The Frustration of "Can't"
I was raised primarily by a single working mom who was gone a lot and at strange hours, so I took charge of my life at a young age. This created a strong independent streak that served me well in my later professional career as I was given responsibility for major projects that required self-motivation and creative thinking.
Before then, however, I was considered a pretty “willful” child by my relatives and teachers. I learned quickly that it was often easier to ask for forgiveness than beg for permission. Having someone tell me I couldn’t do something usually resulted in distress on both sides of the conversation. The word “can’t” didn’t (and still doesn’t) fit well into my vocabulary. (It is, after all, a four-letter word.)
I was once given a challenging new assignment and a friend asked me if I had ever done anything like it before. I replied, “Just because I’ve never done it doesn’t mean that I can’t do it.”
How RA affects functional ability
You can imagine my profound frustration, then, as I’m finding out there are things I really can’t do because I have RA.
There are the big things, of course. I can’t work full-time any more. I love to travel and, while I still manage some of that, I have to factor in “rest days” and schedule trips around infusion appointments.
The smaller things are just as, if not, more frustrating. I can’t always do stairs. I’m lucky if I cook one batch of soup on a Sunday instead of the two or three I used to do. There are some days I can’t even get out of bed.
RA symptoms remind me of what I can and can't do
And, unfortunately, RA does not negotiate. There is no asking forgiveness – or for that matter, asking permission. If I overdo, overeat, over travel, or “over” almost anything, RA has some pretty painful ways of reminding me what the rules are. Swollen joints, an aching body and mind-numbing fatigue are sure to follow any indiscretions on my part.
Depression and RA: what is the link?
While I haven’t found any hard data on the connection between frustration and depression, there is a large amount of evidence that they are strongly linked. And while I believe frustration can make RA worse because, among other things, it triggers stress hormones, if it leads to depression, it can be even more serious. According to the National Alliance on Mental Illness, “Someone who has depression and chronic illness may be less likely to adhere to treatment, and more likely to smoke, drink alcohol, eat poorly and neglect physical activity. All of these behaviors can lead to poorer outcomes.”
So what do I do? I have to admit I’m not real good at being good. I still push the boundaries. And, if I know I’m going to do it, I at least try to prepare by doing those things I know will help. For example, eating and sleeping well before a trip. If I’m going to be traveling for several days, with my doctor’s permission, I take a short-term, low dose of prednisone.
But more than anything, I remind myself that I can still do more things than I can’t and, for now at least, I’m going to do as many of those things as I can.
Right now, what RA tips would most be helpful for you?