Having a disease as unpredictable as rheumatoid arthritis, I often feel a sense of uncertainty. I never know exactly when RA will strike. There are times when a flare follows a known trigger, such as weather changes or overexerting myself. However, other times I’m completely caught off guard by a flare. In addition, the severity of the condition can vary significantly. Sometimes a flare lasts days, other times it lasts for weeks. There are nights where I feel rotten but wake up feeling fairly good, and there are pain-free evenings that are followed by intense discomfort the next morning. In addition, there are the “get out of flare free” times, when I expect to pay for an evening out or a completed project with an increase in pain and inflammation, but I’m pleasantly surprised to feel okay afterwards.
While I’ll take fluctuating symptoms over persistently agonizing symptoms any day, the uncertainty itself can be uncomfortable. For instance, I’ve recently been in a flare that lasted two weeks. During that time, I had to cancel several plans and postpone commitments. Now I’m feeling pretty good, and once again have the energy to want to socialize, but after cancelling so many plans I’ve felt too nervous to make new ones. I figure I’ll give myself a few more days of feeling better, and then will start making a few plans again. I want to do this with more spontaneity, so that I’m only planning for the very-near future, rather than days or weeks away, when the uncertainty of how I’ll feel increases. Even when I make plans for the next day, I still feel the need to add the “if I’m still feeling well” caveat.
I also feel tentative when trying out a new activity. It can be hard to tell whether something I’ve never done before is going to lead to increased inflammation. My five-year old daughter and I were working on a needlepoint craft she was given as a gift, and as soon as my fingers started to ache I decided to cease the repetitive motion. In these situations, it’s impossible to tell whether the ache will stay at a mild level, or if the next day I’ll be faced with an “activity hangover.” Fortunately I was able to do the project long enough to instruct my daughter how to do it, so perhaps this sense of uncertainty about my own physical capabilities will lead my children to develop greater skillfulness and independence than they would with a healthier mom.
Sometimes even my actions are tentative. I was at an inflatables place with my kids, and they wanted me to go in a bouncy house with them. I felt well enough to enter, but I was nervous to really jump and run around, not sure whether this would jar my knees and hips. So instead I stayed on my knees and bounced a little from this more guarded position. This is also the case when my kids want me to run around with them on solid ground. If I’m feeling well, I might pick up my pace to a trot as I chase them, but I don’t break into a full run. The uncertainty of how my body will respond to intense activity keeps me from pushing my own personal gas pedal all the way to the floor.
This sense of uncertainty sometimes leaves me feeling like I’m sticking one toe in this pool of life, rather than diving right in. Easing myself into an activity can be more comfortable than taking a cannonball approach. Sometimes I miss the boldness with which I approached life before RA hit me full force. That being said, every now and again there are times when I do charge ahead with big plans. Sometimes I end up regretting it, like a painful belly flop. Yet, there are things I’ve done in the past few years, such as travelling through Germany with my two small children, which were well worth the risk of a flare. In retrospect, these rare moments are like a well-performed jack-knife, graceful and elegant. They may not happen often, but when all the circumstances align to allow me to fully take part in something I care about, it’s completely refreshing and exhilarating.