In August I had the amazing opportunity to attend an arthritis bloggers event in Toronto called ARTHfully Living. It was a lovely occasion to meet other bloggers, and learn how they advocate and cope with the challenges of their own illness. It was also an opportunity to meet new friends and acquire new revelations in writing about our experience.
During a question and answer period with a rheumatologist about the gaps in patient care, one of the bloggers told us how she charted everything about her disease. She wrote down every symptom, from fatigue to flares, energy and how she was coping emotionally. She then makes copies of her accounts and takes them to her appointments so that she doesn’t forget information that might be important for treating her condition. She also brings an extra copy for her medical chart. I remember thinking it was a brilliant idea – and then, 48 hours of jet lag later, I forgot all about it, caught up in the chaos of returning to my life. A few weeks ago, I visited a locum doctor who was covering for my regular specialist while he was on vacation; this wonderful young rheumatologist suggested I chart my symptoms so I could trace the severity of my bad days. It reminded me of that young lady who recorded every aspect of her health. As it turned out, I was to increase my medication, and the very next day, I began to chart my own health. I used a rating system of 0-10 (0 being the best, 10 being the worst). I rated my fatigue, swelling, pain, and stiffness – I also made note of how long the stiffness would last on any given day. I was empowered. I imagined myself marching into my next appointment with a thrilling novella on my arthritic life. This practical ambition fizzled out after ten days….my budding novella was much closer to flash fiction.
I think it’s a great idea to track your symptoms if you can muster the discipline to follow a regular practice – and I applaud that young lady for having the tenacity to persist in keeping track of her health. I’m still making notes every now and then, trying to stabilize my slapdash habits.