Tuesday, May 12, 2015

Launch of the new Beafibrofeenxrsing Truth Talks video series

So it's May 12th and it's that time of year when we gather our forces and shout loud and proud that we have Fibromyalgia... Of course it's all about awareness and it's important to have a day that we can dedicate to educating the public on our need for both support and a cure.

My question is, why is it only one day... Why is it that we choose to hide our illness the rest of the year - why do we put on fake smiles and pretend that we aren't hurting?  Don't you think it's time to demand our right to health and happiness?  I do... So today I am releasing the first of a new video series called Beafibrofeenrising Truth Talks... A Candid exploration of what life is like with Fibro - an honest sharing of my own personal experiences with the disease.  Along the way we will explore all the different elements that need to be addressed in the journey back to health.  I hope you'll join me on this adventure so that we can come together in solidarity of our right to live normal, pain free productive lives.

Niki Norlock, author of Truth - My Synchromystic Journey

Sunday, May 10, 2015

A Mother's Day Tribute to a Fallen Fibro Warrior

For years I’ve hated Mother’s Day…

Even though I myself am a mother and recognize that it is a day to honor those who hold our future in their hearts and hands by caring for and loving our treasured young, I simply have not been able to find it in my heart to celebrate.  I’ve been too angry you see… Too angry at my mother for passing away when I was only in my late 20’s, too angry that she passed away from something that could have easily been avoided and much too angry that she passed away on the one day that a mother is NEVER supposed to leave a child; Mother’s Day.

I used to joke that it was her way of insuring that I never forgot the day, all my life I have been horrible with remembering dates; I can’t count how many times I forgot her birthday, mother’s day and my parents anniversary.  It seems callous and cruel that I would speak of her date of departure so casually but I needed some kind of emotional defense against the very real and only deniable to myself fact that I was well and truly pissed off that she would dare abandon me so soon.  Yet this year I decided to look at it in an entirely new light, this year as I move towards a lifetime of working with women who like my mother (and myself) are fighting the good fight against the disease called Fibromyalgia, I will use her passing in May as a shield and a sword that serves in the fight for health and wellness. 
So she passed away on Mother’s Day, that means she passed away in May only a few days before what is now an extremely significant date in my world; May 12th, International ME/CFS & FM Awareness Day, a day when Fibro Feenxs around the world spread their wings and rise from the illness ashes.  I wish she’d had the opportunity to do that, I wish that back in the day, when she was diagnosed that people understood what Fibromyalgia was but the truth is they didn’t and it was that fact more than anything that resulted in my mother’s untimely demise.  Of course she did not die from Fibro directly, nobody ever does… Yet it does kill… It kills some people through the effects it has on their emotional state, leading to deep depression and occasionally suicide.  Some people (like my mother) die a much slower and uncomfortable death as their bodies systematically shut down from abuse of prescription pain killers combined with alcohol and other medications that are utilized in the never ending quest to ease the pain.    

Tuesday, May 5, 2015

The Madness MAKING of CFS/ME

Guest Blog - written May 2, 2015 

Dr. Nancy Klimas, an expert in ME, CFS, and AIDS, was quoted as saying, "A CFS patient feels the same or worse than congestive heart failure; the same or worse than late stage AIDS. If I had to choose between the two illnesses, I would rather have H.I.V. "

Not to say that it's easy having AIDS either, but CFS/ME (and Fibromyalgia) does not get the credibility for the seriousness of how deeply those afflicted suffer invisibly, or the understanding of how insanely hard and challenging it is on a daily basis with very little relief that goes on year after year into decades. And for many of those years and decades, I only lived with "it" and didn't have a name for this invisible torment that no words can describe as I was left for dead by the medical community.

I kept quiet and tricked people for too long about this and now I am finally being honest; being honest to give voice and validation to so many of us as we have hidden in shame and confusion. But now it's time to get real. Talk about it. I downplayed it for decades and used every device available (healthy and not so healthy) to cope to appear "normal" and capable to get through social situations, relationships, careers. But the wheels always fall off in each endeavor because I didn't have a clue of what was happening to me. So, I tried to positively think myself better, along with years of much trial and error in everything holistic (as the medical community has no answers or help) and blamed my supposed personality or thinking defects. There is so much oppression around these chronic toxicity illnesses (like Fibro, MCS, Lyme, CFS)  that is trying to shame us into silence. No more. Time to bring awareness. Time to be courageously truthful.

Monday, May 4, 2015

Guilt Kills - Self-love Heals

One of the most daunting challenges that those with ‘invisible’ chronic disease face, is that of emotional well-being.  It might be assumed that this is due to the stress of living with constant pain and fatigue, or even because of the lack of support and understanding; while these issues certainly factor in and do need to be addressed during treatment, there is one emotional stressor that is often overlooked.  For many who live with diseases like Fibromyalgia, there is a nasty emotion that gnaws away at the spirit and destroys an individual’s hope for a brighter pain-free tomorrow.  In time the harboring of this emotion can cause deep and unrelenting depression.    The truth is guilt kills…