Tuesday, January 23, 2018

Dying Inside, Again

Diminished. Irrelevant. Unnecessary. Incapable. Right now, those are the words that describe me. My inability to engage in life, which I'm working so hard to change and thought I was improving on, is simply inadequate. Nobody's got the time or the patience to sit back and wait for me to get it together. And why would they? I've already squandered enough of both to suck up everyone's lifetime.

Is there a soul on the planet I can talk to? Because right now I feel alone and isolated, like a woman existing on an island of herself. But that island has no fruit left on her trees, and the wildlife have all swum or flown away. So I sit and stare out at the sea. Starving. Wondering if anyone is ever going to rescue me. Knowing full well they won't. I'm responsible for every ounce of my survival and can't even feed myself.

This is what year thirteen with an invisible, chronic illness has done to me. Annihilated my self-worth, estranged me from those I know and love, suppressed a life that was supposed to get lived, and turned a vibrant and capable woman into a blithering, pathetic pile of weakness.

It didn't have to be this way. It didn't have to get this bad. I could've gotten sick and not lost my mind. I could have, at least once on this thirteen-year journey, encountered a doctor who didn't treat my life-altering insomnia and muscular pain like a t-shirt I decided to don because I liked the way it felt. Is it a myth, or are there people who get this illness whose friends and family rally together and lift them up? Are those people accepted for who they have now become and not persecuted for never being enough?

I'm retreating further into myself. Every time I get this low, a piece of me dies and stays here. There's less of me to pick up and move forward with. Right now I wonder if I'll ever be able to move forward at all. Thirteen years ago my life splintered off into a parallel universe. Although it seemed like I was still part of the normal world, my truth no longer existed there. Now I'm floating in an abyss of madness existing somewhere between my truth and everybody else's world. My reality is pecking at my flesh, nibbling on my toes, eating chunks of the goodness that was once my soul. At the pace I'm going it won't be long before there's nothing left inside me at all.

Thanks for joining,
Leah

Wednesday, January 10, 2018

Healthy Burnout

I don't know if it slowly crept up on me or hit me like a freight train. All I know is I woke up last week utterly unable to continue spending the majority of my time in my kitchen. To fully understand how I got here, I've got to rewind to last April. Picture it: Los Angeles, 2017, 4:30 a.m. I was sitting on my sofa sobbing because I couldn't sleep, hadn't slept in I don't remember how long, and was still getting sicker following my relapse in 2015. I was so out of control of my circumstances, desperate doesn't even begin to cover it. So through my tears I grabbed my computer and dialed up Amazon. I'd been hearing about a revolutionary book that uses nutrition to heal mystery illnesses for some time and, quite frankly, short of joining a cult was willing to try anything to regain my grasp on my health. So I spent $15 and ordered the book.

After I warily stared at it for a few days, I finally picked up the darn thing and started reading. By the time I turned the last page, I was ready to give it a whirl. Thus began the indexing and cross-referencing and researching of various nutritional supplements to find out how to treat my myriad symptoms in the most efficient and affordable way possible. There were significant foods I had to eliminate from my diet and others I had to figure out how to add. This book preached veganism, which I didn't even begin to try, but ultimately I took what was already a healthy diet and turned each meal into a supercharged dose of nutritional medicine. And what I did was a half-ass attempt compared to what was prescribed...

It's been nine months and I'm feeling worlds better. I'm also severely burnt out on nutrition as a concept and want to set fire to my kitchen. I want to throw my juicer and blender off a cliff. I want to stop buying produce and eat tater tots and queso dip for dinner every night, followed by a midnight snack at In-N-Out. I want biscuits and gravy for breakfast, not a fruit-and-algae-infused smoothie. The thought of pushing one more stick of celery through my juicer makes me want to yank out my hair by the root...

All this animosity has been brewing inside me and it finally roared last week. Clarity came to me as I thought back on the early days of learning how to eat healthy. Back in 2011, the number one commitment I made to myself was to make slow, reasonable changes I could stick to for the rest of my life. But 2017 me was so desperate to stabilize my immune system, I delved head-first into a "diet." The long-term result of this diet was I became food obsessed. It was too restrictive to last a lifetime and inspired cheating that was far worse than what I ate before I began. Which is why diets don't flippin' work. Never one to throw out the baby with the bathwater, I'm reassessing and adjusting. After all, I am feeling worlds better. There are many beneficial components I'm keeping. But I'm also moving forward with balance and the firm knowledge that it is only what I can sustain that can sustain me.

Thanks for joining,
Leah

Wednesday, December 20, 2017

Mood Swing With Me

I have a bone to pick with people who aren't moody. People who wake up in the same smiling mood every day and proceed to go about their business in precisely the same manner as they did the day before. As if nothing's changed. As if it isn't a new day fraught with new challenges and new opportunities and new situations at hand. How is it possible? How has life insulated them from the ups and downs it hurls at so many others? How do they not react when it does? I surmise the non-moody of this world have either suppressed their actual feelings in order to create stability in their own lives or genuinely don't experience shifts in their outlook, perspective, hormones, chemicals, or the bevy of other things that make me go from zero to sixty in 2.2 seconds.

Sometimes I wake up crying: my eyes wet with tears, my heart bursting with anguish, my body riddled with pain. On those days my mood is very different than when I wake up dry-eyed. Sometimes I wake up angry: either I'm pissed off at the world and my inability to fit into it or mad at whatever person did something to drive that point home. If I can contain my anger, which means it's not flare-induced, those are usually rather productive days for me. Nothing fuels my fire faster than fury, that's for sure. But when it's a flare stoking those flames, my efforts at productivity usually leave me scatterbrained and running in fifty directions--rendering me exhausted and utterly useless. And in a rather unhappy mood, seeing as I'm reminded of how little control I have over my own life. Now sometimes I wake up happy. It does actually happen. For a few years I woke up happy most every day. Then I lost my grip on this illness and my happiness went away. Now I'm back to the mixed bag of not knowing what me I'm going to get when I wake up in the morning. It's exhausting.

But back to those non-moody people, which I have clearly established I am not. They have somehow set the standard in society and are really screwing it up for the rest of us. See my moodiness is considered a weakness, a flaw, something I am criticized for. Really, I'm just a human being doing what human beings do--being imperfect. Yet the fact that all I'm doing is feeling my feelings tells me the problem isn't with me. No, I absolutely cannot take out my moodiness on other people. They didn't create my reality and aren't responsible for fixing it. I am. But I've kinda had it. I'm sick of lying when people ask me how I am. I'm sick of telling everyone I'll be fine in order to make them feel better, even though in that moment the world is coming down around me. I'm sick of the expectation that I'm supposed to be smiling and happy at all times, regardless of the flu-like symptoms ravaging my body, or the three hours of half-sleep I got the night before, or the fact that I'm in so much pain I can't move. I'm sick of not being allowed to be sick! My illness is not a dirty little secret. It's my reality and sometimes it pisses me off, makes me feel physically awful, and erodes my desire to engage in life. And I react. I know this is an inconvenient truth to the non-moody of the world, but I also know there are plenty o' moodies out there, just like me. 

Thanks for joining,
Leah

Thursday, November 30, 2017

The Flu

On Saturday morning the strangest thing happened. I didn't feel sick. I woke up feeling good, well rested, and ready to take on the day. My normal layer of fatigue was missing. I didn't have a headache, stiff neck, scratchy throat, or sinus pressure. I didn't feel weighted down by the oppressiveness of trudging through life feeling like crap all the time. I kept mentally scanning my body over and over again searching for any ping or pang of pain but just couldn't find one. It had been so long since I've had a symptom-free day, I forgot it was even possible. I also forgot how motivated to live life I am when I'm not shrouded in sickness.

So I went to Ikea. It's a big place and by the time we were done shopping I was way past hungry, so we stopped for a burger. The second I sat down at the restaurant I felt it, all of it. All those symptoms listed above that took a vacation for the day had come back home. Except my scratchy throat was razor-blade sore and I felt simultaneously chilled and feverish. Never knowing if I'm coming down with an actual cold or flu, or just good ol' fibro, all I could do was wait to see how my symptoms manifested. I think I asked my husband to feel if my forehead was hot at least twenty times. I kept drinking water, trying to swallow the razor blades away. Then around midnight I caught a chill so violent and intense, my entire body started convulsing. I was shaking so uncontrollably as I stumbled to the fireplace, I could hardly breathe and certainly couldn't speak. All that water I drank trying to chase away my sore throat got caught somewhere between my convulsions and inability to breathe. So like the completely melodramatic freak of nature I was in that moment, all I could do was croak at my husband to get me a bowl to puke in, limbs spasming and teeth chattering.

Needless to say I got the flu. It's a mild flu, as far as flus go. My fever broke in twenty-four hours and I (cross my fingers) haven't spent a night of sleep unable to breathe out of my nose yet. I feel like crap and am bogged down with fatigue, but what's new? I'm more excited about those glorious eight hours that I didn't feel like a sick person. How do I get back to that? Trying to do laundry and walk my dogs with my lingering cold has reminded me how impossible it is to accomplish anything while only able to halfway function.

Thanks for joining,
Leah

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