Wednesday, March 26, 2014

The Devil & The Angel

The internal battle waging war inside me right now is insane! I literally have a devil on one shoulder and an angel on the other. The angel tells me to ignore the immediacy of my problems. She tells me to go ahead with my plan of action, don't skip exercising because I'm flaring, go ahead and make the bed and do the dishes, because it's my job and has to get done anyway. The devil, on the other hand, is telling me to go buy a 6-pack of Dos Equis and sit by the pool drowning my sorrows, or eat a lot of greasy food, or basically indulge in anything sufficient enough to distract myself from the relatively minor molehill I've turned into a mountain.

Sigh. My sleep-exercise conundrum has caught up with me. While I'm getting to bed at a normal time these days, which in and of itself is a miracle, I'm not sleeping enough. This rejuvenates the viral symptoms I spent the last year caught in the grip of. My head hurts, throat and sinuses are scratchy, inside of my mouth shredded, face riddled with boils, body aching and is extra Fibro-sore, to boot. But that's nothing compared to what these flares do to my mood! I get so angry and infuriated sometimes I wonder if me, myself and I are indeed the devil sitting on my shoulder and whispering self-destructive ideas into my ear.     

It's such a tightrope, trying to rebuild my life. Discipline is my best friend these days, but too much strict adherence to the theoretical life I'm working hard to reclaim can indeed make me sicker. So when do I ignore the flare, and when do I push through? If I coddled myself every time I felt bad I would've spent the last nine years in bed. Literally. In the beginning pushing myself always resulted in a backlash of epic proportions, but these days it's how I'm making progress. Luckily tapping all this out on the keyboard has served to calm me down and clear my head. I went ahead and made my coffee, deciding to skip the beer for now, and instead focus on something I like to do, which means I'll spend the day writing my book. No exercise, the bed's not made and the dishes are still staring at me, but it's a compromise I think I can live with.

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Monday, March 24, 2014

Trauma & Trepidation

Last week when I found myself sitting on my kitchen floor organizing my cleaning products to avoid doing it, I realized I have a pretty serious problem. Given my poor housekeeping skills the last thing I care about is how Comet and Draino hang-out under my sink. But the thought of doing what I was blatantly avoiding filled me with dread. As I shoved the box of cleaners under the sink I knew the moment was upon me. My heart started pounding and sweat broke out on my forehead. When I walked over to my computer I felt dizzy and nauseous. Intense doom invaded every cell of my body. The certainty of total global annihilation made me want to fling myself off my balcony to avoid such an ugly demise.

I wish I was exaggerating, but I'm not. After enduring the financial devastation of five years of Fibro, followed by four years of not working, this is what happens when I try to pay the bills. With a sinking heart I realized I was dealing with a physiological response to an emotional reaction, caused by trauma. So now not only does going to the doctor invade my soul with so much fear and trepidation I act like a crazy lady, writing the rent check does, too. Is there no end to my problems? I mean come on now, it's been a struggle, but I never went homeless or starved. Sure, we lived outside our means for many years, and it almost took us down, but I do believe the worst is behind me. At least I thought my conscious mind did. Clearly I was mistaken.

The amount of real life I've avoided facing as a coping mechanism is astounding. Only now as I'm slowly able to add more responsibility back onto my plate do I realize how far out of control life got. I remember the early years of this illness, how I sat there and watched the dishes, laundry and life pile up around me, too sick to stand up and do anything about it. My type-A wanted to kill me! Learning how to ignore her ranting demands was a huge challenge. Somehow we co-existed, and I now find myself in a position to reclaim some of my lost ground. So today I faced the same heart-pounding, gut-wrenching reaction, and even managed to spend an hour laying out at the pool to avoid my dreaded responsibility. But when I came inside I poured a big glass of water, threw all the paperwork into a pile in the middle of the living room and took a bite out of my fear. And I survived. I'll count that as progress.

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Thursday, March 20, 2014

Please Go To Sleep

Sleep is both my nemesis and best friend. I had absolutely no idea something as simple as falling asleep at night would become the bane of my existence before I got sick. We've settled into a rather symbiotic existence at this point, but the amount of work it took me to get here is astounding. A rather enlightening experience on Tuesday night reminded me how awful not sleeping is, and what a mess my life quickly becomes without it.

I shut the computer off and went to bed at 2 AM, like a good girl, even though my mind was racing and I was anything but tired. After an hour of laying there amping myself up I got up, figuring trying to force my brain to shut down was having the opposite affect. Another hour and I wasn't any better off, but at this point it's 4 AM and my visions of a productive Wednesday are rapidly disintegrating before my eyes. So I got back in bed and tried to force myself to sleep. After another hour passes I'm so exhausted-hyper that anxiety is kicking in. Trying to sleep with anxious vibrations coursing through my limbs is a joke, but I didn't really know what to do. I hadn't had insomnia like that in quite some time and was, of course, terrified it was sneaking back into my life. I know full well if I can't sleep I can't have anything resembling a quality existence.

At 5 AM a bright idea popped into that racing brain of mine, and I got up to make sure I had indeed taken my arsenal of sleep aids the night before. Low and behold, I hadn't! While taking enough pills to knock out an elephant at five in the morning isn't my idea of a good time, I was crazy relieved there was an actual explanation for my viscous attack of sleeplessness. I took my meds and within a half hour was out like a toddler after a day at the beach.

While all of this insanity had me jumping in and out of bed I remembered the acute misery sleep disruption brought to my life in the beginning. See back then I had to work the next day, so there was no taking sleep meds at 5 AM and switching off the alarm. There was only me, exhausted, trudging through a day at work and praying for my shift to end. More often than not, one night of insomnia, followed by a hard days work, would kick a cycle into gear that wouldn't end for days. After four or five nights of not sleeping I literally became too exhausted to knock out. My freakin' brain wouldn't shut off, and it was only a matter time before I collapsed from utter debilitation because of course, not sleeping made the pain so much worse. Not sleeping made everything worse! This little reminder on Tuesday night was yet one more experience to show me how far I've come, and how passionately I intend to hang on to my progress. 

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Tuesday, March 18, 2014

Nothing Safe Left To Say

When I started this blog nobody read it. I wrote for four or five months without giving the link to a single soul. Just publishing it alone was an outrageously ambitious endeavor for a girl as private as I. The thought of anybody actually reading my inner agony sitting here on the world wide web was utterly mortifying. Then I almost died, and the treatment to cure my disease consisted of legalized meth, AKA high-dose Prednisone. So high as a crack-head I set out to let anyone who was interested know just how horrible Fibromyalgia was, a disease I suffered from for the previous five years and was struggling to rebuild my life around. Woo hoo, was I high on the fellowship of social media! The feedback was incredible, and planted an ember of passion in my soul to do something about the horrible reality far too many Fibromyalgia patients endure. By the time I was coming off the dragon-drug six months later people were reading. Clearly I started something, but exactly what I still don't understand. It didn't really matter, however, seeing as the messiest phase of my last ten years was just about to begin.

I had no idea how much damage my brain sustained. Once again looking like a healthy 34 year-old fooled my doctors into believing I survived two fatal strokes with hardly a scratch. Nor did I realize I was on so many medications I literally couldn't see straight. Day after day I got a little better and a little worse. What a devil's dance we tangoed into the starry night, my elusive friends health, sanity and me! Four years later I know I won, but at no point in my journey was that a guarantee. All the while I blogged, or didn't. I engaged in intense levels of personal entanglement with this disease and its online community. My keyboard warrior roared to life and nobody could shut her up! Until a member of my own family began cyber-stalking me, and twisting my words to discredit me. People were still reading, but I no longer knew who they were. All I knew was a fair amount of Fibromyalgia patients hated me for not representing their experience accurately. Eventually all the harassment became so burdensome the flesh and blood of my words began conforming to avoid controversy. The hatred, outrage and anger in my heart swelled, but I didn't have anywhere to put it. So I turned it on myself.   

Despite my stale and tired words people are still reading. Is saying thank you a big enough gesture, knowing I wouldn't have kept going if that hit counter stopped spinning? My comfort with revealing myself certainly reached its peak during my steroid days. Since then the panic in my heart surges a little more each time I think of how much of myself I left sloppily laying around this place called cyberspace. Once again another crucible envelops me. I simply cannot move forward in my life and continue to spew safety. The facade is pointless. Fibromyalgia is raw, awful, fucked up and merciless. While caught in its clutches I have done awful things and behaved in absurd ways. Recognizing that reality doesn't mean there isn't hope, a better tomorrow or a way to enjoy living again. If I'm going to continue to write this blog I must embrace my heartache, let it go, and speak the words my heart recognizes as truth. Those words are far from safe.

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Monday, March 17, 2014

Searching My Soul

I sit here mystified and bewildered, unsure how to proceed. Thoughts of obligations, responsibilities, ambitions and dreams whirl around in my head in a constant 24-hour cycle. There is no break, no moment of peace, regardless of how badly I need certainty. Trying to make sense of my journey only makes me crazy and panicked. Attempts to manipulate my future leave me feeling raw and exposed. For so long my body hurt so bad it was all I could feel, think, see and do. That pain consumed me, invaded my heart and distorted my mind. I didn't think it would ever leave, to the point that I forgot who I was because that pain was all I could be. That pain became me. Something kept me going, but I don't know what. If I could bottle it and sell it I would gladly laugh my way to the bank to cash my millions. How does a person keep going with so much torment and adversity?

What happened six months ago that changed everything? I hit the floor of a glass bottom boat hard, and stared at the churning abyss waiting to suck me deeper, to claim my life. I knew if I fell any further there was no getting up again. Suddenly, the girl who thought she lost so much there wasn't anything left to lose, realized life can still get worse. It was the moment all my hardship prepared me for, I suppose. Staring my demise in the face forced me to take my eyes off the end and believe things can be different, but only if I really believe. The kernel of intention bloomed in the face of no other option, and I set to work.

Over the last six months everything changed. The biggest surprise of all is discovering I'm still here to rediscover. I thought life beat the passion out of me, like a snarling rabid fight dog who no longer knows how to play. Convinced I would spend the rest of my days as a vague shadow of the woman I was meant to be, I instead find myself actually living again. Smiling, crying, laughing and playing. Believing. And yes, intently searching. 

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Monday, March 3, 2014

Survival Is Mine

Today I rejoice, because one of the hardest trials of my life is behind me, and I survived. It was hit or miss for a while. The motivated and unblemished 2014 I was certain awaited the other side of January 1st didn't quite offer me the clean slate I hoped for. Instead, while I was desperately trying to move my life forward, exhaustive circumstances kept slapping me around. How many times can a person get knocked down before realizing standing up is sometimes just too hard? I guess I don't know how to not fight for my own survival, though. I've been doing it too long to stop now, for crying out loud! So I kept going...

At some point during the last few weeks my epic amount of hard work and determination to achieve a better life started paying off in spades. It wasn't something I even realized was happening until there was enough progress to look back and see it. In that instant of awareness I realized the greatest tool I possess is my brain. After all, it was my brain urging me to dodge negativity like a speeding bullet, my brain forcing me to exercise when I woke up feeling like half a human, and again my brain making me get my ass off the couch and stick vegetables down my juicer so I could get all that nutrition down my throat and boost my horribly depressed immune system. Thankfully my brain recently had a breakthrough I've been desperate for, allowing me to now go to bed at 2am, fall asleep like a normal human and wake up at 10am ready to have a day. Is this what it feels like to have some control over ones own circumstances? It had been so long I forgot.

I realized if I hadn't changed my attitude I would still be on the endless victim Ferris wheel wondering why my life was so hard. Everything I hold near and dear was on the brink of collapse. My family was about to topple head first into the raging sea of chaos. Had I continued to believe what I possessed at that moment was as good as it gets and all I was entitled to, we would have. Coming out of the abyss scared me silly, because I was able to look back on my life and see just how far into survival mode I sunk. There is so much work to repair my life into something worth living again. Survival mode is no way to survive, yet the horrible reality far too many chronic illness patients simmer in year after year with no end in sight. Hocus pocus, mysticism or magic potions didn't get me here. Looking under every rock for the elusive concept of health, and believing it could be mine, well that was the first step to living again.

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