Misery Saturation

Last weekend I hit my misery threshold. I'd been surviving for two years on a steady diet of panic, fear, anger, depression, disillusionment, and good ol' fashioned misery. I found some hope in April when I drastically changed my diet, and a substantial amount of the aforementioned misery slowly started to abate. Yet still I was miserable. Perhaps part of me was used to it. I know another part of me felt justified--I am sick and grossly misunderstood, after all. Part of me was miserable because fibromyalgia makes me feel miserable. It's an unavoidable part of the illness. But the biggest part of me was miserable because, for the life of me, I couldn't grasp onto the handlebars of hope and pull myself up out of the mire. It was something I'd done before, and knowing it was possible but I wasn't capable of making it happen was making me...miserable.

When I'm miserable I turn into a real bitch. Considering I've spent twelve years battling this illness, that phenomena leaves very little doubt in my mind as to why I have such a small circle of people who have remained in my life. But that bitchiness breeds such profound feelings of guilt inside of me; that guilt is almost worse than the misery! So for the past two years I rolled like a ball down a hill, gathering rocks and stones and twigs and branches to throw into my stew of misery. Well last weekend that stew bubbled over and instead of engulfing me, it put out the fire smoldering beneath it. Overnight, my misery grew cold.

I woke up on Sunday morning done. There wasn't a single part of me that could exist for one more moment as a miserable human being. Behind me was a cesspool of misery and I knew beyond the shadow of a reasonable doubt that, like Lot's wife, if I so much as glanced back I was toast. Done. Sucked up in the quicksand of misery. So I stopped wallowing in the past and decided to focus on my goals regardless of how I feel. The results are ridiculous. I'm in agonizing pain from doing yoga twice this week. Exercising has also unleashed whatever "fibromyalgia" is inside of me and put me into a pretty decent flare. Setting my alarm every morning has me back to not being able to fall asleep at night. I feel awful. 

Yet I am not miserable. I feel happy and satisfied and accomplished. Putting in the work to to return to the land of the living produces terrible consequences for me. This is what I fight against trying to get my life back. This is what people don't grasp about this illness. For two years I was too sick to even try, and now the flare-cycle I've kicked myself into could last for months. Nobody knows because nobody knows what this illness is. As I increase my activity and demands on myself, it could get a lot worse. Still I must keep going. It's what I must do if I want to stop living sick. It's what I have to do and, if given the same option, what an astounding number of the healthy people who judge me could not do.

Thanks for joining,

Leah

Futility

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.

Thanks for joining,

Leah

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.

Thanks for joining,

Leah

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

Thanks for joining,

Leah

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.

Thanks for joining,

Leah

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.

Thanks for joining,

Leah