Friday, October 20, 2017


I went nine solid months without having a single good, or non-flare, day. Today I'm consistently averaging two good days a week. It's a noticeable improvement, no doubt, but not enough. Ever greedy, I want more. Despite years of trying to negotiate myself into accepting my diminished output, it hasn't worked. I've tried to adapt to my limitations and failed miserably. I wish I could. Lord knows my life would be a lot easier if I did. But unless I am fighting this illness, and winning, I'm nothing but a surly wretch.

Countless blogs have been devoted to my frustration over how much everyone expects from me and how poorly I measure up. But I'm beginning to think they're only following my lead. I'll be the first to admit I'm deficient in myriad ways. It pisses people off, but the person it really pisses off is me. I want so much for my life yet some days am too fatigued to shower. It's hard to combine blind ambition with incapacitating illness. Lots of people do it, I'm well aware. I strive to be one of them. It is both the blessing and curse of my life.

Right now I'm in a holding pattern. My sleep is still prone to extended fits of insomnia. I spend more days feeling like I'm coming down with the flu than I don't. I can barely find the motivation to practice yoga once a week, and then get really sick after I do. Eventually that backlash will recede, along with the pain and stiffness in my muscles, but man it's a son of a bitch getting there.

I want to wake up in the morning with a spring in my step. I want to enthusiastically approach the day, execute my goals and objectives, and fall into bed at night exhausted from a day of productivity. But yesterday I played solitaire on my cell phone and started the new Dynasty reboot, too sick to even put on makeup. Clearly I'm miles away from where I want to be. So I rest and try to show myself a little bit of kindness. Around and around I circle, searching for a place to land. Hoping and praying to one day exit this holding pattern of futility.

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Thursday, October 12, 2017

The Battle

I spend 90 percent of my energy battling two things: either my illness or the reaction people have to my illness. Sometimes I battle both at the same time which is an equally joyful and self-esteem building experience. Not. It's complicated because the illness is what it is: a mystery to modern medicine that's my responsibility to overcome. I do everything in my power to keep the upper hand in that relationship; eat more vegetation than a vegetarian, pop nutritional supplements like they're about to be outlawed, lift weights and yoga stretch to target my deepest sources of pain, adulate and luxuriate in the precious state of sleep. Sometimes I win a round, and other times I lose the fight. Either way I still have to get up each day and live the closest thing I can to a life. 

The reaction to this illness I battle, however, vacillates. Fibromyalgia is an extremely hard condition for people to understand, me included. I frequently find myself in one of two states. Someone is usually pissed off at me for not being what they need, doing what they want, or giving what they demand. Or they feel sorry for me and spend excessive amounts of time trying to get me to talk about how I feel. Both are awful, especially given that I'm fending off so much negative energy while already sick. I don't want anyone's pity and I don't want to be a disappointment. All I want, literally, is to live the closest thing I can to a life--without having to apologize or explain until I'm blue in the face.

Tackling life with a tenth of the energy that my healthy counterparts have isn't enough. This relapse hit me hard. While my immune system is stabilizing and symptoms are beginning to calm down, I'm entrenched in so much chaos I can't get myself up off the ground. If I'm not physically pummeled, I'm emotionally overwrought. And that's just from fibro. Then factor in all the strife and stress my interpersonal relationships bring to the equation, and it's no wonder I'm flailing like a fish in the bottom of a dry desert sea.

I don't have a solution or answer on how to win this battle. I don't know how to rewrite the control dramas deeply woven into the few remaining relationships I have left. I don't know how to get rid of this illness, which would seemingly alleviate all my problems. Or would it? Because I'm beginning to think this isn't about my sickness at all. If it weren't fibro dictating the parameters of my life, it would be my career or children or any of the zillion other things people fill up their time with. Yea, it's disappointing I got sick. But chances are, given the way things have gone, even the healthy me would have been a let down.

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Thursday, October 5, 2017

Which Way to Something Better

On Monday the culmination of everything this broken world is hurling around shook me to my core. A defining artist of my generation passed away on the same day my fellow countrymen were massacred in an unconscionable act of violence. Again. Giving in to my grief, I walked around all day listening to Tom Petty while sobbing. Incredible memories from my youth surged through my mind. Sorrow for those robbed of the right to make future memories consumed me. My emotions were raw, ugly, and bewildered. I was up well into the night accompanied by two faithful friends: a bottle of old-vine zinfandel and my rock mix on Spotify. As my ears journeyed through sweet recollections of coming up in the '80s and '90s, my heart refused to accept the hate ruling the '00s and '10s. I met dawn's light no closer to digesting 2017's reality and spent Tuesday utterly shook.

It took losing Tom Petty to realize what he and his Heartbreakers meant to me. I've been so wrapped up in the combined misery of adulthood and sickness for so long, I forgot about all the years I was fortunate enough to have my health. There were twenty-eight of them, and Tom Petty was in the background while I was creating memories during every single one. They recorded "American Girl" the year I was born. Wildflowers was released the year I graduated from high school. There's nary a stage of life I don't attach to a Tom Petty song.

I've listened to his catalog on a continual loop for the past four days. The tears have not stopped. Staggering amounts of grief are pouring out of me, for many different reasons. It's easy to remember why this artist left such an indelible mark on my life: Tom Petty taught me about the world. For three decades I listened to his voice sing tales of love and pain. Truth and consequence. Injustice and perseverance. His intricate storytelling told through the vehicle of easy lyrics and mellow rock 'n' roll spoke so much more than volumes. They explained the human condition. They spoke verity and in doing so, shaped mine.

I stopped telling my truth a long time ago because I got scared. People can be mean. But I'm not special. Everyone all over the internet, and seemingly the world, are collectively awful to each other. So screw it. I want my voice back. I need to proclaim my truth; I'm desperate to figure out how to get my life back. Lots of people lost their voices on Monday. I'm no longer giving up mine.

Think of me what you will 
I've got a little space to fill
"You Don't Know How it Feels"
-Tom Petty

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Wednesday, August 2, 2017

No Regret

Sixteen years ago I thought it would be grand to be honeymooning on my twenty-fifth birthday. So I scheduled my wedding to take place five days before I hit that quarter-of-a-century mark. I had visions of taking a fabulous vacation over that anniversary/birthday week for the rest of my life. And for the first few years, everything went as planned. While money may not have allowed us "traipse through the majestic hills of Santorini" type vacations, my husband and I made it a priority to get away for that week of celebration. Wow was life grand.

It stopped on my twenty-ninth birthday. I'd become ill two months prior and had to take a voluntary demotion at work. The last thing on my mind was going on vacation. I was hanging on to life as I knew it with broken fingernails dangling off a cliff. We still celebrated, don't let me portray myself as deprived. But life was different. Over the course of the next year every doctor I visited declared there was nothing wrong with me. Eventually my pain and fatigue got so bad I couldn't get out of bed and had to go on state disability. This meant my doctor was forced to give me a diagnosis: chronic fatigue syndrome and fibromyalgia.

On my thirty-fourth birthday I was in the hospital after having just survived two life-threatening strokes. It was a surreal day, one where the very essence of being alive was all I needed to fill me up with more hope and joy than I'd felt in years. I was also being treated with high-dose steroids, which filled me up with hope and joy before turning me into a raging lunatic.

Life didn't turn out at all like I expected. I didn't anticipate getting sick with chronic illness, losing my career, and almost dying a bunch of times. Most unexpected, however, is that I'm still standing here trying to forge ahead. It took me eight years to get my fibro truly managed, and I lost it in a gigantic relapse two years ago. Last year I was so panicked about turning forty, the regret over my lost life was oozing out of me like a bleeding wound. My birthday was more about damage control than a celebration.

Yesterday was my forty-first birthday. It's been a trying year, but I am coming out of my relapse slowly but surely. Between my sixteenth wedding anniversary last Thursday and yesterday's celebration, I'm a cooked little cookie. Nobody's more surprised than me to discover I'm not mad about how depleted I feel. I'm not even upset about the gigantic flare starting to settle in. I'm not regretting my lost thirties, or getting mad that I'm being punished for trying to enjoy life, or giving one more moment of my life away to remorse. I can't spend time in my past; it's too awful back there. No, I'm far more interested in what the future is going to bring me than what the past has already brought.

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Wednesday, June 14, 2017

The Failure of Sick

It has becoming increasingly clear I have outlived my usefulness. Who I am has become intolerable. I'm too emotional, in too much pain, too angry, and contribute nothing positive to the world. I drain the resources of the people who are unfortunate enough to still be stuck with me. Perhaps if I behaved better, or could get a grip on how upset I am over how bad I hurt, I could reclaim some of my purpose. But I can't.

I beat my head against the wall daily trying to find 2015 me. Where the hell did she go? Instead of a vibrant and vital woman who believes she can conquer any obstacle, I'm a shell-shocked, quivering mess of Jell-O who can barely say my own name. But I do not blame the people in my life who have grown so contemptible toward me; I sympathize with them. I am a mess. I am an undesirable person to be around. I have ruined people's lives because I was (insert verb) enough to get sick.

I dream of what it would be like to have an illness somebody believed in. I wonder what it would be like to not have to play court jester every time a flare came up, least anyone be bogged down by how miserable my reality actually is. Some people don't have to be cheerful and upbeat all the time, especially when they feel awful. I can only imagine that must be like the sweet song of freedom, to be able to tend to oneself without failing the world in return.

I actually learned years ago how to ignore my symptoms and pretend what I'm experiencing isn't real. I got so good at it, I walked around for four days after I had a stroke before I had another one and went to the hospital. But something changed. Somewhere along the way I became egomaniacal enough to believe I mattered, my truth mattered, and some doctor out there might be able to do something about it.

Now I know the truth--I am not allowed to be sick. I am not allowed to feel my symptoms and react to them. I am not allowed to try and make myself comfortable to ride out what should be a physical experience, but because of over a decade of psychological damage has become an emotional one. I'm not allowed to show anyone how I truly feel. My existence is bothersome to people, and my problems are my fault anyway for not getting better by now, and I've really screwed up everyone else's plans for their lives...

Please believe I never set out to become this pathetic. I never asked for any of this. I tried, so hard, to mind-over-matter fibromyaliga and rise up above my symptoms in order to achieve life. But that resolve is gone. My hope is dead. My faith is shattered. And I have absolutely no clue how on earth I'm supposed to keep doing this.

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Saturday, May 6, 2017

The Greatest Pretender

About this time last year something profound happened to me. While the event itself wasn't earth-shattering, my reaction to it pretty much defined how I related to the world at large for the next nine months. One afternoon I was standing in the kitchen when my husband, who after over a decade of our social life being ruled by my sickness, informed me he was sick and tired of flaking out at the last minute. He demanded, then and there, that I either commit to or cancel lunch plans with friends two weeks out. I stood there with my mouth agape clueless as to what to say. We both knew I was rapidly relapsing into an illness that didn't give me the consideration of two day's notice, let alone two weeks. But we also knew life wasn't only about me...

It didn't matter that his frustration was justified, or that I was spending half of the week too sick to function, or that two mature adults should've been able to resolve this rather superficial matter with a healthy dose of communication. All I felt was defensive, misunderstood, and that I'd failed him yet again. So I climbed onto my own private island of isolation and decided to resolve this problem all by myself. By punishing myself. I already felt so guilty over losing such a grasp on my health that I had to quit my job, so this seemed like the perfect opportunity to exact my revenge. Against me. In that very moment, without a word, I decided to say yes to every invitation that crossed our paths. To further my self-retribution, I followed it up with the mandate that if I wasn't in the hospital, I couldn't cancel. Period.

Some days I was too weak and dizzy to stand, other days I hurt too bad to wear clothes. I had a few lingering, miserable colds that make good ol' fibro a thousand times harder to endure. Many days I woke up crying, feeling like I was fighting through quicksand just to get out of bed. Frequently I didn't sleep much at all and spent the next day in a miserable state of delirium. Sometimes I couldn't form sentences, my mind-mouth connection was so impaired. My body ached, throbbed, and pummeled me with relentless agony. Yet still I refused to cancel. Towards the end of the year I was so depressed I'd spend all day crying, then slap on makeup right before my husband got home in an attempt to conceal my suffering. Eventually so much smiling and faking my way through things and telling everyone I was fine, when I so seriously wasn't, eroded my mental stability. Guilt and self-loathing may have been the motivators that got me into this mess, but it was my angry bitterness that kept me there.

So much pretending my kind of sick didn't matter made me outrageously resentful. I started to view life as a punishment, and the people in it as my captors. By denying myself the very essence of my reality, I eventually began to feel tortured. Trying to fake my way through my middle-class lifestyle, full of unburdened people concerned with carefree activities, was making me overwhelmingly bitchy and remarkably hostile. And refusing to take care of myself had only made me sicker. Clearly, my solo journey through an ugly game of pretend had sucked my body, mind, and soul bone dry.

It wasn't so much that my self-esteem came back one day. In fact, quite the opposite was true. After many months of self-suppression and pretending, I was so mentally beaten down I had no clue how to go on. My misery threshold finally exploded and I confessed to my husband what a passive-aggressive tantrum I'd enmeshed myself in based off his long-ago comment. With the communication clearing between us, I began to feel supported and loved again. It was then, and only then, that I realized I was the one who dropped the ball of loving and supporting myself. No one else. Me. Or none of the aforementioned would have been allowed to happen.

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