I Must Stop Being So Mad At Me

What a weekend! I must be a glutton for punishment because I am glad it is Monday and I can get back to work, back to my routine, back to some discipline! I have control of my activities and no one to answer to (except myself) and I can resume exercising and crusading and cooking and cleaning and bathing puppies, all those oh-so-exciting things my life consists of. Yesterday I felt like my ribs were poking my back in all sorts of awful ways and I just hurt. That all-over body hurt known to an elite group as Fibromyalgia. I pretty much did the exact opposite of what is necessary to manage my Fibro over the Thanksgiving weekend. I ate lots of fattening and processed and sugary foods and did not exercise and relied on medication to keep the pain at bay. Problem is I don't really take anything strong enough to do the job good old fashioned lifestyle usually takes care of. If there was any doubt in my mind that my Fibromyalgia is managed by the 5 pointed star of health (diet, sleep, exercise, stress management & hormonal balance) as much as it is by Neurontin, it has been eradicated from my mind! I have a massive responsibility to keep my symptoms in check with my choices. Oh it all goes back to discipline...

It has been 3 months since I had my strokes, was put on high-dose Prednisone and sent home to figure out how to live life. It has been 3 months since I surrendered to my God and allowed myself to open up, stop being so private, shy, protective of myself. I quit my job, went public with my blog and started spreading the word around various Fibromyalgia sites on Facebook to see if anyone was interested in reading it. It has been 3 months since I stopped trying to control my life and just let whatever goodness there was flow through me. Oh it has been a whirlwind! Prednisone in and of itself made me think I was going to come unhinged, but it gave me intense energy and drive and as I sit here today slowly weaning off it, Fibro pain and laziness returning, I am marveling at the storm that has been whipped up! Some big stuff has happened. The Fibromyalgia Fun House, The Fibromyalgia Crusade, The Chronicles Of Fibromyalgia, The Purple Pain Code, all pivotal components to a patient-united awareness campaign we have banded together to form. We stopped feeling like little dinghies floating out in the abyss of the large and vast ocean of aloneness. We recognized there were a whole lot of people just like us dealing with the exact same problems, symptoms, struggles, challenges, criticisms and frustrations. We are realizing if we do this together we will get a lot further than any solo effort will ever yield.

I see a change taking over. I see far fewer victims out there. I see people putting their foot down with the way they are treated by doctors, friends and family. I see proactive and strong spirits emerging and a support network of true and authentic compassion and understanding. I see an exchange of knowledge and information and ideas and I am so pleased! My cup runneth over... But I also see how hard we still are on ourselves, mad we have this ill-understood illness to contend with. Confused as to how to make life work while dealing with constant and pervasive traveling pain and symptoms that come and go as they please, no warning, no pattern. We are still plenty angry and taking it out on our emotions, mental balance and expectations of self. We are feeling betrayed by our bodies, imprisoned by our pain and abandoned by our idea of what life was supposed to be all about. I know my life has sure not turned out anywhere near the way I thought it would! I also know that until I was able to forgive myself for getting sick my symptoms kept me down. I have ventured a strange journey to this place I call "managed" and a crucial component was to let Leah off the hook for screwing up not only my life but everyone's around me as well. To accept my reality, focus my anger on the true enemy, FIBROMYALGIA, and just be darn nice to myself, because there were phases where I was the only one that was! The guilt still crushes me at times. The frustration overwhelms me. But by and large we are knitting together a network that allows us to be sick and defeated while at the same time pro-active and hopeful, with little sprinkles of laughter on top! Keep comin', my Fibro-warriors, and join The Crusade, for I promise you the difference we are making has started already...

Thanks for joining,
Leah