Saturday, September 4, 2010

The Day I Forgot How To Spell My Father's Name

When I was at my worst, sick and miserable, in pain and anguish, floating around in some strange fog or another, never able to remember what I was doing or where I was going from 1 minute to the next, I got into an argument over how to spell my father's name with my husband. He was laughing as I was getting madder and madder, insisting it had 2 L's at the end while he thought it had just 1. I finally gave in and called up Pops who informed me in a bit of a bewildered tone that it did only have 1 L at the end. I hung up, ashamed, speechless, hanging my head, and my husband could see how upset I was. WHO IN THE WORLD FORGETS HOW TO SPELL THEIR FATHER'S NAME??? I mean maybe if he was sperm-donor daddy that was never around, but the man that raised me? That was a dark low in my CFS/Fibromyalgia journey and I am glad to say with the occasional exception of forgetting why I walked into a room (okay maybe more than occasional) or losing my train of thought (usually off on a tangent anyway) I am pretty clear-headed.

There are so many basic things this disease robs you of. So many fundamentals of life that are taken for granted until you cannot do them. Chop an onion? Sleep? Work? Do the dishes? Drive yourself to a doctor appointment? Stand up without feeling like you are crushing yourself? And then the world at large doubts you, tells you it's all in your head, treats you like a junkie or mental case or a lazy free-loader. ARE YOU KIDDING ME??? I have had it! I am fightin' mad! My amazing and wonderful Fibromyalgia-family network have opened my eyes wide...VERY WIDE. We are all suffering in the same way, all singing the same song in a different tune. Minor details vary; geography, additional ailments (but we always seem to have more than a few), race, religion, marital status, socio-economic level. Oh Fibromyalgia does not discriminate, she is an equal opportunity invader! My journey was living hell and I have nearly 400 friends on Facebook that I have collected in the last 3 weeks that confirm their story is darn near exactly the same. I also know there are thousands more out there, so many afraid to speak out, afraid of judgment from the world at large. I was one of them before the strokes shocked me into not caring anymore about what anyone thought about me, my drama, struggle or journey. I opened myself up and the response has been overwhelming!

We need help! We need a charge, a General to lead us to war, the war of informing the world we ARE REAL PEOPLE THAT ARE REALLY SUFFERING. There are enough of us out here helplessly watching our lives crumble apart, completely vulnerable and unable to do anything about it we are so sick! This is pure insanity and something has got to change. We have to band together and do something about this...enough already! So hang tough with me fellow-fibrates. Spread the word about this blog and invite your fellow-sufferers to "friend" me and join in the Crusade. We are not going to sit back and wait for justification from a reluctant medical community. We are not going to let big-pharma be our only voice as they heavily advertise the miracle of their "drugs" that just mask symptoms and create more problems long term, and that half of us cannot afford anyway because they are too darn expensive! We are not going to keep losing our homes and families and security and health care and quality of life to this nameless, faceless stranger that won't kill you but leaves you rotting like a living corpse, wishing you could just die and get it over with. Each and every one of you I have come into contact with have sparked tiny little embers in me, and now the brush is smouldering, the twigs are starting to burn and pretty soon the bonfire will be raging! When this Lioness gets pissed heads roll...AND I AM REALLY PISSED OFF!

Thanks for joining,

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