Unpredictable

I think one of the hardest things about the illness is that it is unpredictable. It comes and goes in waves, and there is never a good way to tell just when it will strike. I'm not the only one who feels this way; other people with JDM have said as much.

A year ago I was doing a lot better than I am now. I was starting to think about what I'd like to do if I continued to improve. But improvement wasn't to be. The illness struck hard again and at the moment I'm lucky if I have a few days away from the house in a week.

I've gotten a lot of slack through the years because people will see one day a week and assume by that one day that it means the disease isn't active. What they don't see are those days that I struggle to do the simplest things. They can't see that even on days when I look and act like things are fine, I am often times in some pain, if not a lot of pain.

I've had people ask me how I really can keep going on if I hurt so bad. The answer is simple: I have to. I have no choice. I can't just give up; to give up would mean I would just give up and die. I have JDM, but it doesn't have me.