Thursday, November 9, 2017

Depression Doctor

When I become extremely ill, like I did when I relapsed in 2015, it's only a matter of time before I become depressed. I consider depression a normal reaction to suffering from relentless fatigue, pain, flu-like symptoms, and insomnia. It's kind of a lot to deal with. Especially considering I was so impaired I was forced to quit my job, stop exercising, and hit the kill-switch on engaging with the outside world. Given how rapidly my life plunged into the abyss, I can't fathom how on earth I was supposed to sail through such crushing circumstances with a smile on my face and spring in my step.

Yet that is precisely what the medical system in my country expects me to do. Apparently I am not supposed to care that I am sick, about what I have lost, or show concern over how horrible I feel, lest I'm labeled with Somatic Symptom Disorder. As defined by Mayo Clinic, SSD is basically when a person becomes so focused on their pain or fatigue it causes major emotional distress and problems functioning. Ummmm...if the conundrum weren't so ridiculous, I would laugh.

So by October of 2016 my depression got so crushing, I was searching for the will to live--and coming up short. No matter how hard I tried, I couldn't stop the decline in my health. It was like I was floating in the sky watching my life disintegrate round me, utterly powerless to stop it. This ain't my first rodeo. I've fallen and fought my way back up more times than I can count. But I spent the better part of 2016 as THE GREATEST PRETENDER, denying and suppressing the truth of my reality because I was convinced how I felt didn't matter and that I really shouldn't care...  

Guess what, you brilliant medical minds who came together to write the definition for SSD? Pretending what's real ain't real does not work! It became extremely obvious to me the day I came home from walking my dogs and realized I'd just spent a half-hour drafting a goodbye letter to my husband in my head. Infused with furious anger, I had listed out all the reasons there was absolutely no point in either of us fighting for my pathetic existence any longer. While I hadn't hatched a plan to end my own life, per se, I was without a doubt on my way there.

That night I confessed the ugly depths of my depression to my husband. It was awful. But the battle back was only in its inception. Trying to find mental-health help while severely depressed was akin to cruel and unusual punishment. And I have good health insurance. Doctors have never done very well by me, and this experience was no exception. I found a psychiatrist in my network with an opening before the turn of the century, but was caught off guard when I had to give her office manager a credit-card number in order to book the appointment. The day I showed up, I learned they were unfamiliar with the term "co-pay." They wanted me to pay for the visit in full, then promised to reimburse me once they received my insurance's payment. Huh? Yah, I pretty much burst into tears. Confused and desperate, all I needed was an increase in my antidepressant dosage, and they wanted $400.

The psychiatrist herself wasn't horrible. She was quite disappointed that I didn't suffer from addiction, however. It seemed to be her specialty. She had never heard of, nor could she pronounce "fibromyalgia," but was compassionate toward my circumstances. Her diagnosis was shocking. She thought I needed outpatient psychiatric treatment, like a rehab where I went to class every day and learned how to not be depressed anymore. I tried to explain how with my illness, making a once-a-week appointment was a hardship; every day was simply impossible. If I were capable of that level of activity, I'd go get a job and get on with my life and forget about the whole sordid affair! Seeking a more realistic option, I inquired as to what level of help she offered. She didn't do counseling, just medication management, and didn't know of any therapists to refer me to. I left with my prescription in hand and never went back.

The psychiatrist was a walk in the park compared to the therapist I found. The therapist was twenty minutes late for our first appointment and spent the entire session listening to me talk while she input my medical information into her cell phone (at least that's what she said she was doing). The second appointment she was thirty-three minutes late, then once she arrived informed me she was delayed because she was shopping for her granddaughter's upcoming birthday party. That pissed me off. The third appointment was my favorite because it consisted of me sitting in her waiting room for forty-five minutes before receiving a text from her informing me she was twenty minutes away. I stood up and walked out of the room. Yea, I personalized the way this very unprofessional woman treated me. In my depressed state all I felt was mortified that I had become such an insignificant human being, not even a person I paid treated me like I was worth their time.

Clearly finding the will to want to live was up to me and my antidepressant. I was in an extremely fragile state and these doctors were doing severe harm to me. I didn't have the emotional stamina to keep shopping around until I found a mental-health professional who was the right fit. This experience rocked me, sent me reeling as I struggled to understand why I wasn't worthy of help. Already broken, I feared for the woman I would become after enduring more disregard and abuse.

It's been a little over a year since I first sought help, and after a hard-fought battle I can confidently say I securely own the will to live. The shift in my depression has far more to do with getting a grasp on my fibro/CFS symptoms than anything to do with mental health. Yet looking back on this experience, I can't believe how horrible it was. I was in a very desperate, awful place, and couldn't find a semblance of assistance. It speaks very poorly of the medical system that is is so clueless as to what's wrong with me, they solely seek to shut me down. 

Thanks for joining,
Leah

Saturday, October 28, 2017

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

Friday, October 20, 2017

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

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.

Thanks for joining,
Leah

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

Thanks for joining,
Leah

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.

Thanks for joining,
Leah

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.

Thanks for joining,
Leah

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.

Thanks for joining,
Leah 

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,
Leah