The other day I had a strange allergic reaction to the sun. Earlier in the day, I had stood outside for less than a half-hour, basking in the warm weather, feeling the heat right deep down into my bones. It’s a shame that the medication has negative side effects with the sun—I blew up to the size of a balloon and turned a bright, patchy red all over. And my skin didn’t itch so much as it stung under the surface. The same thing happened over the majority of last summer too, although instead of hives, I ended up with a strange rash where the sunscreen either wore off or I forgot to apply enough.
And then I had a moment of self-pity. One of my favourite things to do in the summer is lay out in the sunshine, all hot and sweaty, wearing enough protection that you don’t burn (and I don’t tan anyway: I go from white to off-white) but still feeling like a sun goddess even if I don’t end up looking like one. I started to be angry with the disease, frustrated that it seems to take all of the things I love to do away from me.
I used to dance when I was a teenager, and then my hip died. And deep down I knew I’d never be a dancer (with shoulders like a brick sh*thouse and a giant ass), just about everything was wrong with me, but I miss the freedom I felt, and I miss the constant movement. Still, in my dreams, I jump around, race about to the music and I still love to go out dancing, but for years my hip prevented me from doing any kind of aerobic exercise.
For a while, I sort of considered myself a not-bad looking girl too. It was funny, we were joking about the peak moments of youth at breakfast a while back, and I sort of half-goofed that I climaxed at 24, 10 years ago now. And then I got mad that the best years of my youth were sort of robbed by the disease too, and I started feeling sorry for myself all over again.
Getting past the negative thinking is the hardest thing to do when it comes to living day-to-day with the disease. Mourning the idea of who I am or what I should be and coping with the reality that my life has turned in a direction I didn’t quite expect. In a few years, I’ll have lived longer with the disease than without, but I still can’t quite bring myself to accept the fact that I can’t do everything I want to do because my body has kind of put a stop to it.
Plus, feeling sorry for myself doesn’t really get me anywhere. It doesn’t get my Page A Day done, it doesn’t get my Summer Reading books finished, and it sure as hell doesn’t make my RRHB’s life any easier. In the end, it gets easier every time the disease flares and now that the meds are actually working, I’m thankful for my life, even if it means staying out of the sun. Hell, it’s better for my skin that way anyway.