Wednesday, September 26, 2012

The Scathing Memory

While organizing a box of old paperwork I ran across a fat stack of medical records. The experience was so monumental it took me two days to even have a recognizable feeling about the whole thing. At the time all I could do was stare at what was before me in awe. I remembered making those complex charts of all my supplements, lists of what to take and how often and if I should take it with food or on an empty stomach or not within three hours of another supplement with instructions just as complicated. There was a folder to flip through with tabs for the months and within each month years of charts and graphs and descriptive script chronicling every ping, pang and stab of pain I felt. Each migraine, day with an irritable stomach, night I was up till 3AM because my brain just would not shut off. Paragraph after paragraph instructing myself to cheer up and quit pouting, stiffen my quivering upper lip and believe in the power of a positive mental attitude, when all I wanted to do was find a quiet dark corner and curl up into a ball and die. And what I spent! Oh my God I could have saved a failing first-world nation on what I spent to get "managed." Well practically.

Staring at this paperwork that was the remnants of the, pardon my profanity, fucking nightmare CFS/ME and Fibromyalgia inflicted on my life, I felt nothing. Numb. I remembered all of it, well most of it, but couldn't access what it felt like. Not the complexity of desperation and denial and anger and sheer panic I felt as everything bottomed out from underneath me. Like poor Alice falling down the looking glass, racing past the smiling faces of friends no more and the career I was supposed to have, babies I should have birthed and life I thought I would live. I stared at this all in awe but couldn't feel the gaping hole of ache in my heart. It took me two whole days to do that, remember what it felt like to walk that dark, lonely and painful road. Truly reflect on what a complete horror it was to get those doctors notes so critical to getting those state disability checks that were the only way I could pick myself up and start to get better. 

It took two whole days, and when those feelings hit they hit hard. Knocked me on my ass, the power of the anger this whole experience created. I thought I'd dealt with it but life is like nothing if not an onion. Peel back one layer and there is always another underneath waiting to make you cry. I finally saw the whole thing with the crystal clear 20/20 of hindsight. I was robbed! Of my life, my future, my opportunity. No that does not mean my life is still not worthwhile, or maybe even better off in the long run. But recognizing the past for what it is doesn't invalidate my present, either. Life seems to be gearing me up for something, because sure as one domino topples another I am being smacked repetitively in the face with acute and scathing memories of the worst of this illness. Flashes of pure utter living hell and how impossibly hard it was to drag myself out of the gutter. It's pissing me off something fierce and reminding me of the conviction I stood in when I decided to make my life about Fibromyalgia awareness. Getting sick with a non-terminal illness shouldn't annihilate this many patient's lives, it just shouldn't. And if it's the last thing I do on this torturous green earth I am going to do something about it.

Thanks for joining,

Monday, September 24, 2012

I Can't Do Two Things At Once

I sit here limp and panting. My nerves are ramped up and over-stimulated. There is a slightly frantic undercurrent in the air and as I look around the room waves of energy snap back at me. You are never gonna believe the grand old party I had getting here! This is what happened. I am in the process of organizing every darn scrap of paper I've been carrying around and collecting since I first filed a tax return in 1992. It's a lot. Last night I started the job and today sat for four hours in front of the TV sorting more scraps of tree pulp than anyone should look at in a day. It's hard work, trying to decide what to keep, shred, trash or do something about. Well as I am working I can feel my back start to ache and muscles begin to tense up. But I keep going. The longer I work and the more uncomfortable I become the more my nerves buzz to the point I suddenly cannot make a decision and my concentration simply will not split. Sensory meltdown is blowing trumpets at the gate to hearken it's arrival! 

I get up for some water and while I am standing at the kitchen sink the TV is blaring. My mind is stuffed full of insurance policies and car registrations and past employment records, the crap I have been looking at for the last four hours. Water is pouring from the sink into the pitcher. The ceiling fan is whirling. Then my husband asks me a question. And that's when it happens. EXPLODE! "Don't ask me a question! I cannot do four things at once my brain is melting!" I scream. "The TV is one," I yell and point at Elvira on Oddities tying a necklace of human teeth around her neck. "The water is two. The fan is three and now you want me to listen to you, think about what you are saying and then give a coherent answer? That's five!" I holler at the dear guy who just wanted to know where he could put some stuff in the office closet.

Yes quite a sensory meltdown party I had. It's nuts. I don't know many people who understand what that is like, other than my Fibro friends. I get the jokes, the wait until you are my age snickers when I complain about it, and it takes a lot to not grab the person into a vice-gripped headlock and give them a nugie! It's not the same, no not at all, to darn near have an anxiety attack over making a stupid decision like if I should defrost the chicken or ground turkey for tomorrow night's dinner. But people don't get it. How, in this day and age, can a healthy and productive member of society comprehend all it takes to truly filter out the barrage of things that are happening at any given moment? Things they ignore or don't think about are like an individual celebration all on its own to us. So there you have it, I was sorting paperwork and watching TV and the sedate environment of my living room sent me into a spiral of sensory overdrive. The home that houses two adults and two small dogs. Jeez, can you even imagine how much fun I would have on a street corner in New York City?

Thanks for joining,

Friday, September 21, 2012

All In

I forgot what I was doing. Last night I remembered. See my husband and I are trying to execute some life changes and are at an impasse. We really can't proceed without my income. We've hacked it up one side and down the other and the alternative is so damn undesirable it's pretty much become a non-option. Currently I sit in that wonderful paradox so many of us find ourselves in. At the age of 36 I am disabled enough to not be employable in my field but not disabled enough to be disabled. Which means starting over, which I did two years ago when I quit my makeup artist job and started this blog. But what have I done with it?

The blog a lot, but I mean the fire. The passion. The conviction that God saved me from death to do good work in the world. Because laying in that hospital bed knowing it was no small miracle I was ever gonna see the light of day again, well that changes a person. Their are offers that are made, deals that are bet. I made a promise to stop living for myself and do something to help the suffering in the world. I was living on time that was not my own, if I were to survive, so devoting it to service made all the sense in the world. If somehow I missed the point six months on high dose steroids drove it home because in that time I whipped up a frenzy of an awareness campaign and started The Fun House on Facebook and pretty much devoted my entire life to Fibromyalgia awareness.

Ha ha ha, wanna make God laugh make a plan? Isn't that what they say? Well then I came off Prednisone. There are hundreds of blogs chronicling the misery of that comeback. It ripped me off, chewed me up and spit me out. Fibro did, and the fissured synapses of my brain from the strokes made it so much worse. But one day not too long past I realized I was healing. Holy shazam, I could go to the post office again without crying when the mean postal lady yelled at me! Oh that was a good day indeed. However my conviction to change the world, or at least the face of Fibro awareness, was long lost in the background. Buried beneath a pile of woe is me and anger that I had no certainty from one minute to the next if I was going to have to stare that grim reaper in the face again.

Last night I cried to my husband and asked him to remind me what my intention was when I started this whole thing. Why did I give up my life to this cause? What have I been working so hard for these last two years? Suddenly I remembered what it felt like lying on that gurney, pushed around from procedure to scan to lab, praying with all my might this wasn't the end for me. I remembered why I made the promises I did, how I needed to give back for the blessing of more time with those I love. And how I was going to stop at nothing to help suffering in the world in whatever way made possible. "If it can be done I have a responsibility to do it," I heard the words I repeated a thousand times reverberate around my head. So last night I found my conviction, my fire, my passion. Last night I remembered what I was doing. I'm throwing all my chips in and bringing change to our cause in whatever way made possible. I had to pump the brakes for a while there, and really stumbled off course, but by the grace of God go I. And after all this was done and I sat there with my heart once again full of purpose I couldn't help but wonder how all this happened to a girl who really really didn't want to get out of bed when she opened her eyes yesterday morning.

Thanks for joining,

Tuesday, September 18, 2012

Like Sand Through The Hourglass...

I sit here watching General Hospital crying. Now this is not entirely out of character considering we spend nearly an hour together five days a week and have for almost a decade. That is no small investment in time. I watch the characters go through a catastrophic nightmare about every six weeks, with lots of far-fetched fluff and long camera pans into the distance in between. It's easy to cry when tragedy strikes, especially considering I get fired up over my own woes watching the twists and turns of their dramatized tribulations. While mine are not nearly as horrific as the soap opera inflicts, and I don't return back into a healthy rich woman with as many lovers as enemies between incidents before chaos strikes again, oh yes I will still say I am a sucker. One who usually cries when someone is married, born, falls in love, dies or survives.

So what has a misty-eyed flared-up isolation-deprived lass such as myself all upset? Because they are rejoicing. And I'm not really upset, I want to join them. They are celebrating having just survived near-extinction from a neurotoxin leaked into the town's water supply. Seriously. And as they dance around in the rain I cry happy tears because it dawns on me the only reason to work so hard to survive trauma is to celebrate it. Celebrate surviving it. And celebrate the life that is ours still, no matter what we endure. Because every day is a victory when sick, it just is. 

Thanks for joining,

Monday, September 10, 2012

It's Her Party I'll Cry If I Want To

I am shattered, wrecked, in shambles. The word flare doesn't even begin to cover it. See I was given an opportunity to keep up with a few of the more capable members of my family and wound up looking like a colossal loser. A couple ladies joined efforts to throw my mother a birthday party and were kind enough to include me in the roster of hostess'. I suppose they thought they were asking an equal, or even someone simply not as energetic as they are, but instead they got me. However good I thought I was doing, whatever triumph I had over Fibro, any illusion of being able to, just for one night, be the me I was before I became sick me, oh it's over. Crushed into the dust beneath a pair of dangerously high platformed wedges I stupidly thought I could run around in all night. I haven't felt this disabled, incapable or just plain foolish in ages. 

This entire circumstance was slated against me from the word go. Technically I should have declined to participate and just gone as a guest. But it was my mom's birthday party. In my heart of hearts I just couldn't opt out. Hell, I wish I could have thrown her the party all by myself! I really kept my contribution to a manageable level, I thought. And then came the night before the party when I went to three different grocery stores and was up until 3AM rollings beef pigs into Pillsbury blankets. And the morning where I raced around at top speed (another two stores) doing all the last minute things I hadn't done before. Then there was all the work of setting up the party. It took me all of one hour of hanging streamers and blowing up balloons before I passed the point of fibro safety. That razors edge where if you stop everything you are doing right at that very instant and sit for a day you might be okay, able to avoid a flare. No of course I kept going, and four hours later the party started. Barely two hours into the festivities I was lurching around the kitchen like a zombie searching for my dirty cookie sheets in tears. My sensory overload felt like I was at a rave on some horrible psychedelic drug that made you hurt really bad too. I didn't know where I was, what I was doing, what was going on or how to figure any of it out. And because of the darn shoes I had on I couldn't have gotten there even if I did! Thank God for my very understanding husband who got me up and out of there without delay the second I said "I gotta go." 

But I left before pictures, well before cake. Right when things were just getting going. And I was bitter about it, oh you betcha. Mad I couldn't stay, furious at the hell I knew was in store for me, the price I was destined to pay. Upset because I was incapable of contributing my fair share. My family may have been irritated I was lazy, or my paranoia made me feel that way. They may have thought I was dramatizing my situation, or my guilt made me think they did. Does it really matter? Because at the end of the day I simply didn't measure up in a world of people who do. And it makes me never want to be around them again because I feel the gap between their comprehension and my reality just can't be bridged. Some gaps are just too big. Ultimately I must say I am the one who betrayed myself. I allowed the situation to fly completely out of my control. I didn't do what I should have done which is decline to co-host, but I really didn't want to be a bad daughter, either! It's kinda absurd now, with the wonderful vision of hindsight, that I just thought I could give it the ol' college try and the effort required to pull it off would be mine to spare. So here I sit bewildered, confused, gun-shy and traumatized, wondering once again where I fit into a world of healthy expectation. I don't know when I am going to feel human again. All I can say is hopefully in time for my husband's birthday on Friday...

Thanks for joining,

Friday, September 7, 2012

Let It Roll...

I am an uptight control freak. As much as I try to relax and let go that's just who I am. I spent years self-medicating it away, hoping I could dull the intense distraction of noticing every little thing that happens. Figuring maybe if I numbed myself enough I could find peace, but it didn't work. They say it's the type "A" personality who are prone to getting Fibromyalgia. The over-achievers, the doers, the perfectionists, the driven. I certainly fall into that category. I believe now if I'd listened to my body and not pushed through CFS/ME I would not have developed Fibromyalgia. But that's not how I was raised, isn't the society we live in and simply doesn't pay the bills! I see many of you out there doubted by those you love the most who have no grasp, no concept of what you are going through. They tell you to tough it out, get up off the couch and go live your life, exercise the pain away, go focus on something else, and it breaks my heart! I want to grab them by the shoulders and shake some sense into them. Fibromyalgia hurts so freakin' bad you really can't believe it unless you have it, and it's not just going to go away. It is real and until it's addressed it pounds the body relentlessly and soaks up every thought every minute of  every hour of every day. It is a real physical condition that must be treated or will continue to get worse.

One of the hardest lessons learned throughout my journey with chronic illness was how to let go, be it simple house cleaning or complicated life isues. How to let stuff roll off my back, not internalize stress and anger and frustration because the consequence would be immediate and catastrophic to my mental and physical well being. I would get sick in a matter of minutes, feverish, sore throat, throbbing sinuses, aching body. There were many injustices that happened when I was too sick to fight I had to let go because the ramifications on my health were so severe. There was a car accident where a man ran a stop sign and plowed into us and then lied and said WE ran the stop sign. Oh that one was hard! There was the hospital bill I was paying down and with no warning whatsoever was sent to collections. Then there was my job, cutting my hours and squeezing me into a nighttime position after the years of profitable management I gave them. But I had to let that one go, too. There were others I had to consciously decide to release back into the universe and trust that everything works itself out in the end. I was one sick woman and simply couldn't take it on and recover from this illness at the same time. 

Fibromyalgia has softened me. It has reduced my expectations and presumptions of life. It has taught me how to laugh at the absurdly painful and truly not sweat the small stuff. On my good days. It has taught me acceptance, acquiescence, compliance. Allowing what is to just be. In other words, taking that stuff that happens in life that ram-rods your spine straight against your back and sends shooting, radiating flashes of tension and stress right into your brain and letting it R-O-L-L off the slope of your curved vertabrae and drop into the ocean of I can't do anything about it. It's hard to get to that place, difficult to accept you cannot do what was once accomplished with ease. Extremely frustrating to not be able to fight for your rights because you just get sicker. But it is completely necessary as well. My parents are going through a divorce and on my last trip home I saw this same evolution transpire with my step-mother for entirely different reasons. I was worried about Yorkie's wet paw prints all over the hardwood floor and followed him nervously around on my hands and knees cleaning up each mark. It's what was expected of me back in the days of 'yore when I was growing up in that house. Well my step-mom, she too has come a long way, and told me to stop, she didn't care. Her exact words, "Who cares if the house is clean if there is no one here to share it with." By golly folks, I think she's got it!

Thanks for joining,

This blog was originally published on 9/29/10.

Tuesday, September 4, 2012

If I Only Knew

I had an opportunity to not get Fibromyalgia, a fact of which I both remind myself of and kick myself over a lot less now than I used to. About a year before I got Fibro I came down with something else, something years of exhaustive testing finally revealed as CFS/ME. But by the time I found out what it was I was too late. Instead of respecting the limitations weird crashes of fatigue and pain inflicted on me over the course of that year I did what I was taught to, ignored the clanging symbols of my failing health and pushed through. I couldn't find a doctor to take me seriously and became overwhelmingly frustrated so I ignored it, hoping it would just resolve itself and go away.

Well it didn't. And all that time pushing myself to meet the expectations healthy me had trouble meeting gave the virus infecting my central nervous system ample time rattle around and damage my nerves. So now in addition to CFS/ME I had Fibromyalgia. The sick part is I eventually got treatment and am in remission from the very specific subset of CFS I had, but not Fibro! Nope, that rat bastard is here to stay. Now part of me believes Fibro was inevitable, something I would've gotten anyway at another time for another reason at some point in my life. But that other part of me, oh lets just say I have to hurl buckets of grace and forgiveness at her so she'll shut up and quit floggin' me in the back. We are still trying to become friends.

Now I can see with the 20/20 vision of hindsight how stupid I was. Hell, when it was happening I knew it was stupid. But I didn't imagine I was sick with something my doctors couldn't find, didn't know about or have a way to treat. Or would last me my whole life long. What would I have done different, had I known? Our world is hard and demanding. When I got sick I didn't challenge my lifestyle, I challenged my illness. I didn't know I could challenge my lifestyle, it seemed set in stone. It's taken many years to finally recognize my illness ain't goin' anywhere no matter how much I rail against it, so my lifestyle had to change. I get a lot of outreach from fellow patients desperate to know what to do with this diagnosis and terrible disease. How to get better and fix their health so they can fix their lives that are rapidly disintegrating before their very eyes. For me there's been no quick fix, only sweeping and drastic lifestyle changes I implemented one at a time. With much trial and error, buckets of hard work, amassing a tremendous education in health and the human body, topped off with that precious ingredient of self forgiveness.

Thanks for joining,