We carry our illnesses like a papoose; they clutch us firmly yet we can’t put them down for a minute to rest. There is no relief from chronic pain. I used to think that sleeping was my cure; it used to be but not for a long time. Sleep was my escape for any emotional or physical pain, now it just adds to my frustration. I can fall asleep easily enough (with medication) but then I go through long periods of time when I wake up at 3:30am and am up to at least 6:30am if not longer. Sometimes I fall back asleep for a few hours but it is restless and fitful, with anxiety dreams, tossing and turning.
Who are we, these invisible people of pain? We are mothers and daughters, sons and fathers, sisters and cousins. We were not born this way but one day our “normal” lives changed, forever. For me, my life changed with menopause at age fifty. My body fell apart and it hasn’t been the same ever since. I developed thyroid problems and body aches and pains that left me limp, in bed, groaning in pain. No doctor could help me, my internist looked disgusted as she left the examining room, leaving me inside, alone, weeping with pain. “There’s nothing more I can do for you” she said and slammed the door. I felt bad that I had bothered her, actually she made me feel bad; it was NOT my fault.
I’m not saying I ever ran marathons but I didn’t have to wait to plan the day’s activities until the very last moment. I could plan going to Central Park to meet a friend a week in advance, or to see a new Woody Allen movie with a friend, or go drink a mimosa with brunch. Now, I always have to add: “but I will call you in the morning to see how I’m feeling.” My true friends understand; I’m the one with the problem. I feel ninety years old and handicapped, actually my eighty-five year old mother is in much better shape than I am, for that I am grateful.
I’ve given up hope on a cure for the future, I’m happy that the Rheumatologist I have not only believes in Fibromyalgia but takes it seriously and wants to help me. He also appreciates me because I understand the parameters, there is no cure and when he asks me how I feel I tell him “that under the circumstances I have been doing fine.” I am not bitter, I am sad once in a great while, and enormously uncomfortable. I thought losing weight would help but I lost twenty-five pounds and the pain is still the same.
For the last two weeks I’ve been lying down in the back of our car for four to six hours per day; tomorrow after a grueling tour visiting my daughter’s second college choice, I will sit for another four hours going home. Once home, I will take a hot bath and put on the jacuzzi jets and there I will stay until I can stop screaming silently with pain.