Tuesday, November 21, 2017

Inching Forward, Thankfully

It's not quick, and it's not linear, but holy smokes my health does seem to be stabilizing. I can fall asleep at night, wake up kind of the same person every morning, make a plan with myself and stick to it, and spend a significant part of most days somewhat productive. My flares no longer consume me, they merely suck. They don't render me housebound, utterly destroy my psyche, and send me reeling backward for months on end. Phew. That was a horrible, terrible, no good, very long flare that seems to have met its match. Thank God.

While in the throes of my two-year relapse, I lost hope. Not only that, but I lost my faith as well. Hindsight explains why things got so bad. How on earth was a sick, hopeless, faithless girl supposed to keep looking up? I believe given my particular set of circumstances mixed with my personality type, I would have been suffering from extreme delusions and denial if I hadn't utterly freaked out. At least I didn't detach from reality; I floated down the river of misery fully aware of my surroundings. Thank God for that.

My anger and bitterness stem from my helplessness. I can't imagine how different it would be to have an illness the world at large believes is real. Since I don't, I spend my life playing "Me Against the World" on repeat, fending off double invaders: the very real disease attacking my body and the public perception that I must be insane to consider myself sick--seeing as I look so healthy and smile so much. But now that I've got a wobbly sort of control over this disease, I don't feel so helpless. This means I'm not seeking approval, I'm focused on getting my life back and doing so in a way that doesn't make me feel awful. For this shift in my perspective I am astoundingly grateful.

I am toiling tirelessly to reclaim every inch of my lost self. I aim to be better than I was at my best, and strive to go beyond that. Someday. But today I'm paying attention to the pain in my body and melding it with how to complete my lowly To Do list required to get ready for Thanksgiving. I'm taking joy in walking my dogs in the late November sunshine and how powerful it feels to contort my aching limbs into a simple routine of yoga poses. No longer consumed with that ugly bitterness, it seems I've found my lost hope and am thankfully shuffling forward.

Thanks for joining,
Leah

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