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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Monday, April 17, 2017

Waiting On the World to Care

This blog has sat silent for many moons. For eight full ones, more or less, I've been imprisoned in an exile of my own creation. Initially I was so angry about my health relapse I didn't know what to say, other than to hurl epic amounts of fury at my keyboard. I had no solutions, no answers, and nothing positive to contribute. So instead of spewing hate all over the permanent cloud of internet technology, I donned the hair shirt of self-flagellation and turned that anger inward. It's been a horrible, terrible, no good, very bad eight months.

As I got sicker and sicker, I got madder and madder. The angrier I became, the more I sequestered myself. I refused to talk about my problems or how I felt. It seemed pointless, like it didn't matter. Nobody could do anything about it or begin to comprehend my reality. There was just me, an isolated island of misery, who wanted to do anything but talk about being an isolated island of misery. But nobody understood that either. I'm sure I still looked like a woman, but inside I felt like an alien trapped in a body that was betraying me twofold. It was both an internal betrayal, given that I felt like a permanent case of the body flu defined my every experience, and an external betrayal because, of course, I appeared to be fit as a fiddle.

I didn't really hit bottom. It was more like when a plane's landing brakes fail, and it crashes intermittently into the ground for thousands of feet until the wreckage finally loses momentum and stops. Although utterly broken and totally destroyed, still I refused to talk. Eventually denying myself the human need to process my emotions left me deeply depressed. I stopped valuing myself. I stopped believing I was worth helping or loving. Physically my fatigue had improved from the debilitating stage, but I was too emotionally paralyzed to act. Logically I knew I'd been in worse places health-wise, but my twelfth year of living with chronic illness found me so mentally broken down it didn't matter. I was weak. Unfixable. Without purpose. Exempt from enjoying life. Totally to blame for my predicament. And completely clueless as to how to improve any of it. The sorrow pouring out of me was all I could feel.

It's been a few months since I started to believe in life again, save for a few gripping spells of despair that tried to convince me I wasn't worthy. As I gain my footing and begin to clean the wreckage left inside me from the hurricane of this relapse, I'm remembering some primal truths to help me move forward. First and foremost, I am on this journey alone. Nobody is going to fix me, nor are they going to give me permission to be sick. Seeking acceptance, understanding, or compassion is an emotionally painful waste of time that derails my forward progress.

But this realization is golden! For it allows me to take responsibility for me and how I choose to respond, and that's it. I am not responsible for the way people treat me, what they expect from me, or how they react when disappointed. While I am neither to blame for being sick nor a failure for not getting better, I am responsible for taking care of myself so I can make the most out of the life I've been given. When doing so offends the expectations others have of me, it does not release me from my responsibility to take care of me. For a woman who still subconsciously believes putting my survival above the happiness of others is selfish, this is very hard.

I have a huge hole to dig myself out of. It's been a year and a half since I got that first cold that lead to those two flus that ultimately derailed years of pretty remarkable progress. But if I did it once, I can do it again. It took me remembering that while I may always be an isolated, misunderstood island, whether or not I'm miserable is completely defined by me.

Thanks for joining,

Thursday, August 11, 2016

Fear of Forty

Last week I officially crested the top of that middle-age hill and am now on the other side. The stress and anxiety I felt during the last weeks of my 30's had me tied up in knots. Turning 40 was such a daunting prospect, especially considering where my life's at, that all I wanted to do was cry. And a few times I did. Like the date on my birth certificate swirled up all the anger and frustration over how little control I have over my life. Then it happened. I turned 40.

Now I'm laughing, because turning 40 is so much worse than being 40! 40 is, actually, glorious. Like the date on my birth certificate allowed me to accept everything about my life, and stop being mad at it. It helps immensely that I'm now getting a string of days between flares, and the flare that just ended yesterday didn't present itself with its usual buckets of anger. Sure I zoned out on yet one more TV series as I distracted my awakening brain with epic amounts of Scorpion Solitaire. What else is a person supposed to do when they're too fatigued to function? But I didn't get mad about the fact that three days of my life are just...gone. 

I just was. Where did this acceptance come from? Where did the anger that's consumed me for months just up and go? My husband reminded me this is how it happens, how I slowly start to stabilize and regain my footing. Funny, because I forgot. I didn't remember what it was like to feel a positive emotion, let alone not dissolve into puddles of anger anytime I felt anything. Whatever this is inside me they call fibro, it's a Beast. And it took the Beast releasing a little of its stronghold for me to remember how complex, dark, and all-consuming the Beast truly is. 

And also for me to remember what a blessed gift acceptance is. For if I accept my reality and work with it, not rail against it, I actually make progress. Eventually that progress is measurable, and I can look behind me and see some distance between me and the Beast's prison. Don't get me wrong, the Beast is still walking beside me, trying to take a swipe out of me anytime it feels like it, but I no longer live in its world. The Beast is living in mine. 

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Saturday, July 30, 2016

A Different Me

This week the flare hit so hard I didn't know what was happening to me. All I could feel was more anguish and desolation than I could bear. The why's of life started swirling around my mind again, their utter uselessness distracting me with the unfairness of it all. I seethed hatred and anger at my life, the consequences of my existence, and mostly the prison my health has left me in. That was Monday and Tuesday. Miraculously on Tuesday night I slept, which was but a pipe dream the two nights before. On Wednesday I woke up and felt, dare I say it...human? Every inch of my body didn't hurt and I didn't want to hurl myself off the nearest bridge. Victory!

That's when I realized I'm getting better. See that flare state I just described above was my continuous reality for months...and months...and months. I've known for a few weeks now I was stabilizing, that all my juicing and resting and exercising was starting to right the broken-down vessel that is my ship. But I didn't realize how much I'd improved until I was thrust back into the netherworld of constant and pervasive fibromyalgia. 

So slowly I turn my sights forward. Gently I can start to reclaim the small parts of myself I had to bury deep inside to survive my last relapse. But my natural tendency is to race full-speed ahead to replace everything I lost. Quickly, like the less time my life is missing from my life, the more I can deny it was ever gone. But I built my house on sand before. Sure I may have physically managed my fibromyalgia, but inside I was still broken and flogging myself for allowing such a predicament in the first place. I was in so much emotional pain when I embarked on my fitness journey in 2013, all I could do was shove it all aside, plaster a smile on my face, and pretend it was real.

Somehow I have to figure out a way to do better this time. A way to stop pretending and make it real. Lasting and authentic. I've been given an 86th chance. So many patients never figure out a way to improve their symptoms so they can improve their lives. I have. But my greed and impatience in wanting my "healthy" life back fooled me into believing I could just push my way into it. I can't. I'm a different me, something I've accepted in the past but its never really stuck. But it's really about time it stuck.

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