Day by Day

It’s a bad day today. What I mean about that is it’s a flare-up day. I enjoyed the sun too long on the day of the eclipse and it’s catching up with me. Lupus should have been named after a vampire the way we react to the sun: rashes, fatigue, full flare-ups. Sun screen doesn’t even help most of the time. So how do I feel today other than the generic “crap”.

When I have one of these brief flare-ups it takes about two days to get going. The first day starts with some minor aches and pains. Nothing that I can’t handle. I managed to push through, go food shopping and lug all my groceries upstairs. But today, today is one of those days I hate. I’m falling asleep in mid-conversation. Getting out of bed feels like too much work. Even typing this feels like too much effort, but I wanted to write exactly what happens as it’s happening. What does Lupus feel like…

1. So little energy that lifting limbs feels like you are lifting 100lb weights. Your very breathing is tired and shallow. And it feels like you just don’t get enough air in to your lungs to sustain yourself, so you yawn—a natural gasp for air. Muscles simply don’t work the way they should—they burn, they weaken, they sleep. And when they sleep, you sleep. 2. I eat whatever sweets I find. As if my body is trying desperately to find something to wake itself up. But of course such an instinct does nothing but make me fatter than I already am. So I try to fight it and just drink water. 3. Then comes the joint pain. It starts off subtle at first. An ache here and there. Yesterday it was stiffness in my toes, then gradually my feet. By bedtime, my feet had become so painful, I couldn’t rest them on the bed. Today it’s the feet, hips, and back. Even the fingers hurt. I’ll be rubbing Voltaran gel on them.

What happens when this all occurs: Nothing. Therein lies the problem. When I get hit with these flare-ups all I can do is sleep. Showering becomes work and the idea I have to go out today to the pharmacy is overwhelming.

Disease isn’t just a word and a constellation of symptoms. It’s people. People having to cope day in and day out with symptoms; having to figure out how to negotiate day-to-day activities even while in pain or weakness... When you are on the outside looking in, it’s easy to forget that it’s a constant experience.