A few months after I was diagnosed with fibromyalgia I took my rheumatologist’s advice and reluctantly attended the fibro program in London, Ontario. During those four weeks I learned about self-management, but it was up to me to use the tools I’d been introduced to. That was in 2002.
I returned home and fell back into bad habits. I spent too much time in bed and didn’t do enough physical activity.
When I went to my health care appointments I was too dependent on my husband’s support. I was overwhelmed applying for pension benefits. Trying to maneuver the detailed, dehumanizing and drawn out minefield of government and insurance claims was too much to handle.
My family needed me, but I had little to give. My nine-year-old son had homework and a social life, but he likely only remembers me lying in bed. My daughter was busy at school, work and filling out applications for university. Her excitement was overshadowed by me whining about how bad I was feeling.
The only family member that really seemed to enjoy my company was the dog Ozzy.
Things needed to change. I knew what I had to do! Start to take back control of my life! This was going to require a lot of effort on my part, but I was confident I could do it.
The great Dolly Parton is quoted as saying “If you don’t like the road you’re walking, start paving another one.” And that’s what I did.
I implemented these 3 principles
- Manage symptoms
I took an audit and decided which areas required change. My medications needed review. I believed I was overmedicated. I felt foggy all of the time and I had gained a lot of weight. So, I put that on a list of things to do. I would talk to my psychiatrist about discontinuing some of my medications and decreasing others.
Fatigue was another problem. I started spending less time in bed and more time doing household chores and errands. I also made sure to do exercise each day…stretches, strengthening and walking. Small steps but nevertheless an improvement to what I had been doing.
Endless forms and paperwork were required for my pension applications. Once I was less fatigued and more clear headed I felt more included in the process. I made more of my own phone calls and advocated for myself.
I decreased my anxiety using deep breathing and relaxation therapy. I was then better able to deal with stress and uncertainty.
I used positive language. Instead of problems, I viewed them as challenges. I referred to fibromyalgia as a condition rather than an illness. Thinking with positivity and speaking with positive language was more pleasant and less depressing.
Positive people made me feel better. So, I surrounded myself with people that were good for the spirit. Those who were supportive and kind to me were part of my inner circle.
I spent time talking with my children about my condition. They asked questions and I answered them the best way I could. This calmed their fears and they felt they could come to me with questions any time they wanted to.
Some relationships remained strained. My spouse and I tried to talk, but things were difficult. I appreciated all he had done for me, but I don’t think he understood that. At least we were communicating more.
All of this helped me to take control of my chronic illness. I realized that self-management was a necessity and not an option. This was how I could live a productive life!
Each day I take stock and ask myself “what do I need to do to manage my symptoms, what’s on my list of things to do, and what am I thankful for?” It’s worked for me most of the time over the past sixteen years. I am confident you can be successful also with time, patience and practice.
When you were diagnosed with a chronic illness did you feel like you were losing control of your life?