I decided to break my routine this morning and skipped our invigorating walk, instead taking the puppies to the park. The wild Porkie needed to run out some of her puppy energy I can never walk fast or long enough to exhaust. I remembered a Starbucks gift card sitting in my wallet and threw the laptop in the car, thinking we would sit outside while I worked and we could enjoy the sunshine and warmth. It is finally cool enough to go outside! Seated next to me was a group of women planning a fund-raiser. They struck me as the Junior League ladies-who-lunch type and snippets of their conversation floated my way. Eventually it turned toward their emotionally immature husbands and the troubles of their lives. I eavesdropped with barely concealed rapt attention. It was an opportunity to see into the world of the normals, a land I left so long ago! Oh their problems were so different than ours, and I realized I had forgotten what it was like for every action and reaction to be not coated in the reality of chronic illness!
As Fibromylagia patients we are pretty used to ups and downs...the fluctuation of mood, hormones, pain levels, reactions to meds, the ability to sleep, financial stress, obligations, oh the list goes on... And those that live with us or work with us or for some odd reason actually hang out with us by choice have to learn to either engage or disengage with that behavior. No, living with Fibromyalgia, or with someone with Fibromylagia, is not easy. I hear from a lot of you that many of your significant others and close family have chosen to disengage and this breaks my heart. I know this adds greatly to your stress level and that translates directly to your health. I see many sitting in a holding-pattern marriage waiting for the signal to land and deplane. I see the anger and frustration, hurt and pain. I see the ache caused by bewildered abandonment from parents and children. I know this only compounds the many symptoms we suffer from and wish I could wave a fairy-godmother wand over every one of you dear souls and take the confusion and betrayal away. But I can't. No one can. Just like no one is going to give you a magic pill or treatment or cure for the pain and exhaustion to make Fibromyalgia to go away. And so it all coexists...
But there is a way to improve the quality of your life. It takes a lot of hard work and determination. It takes personal excavation of learned behaviors and emotional wounds. It takes buckets of forgiveness, toward both yourself and all those that have hurt you along the way, but this in no way means allowing them to continue to treat you poorly. It takes a come hell-or-high-water I will do this! type of attitude. It takes support from others and belief in yourself, and I believe we have laid that foundation here! The Fibromyalgia Crusade is a mentality. Its all about changing the reality of living with Fibromyalgia, not allowing that "blame the patient" mentality to exist anymore, beat us down, chew us up or spit us out. It is about the change starting with us, right here, right now. We had our first meet-and-greet, two Fun House friends met in person and had a blast! My heart got all swelled up and bubbly when I heard this! That is true support, and it is happening because of all of you that take the time out of your day, your day full of pain and exhaustion and obligation, to click on The Fibromyalgia Fun House and see what the rest of us have been up to. So will I ever be sitting at that table next to me at Starbucks, engaged with the normals planning the next Junior League function? No, I most certainly will not. I will be next to them absorbed in the charge of our cause to make this world a friendlier place to be sick with Fibromyalgia.
Thanks for joining,
Leah
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