Monday, November 26, 2012

Dear Fibromyalgia,

Oh you nasty little bugger. You've changed my life in so many ways since we met in 2005. In fact, very few relationships have impacted me as quickly and completely as the one I have with you. While I've been certain you were going to take me down more times than I can count, somehow I find myself sitting here today stronger than you. Much stronger. I've changed in a lot of other ways too. Patience, compassion and courage have taken on new meaning in my life. Empathy and acceptance as well. Gratitude for things great and small replaces oodles of entitled expectation. Usually. And my understanding of this world, how it works and the place I fit into it has been revolutionized beyond my wildest imagination. 

But it has taken me so much to get here. Insurmountable challenges I never though I would overcome. Grief, despair and heartache so grand I didn't believe there was anything else in this world I would ever feel. Except for the pain. Oh that pain. I try to describe you, but the words I can find are like taking a piece of broken glass and telling someone to see the brilliance of a cut diamond. Pathetically inadequate.

People used to tell me I was creative, but the creativity you forced me to create, well it's astounding! How to see good in bad, happy in sad, satisfaction in want and satiation in neglect. The art of taking a challenge and turning it into an opportunity to do better. Realizing there is no longer a heartbeat in yesterday, and it still has yet to find tomorrow. There is only one place life exists, the beating pulse of today. Because learning how to accept you is how I recovered much of what you've cost me. For all that you have taken, there is so much more that I've gained.

Thanks for joining,

Monday, November 19, 2012

A New Leaf

Ever since I admitted some hard core truths to myself and set about to stop living with guilt boulders burdening both shoulders I have been feeling loads better. It's amazing how many things there are to get stressed about in life. It's even more amazing to realize I don't have to feel responsible for fixing every single one of them. It's not like I could anyway, but the expectation was sending me, via a very expensive one way ticket, on a slow boat to crazy. This paradigm shift has been huge, and not just for me but my entire household. I am present. I am productive. I am happy. And I've been physically feeling pretty darn good too. This means things are getting done. Instead of sitting around feeling awful because my life is my life I am actually living my life. The more I do this the more my previous years of misery start to make sense. It's positively astounding how many little things I was unwittingly allowing to disturb my progress to health. 

Sadly my latest lilac run once again came to an end. I woke up Friday morning crying. So sore, I felt like I'd slept on a pillow of rocks, if you could even call it sleep. There was a burning coal of fire sitting on top of my right shoulder. Nerve pain zipped up and down my right side and the mass of my cells felt too big to fit in my skin. Every inch ached and throbbed. Initially I got mad, then I calmed down and realized I had an opportunity to change some patterns here, the way I react to a flare. Using my three questions that got me to lilac in the first place I assessed the situation. 1) Do I deserve this pain? No, I didn't do anything to warrant such punishment. So I set my immediate goal to work towards feeling better. 2) Is there anything I can do about it? Yes, I can work towards feeling better by taking care of myself. In the past I would flog myself for about a day for getting the flare in the first place, only serving to exacerbate it, which really makes absolutely no sense at all. This time I was determined to be different. Because number three is the kicker. 3) Can I calmly and rationally set about trying to feel better, from something I didn't inflict purposefully and maliciously on myself, by taking care of myself without feeling guilty? And that, my friends, was the million dollar question.

Somehow I was actually able to pull it off. I guess you can teach an old dog new tricks after all! But the next best came on Saturday. My husband and I are driving to Costco and I feel awful. He starts to set about all the ways he knows how to try and "fix" me. I know this illness is as frustrating for him as it is for me but didn't realize we have our own pattern of how we deal with a flare as a couple. But on Saturday I saw it, clear as Christmas on December 25th. So I took his hand in mine and said, "Lookit, I am sick. You can't change that right now and I can't either. But we can stop the madness we have been existing in. I feel like crap, I just do. If I get bitchy tell me and I will reign it in, but it is what it is. This is life. So let's break the cycle of me feeling guilty and you trying to fix it. It's wasted energy. Let's just go to Costco!" And the best thing of all, what I am so excited to report, is we actually did. 

Thanks for joining,

Wednesday, November 14, 2012

Onward We Go

For many Fibromyalgia patients this illness is not the only one we face, and there are many other aspects to every person's life besides health. There is love and family and feelings and survival. Watching life inflict it's brutal blows on those we hold near and dear. Struggling to find a way to support our own, prosper and enjoy some of the goodness of all things great and small the progress of humanity has gifted us with. There are choices to be made and even when choosing right, are often consequences to be paid. Balancing what was, is, can be and will be is a challenge all its own. No, the human condition is not small. It is rich with complexities and plenty of things that happen we have no control over. Fine and dandy when life goes right, but far too many times we are left standing amid destruction asking, "Why me?"

Who in the world knows? We don't have knowledge of the absolute. What we have is faith and beliefs and science and traditions, ways to explain the reason the human animal roams the earth in all of our infinite superiority. Bad things happen to good people, and sometimes they don't just happen, they keep happening again and again until what should be a strong and capable individual is beat down and ready to fold. But we are nothing if not resilient! The instinct to stay alive keeps many keepin' on, often well past the logical point of no return. But the battered and bruised bottom is a very hard place to climb out of, especially when one keeps landing there again and again and again. What to do with the devastation, pain, heartache and bitterness? Is it all for naught?

On my good days I say no, my trials have shaped me. I am who I am because of what I have withstood, and will continue to grow into who I am meant to be through each new challenge. Not that what went so terribly wrong is good, but it can still be used for good. I am far less generous on my bad days. Sometimes those days can seep into weeks and months and even years, and before I know it I've forgotten how to smile. Life has lost it's luster, become a chore, no better than something to endure. The only way I know how to survive those times is not to pretend they don't happen, because they do. It is not to prophesy they won't come again, because they might. But in admitting my weakness I can find my strength, by confessing I can't bear my burden alone I can find my faith, and hopefully the glimmer of a better tomorrow. Clinging to the belief that under the thorny path I stumble lies my yellow brick road. Life can be unpredictable, unforgiving, often painful and for the fortunate it is long. And only going in one direction, forward.

Thanks for joining,

Thursday, November 8, 2012

The Blame Game really lame. But for the longest time I couldn't help it, really I couldn't. I've been trying to shed massive boulders of guilt for years now, to no avail. Guilt I got sick, guilt I kept getting sick, guilt because I can't work and my husband carries the entirety of our financial situation on his shoulders. Guilt I can't be who I was with my family, guilt because the reality of my illnesses has cost my husband his, guilt I'm not who I am supposed to, or more realistically, expected to be. Guilt guilt guilt guilt guilt! So much damn guilt. I started to feel like I was the bearer of nothing but profound disappointment. It's made me more than a little crazy. The reality of what repetitive and severe illness does to a person is tragic. How each individual finds the strength to overcome an onslaught of tidal waves that keep wiping out their life is truly a miracle. I searched for that strength. Some days I could find it but more often than not I couldn't and lay weeping under the pile of stress and misery and disappointment my life had become. Oh the mournful wailing of regret!

But I have a lot to live for and believe I can do better, so I kept trying. I guess something happened recently that served to effectively shatter this mountain of oppression I was living under. I'm not quite sure what it was, though. Because one day I woke up and looked around objectively and decided I didn't want this life anymore. Not the life with chronic illness, I've known since it started I didn't want that. But the life my crazy guilt cycle kept me chained in, that's the one I felt I just might be able to do something about. My first realization was how stupid a very prevalent behavior pattern is. See the second I'm not hacking on flare's dark door I fling myself back into the expectations of others to "make up" for how awful their lives must have been without me. Today that seems self-absorbed and useless, but it's something I did for many years. And of course that would push me right back into the flare, and around the mulberry bush we go! But one day not too long past I couldn't figure out for the life of me why I didn't deserve to feel good? The people I was inflicting this grand disappointment on are not sick. They feel good all the time. Yet I take the little precious bit of lilac I fight so hard for and fling it at their feet, all but begging them to crush it under their dancing shoes.

Maybe that was the first step, to put my needs ahead of other's expectations. Perhaps that is what made me wake up on a different morning and decide to stop giving my energy and stress to things I can't do anything about. It was only serving to oppress my present. So I consciously redirected my thought patterns. When I would feel helpless or mad about stuff from before I'd remind myself the only thing worrying did was make me crazy now. Then I'd go give the dogs a bath or catch up on General Hospital, depending on my pain and energy for the day. Lo and behold after a few weeks of this I started rolling those negative feelings of victimhood off my back without even realizing it. My present was actually a nice place to be and I wasn't giving it away for anything! 

But what happened next is the big one. See I was no longer giving away my lilacs to the first person who wanted something from me, and I wasn't stressing about things I can't control, and before I knew it that monster monkey on my back, that gazillion pound ape of guilt I was hauling around with me everywhere I went, well I got the strength to turn around real fast, strangle it and leave it there to die in the middle of the room. I no longer felt guilty for being sick, disappointing, burdensome or basically just existing, as I did for so many years. I found peace through a new realization and felt a freedom and lightness I don't know if I'd ever had. It is this place I keep returning when my habits from the past threaten to sneak in and steal my joy, and boy do they ever. But I am a big girl and my life is my responsibility, I take it and own it with pride. And the other adults I know, well their life and happiness is their responsibility to find and create for themselves too, certainly not mine. 

Thanks for joining,

Sunday, November 4, 2012

Is This JUST Fibromyalgia, Or Am I Dying?

This last week I spent four days lilac. It was marvelous, glorious, wonderful. Beyond comprehension. The world was my oyster and there was no problem too big for me to handle. In contrast, my chronically healthy husband had the respiratory flu. So he sat here hacking away and bitching and moaning and blowing his nose as I experienced the joy of each moment like it was a gift of from the gods of health. Sure made me realize what a drag I must be to hang out with when I am whiny and feeling sorry for myself. It also renewed my acute memory of what hell this illness really is. I'd forgotten how good feeling good felt! Never one to look a gift horse in the mouth I refused, absolutely positively refused, to live anywhere except in the present tense of each pale purple moment. They don't come often enough to squander. My seasoned habits and cranial neuropathways kept trying to drag me back to the misery of the past or fear of the future. It's where I spend most of my time. But I felt so darn good I absolutely refused to live anywhere but in the heartbeat of the moment and over the course of the four days whenever my mind would wander kept dragging myself back to the present. 

On the morning of the fifth day I woke up curious, as I had the previous four, becoming increasingly more hopeful with each passing day Fibromyalgia just spontaneously went and cured itself for some who knows why reason. But my neck was sore and stiff, it felt like there was something on it, like a big pocket of air under the deepest layers of my dermis. Of course there was nothing there when I reached back and touched it. The very mild stirrings of a headache were starting to rise. I bargained with myself to ignore these symptoms, chalking them up to a psychosomatic fear of Fibromyalgia. Or I was getting the respiratory flu from my husband. Either way I was not ready to give up my string of lilacs, no not at all, let alone the possibility Fibro might come rushing horribly back. 

But, alas, seeing as this illness is NOT an imagined up psychiatric response to stress and depression, mind over matter did not prevail. Slowly but surely, bit by bit, over the course of the day my usual state of being, the one where I have that illness called Fibromyalgia, came back to me. By the end of the night I could barely move my neck. It was swollen and tender to the lightest touch. I had a terrible headache radiating up my skull and into the frontal lobe and felt shaky, nauseous and like I was getting the flu. Smack me across the face, it hit me! One reason this illness is so damn terrible is because one of four possible things were happening to me, but I had no way to tell which one it was. 1) Fibromyalgia was coming back or flaring. 2) I was getting the respiratory flu. 3) I laid on my neck funny the day before at the pool and it was strained or twisted. 4) I was having hemorrhagic strokes again. Two years ago I had two. Directly proceeding an intense feeling of "well being" and manic behavior and a thunderclap headache. So while my behavior this past week didn't fit the textbook definition of Cerebral Vasculitius RCVS, the condition which caused my strokes, there were enough parallels to cause alarm. 

Really? I may be mid stroke and am just supposed to put my bathing suit on and go down to the hot tub with my husband for his habitual Friday night scotch and cigar? Knowing "lucky" doesn't even begin to cover how I lived past the last round? So yeah, that's it. One thing that is so freakin' terrible about Fibromyalgia is you think you may be dying, but there usually isn't anything they can pinpoint as wrong. Save for the handful of times there are. See I walked around for four days between stroke one and two, acting like a complete loon, convinced the headache making my head feel like a watermelon hit with a sledgehammer was JUST Fibromyalgia. 

Thanks for joining,

P.S. The outcome following this article is I did not have strokes or get the flu. But Fibromyalgia did come back...