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,

Leah

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

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,

Leah

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

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,

Leah

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

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,

Leah

*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  

Goodbye Chicken Little!

For the woman who loves Mondays, simply because they offer a clean slate to do better, you betcha I'm thrilled it's a new year. While I'm not quite in 'resolution' mode, I am hell bent and determined to implement two changes in my life. The first is to stop reacting. To anything and everything. Always. Forever and ever. This doesn't mean if some horrible tragedy befalls a loved one I can't cry, but it does mean I can't run around like Chicken Little holding my wounded head and declaring to anyone and everyone that the world is ending. Which is something I frequently do. But it hasn't ended yet, hence the resolution to stop reacting.

The other change I'm striving for is to finally, once and for all, no ifs ands or buts, get myself on a normal schedule. Staying up till after two in the morning, then sleeping till eleven the next day, is completely annihilating my ability to move my life forward. The problem is it's frequently hard for me to fall asleep, and I'd rather stay up until my face is planting in the keyboard with exhaustion, anyway. The late night is when I do my best writing. But I guess I'm growing up, or something equally awful, because what my late nights are costing me is the ability to resume a high degree of normal living.

Herein lies the problem. When I don't get enough sleep I flare, which for me starts with the most scathing case of 'devil woman' mood. Not only do I want to obliterate any and every person on Earth I've actually met before, but the entire planet, as well. Next I get really hopeless and lose my faith in any sort of a future, which usually prompts me to don my chicken costume and run around holding my wounded head, declaring to anyone and everyone that the world is ending. This stupid cycle has reprized so many times I can't take it anymore. So I've just gottta bite the bullet and overcome this absurd pattern. Try and go to bed as early as I can, painfully vacate dreamland when my alarm goes off way too soon, and expect the flares. I mean, if I know they're coming anyway, can't I just not react?

Thanks for joining,

Leah 

*Please vote once a day in Healthline's Top Health Blogs Contest! Still hanging in at 10th place, thanks so much for the support!

#fibromyalgia #fibro #healthblog #newyear #resolution #chronicillness #chronicpain 

My First Sick Christmas

So I’m strolling through Instagram last night, and come across a very young woman who is disabled with ME/CFS. She’s popular, a couple thousand people follow her, and quite open about her struggles with this illness. She got sick after catching a “flu” virus. A year later she isn’t better. I stopped trolling for likes on my juicing post, and immediately started sobbing from the depths of my soul. I know her plight so well I want to scream into the loudest microphone in the world! CFS is what first got me sick. Fibromyalgia wasn’t my initial diagnosis. Chronic Fatigue Syndrome was. And just typing the words makes me wail like a wounded baby. Because if I knew then, nine years ago in my twenties, what I know now, a battered and broken warrior in my late thirties, OH MY GOD, what could I have done to salvage my lost life?????!!!!!! Is there anything I could have done to make the last nine years not happen? Is there anything I could tell this girl, who is so upset to be looking at her first Christmas tree after a year of being sick? Anything I could do to aid her plight or lessen her burden or make it last less than a lifetime?

No, there isn’t. Because I don’t know much more now, than I did then, about this disease. Christmas 2006 was my first disabled holiday. I was still living in San Francisco. My family came to visit. I knew I couldn’t cook, I couldn’t even hold a knife to chop, I was buried in so much fatigue and pain. And I don’t mean tired or overworked or exhausted. I’m talking, “if I have to stand here for twelve more seconds I will cease to exist, that’s how weak I am,” kind of fatigued. So I ordered takeout and set the table. Except I couldn’t do that. I mean I could, if my husband picked up the food, and after each piece of silverware I placed, I rested for twenty minutes. But when my family actually arrived, all that ‘setting the table’ business left me without enough strength to even open a bottle of wine. Literally. How do you explain that? How do you get them to believe you, to understand how serious it is, to recognize the world is threatening to swallow you whole, from simply being unable to exert the energy required to set the table and open a bottle of wine?

Clearly I don’t know how. I’m a failed experiment. My personal relationships are in shambles. Literally every single person I know is either completely disappointed in me, or has given up entirely. My family is still waiting around for me to contribute to a 'reciprocal relationship'. The fact that I keep trying, unsuccessfully, only makes life harder for all of us. Of the few friendships I have left, one of them recently asked me what I needed to be happy in life. How could I do anything but laugh, and bitterly inform her happiness is such a frivolous luxury it’s no longer even in my lexicon? Who the hell, in this industrialized nation chock full of first-world problems, wants to be friends with that? Is this seriously who I’ve become? So angry and alienated from society I can’t relate to someone I've known for twenty years on any meaningful level? Why do I even engage in these conversations at all? In fact, why do I keep going at all? 

And as quick as my descent into utter madness starts, I make it stop. Because if there’s anything I know by now, it’s how to survive the ugly condition of despair. How to distract myself with reason, numb myself with distraction, or reason my way into numbness. I've gotta get a grip, or my perceived reality will smack me down faster than any one aspect of my actual reality ever could. And Lord knows I've worked far too hard, been given too many second chances at this thing called life, and haven't even remotely completed what I was put on this earth to do, to let that happen.

Thanks for joining,

Leah

*Please vote once a day in Healthline's Top Health Blogs Contest! In 10th place, thanks so much for the support!

#fibromyalgia #fibro #healthblog #sickchristmas #chronicillness #chronicpain #cfs #me #cfsme #mecfs