Four summers ago I couldn’t get enough sleep. Fourteen, fifteen hours a day I was sleeping and still feeling like a zombie when I was awake. Not in an “I want to eat your flesh” way, but in a “I have nothing going on in my head” kind of way. I had to fight through a fog to think. I remember saying “I can’t get enough sleep,” but not worrying. I’d always been one who needed to sleep nine hours a night to feel rested.
But then I went back to work (I’m a teacher) and the fatigue stayed with me. And then I started feeling the pain. Mostly it hung out in my calves and ankles, and I thought only that I needed to get better shoes. Expensive shoes with orthotic insoles. They helped, but I still suffered the pain and spent my weekends sleeping. I let it go a month before seeing my family doctor. She ordered blood tests and x-rays and put me on Tramadol. It helped with the pain but made me nauseous. I have a vivid memory of running from my classroom with my hand over my mouth on a golden afternoon right before the weather turned cold. The blood tests I waited weeks for turned up nothing interesting except did I know that I had once had mono (no, I did not; I was frequently sick and like I’ve said, I’ve always been sleepy) and maybe these numbers for arthritis are high. She didn’t know what to tell me, so she sent me to the rheumatologist. I had to wait a month to see her for more tests and it turned out I didn’t have arthritis. I went to see the gray-haired rheumatologist pressed my trigger points and stretched out my limbs, asking “does this hurt?” and when I said “yes” she said “fibromyalgia.”
That word was a relief because the specter of degeneration had been looming when I heard the word “rheumatologist.” She put me on gabapentin to try to get the pain under control, suggested yoga, and told me to read about my condition on reputable websites. I tried to stay on Mayo Clinic and NIH and the National Fibromyalgia Association websites, but I couldn’t help straying into blogs and web forums. The stories of pain and disability frightened me, but I read that many people were able to manage the pain so I felt all I had to do was find the right treatment plan. The next appointment I reported what I found on the reputable websites and nothing about the fear; she was a very no nonsense doctor who meant to give me my diagnosis; she sent me on my way, back to my regular doctor to deal with everything else.
I started going to a yoga class put on by the local recreation department in October, before I knew I had fibromyalgia and thought I might have arthritis. I wasn’t able to do every pose and the instructor was good enough to show me how to modify them into something I could manage. It took weeks to feel like my pain and fatigue even began to subside. As the weather grew even colder and the snow came on all I wrote about in my journal was “pain pain pain.” But slowly I improved in yoga and the pain and fatigue lessened. There are poses I will never do and hot yoga is not in my future, but I can spend twenty-five or thirty minutes stretching out a few times a week. It helps immensely when I’m feeling creaky and achy; sometimes it helps so much I don’t have to take my daily naproxen sodium for the the everyday pain.
I went to a spin class that winter, but it was almost too much for my body. The cold weather and working full-time made my pain and feeling of fog much worse. I didn’t go back to the second half of the class. Instead I trained at home in my living room, pushing myself, but never pushing as hard as my spin instructor had. I went back to doing yoga. I started taking hot baths with epsom salts regularly. I felt better than I had in the fall semester, but I was still grateful when the spring semester was over and I was able to get more rest. The two and a half months after Spring Break were exhausting me and I needed to get some rest. The first week of summer vacation was spent in recovery.
I knew I had to do something more because the pain and fatigue were still haunting my body so I started bicycling. I started because I could start small, it didn’t have to be too strenuous, it was actually a little fun, and I had the support of my husband and my sister, both long-time bike riders. I started out moving slowly: eight mph and riding short distances—two miles to get downtown, four miles on the trail along the river. The first riding season I topped out at eight miles.
That summer my symptoms lessened, but I still needed to sleep for nine or ten hours a night, and I was still haunted by the pain.