Sunday, April 28, 2013

Ahhh...The Family Dinner

Last night was my grandmother's 96th birthday dinner. The belle of the ball twinkled with delight as she sat surrounded by her children, grandchildren, sisters and cousins. Tales of life growing up back on the farm filled the room with laughter and good memories. Of course a few embarrassing stories popped up, as they usually do, but she was a good sport through it all. I had a nice time. However, the same redundant challenges of taking care of myself while interacting with the healthy world at large reared it's ugly head, as it always does. See I can engage in these activity-filled frenzied occasions at this point in my life. For a while it was merely a pipe dream. The sensory overload and activity alone did me in and devastated my world for days, if not weeks. Then of course there are manners. I was raised to pitch in and help out, like every other female in my family, and when I can't I feel simply awful about it. For a long time I avoided these gatherings because I couldn't pull my equal weight. Now I try and help out a little and not feel bad about hanging out with the guys while the women work. And I certainly have a time limit. I've found it's about two hours.

Right on time I feel it start to happen. The dancing pain spreading across my upper back, fog quickly claiming my brain and that unique feeling of fatigue like magnets are sucking me to earth and I cannot move. It's time to go. I start to gather myself in that direction but get sidetracked by birthday cake and a conversation with a cousin I hadn't seen in a long time. So by the time I really start to go an hour later I am well on my way to falling apart. Then bedlam strikes. The table is dispersed sending everyone up and milling around the room talking loudly. Then another family arrives, but they have a dog who isn't dog friendly so stick her in the backyard. Well Yorkie & Porkie go nuts when they see a strange dog outside, compounding the sensory explosion with fervent barking. And more people come, and it's REALLY loud. And I am trying to say goodbye to everyone swarming around each other like bees in a beehive. And then of course I just lost it. 

Now I only have myself to be mad at here. The people who begged me to stay for one more picture, a piece of cake, to finish discussing a topic, they aren't doing anything other than being pushy and not putting my needs first. But it's not their job to put my needs first, it's mine. So as I rant and rave and cry and wail on the way home I realize how furious I am. At me. Why didn't I get up and walk out when I knew I needed to? Why do I think anyone else in the world can possibly grasp that I look just fine, and make quite an effort to act just fine, but am ALWAYS sick. Every single day of my life. Some days are better, some are worse. Some are happy, some are sad. Some are filled with remarkable joy, and others outlandish devastation. It really doesn't matter, I am sick for every single one of them. Even on my good days, when I really feel Fibro releasing me from it's ugly clutches, I still fall painfully shy of what a normal healthy person can do. I can't bang my head against the wall of getting people to understand, though. Because short of hobbling around in dirty rags with a tear stained face and bandages wrapped around my extremities like a mummy, nobody is going to remember I am any different than they are. This is not an easy road to walk. But I have found the times I am cognizant of my limits and respect myself enough to actually get up and leave when I know I need to, well, it works. I am able to straddle both worlds. But only if I am very responsible to the person I am terrible at being responsible toward. Me.

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Wednesday, April 24, 2013

I Want To Know!

Lately I've been feeling, dare I say it, improved. Now don't get me wrong, it's not like Fibro is gone or anything, but my good days are better than before and bad days aren't as frequent. This step-up in my quality of life has stimulated a whole new cyclone of thoughts whirling around my head. I wonder how I survived the last eight years. I seek to understand where I found the strength to haul myself through and out the other side. I pray I keep going in this direction. But perhaps the most important question of all is what on earth did I do that actually worked? I know I changed my entire life, worked very hard and refused to give up. Is it as simple as that? Or are there other factors at play here? 

Fibromyalgia is as individual to each patient as the person is themselves. While there are many shared symptoms the severity ranges from bothersome to completely incapacitating. Why? How come some patients suffer from inflammation yet others do not? And why on earth do some get better while others can't leave the house? Science and medicine cannot answer these questions yet. Many frustrated doctors leave patients to figure it out for themselves, which hardly seems fair. I wasn't content to let the concept of fairness supersede my quality of life and attacked this beast like a rabid dog. It worked for me, but that's just me. I think it might do the patient body some good to explore what we do know instead of focusing on what we don't. Fibromyalgia is a syndrome. This means they know the symptoms it causes, but not why it happens. Could it be there are as many different causes as there are stars in the sky? Is it simply the mechanism allowing permanent damage to the central nervous system we share? I have to say after talking with thousands of patients I think so. And not just because I want to prove the person who just told me I got Fibro from eating wheat wrong. Even if that is a mighty big motivator.

My root cause is viral. I've seen enough specialists, received enough treatment and lived with it long enough to recognize this truth. My flares consist of a specific set of symptoms not present when not flaring. All my autoimmune tests come back negative even though my immune system can't seem to get a handle on it. But that's just me. When I first started blogging and networking with fellow patients I thought I knew all the answers. I'd managed to reclaim my life from the hell of unmanaged Fibro and believed strongly in what I'd done. And that it would work for everyone else if they just put forth the effort. Ahhh, the blissfully ignorant position of sitting in right. It didn't take me long to realize I sounded like a sanctimonious ass. For unless a person lived my life, shared my root cause, received the same treatments I did and changed their lifestyle in the exact same way, I couldn't insist what worked for me would work for them. There is simply no way to know this, yet. Is it possible we the patients could advance our cause drastically by getting on the same page, and that is that we don't share a single root cause and therefore experience this illness differently? Once again I have to say I think so.

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Monday, April 15, 2013

The Stigma Of Fibromyalgia

Last week I went to the post office and had yet another enlightening conversation with the clerk helping me. It's a conversation I've had many times with many different people during a variety of activities. In fact, it doesn't seem to differ much at all regardless of who I am talking to. She took one look at my The Fibromyalgia Crusade return address labels and repeated the name slowly. "I'm tired all the time, how do I know if I have Fibromyalgia?" she asked. The way the question was phrased indicated this person had some prior knowledge of at least one facet of Fibro symptoms. I paused for a second to figure out how to best answer this question. "Well," I answered honestly, "when it gets so bad you'd rather die than continue living it's time to go to the doctor." Was that dramatic enough? She gave me a rather perplexed look. "It's extremely painful too. A central nervous system disorder that increases painful sensations in the muscles and ligaments," I added. "So it hurts like when you work out too much?" she asked with an utterly obnoxious smirk. Ahhhh, I thought to myself. Someone in her life has Fibro and she doesn't like it one bit! Doesn't understand it, doesn't believe it...

"Oh no," I answered, unwilling to be painted into a corner on this one. "It's like the flu. A really bad flu. Forever. For years. It never goes away." That reached her. She got a look on her face which was a wonderful combination of shocked horror and blatant discomfort. Our conversation about Fibromyalgia ended there and I quickly paid and left. Well the second we stepped outside the friend I was running errands with got a wigged out look on her face. "You sure handled that a lot better than I would have!" she yelled. "I wanted to reach over and smack her across the face!" I laughed and thanked God for the supportive people in my life. So I explained my diplomatic approach, how getting people to understand and relate it to their lives is far more important than being right or caring how strangers perceive me. And as we talked through this twelve second conversation and the many layers of meaning it held I realized something overwhelmingly profound had happened.

I didn't get upset! I was confronted with a doubter and didn't experience one blip of spiked blood pressure. There was no taking this person's disbelief personally or feeling ashamed I have something so many people don't understand or give credence to. There was me, explaining it, putting real world comparisons to my pain and symptoms. And then ultimately walking away and not giving one rat's woo-ha if she changes her opinion about Fibromyalgia or not. I'd done my part and hopefully made her think about it in a different way. That's all I can do. Encounters like this used to leave me outraged, frustrated, bitter and completely bent out of shape. And wondering why I had no ability to tend to my own life. I've been working very hard on releasing the need for approval and acceptance from people who aren't relevant to my existence. I guess it's least for a twelve second conversation that took place one day last week it is.

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Wednesday, April 3, 2013

Opening Up To The World

Late last year my husband and I were watching Saturday Night Live and a skit came on about the Fiscal Cliff. Well...I didn't know what that was, hadn't ever heard the term. Part of my way to deal with my myriad health issues has been to eliminate sources of stress not critical to my survival. The news can sure be a source of stress! Nevertheless the look he gave me was similar to the one I give when a person under 25 asks me who The Beatles are. Dumbfounded disbelief. I felt ignorant and out of it and not at all connected to my fellow man. So the following day I turned the news on, determined to become aware of a world outside my own. A few days later the tragedy at Sandy Hook Elementary School happened. Then it seemed there was another random public shooting every other day. It got to the point where I was scared to turn on the TV in the morning for fear of what had been unleashed while I slept. I remembered through rivers of tears pouring down my face why I didn't want to be a part of this cold, terrible, heartbreaking world. There was just too much pain. Senseless, pointless pain.

I stuck with it, though. And eventually there came a day when a person didn't converge on a public place of innocents with open fire. Amazingly enough there came a day I could watch the news without breaking down in a puddle of tears, too. Slowly I became reacquainted with the comings and goings of the world at large. Before I got sick I used to rant and rave at any newscaster who didn't share my opinion. Perhaps hardship has grown my compassion because I found myself listening to opposing viewpoints thoughtfully, and even learning a thing or two. As my knowledge of the world we live in expanded my sensitivity toughened up a bit. I mean if ever there was an exercise in not freaking out over things I can't control, watching the news was it!

So what did all this exposure to epic amounts of violence and controversy do for me? Slapped me around a little, reminded me of what is so terrible in the world, illuminated the irrelevance of my own existence? Sure. But it also propelled me forward. Being connected to something bigger than myself helped me think about more than myself. Examine my spot on the planet, how I fit in and what I can do to make the most of my life, regardless of hardship or disability. As odd as it may sound taking up with the daily news stuck my toe in. Signing up for the writing workshop a month later dunked me up to my jodhpurs. And finding out a piece I wrote in that workshop won in a writing competition a few weeks back, well I am now submerged up to my head. One small step toward joining the outside world turned into one giant leap forward in the progress of my life.

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