know?

The loneliness of this disease
just claws within my soul
and makes my pain so much to bear --
a mean and nasty foe.

But the wisdom of those simple words
console me through tough times
and soar within my soul like birds
with love and joy divine!



This poem is a tribute to Sid, my best friend and life partner, and to all of my friends  that stand by me every day during this journey with love, compassion and hope.  May each of you be blessed with enough love to make each day better and give you hope for tomorrow.  Blessings to you!

Don't ever let them see you sweat!

The beauty of having an invisible illness is you can fool all the people all of the time instead of just some of the time.  Of course there are those little cues that may give you away, but most people aren't that observant.  I was able to fool people for 15 years and during that time I was able to put money away for retirement and get the Masters degree I always wanted.  I wasn't able to work full time and go to classes too so I found a great online university that gave me the flexibility I needed to take care of myself and continue to work.  Those were really hard years, but it was worth it.  Because of those years I know exactly what I'm made of.  I ultimately had to retire early, but life is still good for me.  I roll with the punches and I never let anyone see me sweat.  My strong will and determination have served me well and gotten me through many life miles and I'm not ready to be put out to pasture just yet.  Sure I have limitations, but I don't make that my focus and I just work with it throughout each day.

We can't wait until everyone understands us and our fibromyalgia.  We need to keep moving forward and living our lives.  I work every day to educate others about fibromyalgia, but this is a crusade of patience and persistence.  When I was first injured 19 years ago I was in severe pain.  I decided to learn more about chronic pain so I bought a book.  I don't recall the name of that book and I don't even recall much about that book.  My take away from reading that book was inspite of your pain, don't make faces.  That was an ah-ha moment for me.  No one wanted to see me focusing on my pain