Thursday, December 27, 2012

Reflection Of Progress

When I started this blog I had just been through living hell. Four pancreas attacks were behind me. CFS/ME had been pinned down as a very real virus that infected my central nervous system and severely eroded the integrated systems of my body. While not "gone" (viruses don't leave) that too was treated and managed and I had resumed a quality of life previously unattainable. Meaning I could work part time and somewhat function as a contributing member of society. Fibromyalgia was not behind me, per say, but I had jumped off the merry-go-round of intense pharmaceuticals and their life altering side effects and found a better way to manage it. Everything I'd been forced to learn through my years of illness started making sense. I experienced the awesome power of the human body's ability to heal itself through the fruits of holistic principles. No, I hadn't abandoned modern medicine, but instead utilized its slim offerings in conjunction with myriad other ways to get back to livin'.

I sat down at my computer one spring day in 2010 and, having never even read one, started a blog. Figured I knew a thing or two about how to survive this monster called Fibromyalgia and thought it would be an excellent way to practice and improve upon my writing skills. I'd set my sights on starting my graduate degree in English Literature and knew I needed the practice. So I wrote. It was like a journal. Sure it was technically published on the world wide web, but if nobody knew about it how on earth were they to find it? I certainly didn't have the guts to actually tell anyone about it. However I believed the worst was behind me and it is from that point of view I focused my perspective, as a survivor. But how does one know the worst is behind them when they haven't lived the future? Because by the time summer was nearing its end I'd gone and had two strokes, severely life threatening ones I barely survived by the hair on my chinie chin chin. And that's when life went real bad. 

The first six months on high dose steroids were easy, in retrospect. I got those guts I didn't previously possess and shouted my blog from the rooftops. I became enraptured with the cause, devastated by each personal story I heard of how horrifically detrimental Fibromyalgia can be to a life. Sweeping urgency consumed me. I had to do something about this and I had to do it now! The state of affairs was in shambles, patients were terribly mistreated, a clear and absolute voice on how we were going to change things didn't seem to exist. Feverishly I blogged and started an awareness campaign and Facebook page and became full of frenzied certainty I was going to be the one to turn this very big problem on its head. And then I got off steroids and discovered I was actually a hot mess of the worst proportions. I'd gained 40 lbs. Fibromyalgia pain consumed me like when it had previously disabled me. My cognitive abilities were screwed up. I possessed absolutely no stress response and would melt into a puddle of jello if someone so much as gave me a dirty look. I couldn't problem solve or think quick in a fast situation. I couldn't even do two things at the same time, like walking and talking, for crying out loud. Like I said, it was bad.

So bad, in fact, I will assign the last two years as the worst of my life. More than a few times I didn't think I was going to survive. But through the grace of God I did. One step at a time, one day at a time, one challenge at a time. All the while I tried hard to stay true to those holistic principles which helped me reclaim health once before. It was with great challenge I attempted to maintain my voice as a Fibromyalgia survivor when my own personal walls were caving in around me. Sometimes I could and sometimes I couldn't. But if there is one certainty in life it is that time moves forward, and slowly I found my footing again. I started jogging and dropping weight. I stopped reacting to every bit of strife with epic meltdowns. I remembered how to roll stuff off my back, not freak out about what I couldn't control and put my energy into things which yielded goodness. I didn't so much wake up one day and everything was better. No, not at all. But I did pause one day not too long ago and look back to see a lot had improved. So I kept going. I reduced some medications, started keeping up the house a bit more and began counting on myself again. I took a creative writing class and got some great feedback on the novel I am penning. Checking my messages and answering the phone were no longer fear gripping activities. I wasn't burdened with the sheer weight of my own existence anymore, I was actually living my life. Not the life I lived before all these health problems took over, but one where I discovered there still is a lot to smile about.

This blog has ridden every wave of my journey with me. High and low, ecstasy and agony, good and bad, laughter and heartache, it is all here. Raw and imperfect, as I myself so certainly am. I'm not the superwoman who started The Fibromyalgia Crusade. My lofty ambitions have fallen very short. But in redefining life so it works for me I've had to reassess my commitment and discovered nothing has changed. My heart still beats to see a world where Fibromyalgia patients are not blamed for their illness, treated like it is an optional condition they are too weak to push through. My efforts still very strongly promote this cause, but are far more conservative and reflect what this one woman show can actually do. I am honored to have shared my experiences with those who have searched for ways to cope and found me. Without this blog, without you readers, without the anchor of responsibility as not the, but a voice of this illness, I don't believe I would be standing where I am today.

Thanks for joining,

Friday, December 21, 2012

Sleep, Where Are You?

Here I lay, trying to sleep. I've counted all the sheep in the pasture, backwards from 100, an entire rosary and mentally landscaped the backyard of my dreams. It's very pretty, with fountains and rose gardens and organic vegetable patches, and lots of green grass for the pups to get their jollies on. But alas, my brain just won't shut down. I almost dozed off once, but I didn't. I even pretended my husband's snoring was ocean waves crashing into the shore. I attempted to meditate and it made my brain hurt, trying to think of nothing. I came out to the sofa, theorizing I was putting too much pressure on myself and needed a change of venue. Nope, no sleep. The longer this goes on the more hyper I get. The more frustrated and uptight and bent out of shape. Which does sorry little to help me sleep. 

No, by the time six hours had past I was worked into quite a tizzy. I saw tomorrow flash before my eyes. Headache, bitchy, exhausted, miserable. Then I started in on the victim dance, not wanting to have a headache or be bitchy, exhausted and miserable. I've got quite a bit to do tomorrow! Which is today, but doesn't feel like it, because I've been awake for so freakin' long. The victim dance conjures the bitterness dragon, because shortly after that I got all mad at my life in general. The way my under eye bags look packed for a month in Europe after a night like this. The terrible memory of how quickly these ramped up central nervous system induced nights of insomnia would take me down when I was working. And then I stopped and got a grip.

I will survive tonight. Chances are, as soon as that globe of fire we here in Arizona call the sun peaks it's early tentacles into the night sky I will be out like a light. Or if not today, I will this evening. All the important stuff that must get done most likely will, or it won't, and that too I will survive. If I stopped crying in victimized frustration it would help minimize that under eye puffiness I think makes me look so old. And if I remember I am not a victim, but a victor who faced a frustrating setback in a way that could use improvement, it would make it easier to not be so hard on me. I tell myself these things and think I'm calming down, relaxing my tense muscles and wigged out mentality. Oh me oh my, could it be? I think I just might be getting drowsy...

Thanks for joining,

Thursday, December 13, 2012

I Want Their Life

My husband and I were sitting outside the coffee shop with our puppies last weekend when a man came strolling by with his three children. He was a pleasant looking fellow I guesstimated to be about 50-something. The children looked six and under, with one in a stroller. I thought to myself how nice this picture of healthy and normal Americana looked. I imagined mom was at home resting and her dutiful husband had taken the children off her hands for the morning so she could have some much needed "me" time. Boy was I ever wrong! Mama walked out of the coffee shop a few seconds later and when she joined up with them I was quite surprised, to say the least. She was young and hot! Looked younger than me with a phenomenal body, muscles rippling under skin-tight yoga gear with a caboose that would not quit. I looked at my husband and said "Boy, I sure didn't expect that one!" He agreed and diplomatically commented she looked like she took good care of herself. When I pointed out her perfectly round derriere he reminded me she worked hard for her figure. I sipped my coffee and wondered off into dreamland for a few moments as The Cleavers piled into their Porsche Cayenne. It was easy to surmise the charmed and privileged life this perfect looking family must have. I ain't gonna lie, I coveted. It looked so normal, so picturesque, so enviable. 

Now I know I was presuming a lot, and it's silly to think they don't have plenty of their own issues. I mean how many episodes of Real Housewives does Bravo have to make to tell us nice things don't make happy people? But the irony of appearances was not lost on me. Isn't this a topic I am always bitching about, how frustrating silent illness is? That because Fibro doesn't exhibit external signs and symptoms the patients have to fight extra hard to be taken seriously? People assume a normal looking individual is healthy, and it's not unreasonable for them to do so. But there I was, I'd just gone and done the same thing I frequently get all hot and bothered about. I assumed because their life looked charmed, it was charmed. The judged had become the judger.  

I am still marching toward that bubble gum life. One of rainbows and unicorns and happily ever after. I don't want any more pain or to struggle and have issues and grief. I want them all to just go away, to have never existed! That is the girl in me. The woman in me knows that with the anguish would also go the knowledge in my head, the compassion in my heart and the drive and determination in my soul. There is something that comes from struggling in life, a depth of spirit that manifests itself deep within the soul and breeds a strength of character, a sense of self, a cause of purpose. So I must strike a balance. Strive for health and freedom from illness but also remember how far I've come. Keep my perspective so the bad days don't take me down any further than they have to, and work toward the good days to far outweigh them. So while I may look at that family and assume life is peachy keen and easy for them, there is no guarantee someone is not looking at me with my outrageously adorable puppies and devilishly handsome husband and assuming the exact same thing about my life.

Thanks for joining,

Friday, December 7, 2012

Not A "One Size Fits All" Holiday

The season of giving is upon us. But it can be hard to give when one doesn't have enough of their own. Be it time, money, health or energy, a deficit is a deficit. It's quite a controversial practice to keep doling out more than one is taking in. Defies logic, even. Yet many people will tout the benefits of giving over receiving. Feelings of serendipity bloom in me when I am able to give freely and without concern for reciprocity. But for so many years I couldn't even get myself up and to work every day without catastrophic weekend meltdowns. If money hadn't been an issue, time and health were surely standing firmly in my way. I miss the joy of giving, of not stressing over my own survival, of engaging in the give and take of life's relationships. All things I am working so hard to get back from this nasty illness.

I remember the years of CFS/ME when setting the table and opening a bottle of wine was the sum of all I could do. How to communicate that to healthy people, that I'm not just sitting here staring into space slack jawed for fun? It's because a battle was being waged between my body and mind inside me? Quite frankly I couldn't believe my reality. I know I wouldn't be able to comprehend it if I hadn't experienced it first hand. Like many things in life I don't know if a person truly can. 

What Fibromyalgia has forced me to do is step out of the madness of frantic shopping and frenzied wrapping. Of blowing credit card limits to get that oh so perfect gift for every person on my list. I haven't sent cards in years because quite frankly, I really didn't have anything positive to say. I was sick and my life was coming apart. And I couldn't afford the postage. No, for the last five years I had to sidestep the usual holiday beehive because I was in a huge deficit. What's funny is I discovered by refocusing my efforts there is still plenty to enjoy. Spending time with family and the excited snap in the December air. Whipped up egg nog and the soft glow of a twinkling tree. The little children at church acting out the Christmas story. Chanting, "You'll shoot your eye out!" along with the TV like we have every year since 1983. I've come to realize giving doesn't have to be nearly as exhaustive. There aren't as many people on my list, I don't get as many cards in the mail and there aren't as many gifts under my tree. But that was the life I got sick in. This one is much smaller, and suits me far better. 

Thanks for joining,

Tuesday, December 4, 2012

Your Child Is Schizophrenic

A neurological disorder of unknown origin, known today as Autism Spectrum Disorder, was at one time classified as Childhood Schizophrenia. This was during the early days of framing the condition in our modern medical system and all sorts of rumors abound. We now know it is not caused from a frigid mother or bad parenting. It's pretty common knowledge a person on the spectrum does indeed have feelings and is able to form relationships with other people, as unique as those relationships can often be. And undoubtedly some autistic people can't speak, while some can and not all are savant, but some are. While modern medicine hasn't unlocked the puzzle of what makes autism occur, tremendous advancements have been made in treatment options and public awareness. Lots of folks recognize the colorful ribbon with a million little puzzle pieces unique to the spectrum, even those with no direct relationship to the condition. All this progress serves to insure autism is no longer recognized as a mental illness but instead the complicated neurodevelopmental disorder it actually is.

My little brother is autistic and I watched my parents struggle through quite a fight to raise their son. Their battle was not only in managing an angry and confused little boy with overly sensitive sensory abnormalities and disconnections, but in fighting the world at large to understand and accept who their child was, what was wrong with him and where he fit into society. I am thrilled he has grown into quite a self-sufficient young man who now lives in his own apartment, holds down a part-time job and is on a relentless quest to find the love of his life. He is successfully independent today because of the heart and soul my parents poured into him, pushing and fighting for his progress every step of the way. I was at the coffee shop the other day when a family came in. Their young son was a bit wild and making a distinct moaning/yawning sound I recognized right off the bat. The barista leaned over the counter and asked the parents if their child was autistic, for he too had an autistic son, and they started a lively conversation sharing their experiences. Wow has awareness come a long way from the dirty looks and angry stares my family used to get back in the early '90's!

As a Fibromyalgia patient I can't help but draw some parallels here. I often find myself in a similar double dual. Fighting to squeeze the best life I can out of myself while railing against the ignorance, misnomers and lack of public awareness this illness is entrenched in. Searching to find my niche in society where I can be productive, successful and happy. It's a challenge, but like my parents before me I believe the fight for public awareness and acceptance of this illness is my responsibility, for it is my reality. I cannot wait around for science to figure out what causes it or medicine to discover a way to cure it. It's taking too long! Hell, they are still searching for a test to definitively prove we even have it. Autism is still waiting for these advancements as well, but out of sheer necessity the community has banded together and their voice has been heard, recognized and respected. By joining efforts we are following the trail blazed by those before us. Folks who have fought tooth and nail to bring awareness to something evading definition, an illness as confusing to the patients who have it as those who don't. We are not alone in this charge, and are getting there slowly but surely, inch by inch. Each person's effort to raise awareness, better their life or improve their circumstances, that is what is going to turn Fibromyalgia into a "They used to think it was..." illnesses too. 

Thanks for joining,