Potsdam Fibromyalgia Support group

Newsletter

June, 2003

Fibromyalgia Awareness Day

Our first Fibromyalgia Awareness Day (FMAD) workshop was a success, with many excellent presentations and lots of excellent food and drink. Some highlights:

v     This year’s FMAD honored Debbie Wells, who has done so much to keep the Potsdam support group and to get the Massena support group started. We all owe her our thanks!

v     The support group honored Leslie by giving her a wonderful ‘memory book’ with photographs of support group activities, letters from support group members, and clippings and tidbits from other aspects of her life. It will be at the next Potsdam meeting for people to look at.

v     Linda Dashnaw gave a very moving presentation about living with FMS. Those of us who were there were touched by the sensitivity and power of her words. Linda has graciously allowed us to reprint her talk for others to enjoy. This is part 1; part 2 will be next month.

 

My Journey is Still an Upward Climb

By Linda Dashnaw

They say “whatever doesn’t kill you makes you stronger.”

Well, I don’t like to complain but…

I am now a dreamer with limitations

And a giver when I’m able.

That bothers me.

Whenever I dare to dream big, this bigger weight on my shoulders pulls me down to reality.

Whenever I put faith in the credo that “it is better to give than receive”,

I find that I am too quickly tapped-out and slow to recover.

Those are the times that I get the most discouraged.  I am overwhelmed by the length of my “Things To Do” list, as it gets longer and longer due to my lack of energy.  On a good day, I have hope.  I make plans; I push myself to do as much as I can - only to find that I have quickly burned out before accomplishing much of anything.  I sit there feeling as if God Himself is against me.  I feel alone and angry, full of frustration as I curse the demons in my head…

And then I say to myself in quiet contemplation a poem that I learned as a child:

Count your garden by the flowers

Never by the leaves that fall.

Count your days in golden hours

Never by the years at all.

Things could be worse.  I should count my blessings.  This is not a terminal illness.  My children, mother and father are alive and healthy.  My husband built me a wonderful house because he loves me.

So – maybe this is just God’s way of keeping me humble.  You see, I am also a perfectionist.  I want the best of everything for everyone and that is an unattainable goal.  No one is perfect and we all have a cross to bear.  Why should I expect so much of myself?

 

AWARENESS

Before I was diagnosed, I kept thinking “What is wrong with me?  Why can’t I function like other people?  I’m young.  I look healthy.  My doctor said that it’s all in my head.  Why can’t I just change my attitude and feel better?  I’m a nervous wreck.  I’m losing my self-respect.  I’m yelling at the kids.  I’m nagging Tom.  I don’t want to be this miserable to live with.  Come on, Linda – GET IT TOGETHER!!!

A year after weekly trips to the chiropractor, things weren’t improving.  I had been trying to pull myself out of the depths of despair since high school and I was beginning to believe that I was certifiably NUTS!

Then I saw it… A short article in the newspaper about Fibro (what?) Myalgia.

Oh – My – God

It was describing ME.

Widespread, chronic pain and tenderness.  Migrating to all parts of the body with varying intensity.  Numbness and tingling.  Morning stiffness.  Discomfort aggravated by cold and humid weather.  Non-restorative sleep.  Physical and mental exhaustion.  Inactivity, anxiety and stress.  Irritable bowel and bladder, vision problems, impaired memory and concentration.  Depression.  Average age at diagnosis: 43.  I am 44.

What a breakthrough.  I went to my first support group meeting.  They referred me to an empathetic physician.  He listened and took my symptoms seriously.  He ran some tests and soon I had my answer.  I finally knew the name of what I had been dealing with for so long.  I was strangely relieved.

 

ACCEPTANCE

I am taking medications.  That seems to be balancing my biochemistry.  I am also taking a pill at night that helps me achieve a deeper sleep so my body can truly rest and repair itself.  I have practiced biofeedback techniques to help me breathe, relax and acknowledge the tension that I carry around every day.  Physical therapy exercises have kept my muscles and tendons more flexible.  Better shoes have helped my feet.  My dog looks at me with compassion and understanding.  She begs me to get up and walk with her.  I need that.

Am I cured?

Never.

Have I learned to pace myself? Yes.

Do I accept the moments of fibro fog and the humiliation that goes with it?

Well, what choice do I have?

I cannot control everything that happens to me.  I have had to accept this life-altering illness.  I have had to pass through the shroud of grief that was hanging over me – the doom and gloom of it all.  I now embrace this condition.  I own it.  It doesn’t have to own me.

To manage fibromyalgia means assuming responsibility for my health and well-being.  I have to let go of the guilt of doing less.  Good-bye Superwoman.

To be continued in the next Newsletter…

 


 


June 10th Massena Meeting: Chi Gung

Roberta Paccione will present on chi gung, an ancient Chinese form of breathing and movement. She will show us the gentle and non-strenuous movements of chi gung, showing how you can do them sitting or standing. The meeting is at 6:30 pm in Massena Memorial Hospital.

 

No June 25th Potsdam Meeting

Because this is the last day of the physical therapy student educational program, there will be no support group meeting in Potsdam. All Potsdam members are encouraged to attend the June 10th Massena meeting!

 

Summer Fibromyalgia Picnic

The Potsdam Fibromyalgia Support Group will have its annual summer picnic this July 24th at 6 pm at Clarkson Hall. The picnic has always been a great time to hang out and talk about all sorts of things other than fibromyalgia. Potsdam and Massena members, friends and family are all invited. Put it on your schedule!

 

If you would prefer to receive these newsletters electronically (and save a few trees), please send your email address to gilberta@clarkson.edu.

 

If you would like to be removed from the FMSG mailing list, please contact us at the above email or by phone at 261-5460.