Friday, August 27, 2010

Are You Ready For The Fight Of Your Life?

Because that's what its going to take if you ever want to have anything resembling a quality of life again after Fibromyalgia knocks on your door and worms its slimy miserable self into your life. At least that's what it took me. As I am networking with a multitude of TOTALLY AWESOME AND AMAZING fellow "fibrates" through Facebook I keep seeing a many people at different stages. Some are broken and defeated, some are hanging off the cliff of optimism by their chipped and cracked fingernails, some have taken control and have life managed so it works for them. Not the same as before, but somehow livable. Anyone who has ever had this knows there are plenty of stages that are not livable. There are so many different forms this disease takes on. It effects everyone uniquely and there are usually so many other health complications we all suffer from, desperate to know if they are "related", but never getting an answer. The constants I am finding seem to be:

1) It will not kill you, no matter how badly you want to kill yourself
2) It will take EVERYTHING from you if you let it
3) There is a significant amount of self-pity, fear & depression each person must go through
4) This is absolutely something that the 5 Stages of Grief apply to, but the order is often different:
 Kubler-Ross model: Denial, Anger, Bargaining, Depression & Acceptance

Leah Tyler's Fibromyalgia model: Denial, Bargaining, Depression, Acceptance & Anger
DENIAL- Doctor after doctor telling you there is nothing wrong with you and it's all in your head, and part of you possibly believing them because this makes absolutely no sense?
BARGAINING- With yourself to just get over it already! And with those we love, work with & are friends with to understand what is happening is indeed real.
DEPRESSION- Because this is real and one is no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and PURE UNBEARABLE PAIN take over. If that's not depressing I don't know what is.
ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I AM NOT GIVING YOU ANY MORE OF ME! So if it is the last thing I do on God's green earth I will get something close to a quality of life back...

And that is when it really gets interesting. Without the fight, without the anger, I do not believe I ever would have recovered to the point of managed.  I had too much to live for and could not comprehend at the age of 28 the rest of my life was going to be spent as a disabled invalid. But how does a person that is in so much PAIN find fight? How does someone who has been broken down and beaten and pulverized into mush re-construct their mental fortitude enough to INSIST on repairing their broken body, soul and psyche? That is where the inner strength comes in that only the truly marvelous in life get to discover about themselves. That is the depth of character and quality a person possesses that roars its raging lion head at the circumstances in life beating them down, takes a huge fleshy chunk out of it and keeps on ripping and tearing away at it until the lion stands proud and tall on top of the stripped carcass of disease.

Managing Fibromyalgia was without a doubt the hardest thing I have ever gone through in my life. The disease itself is bad enough, but the doubt and lack of compassion from the world at large creeps deep into the heart of a person and inflicts wounds so broad and scaring they are darn near impossible to recover from. As a person looses their ability to work and support themselves, parent their children, engage with their significant other, maintain friendships, perform basic duties (like showering and making the bed), participate in a social life, laugh, play or love, the despair and hopelessness can swallow you whole! There were people in my life that criticized me harshly for stepping outside the confines of modern medicine and embracing a holistic approach. Those same people would be sitting here doubting the validity of my illness today if I were still that crumbling-quivering-unable-to-function mess of a woman. But I am not. I charted my own course, forged ahead, learned how to stop giving a rats-woo-ha about what anyone else thought, stopped looking for acceptance and approval where none was to be found and clung to strength and hope I did not know I possessed.

You, my dear Fibro-friends, are the chosen ones. You are the ones that must grab your life, whatever is left of it by the time you are forced to tap deep into your internal strength, shake it silly, believe in yourself and forge on to build a better tomorrow. Keep "interviewing" doctors until you find 1 that believes you and listens to you. Let the world know you are hurting, but you are working on making it better. Project a life of confused sanity, not sloppy despair. I know my worst doctor appointments were the desperate ones. The ones where I went in crying, needing, forlorn for help, only to be dismissed and turned away. See they don't know what to do with us, we are messy and complicated. Our diseases are too new to their scientific minds so therefore are dismissed. But let me ask you one question...Will medicine or science ever progress or discover anything new? Of course it will! And one day we will be understood. Till then, do the best you can, love yourself and BELIEVE IN A BETTER TOMORROW, for if you don't it will never come.

Thanks for joining,


  1. FANTASTIC post, Leah! We are in for the fight of our lives, for our lives. Once you're diagnosed, you're never going to be the same. It can be hard to let go of that. In many ways, it can make you a better person, but you've got to fight like hell to get there.

    Here's to all of us doing battle...

  2. Cheers to a fellow-fighter, a fellow-believer! God bless us all!

  3. I have tears. Good God it feels so good to not be alone anymore. I love reading your blog and the way you march on evokes the feeling of "I can do this!" in my own spirit. Go girl!