Life, Liberty And The Pursuit Of Happiness

Last week we celebrated the 237th anniversary of American independence. For some odd reason a key phrase in the preamble of our constitution kept reverberating around my mind. Life, liberty and the pursuit of happiness. Actually it was more 'the pursuit of happiness' part I kept dwelling on. Like it was a foreign concept I just learned existed. With a shock of awareness I realized that's exactly what happened. Because I forgot about it. See the pursuit of happiness is a frivolous concept when your basic needs aren't met. It is only after sleep, shelter, safety and food are secured that a being can advance onto the next stages of societal engagement. Unfortunately getting horribly sick when every doctor told me I should be completely healthy violated my safety in a major way. My inability to work or care for myself threatened my procurement of shelter and food. And the illness itself robbed me of my sleep. No wonder I wasn't working towards happy, I was just trying to survive!

Yet it wasn't always like this. In fact after Fibro devastated my life I fought back hard to get the beast managed so I could begin to rebuild my existence. Sure it looked a lot different than before, but it was still good. I accepted, adapted and allowed myself to grow into my new set of circumstances. Funny thing about life, I've found, is one never knows what the next step will bring. My next step was two drastically life threatening strokes and six months of high-dose steroids to treat them. And that is where my happiness went. 

Prednisone gave me the energy and lack of pain I had pre-fibro. It was glorious! For the first week. Then "roid rages" took over and I ballooned into the Pillsbury Dough-girl. Since then I have been miserably fighting my way back to the ecstasy of that first week on legalized crack with the tunnel vision of a warrior. Or just to be who I was before I got sick. To have the same capabilities, choices and possibilities. The little taste of healthy I got undid years of therapy, acceptance and meditation. But I refuse to allow my life to be defined as a reactionary victim. I'm actually glad a day of drunken barbecues and exploding fireworks reminded me there is some much needed happiness missing from my life. Everything doesn't have to be perfect to find it again. All that really matters is I start looking.

Thanks for joining,

Leah   

The World Suffers

Perhaps the biggest challenge I've faced over the last year with Fibromyalgia concerns sleep. At times it's become so out of control I'd watch the sky slowly brighten with dawn as tears of utter frustration streamed down my face. Unable to do much more than pop more pills and try to ignore the mounting anxiety claiming my psyche. The popping pills thing didn't work, though. I'd either be too dulled out to do much of anything the next day or sleep until two o'clock in the afternoon. Certainly not moving towards the illusive forward progress of life. But not sleeping leaves me unable to function, too, pinning me into a nice little box of my own insanity. 

So I decided to institute my own version of sleep hygiene. Staying up all hours of the night writing left me wired and panicked. Sleeping all day made me unable to participate in life. And procrastinating all evening on doing the dishes and packing my husband's lunch insured if I did get tired, I'd still have to get up and do work. None of that was helping what had become my most important cause. So I turned off the computer, disciplined myself to do my chores right after my husband went to bed and started learning about the world. Over the last few months I've watched a few dozen documentaries. Or maybe a hundred. As much as I've learned about history, conspiracy theories and religion I actually am learning far more about myself. I always knew I liked conspiracy theories and religion. I did not, however, realize I was an apt and rabid history and science buff.

As my knowledge and worldview expanded some very important truths were revealed to me. Over the span of our homo sapien existence being human pretty much...sucks. War, slavery, annihilation and genocide are just a few of the atrocities our species commits against itself with sweeping regularity. Dictators, emperors, kings, czars and shahs have been merciless in their efforts to conquer, consume and claim both land and people. And don't even get me started on the dark ages, I just won't be able to stop! Then there is good ol' mother nature herself, and the way her disasters and destruction have shaped human existence. 

Learning about so many things I didn't pay a lick of attention to in school opened up my mind. Not only was I able to get drowsy and actually go to bed and fall asleep, my compassion and awareness of the world we live in grew. Comprehending how small I am in the grand scheme made me feel better. While I may suffer from a strange illness doctors can't explain or cure, my ancestors have survived worse. I have a comfortable bed to climb into at night, machines to wash my clothes and dishes and an automobile to drive where I need to go. These are not necessities to be taken for granted, for they make my life far better than my great-grandmother's great-great-grandmother's. Yet I do. So I guess the gist is, everyone suffers, it's just a matter of how much, why, and what on earth you do about it. But all this awareness and empathy is useless when I watch a bunch of divas tantrum and cat-fight as they drive their Bentleys and try and yell at each other through Botox-frozen faces. So I've been avoiding The Real Housewives like the Bubonic Plague. 

Thanks for joining,

Leah

Just Another Day...

Last week I lowered my life-changing expectations to what I felt was moderate. The goal was to maintain some of the good habits I tried to adapt with sweeping precision a few weeks before. I tried, I really did, to hang in there. Made the bed every day, got up early to exercise a couple of times, cooked dinner every night. Things in my right mind I believe should already be happening. By Thursday I was a complete wreck. I couldn't sleep the night before so didn't wake up until 9am. It was 91 degrees outside. Thinking I could sneak in a quick walk before the heat became stifling we scurried around the block. I even came home and did yoga. Boy was I draggin', but when I went to bathe I couldn't because the water had been shut off. A broken pipe sorely lacking in prior notice. So I kinda freaked out and became negative and cross. I mean I was already on the border, but this pushed me into full-on grouchy.

After brushing my teeth and washing my face with bottled water I attempted to leave for a doctor appointment. But my husband took my car keys to work with him so I couldn't. Now I had two choices, cry or laugh. I wailed. Wah-wha-wah. I contemplated laughing, I really did, but just couldn't bring myself to do it. He raced home to give me the keys, luckily only working a few miles from where we live. And of course, because this is just the kind of day it is, navigation had me going in circles around the doctors office for a good ten minutes. I have absolutely no idea how I made my appointment on time. It would have been SO helpful had they put their name on the door! Obviously at this point I realize it's me, not the world at large. My bad mood radiated energy force fields so strong it turned into a bad day!

I finally found the space to laugh and cheerfully told the nurse I was at the dermatologist so they could tell me I don't have skin cancer on a mysterious spot on my ear. And I'll be darned, I don't! Thank God, I finally had something good to hang onto. But by the time I got home I felt terrible. My negativity had been diffused, but good ol' Fibro was in full control. That predictable broad is never late to the party, is she? So here I sit three days later starting to come out of the monster flare that made me hurt so bad I couldn't wear a bra. Reminding myself how hard change is, how hard existing is. But improving my life is possible. Slow and hard, everything just takes four times as long as anyone thinks it should. Especially me.

Thanks for joining,
Leah

Blood Flow To My Palms?

Hearken the good tidings my friends, they have found the cause of Fibromyalgia! With rapt interest I poured over the scientific studies and research papers to try and understand what had been discovered. Most of them seemed to start with the disclaimer that a large portion of the medical community believe Fibromyalgia is psychosomatic. Until now. I'm not going to lie, that pissed me off pretty good. Like now that they "know" there is something real going on they can admit they thought we were all a bunch of loonies inflicting sick on ourselves. But I suppose I knew that would happen... I am still excited to find out what exactly descended on my reality like a hell-storm eight years ago and stole my life so I kept reading. Turns out it all goes back to...the blood vessels in my palms? Huh? Are you kidding me? Blood vessels in my hands are responsible for fatigue, insomnia, a depressed immune system and pain so profound I wanted to die? I'm sorry, but it seemed so unbelievably trivial I couldn't understand why everyone was making such a glorious fuss. So I kept reading. 

Slowly it started to make sense. The body is a system dependent on many different parts to complete it's basic duty, living. When one of these parts malfunctions the sky is the limit on how many other components of the system are affected. That is precisely what is going on. Basically artery shunts in the hands of Fibro patients have an "extremely excessive" or "staggering amount" of sensory fibers. This excess interferes with the regulation of blood flow throughout the body, especially to the deep tissues and muscles. Amazingly enough "this mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation in Fibromyalgia patients. This, in turn, could contribute to the hyperactivity in the brain," which may lead to insomnia. Medical Daily

Voila! There you have it. Except...I now have even more questions than I did before. Like how did I get this? Why? Is it genetic, trauma induced, related to damage to the CNS from other illnesses or infections? What can I do about it? Is there a treatment or cure? When will they begin testing all patients? What about the blood test showing an immune dysregulation? Are they compatible, related discoveries or do they contradict each other? Is this the true cause of my illness, or does something else cause this? Does this account for my obvious immune deficiency? The questions are endless and I don't know where to get answers. I already know far more about this condition than all my doctors combined. As a skeptic of modern medicine I believe it will still be years before anything conclusive that actually changes the reality of living with this illness for patients comes about. And years beyond that for medical doctors in practice to become hip to this change from psychosomatic to the palm of my hand. Nevertheless this is a big one for us, fellow-Fibro patients. A wonderful step forward in legitimizing an illness those who suffer from already know is painfully real.

Thanks for joining,

Leah

Sources:

Integrated Tissue Dynamics      

Pain Medicine Journal

Medical Daily

The Pain Of Progress

It hit. The colossal flare I knew in the back of my mind I was marching toward but somehow thought a positive attitude could prevent. See I did it again. I've done it lots of times. Convinced myself my behavior causes direct consequence to my health. To a small degree it does, but in actuality it's resoundingly the other way around. I do think it's normal to question "living sick" every so often by challenging the status quo. Normal, even if the outcome is terribly devastating to any sense of progress a person tries to make. So here I sit all pissed off and bent out of shape I because I am being horribly punished for...trying to improve my life.

The absurdity makes me so angry at this stage in my journey. Real, normal, healthy life is just out of my grasp, a feather's whisper away from my reach. It mine as well be miles, though. Closing the gap on living sick and living like a human being with chronic illness is a long and arduous road. Some days I don't think I can possibly take another step. Today is one of those days.

But just like the need to ruffle myself up and polish both my dining room table and toenails to perfection passes, this misery will wane too. Nurturing myself back to balance will nullify a significant amount of the progress I made on my road to self-improvement. Once I balance out again I will be able to pick up a few feet of the mile long progress I prayed was ahead of me. And I'll keep going. I always do. I figure at the rate I'm going I just might have this Fibromyalgia thing down by the time I'm 92.

Thanks for joining,

Leah    

Crisis Of Purpose

A few weeks back I bottomed out psychologically. My inner Chicken Little ran around ranting and raving like the sky was falling. Any sense of purpose or progress in my life vacated my reality. In fact I didn't know who I was, what I was doing or where I was going. And certainly couldn't make sense out of where I'd been. Misery soaked my aura in radiating beams of destruction. Slicing through the air like a million lightsabers clearing my path to ruin. I was absolutely certain I would never be able to write another word in my entire life. I got mad I wasn't back in school or working. Simply not contributing to the household financially made me feel like the biggest loser in the world. And the fact that most afternoons found me in my sweats, hair pulled back in an elastic with an unwashed face and unbrushed teeth, well it was embarrassing. In the simplest terms my entire existence...offended me.

The back of my mind screamed, "This too shall pass!" but I didn't really care or believe it. Trying to count my blessings or focus on the positive seemed utterly frivolous. All I felt was profound disappointment and anger. How did I work so hard to get my life back from umpteen illnesses only to be living...like this? Did I have the strength to keep on this road, believing in a better tomorrow with all my might? Or was I being a delusional ninny? A significant amount of philosophizing and bargaining rattled around my brain. Finally my hormones and chemicals and viral surge sparking this disillusionment settled down enough for me to find a speck of light in the far off distance and start to march towards it. Luckily the more determined I became to reduce my misery, the bigger the light grew until it was shining brightly over my culpability in this whole mess.

I realized I do have job. One I don't like, didn't want and wasn't raised to find value or satisfaction in. And boy was I doing a terrible job at it! So Leah the housewife recognized she needed to buck up and expect a little more from herself, and a funny thing happened when she did. I realized there is actually immense pride to be taken in creating and maintaining a comfortable and ordered home. I was just so damn sick for so damn long the absolute last thing I cared about were dust bunnies and spots on my carpet. I've worked very hard to balance my life and get my pain under control. Cooking and cleaning no longer evoke such agony I want to fling myself off a steep cliff. The time had come to shift my expectations and challenge myself to forward progress. So I cleaned my house.

But all that happened after I got my slovenly ass off the sofa and into the shower. It seemed stupid the first few days, putting on makeup and doing my hair to just sit at home by myself. Not too many days in I realized the immense value in caring about my appearance, though. When I look better I feel better. I am prepared to actually leave my house and go live life if the opportunity presents itself, and it did. A friend called mid-morning to see if I wanted to meet for lunch and I was actually able to say yes! So onward I march. My house a little cleaner, my blush a little brighter, my hope that life with this illness can actually improve a little bigger.

Thanks for joining,
Leah