In March, 2006 I was diagnosed with Fibromyalgia. The diagnosis followed several years of countless doctors visits, trying to find out why I felt so terrible. I was in my late 20s, but had the energy, or lack of energy, of a woman four times my age. I was always tired, and had pain throughout my body. I felt like I always had the flu- achy. My grandmother's sister had MS. I remember mom telling us about her. Aunt Vivian died just before mom & dad got married. Also on mom's side of the family, but on her father's side, mom's cousin has MS. I had CT scans, MRIs, blood work; more tests than I can remember. I had the doctors test me for MS as they checked for everything else. And yet no answers. I kept finding myself sitting in doctor's offices- looking at doctors who seemed to think I was a hypochondriac. All the tests they ran showed nothing- on the charts I looked like healthy person. But I knew that how I was feeling was NOT how a healthy woman in her late 20s should be feeling. A dear friend told me that what I was going through sounded like her own ideal, and suggested I talk to my doctor about the possibility of fibromyalgia. I was tired of doctors looking at me with 'that look'. So I did my research. I read a lot about fibromyalgia. I printed an article describing the tender points, the fatigue, etc. I took a highlighter and highlighted the parts of the article that applied to me. When I finished, I had most of the article highlighted. I took this to my neurologist. We talked about the article, and about how I felt. Then he did the tender points test-and the pain was so bad it just about brought me off the table. I had to keep myself from kicking him and screaming out.
Finally! A diagnosis! But having done my research, I knew what a double edged sword that was. Yes- now we knew what was wrong. But there is no cure. It is also something I will live with for the rest of my life. I was 3 months shy of my 30th birthday at the time of my diagnosis. And there are times the diagnosis feels like a life sentence. Our family has long lives- mom's parents lived to be 84 and 91. Knowing at 30 that I would live with this for the rest of my life was a lot to deal with. And there are times that I think maybe I'm a lucky one- maybe I will live long enough to see medicine make advances with this chronic and crippling illness.
In the three years since my diagnosis, I have learned how to maintain. How to maintain and not do too much at once- or I risk higher pain levels. But doing too little causes the pain to rise up too. It is like walking on a tightrope- one mis-step in either direction can cause me to spiral. I was always fiercely independent, and for me, learning to say 'no' has been the hardest part. My mother was superwoman- or at least it seemed that way. She worked full time out of the home, always had a home cooked meal on the table, took care of my sister and I and our dad, and kept the house spotless. I don't have children, I have dogs. And I can't keep up with her. It has taken me a while to realize it's ok if the house is dusty. I have had to say no to things I would like to do. Instead of running around shopping all weekend, I might just have to kick back at home. It has been an adjustment.
This blog is really for my benefit. On the very worst days, I find it helps to get my feelings out. Perhaps it will help on the best days too. So this is for me. It is my journey, as I deal with this luggage called Fibromyalgia.
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