Monday, May 23, 2011

Its All About The Symptom Chart

The other day I was talking to a good friend about life, love, marriage, you know, fun things like that. I happened upon a funny memory I had not thought of in years. When I was newly married, oh so many years ago, one evening my husband and I were watching TV. Back in those days of ‘yore we were your typical newlyweds and seldom kept our hands off each other. But somehow this particular evening we found ourselves on opposite ends of the sofa, not cuddled together like we usually were. In my typically female brain I started to obsess on this. I sat there, paying no attention to the Seinfeld re-run on in front of me, and flipped through the mental file of what could be wrong. “Why is he not near me? Am I not attractive to him? Does he love me? Why isn’t he showing me the attention or affection he usually does?” I sat there getting more and more worked up as the minutes ticked by, my paranoia and insecurity mounting. Finally on the commercial break I looked over at him and exploded “Why are you not near me? Do you love me? Am I attractive to you? I don’t understand what is wrong!” He looked back at me in complete shock and proclaimed “Honey, I am just watching TV!” Oh I learned a lot that night about the fundamental differences between how men and women communicate and perceive things.

I have somehow managed to survive the nearly last 10 years of marriage by learning how to accept this variation in baseline. Things that are important to my husband may not be important to me (like home electronics) and certain things that are important to me are not important to him (like makeup). We have learned how to respect our differences while placing primary emphasis on growing together as we grew as individuals. Change is inevitable, thank God, or I would still be the super-stressed-out overachieving 23 year old I once was and that just sounds exhausting! But I'll be darned if Fibromyalgia did not do its damnedest to cause division, for it was obviously something one person was going through first hand but it was still happening to both of us. How to communicate that? How to put into words someone else can understand how badly you hurt, crazy you feel, totally freaked out you are? Yes he was there every step of the way, but does not live in my head, therefore cannot understand what I don't spell out. Learning how to communicate on this level was an entirely different playing field. I sure wish back then I had the Purple Pain Code at my disposal!

One of the things that helped me, and subsequently my husband, was to chart my symptoms. With the flippin' Fibro-fog I could not remember anything anyway, so charting was the only way to effectively communicate with my doctors. Oh so many countless appointments found me blithering and blathering my way through, usually forgetting the most important concerns I had, and unable to state with conviction why I was really even there! I sounded lame, even to myself! See for a doctor to support a disability claim, write a work note, prescribe a medication or even begin the long process of obtaining a diagnosis, our medical professionals must be given the clearest and most concise snapshot of how our lives occur. Our limitations, frustrations and failures. Our successes or recognition of a pattern of behavior resulting in a new understanding in how to manage a symptom, pinpoint a trigger or avoid a flare. The symptom chart is a crucial tool in getting anyone else that is not a Fibromyalgia patient to understand even an inkling of what a day in your life is like. The Doctor Appointment Packet sold on The Fibromyalgia Crusade website has one, a pretty comprehensive composite of symptoms with a grading scale and a place to record your sleep, work and exercise activity. It is amazing how much you can learn by looking back at an overview of a week in your life! And how much your doctor can learn about how to better treat you. With a disorder modern medicine is just on the cusp of understanding and many still challenge the validity of, it is critical to become a pro-active patient. Once I learned this there was not a doctor in the land that did not take me seriously. I walked into each appointment armed with oodles of documented information and the details of what I was doing to manage my health. Yes, I frequently overwhelmed them but GOOD! It showed them I was a force to be reckoned with and I was just not going to go away. This was a critical step in getting my Fibromyalgia managed so I could regain a quality of life. Because an angry Fibrate in pain shoving page after page of  documented symptoms, previous treatment attempts and a clearly spelled out expectation of appointment objectives is enough to make any doctor take you seriously. Any doctor interested in truly helping their patients, that is.

Thanks for joining,

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