I am a Fibromyalgia survivor. I was first diagnosed in 1992, at the age of 12, and have been re-diagnosed countless times over the years seeing specialists of all kinds. In the late spring of 2005 I began taking an experimental drug for Fibromyalgia that wipe the disease away. One year later, pregnant with my second child I stopped taking it and slipped quickly and painfully back into the world of illness. Two years later, with my new infant daughter and 5 year old son, I reached an all time health low. The pain was unbearably severe. The exhaustion was all consuming. Our life as we knew it was brought to it’s knees. I couldn’t care for our children. I couldn’t care for myself. Rescued by an amazing group of mostly strangers rallied from a local parenting group, we limped along accepting casseroles and prepared snacks for the children, strangers sweeping the floors and doing dishes, friends coming to hold the baby so I could sleep. It was brutal and for the first time in 13 years I was truly devastated and frightened. I packed up and headed back to the doctor’s office to ask for help, again. Again, again, again. It had been such a long decade. Because I was unwilling to wean my tiny baby girl I was limited to drugs that might suppress the pain. I knew this road. It would work for a short time, but the symptoms would return more severely than before, but I did it anyway. I went home defeated by my new prescription, and watched and suffered as the pain began to break through and become unbearable again. I trooped back to the doctor and begged, cried for help. Together we went over my extensive history, discussed what we could try. The futility descended on me… so dark it seemed to suck in light. I had done this. All of it. I had done all the New Drugs. The Promising New Things. I had been in this thing from the beginning, before anyone had heard of Fibromyalgia, when you still had to explain it to doctors and wait for them to research it. I had seen the show, over and over and over. Parading as something new, and always turning out to be the same old pig with new lipstick. I couldn’t take any of it anyway. Wasn’t willing. I could nurse my daughter, hold her, love her, cherish her. I couldn’t get better. I couldn’t see the point of weaning her just to exhaust the same old tricks again. I sighed and looked at my doctor. “I can’t do this,” I told him, “I’ve done all this before. Had all these drugs, tried all these combinations, watched my mother do the same. No one gets better. This isn’t worth it. ” He set down the files he was looking through. Put down his pen and looked at me for a minute, taking me in. We’ve been here a long time, I thought, absent mindedly wondering if there were other patients waiting. “Pointless.” was hissing through my ears.
I sighed it out, looked at my knees, and he started talking. “Yeah, fix it, Doc,” I thought. I half listened as he told me there wasn’t really anything new. He wasn’t going to lie to me. We could try new combinations, physical therapy, blah, blah. “I have nothing new to offer, not really,” he told me, “I think you should try something else, maybe acupuncture.”
I snorted. Sure. Thanks. Awesome. I’ll do that. “Yeah, thanks, I’ll do that,” is what I said. What I did is go home and cry harder than I ever had before. I cried out all the disappointment, all the suffering, the exhaustion. I grieved for the life I would never have, for all the things I would never do. I cried for the babies that would watch their mother suffer. I cried for the anger I imagined them feeling. I cried until there wasn’t a single tear left in the world, then I slept.
When I woke up I felt a tiny kind of bud of peace in my gut. An acceptance. In 16 years I had never accepted, and I had just moved through all the stages of grief over the loss of my own life with one good cry. I had no idea that my life was about to begin.