It's An Instagram World

A couple of my husband's young, hip co-workers informed him of a crucial shift in the "coolness" of social media. Basically, Facebook is dead and Instagram is where it's at. I filed this information in the way back recesses of my brain, and went about my life. The love/hate relationship I hold with Facebook hardly inspired me to invest my time and energy in a whole new facet of internet networking. Then I got bored one night a few weeks back, and decided I wanted to be young, hip and cool. So I started an Instagram account. After a few days of trolling through random pictures and catchy slogans I got it. For a girl who can hardly stand Facebook, and is utterly done with being bitched out for every innocuous comment I had the audacity to post, Instagram is an inherently more positive and rewarding experience. Within a matter of days I was hooked.

I decided not to use this new forum as a way to promote Fibromyalgia awareness or keep up with friends and family, although those are components I'm enjoying. Instead I decided to use Instagram as a tool to discover myself. Or rediscover myself. Or find myself. Or do something with me, exactly what I'm still not sure. The last time I was this preoccupied with myself I was in my late twenties and hadn't gotten sick yet. Then life started bitch-slapping me with epic problems, and everything quickly became about pure survival. I don't know the future but so far, I've survived! But my life's a shattered mess I'm working tirelessly to put back together again. After four years of smearing my failures and heartache all over Facebook, I'm ready to turn over a new leaf. Enter leahtylerthewriter on Instagram. 

Tapping into the younger generation's narcissistic, self-obsessed mindset is kicking me out of my comfort zone. Painfully. Initially I wondered if my life was even interesting enough to bother photographing and posting. Realizing it probably wasn't, and then doing it anyway, has been good for me. It's forcing me to see the beauty in my daily routine. Forcing me to challenge my perception of myself as a reclusive shut in with no life. And it's forcing me to grow. Exponentially. I'm sharing my journey in a totally different way. I'm focused on health, not sickness. It's about what I can do, not what I can't. What I do have, not what I don't. For the first time my Fibro friends and real world relationships are all collected under one account. I've even gotten comfortable with taking a selfie every day and posting it, although it still feels attention-seeking and weird. 

But I know if I want to get my book published and educate the masses about what it's like to live with this wretched illness, I have to get comfortable with self-promotion, as shameless as it may seem right now. I have to get to know myself again, and become comfortable in my own skin. And I need to understand how what I put out there is perceived. So far I've learned I need to cut about four inches off my stringy, raggedy hair I should wash more than once a week, and may or may not have a lazy eye. But in good light my wrinkles don't look as bad, either. So I'm sharing my life. All my conspiracy-theory health-nut practices. How much joy Yorkie and Porkie bring to my days. How sarcasm and being positive are the only way I survive. And I'm trying to answer the question everyone keeps asking me. What exactly did I do to get so much better?

Thanks for joining,

Leah       

Nothing Safe Left To Say

When I started this blog nobody read it. I wrote for four or five months without giving the link to a single soul. Just publishing it alone was an outrageously ambitious endeavor for a girl as private as I. The thought of anybody actually reading my inner agony sitting here on the world wide web was utterly mortifying. Then I almost died, and the treatment to cure my disease consisted of legalized meth, AKA high-dose Prednisone. So high as a crack-head I set out to let anyone who was interested know just how horrible Fibromyalgia was, a disease I suffered from for the previous five years and was struggling to rebuild my life around. Woo hoo, was I high on the fellowship of social media! The feedback was incredible, and planted an ember of passion in my soul to do something about the horrible reality far too many Fibromyalgia patients endure. By the time I was coming off the dragon-drug six months later people were reading. Clearly I started something, but exactly what I still don't understand. It didn't really matter, however, seeing as the messiest phase of my last ten years was just about to begin.

I had no idea how much damage my brain sustained. Once again looking like a healthy 34 year-old fooled my doctors into believing I survived two fatal strokes with hardly a scratch. Nor did I realize I was on so many medications I literally couldn't see straight. Day after day I got a little better and a little worse. What a devil's dance we tangoed into the starry night, my elusive friends health, sanity and me! Four years later I know I won, but at no point in my journey was that a guarantee. All the while I blogged, or didn't. I engaged in intense levels of personal entanglement with this disease and its online community. My keyboard warrior roared to life and nobody could shut her up! Until a member of my own family began cyber-stalking me, and twisting my words to discredit me. People were still reading, but I no longer knew who they were. All I knew was a fair amount of Fibromyalgia patients hated me for not representing their experience accurately. Eventually all the harassment became so burdensome the flesh and blood of my words began conforming to avoid controversy. The hatred, outrage and anger in my heart swelled, but I didn't have anywhere to put it. So I turned it on myself.   

Despite my stale and tired words people are still reading. Is saying thank you a big enough gesture, knowing I wouldn't have kept going if that hit counter stopped spinning? My comfort with revealing myself certainly reached its peak during my steroid days. Since then the panic in my heart surges a little more each time I think of how much of myself I left sloppily laying around this place called cyberspace. Once again another crucible envelops me. I simply cannot move forward in my life and continue to spew safety. The facade is pointless. Fibromyalgia is raw, awful, fucked up and merciless. While caught in its clutches I have done awful things and behaved in absurd ways. Recognizing that reality doesn't mean there isn't hope, a better tomorrow or a way to enjoy living again. If I'm going to continue to write this blog I must embrace my heartache, let it go, and speak the words my heart recognizes as truth. Those words are far from safe.

Thanks for joining,

Leah