Over the years after the diagnosis, even though I was finally at peace, knowing that I had a legitimate illness and it was not “all in my head” as I had been told repeatedly by doctors, therapists, etc….it was still a rough time. I was on a search to learn how to live with my disease. At that time, back in the early 1980’s, even though fibromyalgia had growing credibility, it was still a very controversial topic among medical professionals. I encountered so many doctors that would give me a sarcastic smirk or a smug rolling of the eyes when I told them I had fibromyalgia. Even though I still felt belittled, ridiculed, and like a neurotic woman with hypochondria, I knew that what I had was real and the pain was intense. I tried to find a regular doctor besides my rheumatologist, for the usual garden-variety medical needs that everyone has from time to time, but I wanted one that understood fibro and also one that believed in it and knew it was a valid disease.
Larry and I learned to live a different lifestyle from the one we had been living before the diagnosis. We moved from Champaign, IL back up near my home town to Peoria, IL and got an apartment there. I was put on some medicine and tried to live as normally as possible, dealing with the pain as best I could. We moved a few more times and finally found a house to buy. Shortly thereafter, he was hired by a nationally known trucking company, to drive local runs instead of cross country runs. We were thrilled….the job paid much better money than he had been making as an owner-operator and he would be home every night instead of only on weekends. It opened up a whole new life for us. We then decided after being together for 10 years, it was time to get married.
We became man and wife on June 5, 1992, in a small ceremony at a tiny wedding chapel out in the country in Groveland, IL. It was perfect.
My pain was still really bad and there was a time when I ended up in bed for an entire year. I was struggling with severe pain and no one would prescribe anything more than anti-depressants or mild pain meds for a short time. It was as if I was being consumed alive by something within me and I was unable to fight it. I was getting the run-around from doctors and again I found that I was not being taken seriously. They did not adequately treat my pain and therefore I ended up bedridden for that year. I only got out of bed to use the bathroom, shower occasionally and eat. Larry had to do all the housework, laundry, cook meals and continue to work at his job. Meanwhile all I had to occupy my mind was television (which I hated) and books (which I loved). But the isolation and the monotony and the pain nearly drove me over the edge. Thoughts of suicide entered my mind on a daily basis. I never expected that anything would change and I was doomed to lay in a bed for the rest of my life in excruciating pain.
Somehow I got in touch with a physical therapist via telephone. To this day I do not remember how we got connected, but he became a lifeline. He gently persuaded me to just “try” to make an attempt to slowly leave my bed and walk through the house a few times a day. Then try to get dressed and sit in my recliner for an hour. Then maybe try a few very gentle stretching exercises. I trusted him….so I did what he asked. Before long, the spell was broken and I was able to get back into the flow of life again. Even though my pain was still strong, I was no longer so afraid of it and realized that I actually felt better when I was moving rather than laying in bed 24 hours a day. I felt like I had been set free.
After I finally got myself out of my bedridden state, we settled in to our lives, and I lived with the fluctuations of the intensity of the pain from day to day. I tried all sorts of different things to reduce my pain levels. I went to arthritis warm-water exercise classes, I walked a walking trail behind one of the hospitals in town, I even did step-aerobics for a time and ended up losing 20 lbs. My pain was becoming a little more manageable, or perhaps I was just only getting used to it. By that time I had been in pain for over 10 years.