A few months ago rheumatoidarthritis.net compiled the results of their RA in America 2016 survey. Surveys like this are so important, especially for those of us living with rheumatoid arthritis. In the same way that reading about the experiences of others with RA helps us to know that we are not alone, understanding how others are coping and faring on a daily basis helps us to see if there are areas we can work on as well as areas that we are doing just fine. One finding from the study that stood out to me was the fact that less than 1/3 of the respondents had a “flare action plan.” The first thing I thought when I read that was, “What a good idea!” The second thought I had was, “What is mine?” Over the years I’ve put together what I call a “pain toolbox,” which has all the things I know help my pain, and I dig into it almost every day of my life. But a flare action plan was not something I’d been thinking about until very recently, and only because my flares had become a bit more predictable. For some reason my body flares about a week after my infusion, and because I know this I have been starting to plan my life around my flares.
Updating my plan…
However, my plan so far has been a pretty loose one- basically, on the days I know I’ll be flaring I make sure I have a good book and very little on my schedule. After reading the survey results, however, I decided that I need to work on my plan if only to see if having one makes any difference.
My plan now looks like this:
- When I can feel my body beginning to flare I immediately begin to cancel non-essential plans and delegate as many duties as I can.
- I add rest to my day so that I don’t get over-tired and end up not sleeping.
- I make sure that I have food in the house that is easy to prepare, and if I don’t my husband is on cooking duty.
- I begin to do everything I can to reduce my pain level.
- I focus on spending at least part of the time I’m flaring doing something that makes me happy. Where I’m flaring will dictate what I do. A few months ago I was able to spend time painting but during the next flare that was too painful so I spent my time reading and learning on my laptop.
It’s a start.
I know over time I’ll be adding to this list but for now, I’m seeing that I have a solid foundation because I’ve started to use my plan, and I’m already noticing a few things. Having a plan means I’m being pro-active instead of reactive and this helps my state of mind when my body starts flaring. Instead of immediately feeling frustrated and anxious at the beginning of a flare, I am focusing on what to do. I can’t say that my flares are lightening up now that I have a plan, but I can say that I’m less uncomfortable during them because I’m not fighting what I’m feeling; instead I’m caring for myself which does make a big difference in the moment.
Having a plan for my flares also, in a small way, helps me to accept my reality, and this may be the biggest gift of all. Most of us have a hard time accepting a life of pain and dysfunction, and for me, acceptance has been the hardest internal battle I’ve fought. I’ve always battled between acceptance and the feeling of “giving up,” something I’ve vowed never to do. But I’ve also known that not accepting my reality has made it much tougher. Having a plan for flares has been a really healthy way for me to move into acceptance without the hopelessness that I’ve felt before. If I’ve learned anything from living with pain for over four decades, it is that feeling good mentally is the most important thing you can do to live well with pain. So far, having a flare action plan has strengthened my mindset, and for me, that makes it one of the more worthwhile things I’ve done all year.