Lean On You

For some time now I have been silent. Haven't had much of anything to say in this blog. Nothing inspired, anyway. I feel like I have said it all. Again and again and again. The same thing over and over until I am sick of hearing myself whine. One day up, the next day barely getting out of bed. Hoping for another up day, not knowing how long I will wait. Maybe if I try this or do that or wear magnets on all twenty fingers and toes I can participate with those I know and love in this brutal, viscous, hungry game called life. I got sucked into a pathetic reality show, Secrets Of A Trophy Wife, and stared mesmerized at Kim Kardashian look alikes pumped full of silicone and collagen and botox driving around in Bentleys. It was better than a bad car accident, I just couldn't look away. But for three days after I couldn't do anything but compare myself to them, and the $115 million reasons that separate them from me. I felt like a loser, pathetic, sorry. "But you got sick!" my angel said. "Doesn't matter," the devil spat from my other shoulder. "It's no excuse."

And then I read my friend's blog. Mid way through the sob overtook me. Fat tears rolled down my cheeks as the cleansing and healing experience of knowing someone else lives the same whack ass reality I do quenched my emotional pain. And I got it, why I write this blog. I remembered why it's important to the scope of my life. I remembered that even at my healthiest I shunned Orange County trophy wives with a vengeance. I never wanted to fit in, be one of the crowd, like everyone else. I never wanted to do what I was supposed to do. I just wanted to be me. So why on earth do I care about that now? With a shudder I realized it's because I can't. Even if I wanted to, I can't. And that sucks. Having options taken away from you, even if they are options you never even wanted in the first place.

I have no more grace or dignity with these viruses and conditions sucking the life out of my bones. I have nothing to give and I’m losing the drive to stick it out. I’m angry. I feel the losses every day. Fibromyalgia mocks me. I don’t recognize myself in my behaviors anymore. I’m sullen and sarcastic, morose and private, believing again that I do not deserve to be loved. I've said too many unkind things, exhibited too many harsh tantrums. I've become a shadow. I covet, I yearn, I grieve. I even hate sometimes. How can I be lovable? Girl Interrupted ~ Sleeping Beauty Awake

Thank you my sister for writing my heart. For reminding me why ripping mine open all over the world wide web wasn't such a bad idea after all. And renewing in me the purpose of it all. Survival.

Thanks for joining,

Leah

Fight And Flight

I've spent a lot of time reflecting on my Fibromyalgia journey lately. Obtaining a managed level of symptoms is no easy task, but I was actually doing well enough for long enough to gain some of that precious perspective called hindsight. The separation between super sick me and moderately managed me was large enough to gaze with startling clarity through the thickly webbed stills of history and see all it took to get me here. Each choice I made on a journey I didn't believe had choices when I was living it. The tremendous dose of a horrible reality I nursed on daily as I navigated my way through endless attempts to overcome this beast of burden. And the soaring joy I couldn't contain as my pain became managed and life became livable again. 

What jumps out the loudest is how many layers there are. Because for each triumph there was a thorn ripping my side apart. For every excruciating flare a day when the torture finally ended. Every heartache a win and achievement a price. But the biggest question I keep asking myself, reverberating around my cranial cavity day after day, is how do you accept and fight against something at the same time? We were designed with a flight or fight reflex. Fight or flight, not and, right? But had I abandoned either objective I don't believe I would've been successful in my venture. One simply cannot accept the hell of unmanaged Fibromyalgia as life forever, not if we want to get any better. Conversely one cannot even begin to address the underlying environmental and lifestyle breakdown exacerbating this illness if we don't stop fighting and accept it, and then learn how to live with it. 

Good vs. evil, yin vs. yang, success vs. failure. Time and culture are ripe with philosophies striving to balance oppositional forces. We chronic illness patients are not unique to this struggle. In fact it seems to be a theme richly intertwined with the human plight. I finally realized the way to not let the totality of my objective obliterate me was to utilize time. There is a time to lie down, and a time to rise up. A time to take a deep breath, and a time to let out a loud yell. Often these aren't choices but boil down to the necessity of survival. Breaking time into tiny capsules, even though I was often only able to deal with one at a time, gave me a holding place for the rest of my burden. I couldn't carry everything at once, and when I finally stopped expecting myself to, realized I'd gotten much further than I ever thought I could. 

There is a time for everything, and a season for every activity under the heavens. 

A time to be born and a time to die... 

a time to weep and a time to laugh, 

a time to mourn and a time to dance, 

a time to search and a time to give up... 

a time to tear and a time to mend... 

a time to love and a time to hate, 

a time for war and a time for peace.

~Ecclesiastes 3:1,2,4,6,7,8

Thanks for joining,

Leah  

You Know My Pain

Two things happened recently that made me take pause. Or more to the point, my reaction made me take pause. First was a good friend who got the flu. She was at work and feeling very ill. With disbelief in her voice she explained how terrible she felt, and horribly irritated she was to not leave work early and head home to bed. It was New Years Eve and she'd already used all her vacation time for the year so she had to tough it out for a few more hours. I commiserated with sympathy, I really did. Boy do I know that well, pushing through a day of work with the flu. Except mine didn't go away in a few days or weeks like everyone else's does. Nearly eight years later I still have it, and a whole slew of other problems too. I know I am more than a little bitter about it. So while I cushioned her venting with appropriately placed interjections of, "That sucks!" and "I am so sorry!" my mind got downright nasty.

Because it took everything I had not to scream at the top of my lungs, "That is what I have felt like for eight years, but worse, far worse! Could you imagine eight years? Eight years? Do you think you would survive it? Do you?" Then I had to get a grip. This is a supportive and dear person in my life who doesn't challenge my illness, it's validity, any of it. She takes me at my word and loves me anyway, and had clearly done nothing wrong to deserve this outburst. As I settled down a blanket of maturity came over me. I felt satisfaction in knowing my friend doesn't know the hell of my illnesses first hand. I wouldn't wish it on anybody. But I also felt proud, because I've survived something insurmountable and damn it, I'm just strong at this point. There is no reason to "prove" my misery to anybody because I ain't seeking approval. C'est la vie, it is what it is, my life I own it. Ramming my truth down her throat wouldn't do anybody any good. So I kept my mouth shut.

My dear husband, however, wasn't quite so lucky. He hurt his knee carrying some stuff down the stairs. It got him bad and for six to eight days he bitched and moaned about it continuously and was a total grouch. After a few days I asked him if I could be honest. "Sure," he gulped, and gave me a suspicious look. "I am so sorry you got hurt. I am. But I have to tell you, your constant complaining made me realize it was really bothering you, you were really in pain. And you know what I thought?" I could all but see the look of reluctant engagement on his face. "I feel bad, I do," I said. "Get on with it," he said back. "Well it sucks you are in pain, but is a good reminder to you when I am doing nothing but kvetching and moaning this is the kind of misery I am in. And it is hard to be nice or do anything but focus on it." And I do have to say he took it quite well, he really did.

Thanks for joining,
Leah

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,

Leah

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,
Leah   

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,

Leah