Recently I joined a lupus group on Facebook. I haven’t been in a lupus group in several years. It’s really nice. They are the only people who have any clue what I go through with this disease.
We talk about all sorts of things in this group. Lupus can and does affect everything in life, and one subject we discuss quite often is jobs. Either we work and we’re too effing exhausted to do anything else, leaving us vulnerable to lupus flares, or we don’t work and have no money and no insurance and can’t go to the doctor when we get sick, again leaving us vulnerable to lupus flares. There’s no way to win.
As far as my job, I only work part time, which leaves me with little money and no insurance. My dear wolf has a nasty habit of falling asleep at a moment’s notice, and I have yet to find a boss who allows me to take a nap break. If I worked more than 5 hours, I’d get a fifteen break – barely enough time for a little shut eye, even if I could find someplace to sleep. Napping in the break room doesn’t work. I’ve tried. People keep coming in. “Oh, were you asleep? Haha, wish I could take a nap.” If I nap at my desk? “Do you feel alright? Do you want me to walk you down to the nurse’s office?” So forget that. It takes 25 minutes to get from my office to my house, so that’s out, too.
Working full time would give me more money and possibly insurance, but I could never make it through an 8-hour day without a nap. I rarely stay awake for 8 hours straight, even on weekends. Working all day would have the option of taking an hour for lunch, but again, where would I nap? An hour is not enough time to get home, nap, and come back.
And that makes me angry. Why? Because you can find wheelchair ramps, larger bathroom stalls, Braille signs, sign language interpreters, and various other modifications for the handicapped, but you never find cots set up for us exhausted lupies. Seeing the designated areas for cigarette breaks drags my mind into seven different kinds of hell. There is a place set aside to smoke for fun but not one to sleep out of necessity? Why don’t they accommodate our handicap, too? They let guide dogs in, why not lupus dogs? True, I can’t keep mine on a leash, but my wolf never leaves me. I have all my shots, and I promise not to chew up the furniture. I don’t bite, although I do growl once in a while. Mostly I just need a nice comfy corner to curl up in when the need for sleep comes over me. I’ll even bring my own pillow and blankie.
It’s not just work, either. Life in general would be so much easier for me if I could catch a few winks now and then. I could go to conventions, concerts, fairs, and even parties. Maybe I could travel. I could go out and do things instead of staying home so much.
I cannot conform to a human-imposed time schedule anymore. No longer do I sleep 8 hours at night and stay awake 16 hours during the day. The wolf insists I have naps whenever the wolf wants to sleep, and humans lose out to the wolf in pretty much every situation. Life would be easier for me with a pillow and a blankie. Heck, I can do without the pillow if necessary, and even dispense with the blanket if the room is warm enough. But until the powers that be recognize that not everyone sleeps the same, my wolf and I will have to work short hours, avoid conventions, and never again plan to spend all day at the State Fair.
If you ever want to see just how wild a wolf can be, deny me my naps. Make me stay awake long past the point of coherence. Force my wolf into living on a human schedule, and I guarantee someone’s going to get bitten. Hard.
Unfortunately, that someone will be me.