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               

The Exercise Conundrum

For years my doctors told me to exercise. In that "get up off your lazy ass and move already" kind of way. After a while it got silly. Here I was too sick to work, and I was just supposed to breeze through step class like some bored housewife with too much time on her hands? Seeing as I was in too much pain to carry the laundry down three flights of stairs, I ignored such frivolous advice. The pounds packed on, I gained even more weight from going on medications to treat the pain, and then the pain got so bad Vicodin became my breakfast of necessity. I was back to work, but barely, and every other aspect of my life was descending into total chaos. And still, my doctors told me to exercise.

It was blatantly insulting. Clearly they weren't of the same mindset as I, and didn't believe the fire racing through my muscles was real. They didn't get how much it hurt to do something as innocuous as blow dry my hair. They didn't get it, how miserable I felt in the aftermath of so many insomnia-wracked nights, and how many days they took me to recover. Days I was struggling to meet my obligations of work, home and family, and failing miserably. They didn't get any of it. They just told me to exercise and not be so unhappy. Like it was a switch I could turn on and off at the will of my whim! I recognize now that a person who hasn't experienced Fibromyalgia pain doesn't understand how acute, crushing, and all-encompassing it truly is. But back then all I could do was pray my doctors might try and help me a little bit, if I took their absurd advice and at least tried to exercise.

Today I walk a mile and a half five days a week, do 360 stomach crunches four days a week, bench press 45 lbs., squat 40 lbs., and have started wearing ankle weights to add an extra challenge to my yoga practice. I've gone from a size 18 to a 6. At this point in the game I'd rather give up Dos Equis forever, than renounce my triumph over exercise. It took me more years, flares, setbacks and determination to get here than I ever imagined possible. But I am not in pain anymore, as a lifestyle. Sure I have flares that hurt like hell, overdo it trying to be Superwoman, tweak ligaments while working out and can predict the rain with the distinctive stabbing pain it sends through my tender points. My life is not pain-free, but it's not pain-filled, either. I've achieved a far greater physical recovery than I ever expected. I don't know if any other patient would have the same result. After all, we may not even have the same disease, seeing as Fibromyalgia is a diagnosis of exclusion. But I do know I somehow found the gusto to stick with it after every self-induced flare would land me in bed for a week. One day I looked back and those weeks had become days, days turned into hours, and my life was kinda mine again.

Thanks for joining,

Leah
*Please vote once a day in Healthline's Top Health Blogs Contest! In 9th place, thanks so much for the support!

#fibromyalgia #fibro #fibromyalgiablog #fibroexercise #fibrofitness #fibromyaligaexercise #healthlineblogcontest #healthblog          

Est, Baby

My brain is a jumbled, churning whirlwind of thoughts and emotions. Fifty urgent tasks ticker-tape through my mind at a frenzied pace. I've got so many different interests pulling on me, it feels like my limbs are being racked on a Medieval torture device. To compound my frustration, all this turmoil only leaves me utterly spent, exhausted, collapsed. I feel like I'm being sucked down, stuck to the earth, unable to get up off the floor. Sick or not, I've gotta get a grip! If I can't catch the whirling ball of my own reality before it crashes to smithereens, nobody will!

So I turned on the Werner Erhard documentary Transformation, about his infamous est seminars from the '70's and '80's. Last year his hard-core philosophy of personal-responsibility, wrapped up in a bunch of insults aimed toward the stupidity of humanity, helped me reign in my out-of-control life. Somewhere between now and then I regressed back to my old patterns of anger, bitterness and avoidance. Indulging those feelings is a mighty short road to total self-destruction. I've worked too hard, and come too far, to let a weak mind simmer away my progress into oblivion! 

Did watching the documentary transform me? No. Anyone with chronic illness knows life is too complicated to make a "decision" and get instant change. But Mr. Erhard's dogma helped. He reminded me so much more is in my control than I believe. The notion that ones reality is perceived by their emotions choked me up a bit. Man have I fallen back into that trap! His unrelenting belief that a person's life is their own responsibility, and theirs alone, was like salve to my aching soul. I realized that's precisely where I've gone wrong. Somewhere in the last five months I lost sight of the importance of owning my life, 100%, and not expecting anything from anyone. Things got so hard I was unable to be there for myself. I stopped standing on my own two feet and became a gaping hole of need. In fact, I've fallen on my ass and am being sucked down into the quicksand of my own creation!

Est. It is. It is what it is. What is, is. The past, which swirls together to create the present, isn't changeable. But the future, right now, is. Each moment is the future, and that is where the fork in the road emerges. Where I can go from victim to victor, angry to actualizer, stagnant to mobile, stuck to progressive. I can clear my mind, pick what's most important to move forward, and sink my hungry teeth into the juicy flesh of personal responsibility.           

Thanks for joining,

Leah

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

#fibromyalgia #fibro #fibromyalgiablog #wernererhard #transformation #est #pickyourselfup #moveforward #personalresponsibility #healthlineblogcontest #healthblog          

Vote For Me, Please!

When I opened my email this morning I almost fell off the sofa. This little blog right here has been nominated by Healthline.com for 2014's Best Health Blog Contest! I've been honored to be named a Top Fibromyalgia Blog by Healthline in the past, but this is bigger. This pits me against ALL health blogs, covering every topic under the rainbow, and there's an actual winner determined by votes. Imagine my surprise when a quick scroll through the competition didn't notice any other Fibro blogs on the list. What a massive opportunity to spread some much-needed awareness! 

I'm so glad I started my little Instagram selfie experiment a month and a half ago. Something told me the need for shameless self-promotion was on the horizon, so I better get comfortable with it. Well here it is! Somehow my exorbitantly-dramatic, perpetually-victimized, emotional basket-case, up-and-down like a zipper, I will prevail at-all-costs depiction of life with this illness caught somebody's attention. I suppose attention was my goal all along. But it's been so long since I started this whole thing, and I've dealt with so much adversity because of it, I forgot. Now visions of a Fibro blog placing in the top three has me lit up like a Christmas tree with excitement. Imagine if a lot of people who don't know much about the fastest growing chronic pain disorder around learned a thing or two about living with this disease... 

So please, friends and readers who've kept me going over the last four years, vote for me. It's how they determine the winner. Please spread the link around social media, bribe your little sister, start a Facebook account for your infant...do whatever you feel up to doing, to bring some much-needed awareness OUTSIDE our community. 

RULES
-Follow this link: 2014's Best Health Blog Contest

-Don't nominate Chronicles Of Fibromyalgia, we've already been nominated. Just scroll down a little until you see the blue VOTE button. 

-Each Facebook or Twitter account can vote once every 24 hours. The contest runs through January 15th.

-Do it again tomorrow!

From the bottom of my heart I thank you,

Leah    

Searching For A Doc

Seeing as it's almost the end of the year, and I have to get a physical before the calendar flips to 2015 to keep my health insurance discount, I had to break down and find a new doctor. This is one of the most traumatic and difficult topics of my life. One I would prefer to avoid indefinitely, if only I could write my own prescriptions and order my own lab work. With such a ridiculous medical history under my belt, I've pretty much seen it all. Over a decade of near-death encounters and chronic illness has shown me the supreme fallibility of how the practice of medicine is applied to the patient in need. I've been denied care, laughed at, accused of being a junkie, dismissed, called a liar, treated like a hysterical female not worthy of human respect, told my conditions and symptoms aren't real but psychologically manifested, and informed I was the one who needed to figure out how to get myself better. And those are just the ones that stick out in my head. Needless to say, I'm a faithless woman thoroughly and completely medically traumatized beyond repair.

Oh yes, I could easily never see another doctor for as long as I live, and be quite happy about it! Many moons ago I gave up on a doctor actually fixing me. Seeing as I was too sick to live my life, I still went to each appointment with a glimmer of hope in my heart, though. A glimmer which would quickly morph into a flaming ember of rage as my expectation took a flying leap out the window. It took a long time for me to accept the illness which devastated my life wasn't, by and large, accepted by the medical community as real. Enduring such a contradiction as the fabric of my reality made me a very bitter, angry and hostile individual. Which has done wonders to improve my tenuous physician-patient relationships. Not.

Low expectations lead to low disappointment, right? At this point I'm looking for a competent doctor who believes Fibromyalgia exists, will manage my medications, blood tests and vitals, and has hospital privileges if my body or brain tries to die again. So today, with only a few weeks left to accomplish the insurmountable, me and the internet started my search. It only took a couple of hours to find a prominent and well respected MD linked to both UCLA and Cedars-Sinai, who is taking new patients, treats Fibro, and accepts my insurance. Seriously? I was ready to spend a few days working myself into a hysterical mess of unfairness and outrage before piling into a heap of failure. I mean, it's not like I've been practicing award-winning procrastination and avoidance techniques over a few measly hours of work. Do I dare get my hopes in a tizzy again, that maybe this doctor will do something besides recognize my low thyroid and genetic triglyceride malfunction? It's a scary notion. One I will try not to get too hyped up on as I spend the next few days compiling my medical records and gathering my treatment strategy.

Thanks for joining,

Leah

The Tale I Tell

Where do I go, when I feel like this? When I'm on the verge of total crisis, like my life's about to spin out of orbit? When a meltdown of such epic proportions is on the horizon, I'm certain to never return? My book. For the last three horrible, awful years, I've poured all my angst into my book. It provided a fabulous distraction from a life I didn't want to be living. Whenever my reality became too sorrowful or burdensome to bear, I'd escape into a delicious fantasy-land of my imagination. It was easy to focus all my energy on making my characters lives so much worse. Or better. Or sweeter, more vindicated, less pathetic, and at the very least, infinitely more interesting than my lowly existence.

  

I don't think I'd be alive today if I hadn't started writing my book. It started out as the byproduct of this blog. I knew I wanted to shout Fibromyalgia awareness from the rooftops, but I didn't know how to get on the rooftops, let alone get anyone to listen once I was there. What I did know how to do was write. So I set out to demonstrate the devastation this miserable disease can have on a life by dropping it into a fictionalized tale. 

While I was busy constructing this world of absurdly behaved people doing absurdly ridiculous things, my life has undergone a complete metamorphosis. Changing my expectations and behavior got me to a really good place. One where I started to believe in my future again, and wanted to actively participate in improving my quality of life. Except now my grasp is slipping. I suppose it's fitting, that I descend into another round of Fibro hell as I prepare to write the conclusion of my story. I just pray once my latest battle with this disease is done with me, I'm not left holding nothing at all.  

Thanks for joining,

Leah            

I Meditated

I'm on the verge of cracking up, again. My constant and pervasive anger over pretty much everything is threatening to swallow my life whole, again. The burden of my reality has become too much to bear. Again. Realizing it's only been one year and three months since I sat in the exact same trough does nothing to focus my racing thoughts. In fact, it only grows my panic. Where on earth did I find the power to change my thinking and get my health to a stable place? My memory tells me juicing made me feel a lot better, and accepting reality for reality's sake reigned in my consuming frustration. I'm still juicing, desperate to regain a semblance of an immune system after my absurdly destructive move to California, but I've completely lost my grip on accepting my life.

When my eyes flipped open this morning negative thoughts swirled around my brain. But I just couldn't do it. I couldn't face one more angry walk with the dogs. Another day full of frustrated glances at the rapidly diminishing hours left to complete all my responsibilities. And I absolutely, positively could not hand over another 24 hours to mentally bash the long list of people who perpetually piss me off. 

Desperate to step out of this destructive cycle, I pulled up some guided meditation on Spotify and listened. Then I took my walk, which wasn't angry, did yoga without getting mad about how late in the day it already was, and haven't devoted a single minute to scathingly lecture everyone and their mother on the ridiculousness of their overwhelming expectations. No, the sickness in my soul isn't cured, but my day has been amazingly peaceful.

Thanks for joining,

Leah         

Who Believes

In the beginning I just wanted to be believed. I searched high and low for someone to acknowledge I was as sick as I actually was. But nobody knew what to do with me, the girl with some mysterious illness that came and went with the fickleness of the wind. As time passed my life spiraled out of my grasp. Normal activities I took for granted quickly became impossible to accomplish. My social life took the first hit. When the ability to make it to work every day wasn't present, Friday night happy hour became far less relevant. But along with this shift in my activity level went the precious friendships I held so dear. The souls who made those few meaningless hours at a bar the brightest spot in my stressful day. Looking back on this time in my life makes me realize I sat on the sidelines and waved goodbye to the life I once believed would always be mine. 

After a while I needed to be believed. I couldn't cook, do laundry, clean my house, walk my dog or go to work. It didn't take long for my spiral out of control to graduate to a world-class cyclone. As my climb up the corporate ladder morphed into a horrible backslide, I thought the world was reaching its end. Medicine offered no answers as to what was wrong with me, but something so seriously was. The few relationships I had left eroded into a toxic sludge of confusion and misunderstanding. Looking back on this time in my life reveals a woman breaking under the weight of the crucible, the point of no return, the death of my former existence.     

Now I couldn't care less who believes what about me. After nine years with a chronic, invisible, unprovable illness, it's a luxury I can't afford. Any hope for compassion or a pardon from the expectations of normalcy smack me around with such regularity I've given up the expectation. My life is small, my feelings hostile, my anger profound. But sitting deep inside this churning dissatisfaction is a perfect knowledge. I'm a survivor! I will rebuild! I am fashioning a life I never could have conceived of, back when I was a woman who wanted to be believed, who thought sick only happened to the dead or the healed, who had no idea how strong she actually was.

Thanks for joining,

Leah