Wednesday, April 16, 2014

Don't React!

Well, my little tantrum yesterday did nothing to serve my interests whatsoever. All reflecting on every problem in my life, at the same time, accomplished was to freak me out. When freaking out and a flare go hand in hand, I literally turn into Chicken Little. After stewing around in that psychosis for a while, it takes so much extra effort to get myself back on track, I want to scream! I thought my progress in this arena was past such blatant regression. What happened to What Is, Is? Sigh. I guess progress isn't perfection.

I have two verses from Psalms tattooed on the inside of my right forearm. It's the two verses I said while chanting my way around my rosary beads for two days in the hospital. The two days between when the doctors told me I had two strokes and was going to die, because they didn't know how to stop more from coming, and when they told me they found the cause, and I was going to live. In my heart of hearts I credit Psalms 23:4 and 118:17 for saving my life so many times since I permanently marked them on my body, it's not even funny. If even just because in my darkest times I would glance at my outstretched arms, shaking a fist at the sky as I cried out 'Why?,' and be reminded that in my most critical hour, I had hope, and faith. If I had it then, why can't I find it now?

Which leads me to the latest mantra I absolutely must adopt, if I want to move forward in life. Don't react! Because every time I do it screws everything up worst than it already is. The simple truth is no matter how unfair or unjust or wrong I may perceive my reality, the only person who is going to fight for my quality of life, is me. So yes, I'm contemplating tattooing the coveted behavior on the inside of my left forearm. But instead of tiny script, this one might be best in big, Old English lettering that the astronauts on the mission to Mars can see from space. I suppose I should ask my husband if he wants to be married to someone who looks like the guy from Memento before I do, though.

Thanks for joining,
Leah   

Tuesday, April 15, 2014

I Walk The Line

Some days I don't think I will survive this journey. Today is one of those days. Every effort to rebuild my life seems but a weak, cheap attempt to fool myself into believing things can be different. An endeavor to convince myself I have a modicum of control over my reality. A desperate call to somehow keep putting one foot in front of the other, when really it's pointless, because the tightrope I'm traversing just snapped. What cold, painful reality tells me is there's too much water under the bridge to move forward. Because it's not just water, it's swamp sewage sludge up to my neck I have to not only wade through without getting sucked down, but somehow figure out how to lift myself out of, as well. 

So much pain sits in my past. My reality is a precarious joke. It feels like I spent so much time ignoring the fundamentals of life, because they were so screwed up I couldn't even comprehend them, that the damage to my existence is already done. Most days I am not content to sit by and watch what little I have left slide into the rabbit hole of oblivion. But today I feel like railing against it doesn't do a damn bit of good. Accepting the inevitable seems a much better option. Although, however inspired I may feel to jump off a tall building, given my track record, I probably wouldn't even do that correctly.

Perhaps the most daunting awareness I've come to accept is that sometimes, life doesn't work out. Good things don't come to those who wait, everything doesn't happen for a reason and God certainly gives a person more than they can handle. I don't know how to move forward with no assurances! My entitled, middle class upbringing didn't prepare me for such a harsh world. I look around at my life and have no clue how I got here. So here I sit; bitter, angry, confused, bewildered, insecure and still, somehow, walking on that tightrope that just snapped.


Thanks for joining,
Leah      

Wednesday, April 9, 2014

Some Accurate Representation


Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn't listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things I wanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do's. 

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here's my beef; You're $opping up the dough off a disease that isn't technically a disease, because nobody knows what causes it. So it wouldn't hurt too much to throw us patients a bone, would it? Because we're in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I'm well aware of how expensive the process of developing a drug, testing it, and bring it it to market actually is. I'm even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it's because of these reasons I'm actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word "Fibromyalgia" to many people in our society, other than 'strange Aunt Sally who doesn't like to leave her house', you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. 'Fibromyalgia kept me from doing the things I had to do in life.' It would give millions of people some much needed validation.

Thank you for your consideration,
Leah Tyler      

Monday, April 7, 2014

The Habit Of Good Intention

Habits become habits because after a being does something a certain way for a certain while, the brain forms communication synapses to make doing it that way easier. It's a wonderful function of adaptation, unless of course a person is trying to break a bad habit, like quitting smoking or not avoiding their life anymore because reality bites. In those cases, the brain seemingly urges itself to continue partaking of said bad behavior. I've found trying to talk the brain out of doing what the brain wants to do can be an utterly maddening experience.

I'm trying with all my might to actively change my evil ways. After so many years of feeling so awful, and trying to do anything about it making me so crazy, I developed deep neural pathways of avoidance. It was so much easier to get lost in the fiction book I'm writing, than deal with pain in my body so bad it annihilated my entire life. Unfortunately, this coping mechanism ensured that the day I actually did look at my life objectively in the mirror, I hated what I saw. As I struggled to understand my health and what kind of quality I could expect, all I wanted to do was bury my head in the sand and run away screaming, "Change is too hard!" Because really, it was. And still is.

It is extremely important to me to chronicle this phase of my recovery. For so long I kept quiet, believing what I had to say was either too boring, controversial or revealing of my inner person. But I cannot achieve life if fear controls me. And I've found other things have become important to me lately, too. Things like making the bed and putting on makeup. Little things so common and inconsequential to life they became extravagant luxuries when I was oh so sick. Now, I find myself in a position to regain a slim semblance of normalcy, and it feels incredible. However, if I keep ignoring my life and burying my head in the sand of avoidance-land, those things never get done. So I will continue to address my myriad issues by doing, over and over again, the good habits that net me the results I want. Let's just hope one day soon my brain gets the memo.  

Thanks for joining,
Leah          

Wednesday, April 2, 2014

My Quiet Life

When I reached my tipping point last August I was a bona fide mess. In order to survive I had to pull it together and figure out this ridiculous existence I found myself living. The first thing I did was halt all communication with the outside world. I didn't realize it at the time, but my complicated external relationships were directly impeding my ability to care for myself. At first the silence was painful. I was outrageously angry that engaging with the people I knew was so damaging to my self-worth, I simply couldn't do it. How, after everything I've been through, was I still nothing more than a pawn in everybody else's manipulative dramas? 

As the quiet spread through my psyche I redirected, squashed, yelled at and ignored that anger. Simply indulging it was too painful. Replacing my mental negativity with positive thoughts was the only thing that kept me from spiraling into a full-on meltdown. Plenty of tantrums slipped through the cracks of my new foundation, but I kept at it, and eventually gained a little perspective. It was a shocking moment when I realized I could take care of myself, I could own my problems and find ways to make my life better, I could be there for my husband and honor the commitment I'd made to live my life by his side. But that was it. 

I will never be who so many people want me to be. They will not understand my choices or reality, and I don't really care. Instead of beating my head on the same spot against the same wall for the rest of my life, accepting both my reality and other people's right to be who they are, set me free. But I didn't pick up the phone or start engaging again. Clearly I don't know how in a way that doesn't damage me. So here I sit, quietly, living a life I own and am actively improving. Reciprocal relationships aren't something I can do right now. More than a few people can honestly say if you're in a bind, I am not the girl to call. Of course this also means I don't have anyone to call in an emergency, either. Life is nothing if not a two-way street. However, am I the only one who finds it funny how I don't have nearly as many crises when I'm not reeling from one stinging insult or failed attempt to meet expectations after another? In a way, I divorced the presumptions placed on my life. They still exist, they're still out there just waiting to pounce and reclaim me, but finally after eight months they don't control me.

Thanks for joining,
Leah            

Tuesday, April 1, 2014

A Bigger Baby Step

This morning I did something I haven't done in ages, I went to the gym. The ability and desire have been percolating inside me for a while now. When I found myself filling a bag with bottled water in order to do bicep curls at home, I knew the time had come to pick up the torch of something taken from me many years ago. Of course it still took me a couple more months to actually get myself together enough to walk in the door, but today I did.

Although it was a gym I'd never been to before, I decided to skip the tour and generic personal training session and jump in with both feet, all on my own. After all, I weight trained for years before I got sick, and even some years after Fibro set in. It's like riding a bike or having sex, right? You don't really forget how... When I couldn't even find the women's locker room I felt stupid. After asking for directions at the front desk, and still not being able to find the locker room, I felt even stupider. As I circled the space like a vulture searching for a decomposing carcass, all I saw were these really buff people doing all this really intense working-out stuff. I felt like an alien. Certainly everyone was staring at me, laughing and wondering why a thirty-something year old woman looked so lost and scared staring at a barbell. I even went so far as venturing back past that front desk to head towards home. I was intimidated and out of my element. Just walking in the door is progress, right? 

Chickening out was something I did for a long time. I needed the baby steps to rebuild my confidence, to regain my faith in my ability to engage with the outside world. But I decided today, at about the same time I remembered I didn't care what one single person in that gym thought of me, that particular time has passed. Before I made it out the door something rose up inside, and I decided to get over myself. Forgetting about the stupid locker room I couldn't find anyway, I made my way to a bench, pushed play on my headphones and set to work. I was rusty, didn't know what weight to use half the time, and knew my form was nothing short of comical, but somehow I got through it. Now I sit here feeling fluish, wondering what sort of toxic disease junk working-out released into my system, and can already tell how sore I'm going to be from the exercise itself. But I'm also overwhelmingly proud of myself. Because after I was done exercising I miraculously stumbled upon the locker room, walked inside and stepped on the scale. Nobody was more shocked than I to discover, from the height of my obesity after a terrifying tango with high-dose steroids, so much sickness and a slew of Fibro drugs, I've lost 80 lbs.

Thanks for joining,
Leah 

Wednesday, March 26, 2014

The Devil & The Angel

The internal battle waging war inside me right now is insane! I literally have a devil on one shoulder and an angel on the other. The angel tells me to ignore the immediacy of my problems. She tells me to go ahead with my plan of action, don't skip exercising because I'm flaring, go ahead and make the bed and do the dishes, because it's my job and has to get done anyway. The devil, on the other hand, is telling me to go buy a 6-pack of Dos Equis and sit by the pool drowning my sorrows, or eat a lot of greasy food, or basically indulge in anything sufficient enough to distract myself from the relatively minor molehill I've turned into a mountain.

Sigh. My sleep-exercise conundrum has caught up with me. While I'm getting to bed at a normal time these days, which in and of itself is a miracle, I'm not sleeping enough. This rejuvenates the viral symptoms I spent the last year caught in the grip of. My head hurts, throat and sinuses are scratchy, inside of my mouth shredded, face riddled with boils, body aching and is extra Fibro-sore, to boot. But that's nothing compared to what these flares do to my mood! I get so angry and infuriated sometimes I wonder if me, myself and I are indeed the devil sitting on my shoulder and whispering self-destructive ideas into my ear.     

It's such a tightrope, trying to rebuild my life. Discipline is my best friend these days, but too much strict adherence to the theoretical life I'm working hard to reclaim can indeed make me sicker. So when do I ignore the flare, and when do I push through? If I coddled myself every time I felt bad I would've spent the last nine years in bed. Literally. In the beginning pushing myself always resulted in a backlash of epic proportions, but these days it's how I'm making progress. Luckily tapping all this out on the keyboard has served to calm me down and clear my head. I went ahead and made my coffee, deciding to skip the beer for now, and instead focus on something I like to do, which means I'll spend the day writing my book. No exercise, the bed's not made and the dishes are still staring at me, but it's a compromise I think I can live with.

Thanks for joining,
Leah         

Monday, March 24, 2014

Trauma & Trepidation

Last week when I found myself sitting on my kitchen floor organizing my cleaning products to avoid doing it, I realized I have a pretty serious problem. Given my poor housekeeping skills the last thing I care about is how Comet and Draino hang-out under my sink. But the thought of doing what I was blatantly avoiding filled me with dread. As I shoved the box of cleaners under the sink I knew the moment was upon me. My heart started pounding and sweat broke out on my forehead. When I walked over to my computer I felt dizzy and nauseous. Intense doom invaded every cell of my body. The certainty of total global annihilation made me want to fling myself off my balcony to avoid such an ugly demise.

I wish I was exaggerating, but I'm not. After enduring the financial devastation of five years of Fibro, followed by four years of not working, this is what happens when I try to pay the bills. With a sinking heart I realized I was dealing with a physiological response to an emotional reaction, caused by trauma. So now not only does going to the doctor invade my soul with so much fear and trepidation I act like a crazy lady, writing the rent check does, too. Is there no end to my problems? I mean come on now, it's been a struggle, but I never went homeless or starved. Sure, we lived outside our means for many years, and it almost took us down, but I do believe the worst is behind me. At least I thought my conscious mind did. Clearly I was mistaken.

The amount of real life I've avoided facing as a coping mechanism is astounding. Only now as I'm slowly able to add more responsibility back onto my plate do I realize how far out of control life got. I remember the early years of this illness, how I sat there and watched the dishes, laundry and life pile up around me, too sick to stand up and do anything about it. My type-A wanted to kill me! Learning how to ignore her ranting demands was a huge challenge. Somehow we co-existed, and I now find myself in a position to reclaim some of my lost ground. So today I faced the same heart-pounding, gut-wrenching reaction, and even managed to spend an hour laying out at the pool to avoid my dreaded responsibility. But when I came inside I poured a big glass of water, threw all the paperwork into a pile in the middle of the living room and took a bite out of my fear. And I survived. I'll count that as progress.

Thanks for joining,
Leah

Thursday, March 20, 2014

Please Go To Sleep

Sleep is both my nemesis and best friend. I had absolutely no idea something as simple as falling asleep at night would become the bane of my existence before I got sick. We've settled into a rather symbiotic existence at this point, but the amount of work it took me to get here is astounding. A rather enlightening experience on Tuesday night reminded me how awful not sleeping is, and what a mess my life quickly becomes without it.

I shut the computer off and went to bed at 2 AM, like a good girl, even though my mind was racing and I was anything but tired. After an hour of laying there amping myself up I got up, figuring trying to force my brain to shut down was having the opposite affect. Another hour and I wasn't any better off, but at this point it's 4 AM and my visions of a productive Wednesday are rapidly disintegrating before my eyes. So I got back in bed and tried to force myself to sleep. After another hour passes I'm so exhausted-hyper that anxiety is kicking in. Trying to sleep with anxious vibrations coursing through my limbs is a joke, but I didn't really know what to do. I hadn't had insomnia like that in quite some time and was, of course, terrified it was sneaking back into my life. I know full well if I can't sleep I can't have anything resembling a quality existence.

At 5 AM a bright idea popped into that racing brain of mine, and I got up to make sure I had indeed taken my arsenal of sleep aids the night before. Low and behold, I hadn't! While taking enough pills to knock out an elephant at five in the morning isn't my idea of a good time, I was crazy relieved there was an actual explanation for my viscous attack of sleeplessness. I took my meds and within a half hour was out like a toddler after a day at the beach.

While all of this insanity had me jumping in and out of bed I remembered the acute misery sleep disruption brought to my life in the beginning. See back then I had to work the next day, so there was no taking sleep meds at 5 AM and switching off the alarm. There was only me, exhausted, trudging through a day at work and praying for my shift to end. More often than not, one night of insomnia, followed by a hard days work, would kick a cycle into gear that wouldn't end for days. After four or five nights of not sleeping I literally became too exhausted to knock out. My freakin' brain wouldn't shut off, and it was only a matter time before I collapsed from utter debilitation because of course, not sleeping made the pain so much worse. Not sleeping made everything worse! This little reminder on Tuesday night was yet one more experience to show me how far I've come, and how passionately I intend to hang on to my progress. 

Thanks for joining,
Leah 

Tuesday, March 18, 2014

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