Getting the proper diagnosis was a shock and a relief. I was exhausted - physically and emotionally. I cut out all nonessential activity, stripped my life down to the bare minimum. I spent a lot of time on the couch, watching movies or baseball.
Being less busy - saying no to things I wanted to do - was very, very difficult to adjust to. Like most people who are eventually diagnosed with fibromyalgia, I was accustomed to being busy every moment. Not being able to do the things I wanted to do left me sad and frustrated. I felt, "This isn't me." People I confided in told me it was temporary, but I needed more of an adjustment than that. I needed to accept it as part of myself. It was a very big emotional adjustment.
We started talking about moving out of New York City, not because I thought it was unhealthy to live there, but because I wasn't able to enjoy it anymore. If I was going to do nothing, at least I could have a backyard to relax in, instead of being trapped in an apartment.
After a few months of doing very little, I had a bit more energy. I went through a process of gradually adding activities back into my life, a tiny bit at a time. I would take a baby step, meeting a friend for dinner one week. Then I would hold it at that for a while, and just let my body adjust without pushing it further.
In 2003, with much trepidation, I got involved with some activism for the first time in nearly two years. It was scary, and I had to be very careful, as there's nothing like activism in my life to suck me in and end up with me chucking all my boundaries out the window. I found it helpful to tell people upfront about my health condition, to explain in advance why I had to set strict boundaries. No one should have to justify their own boundaries, but I felt better when I told my colleagues in advance.
Gradually over this period of years, the "crashes" became less frequent and of less duration, my energy gradually returned, and my pain lessened to a more manageable level.
The condition is still there. And if I ever pretend it's not - do too much, don't get enough rest - my body gives me a blunt reminder. But now I can accept my limitations. I enjoy what I have.
