Tuesday, May 12, 2015

My Fibromyalgia Awareness Journey

The guts to go public with this blog didn't come easy. It required high-doses of Prednisone, to be exact. The year was 2010, and it was an infinitely simpler time in the world of social media. Or so my naivete thought. My Prednisone-high made me so empowered to bring awareness to this horrible illness, it inspired me to rip out my guts and spew them all over the pages of this blog. I figured I'd been through living hell and survived, so maybe my words could help someone. Hindsight is such a bittersweet lover, seeing as I was knee deep in the middle of my second waltz through Hades, but was too fucked up to realize it. 

But, back in the beginning I didn't just pen this blog. In order to get people to read it, I tapped into the fibromyalgia community on Facebook and started promoting my writing. Much to my surprise, not only did people read my blog, but the feedback I got was incredible! Suddenly, my feelings of total estrangement from normal society lessened a little as I started to meet people who understood my experience. Sure the details differed, but we'd all been kicked in the teeth by the impact an unexplained chronic illness has on one's hopes, dreams and the progress of living life. To say it's anything less than a bonding comprehension would be to understate the severity of the suffering.

Sadly, it didn't take long for my new-found joy to go completely awry. Looking back now I can't remember if I got off Prednisone first, or if the cyber-bullying predated my foray into one of the most physically and mentally weak phases of my entire life. All I knew was my world was crashing down around me, all the work I'd done to get my life back from fibromyalgia had been obliterated, down was up, day was night, good was evil, evil was all there was, and the people online were viscous. Mean. Attacking me personally on such raw levels, the woman writing this today can't believe I even took it seriously. But, alas, I did. After that, I nearly lost myself in an abyss so dark, I didn't know such caverns of blight existed.

Like a cloak of impenetrable protection, my ensuing retreat of anger and betrayal exiled me from the online world in nearly every way. The only reason I didn't delete this entire blog and the Facebook support page I started was because my husband physically stopped me from doing so. I felt so exposed and abused, I vowed to never allow the world at large such open access to me ever again. I shoved my sweeping plans for fibromyalgia awareness on the shelf of "not worth my sanity," and channeled all my intentions into writing my fiction book about a girl whose life gets all screwed up when she gets fibro. When I could muster up an intermittent blog, they pretty much covered the same rotation of three safe topics in an endless, tired reprise. Knowing I had to defend every damn word I wrote to my dying breath left me with little to say, and even less of a desire to say it. As I settled into life as a reclusive, anti-social loner, the last of my innocence nearly a decade of sickness hadn't stripped me of yet, truly died.

The funny thing about my life is for a long while the bad just kept coming, and it wasn't over yet. I learned this the day my rock crumbled. Suddenly overnight, I had to find more strength inside my bitter, angry, weak self than I'd ever possessed in my entire existence. Life reached such a basic, fundamental level of sink or swim, I became terrified for my own survival. That fear sharpened my fighting claws into vicious blades of determination. In the ensuing weeks and months, as my impending demise grew increasingly smaller in my rear-view mirror, I finally understood what a survivor I truly am.

While the deep scaring all this trauma slashed into my heart has mostly healed, I can still only engage with social media in very limited doses. It took a lot for me to recognize anyone who does anything on a large scale is opening themselves up to ridicule and hate. As much as I wish I realized it in the beginning, it's a hard-fought lesson I won't have to learn twice. But knowing it's par for the course doesn't make it any easier to absorb. So I'm tender, delicate, and still very guarded in my online dealings. I'm also almost done with that book, and still have every intention of raising tremendous awareness about the horrible disease that gobbled up my life.                       

Thanks for joining,

#fibromyalgia #fibro #chronicillness #chronicpain #invisibleillness #fibromyaligaawareness  

Thursday, April 9, 2015

Back To Work I Go

Last fall I started back to work as a freelance makeup artist. It wasn't something I was planning, it was actually kind of a fluke. I was buying makeup one afternoon and ran into a former employee, who now holds a relatively significant position with the company. After overcoming some psychological resistance on my part, seeing as I thought my cosmetics days were long behind me, I decided freelancing was a great way to pick up some much-needed cash, as well as reclaim a piece of my life my illnesses stole from me. But it was scary. For my first assignment I had to drive forty-five miles away, work in a fast-paced environment with the *gasp* general public, and spend eight hours running around on my feet. Then drive forty-five miles back home on one of LA's most infamous parking lots, the 405 freeway. All by myself. 

Of course I was so nervous about being late, I didn't sleep the night before. That lasted a good three months. Upon arriving at work, I learned during the four years I was home convalescing a bunch of products were discontinued and new ones appeared in their place. To whom exactly was I supposed to sell what? Did I still know how to put makeup on other people? Could I even make polite chit chat while hoovering an inch away from a strange woman's face, or remember how to sanitize my testers so I didn't give my customer's pink eye? While the questions whirled around my brain, I got to work. Needless to say, it went swimmingly. I actually even had fun. My future assignments were sporadic and geographically vast, so last month when an opportunity came up for a part-time position not too far from my house I decided to take the plunge back into the land of the gainfully employed. That was scary too, but not as bad as the first step forward. Maybe because I already knew I could do the fundamentals of the job. Now I just had to relinquish all control over my own schedule to the retail gods, and pray for mercy. 

One month in, and I'm on my knees begging and pleading for that mercy. I'm flippin' exhausted! I can't sleep at night, and waking up at six in the morning is quickly turning me into a miserable wretch. I'm grasping onto my luxurious lifestyle of eight hours of sleep and yoga and the gym and juicing, all the things that make living with fibromyalgia manageable for me, by a frayed little thread. And my book...the passion of my life I've spent the last four years fashioning into something magical, has been painfully shoved onto the back burner of my cold, neglected stove. I'm simultaneously trying to ignore the fact that my life is spiraling out of my own control, while doing everything in my power to hold on to my progress. 

I have to remember this is a transition. Transitions are hard, especially for the chronically ill. As I struggle to keep my footing, I'm constantly reminding myself how hard I toiled to get to a place where working part-time was even a viable option. All my attention is focused on how healthy I am now, not how sick I was in the past. I'm juicing with habitual vengeance, and believing it will keep my deficient immune system functioning well enough so to keep me from descending back into the hell of this life-sucking disease. And I'm praying. A lot. I'm believing if God bothered to drop this surprising opportunity in my lap, with enough hard work and determination I will be successful.

Thanks for joining,

#fibromyalgia #chronicillness #chronicpain #job #work #employment   

Saturday, March 28, 2015

Say Cheese!

June marks the tenth anniversary of when I first became sick. Ten years since life as I knew it ceased to exist. Ten years of more devastation, loss, and anguish than I thought one lifetime could possibly possess. During the last ten years, I've reached some severe lows. Like many people who live in chronic pain, eventually my appearance became the last thing in the world I cared about. I hurt too much to give a rats woo-ha how meth-addicted my long, dark roots looked against my bleached-blonde hair. When my chronic fatigue syndrome/ME was so bad I had to choose between taking a shower and emptying the dishwasher, the dishwasher usually won. Between the weight gain and medication-induced apathy, panic and fear over my crumbling ability to care for myself, and that faithful friend called depression to accompany all of this misery, I let myself go.

I didn't just let myself go. I wouldn't shower for days. I'd greet both the sun and the moon wearing the same sweatpants, again and again and again. Makeup became something I put on for work because, after all, I was a makeup artist and kinda had to. After my strokes and post-Prednisone weight explosion, I fit into exactly one pair of pants. I wasn't working anymore, had no friends, no money to buy new clothes, and never went anywhere with my frizzled-out brain anyway, so I stopped caring about what I looked like. I shunned both the mirror and camera with equal vigor and retreated into hermit-ville to write my book. 

Eventually I found my way back from the dark abyss of chronic illness sucking up my entire existence. It wasn't until I started juicing that I began caring about how I looked again. Not spending most of my days in a horrible flare left me with enough frivolity in my life to want to look better. I dug out my cases of makeup and tried to remember how to put it on. I forced myself to shower every day until I started to feel nasty when I didn't. My shoulder didn't hurt so bad anymore, so I started straightening my hair. Except I still wasn't working. It seemed completely absurd to go to all the effort, only to sit on my sofa by myself and write my book.

Enter Instagram. My profile is selfie-obsessed on purpose. After so many years of self-neglect, I had to get comfortable with the woman I saw in the mirror again. So I forced myself to take my own picture every flippin' day and publish it on the world wide web. Ahhhhh! It was so awkward at first! I felt like an idiot. A self-obsessed, conceited, superficial ninny. Eventually I got over my self-consciousness, remembered I was doing it for a reason, and started having fun. Today caring about my appearance has become about so much more than my vanity. It's yet one more thing sickness stole from me, that I fought my ass off to win back.

Thanks for joining,

#fibromyalgia #chronicillness #chronicpain #sickness #vanity #selfie #appearance       

Friday, March 6, 2015

The Anger Inside

I accidentally put sunscreen so close under my eyes that my eyelashes picked it up and deposited it in my eyeballs. So I proceeded to squint and blink my way through stinging, blurry vision for most of the morning until I finally started going so crazy I doused my eyes in water. But it was too late. By the time sat down to start writing I was already pissed off and fidgety and distracted. The kernel of anger sitting inside my stomach started pushing anxiety into my limbs. I started obsessing on everything I need to get done, which is a lot. Then I got mad over how late in the day it was and how little I'd already accomplished. This led me to fixate on how many things are wrong with my life, which is ginormous. Next, the bucking panic over the fact that this shattered, shambled semblance of reality is actually my earthly existence started to take over.

It's my daily fork in the road. Or at least every other day, so it seems. I've found if I squash my perception of what's real and intently focus on doing something to improve my circumstances, like writing my book or juicing, I can actually kinda skip over the complete freak-out threatening to suck me down. By now I know the physical symptoms of the flare will come tomorrow. And in a few days I'll once again look out the window of my life to see blue skies and rainbows. Hopefully I can get a few days in before the viscous cycle starts all over again. 

Except if I indulge that anger. That anger is so huge, so all-consuming, so tremendous that if I give it one second of credence it's all I can see, do or feel for days on end. I become so self-destructive to my own life it's actually not an indulgence I'm allowed any longer. I've had two bad flares the last two weeks. After a few months of doing pretty well I have to ask myself what's going on? That's when it hit me. I've been indulging my anger. Accepting that this is indeed my life, and getting to the point where I can ride out this cycle without reacting, is one of the hardest things I've ever done. It's also the only way I've moved my life forward. So I'm taking a deep breath, rejoicing that it's 2 PM, not 4 PM, and focusing all my attention on something that improves my circumstances. After four years, it's high time I finished this book. 

Thanks for joining,

#fibromyalgia #fibro #chronicillness #chronicpain #anger #coping          

Tuesday, February 24, 2015

The Flare Of My Dreams

I've been doing so well lately I was starting to wonder if I still had Fibromyalgia. Then I woke up this morning. My eyelids were heavy, head ached, and I felt like I was trudging through quicksand. My determination to overcome this horrible illness is so tunnel-visioned I managed to push myself all the way to the gym. Once I started my workout I knew this was more than just a mild fluctuation in my immune function, the main symptom I seem to be left with these days. Regardless, I made it through my workout only somewhat annoyed my diminished cardio-endurance had me huffing and puffing with nary a sweat bead rolling down my forehead. On the way home I started feeling worse. The familiar flu-like symptoms I spent years at the mercy of descended around me like a blanket, snuffing out any post-workout endorphin-glow I might have managed to achieve. Now I sit here feeling so awful I'm trying not to sink into a PTSD fit of "screw my life" despair.

Because really, as bad as I feel today, this is NOTHING compared to the disease that disabled me. A mere 2 on the 1-10 symptom-scale of impairment. What I would've severed my right arm to feel like when I was at my sickest. Back then I was in so much pain simply driving to the gym was a pipe-dream. Today I dead-lifted 70 lbs. before coming home to feel sorry for myself. In the midst of my aching face and body chills I'm outrageously grateful I don't live like this every day anymore. It's also been a harsh reminder as to why Fibromyalgia decimated, obliterated, and annihilated my entire life. This is unbelievably miserable, and I'm not even in pain! 

I somehow seem to have found my way to the other side of this disease. As I actively try to maintain my new-found health I'm also very busy trying to put my life back together. It's an exhaustive task, but one I never thought I'd have the opportunity to embark upon. Days like today make me take a pause from my determination to prevail, and recognize how awful being chronically ill truly is. It doesn't just make you feel bad. It wiggles and worms into every nook and cranny of a person's existence until there are so many damn holes, life collapses. Observing this phenomena through the rearview of my life's trajectory makes me more determined than ever to conquer this bitch and press on. As soon as I'm over this flare, of course.

Thanks for joining,

#fibromyalgia #flare #fibro #fibroflare #chronicillness #chronicpain 

Tuesday, January 13, 2015

Nourishment Is Not A Fad

As a child growing up in middle-class America I believed nutritional information, that little box with the breakdown of calories, fat, carbs and sugar on the back of packaged food, was nutrition itself. By the time I was in high school the calorie-obsessed '80s had given way to the fat-obsessed '90s. So basically I believed nutrition consisted of grams of fat, and little else. How was anyone to know polite society wouldn't truly grasp the real nuts and bolts of nutrition until the Atkins-obsessed '00s taught us about the evils of carbs? What freedom! Everyone gleefully chucked their white pasta and fat-free Wonder bread for bacon-wrapped fried cheese and steak.

It took me many years to unlearn the bullshit passed off as nutritional knowledge in the good ol' U.S. of A. It took me even longer to finally source what nutrition actually is. Nourishment. I no longer give a rats woo-ha about calories, fat, carbs, sugar or food-guide pyramids. In fact, I rarely eat food that even comes in a package to put a label on. But when I do, the FDA's nutritional information chart is the last thing I look at. Instead I focus on the ingredients. My aim is to eat as little processed, refined, chemically enhanced and genetically modified as possible. In the beginning it was hard. After a few years it's second nature.

By far the biggest shift in my relationship with food came when I started juicing vegetables in late 2013. Almost instantly my food consumption dropped drastically, because I just wasn't hungry. Miraculously, I stopped obsessing over food, and pretty much stopped thinking about it all together, except when I needed to refuel. The desire to eat when I was bored or upset or in pain or feeling sorry for myself or celebrating or deserving some indulgence just...went away. Of course I'm laughing my ass off because not only did all the weight I'd been struggling to lose for much of my adult life just fall off, Fibromyalgia became a totally manageable illness. My body was nourished, and the wonderful gifts its given me in return just keep on coming.

Thanks for joining,
*Thank you, from the bottom of my heart, to everyone who voted for me in Healthline's Top Health Blogs Contest! There's still a day or so left to vote so if you get the chance, please click the link above. Seeing so much dedication and support sure gave this tired ol' blogger quite a boost. Cheers!

#fibromyalgia #fibro #healthblog #diet #nutrition #chronicillness #chronicpain #juicing #healthline