Many people with CRPS experience a constant burning sensation in their affected CRPS areas. My CRPS areas are cold to the touch and feel as if I’m being burned with liquid nitrogen. A constant cold burn.
During my diagnostic period and start of treatment I was on short-term disability, unable to function from the pain. The past few months I’ve returned to work, first four hours a day then six. There has been mixed reactions and levels of understanding from those around me. I tend to be lighthearted about my disease and limitations. It’s part of coping. I like to joke with my great-grandma, whom is 87, that I am using a cane before her (she doesn’t find this funny, but I do). But, it’s hard when I’m told by those around me they would like to switch with me and have two hours “off”.
On my time “off”, after work and on weekends, has not been filled with hobbies and fun times.
I’ve been advocating for my health. Making phone call after phone call. I spend hours calling my insurance companies to get my treatments covered. I make calls to doctors’ offices begging to be treated or even to be seen. I spend time researching the latest and greatest in CRPS care.
I’m learning ways to cope. Ways to get through the next day, the next week. I make time to recover from the brain fog that has increased since returning to work. For me, brain fog recovery includes critter cuddles, mindless tv watching or resting on the couch. On days where fatigue is too much to bear I remind myself that it’s okay to spend time taking care of myself resting or napping. On flare days or when I can feel a flare starting I have learned to not push myself. To rest.
Initially I had found it difficult to maintain anti-inflammatory eating habits especially when I was exhausted, stressed, or in too much pain. Planning a loose menu for myself ahead of time has helped as well as cooking or preparing meals/snacks during good days. This deviation from anti-inflammation inducing foods further proved to me how much diet plays a role in my disease.
I’m learning with chronic care that it is many little things and not just one solution that makes me feel “okay”.
Since returning to work it’s taken a few months to not feel overwhelmed balancing work, my health, and daily household activities. Not to mention the added “fun” events in life. It has gotten easier as the weeks have passed. But, I’ve found the daily fulfillment I get from doing the work that I love worth all of it.