**A woman that belongs to the same fibromyalgia forum that I do on MDJunctions was nice enough to send me something she wrote for medical professionals where she lives. I think she did an incredible job putting into words just some of the things we go through as people with fibromyalgia. It's my honor to include it here. Thank you again, faroutback!**
I've had fibromyalgia for 22 years.
The first challenge was getting a diagnosis; there were doctors that diagnosed me with depression, type A personality, and anything else except fibromyalgi.
After a long search, I have a competent, meticulous rheumatologist who is up on the latest about this condition. He is a doctor who supports my exercise routine and encourages me to do more when I am able. In every sense, I am medically well-cared-for, I can pay for good hospitals, medication, and doctors, I have a profession I love, activities I adore, and a couple of friends who are like my sisters (one of which also had fibromyalgia). My family understands my condition and my husband supports me in everything. Within the context of chronic illness, no one could have more support than I do.
But if we talk about quality of life, what I experience every day, and what others see, it is another matter.
Every day I get up not knowing if I can go out to walk or jog, or not. I know that if I don't do it in the morning, I won't do it at all even though it is medically necessary. I only function in the mornings; after 3 or 4 in the afternoon, fatigue defeats me. At seven or so at night I fall asleep wherever I am. But if I don't manage to do some kind of exercise, I feel guilty. I console myself with food, a completely self-destructive behavior.
The stress of having fibromyalgia makes me vulnerable to depression evary day. It's a process of attrition, of wearing down, that over the years finds no remedy in family pleasure because I'm too tired to look forward happily to events such as birthdays or Christmas, but rather with horror since I think of the deadly tiredness I will wind up with. I can't stay up late or have more than a single glass of wine. Plane trips kill me because I can't spend more than a couple of hours without moving around; my whole body begins to feel as if it were on fire.
After a spell of doing exercise, something always interrupts the program: a migraine, an exhausting digestive upset, a climate change that activates every pain in my body. I know beforehand that nothing lasts, neither the good days nor the bad, but as time goes by, the bad days begin to increase in number.
I can't concentrate on reading matter, nor think methodically, because the fatigue isn't just physical. It invades my mind, my desires, my hopes, the projects I know are just dreams that can't come true. Out of respect for the people who seek me out professionally, I am retiring except for time-limited activities--workshops, talks, courses.
Guilt lies beneath everything: I am not the grandmother I want to be, the wife I once was, the mother my children deserve. And that guilt that comes from the absolute necessity of saying "no" to so many choices in life--that it is necessary doesn't diminish the guilt. Women are brought up to serve, to put others first, and though we have been able to get rid of many of these behaviors, crumbs of guilt remain.
What I do now must be at home, not involve driving too far or being in places where I can't rest. I have dizziness, nausea, pain, indigestion, and a deadly exhaustion. And I am one of the people with fewer symptoms of fibromyalgia, others are in infinitely worse shape than I am. It has gotten to the point where I notice immediately if I feel good--the absence of symptoms is wildly noticeable because it is so infrequent.
A doctor told me one time that if I hadn't said I have fibromyalgia, he wouldn't know it because I seem so well. That remark represents the difference between a medical outlook and mine when it comes to quality of life. It has become so diminished that I am not the person I used to be, and I will never be that person again. I have wanted to go live alone in an apartment just to be able to stay in bed all day without affecting anyone else by doing it. I feel like I can't live with people or alone either. Only responsability and self-esteem kick me out of bed and push me to do something worthwhile, no matter how minor or insignificant--making up a bed, trying a new recipe, starting a spring garden.
I live always with the fear that some day will come when that won't be enough to get me to participate in life.
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