AaaaaHHH! Bright light!

I wrote the other day about lupus affecting my skin. To give you a glimpse of what it's like, think of your favorite hangout. Did you think of the library? The bookstore? A coffee shop? A park? The beach? The gym? Yoga class? Imagine not being able to take your favorite yoga class or hang out at your favorite park or library. I can hang out in exactly none of those places without feeling the effects. Either big windows or fluorescent lighting induces a panic attack, which then brings on a painful hot flash. Later, I get a headache. Grocery shopping? In and out. Picking up a library book? In and out. Getting my hair cut? Suck it up, buttercup.

They do make sleeves that block the UV rays of fluorescent lights, but they are not cheap. When I went to seminary, I required them. Even with them, it was a slog I couldn’t have gotten through without daily prednisone. I will be studying again soon, but it will be online; the same way I finished by BA. Getting a PhD? Most likely out of the question.

Are you wondering what my house looks like inside? Curtains, fabric, and shades covering almost every window. There is a bonus; in summer it helps keep the house cool. I peek out the windows a lot, so I know what I’m missing. Without my favorite sunscreen, my flares would be worse than they already are.

As you can imagine, this makes exercise difficult in summer. My spouse exercises daily and it’s a weird feeling wanting to both go and stay. Local field house gym is fluorescently lit and the UV count is high these days. Usually, self-preservation kicks in and I stay. I like to educate people by telling them I estivate (the summer equivalent of hibernate). Luckily, the rest of the year, it’s not so bad. Yet, I cannot go to church, meetings, or dinner with friends and family without pre-planning. (Blogger had an issue with 'pre-planning;' it suggested 'pee-planning' instead.) Often, that includes making sure I have no obligations the next day, just in case.

I'm healthy for a sick person. Because I am so healthy, I think even my spouse forgets sometimes. It took my family a long time to come around to accepting that I was neither faking nor a hypochondriac. On days when I’m feeling well, even I can briefly forget that I’m still a sick person.