My Life on Lupus: Dreaming of Mice

Boy, how do I describe a set of days with lupus? Despite the fact that there are a lot of bloggers out there talking about a lot of chronic conditions, I have a hard time focusing on a storyline or a metaphor. Not even the wolf or Christine Miserandino’s spoon analogy does it for me. Maybe it’s because I’m a hardened loner and would rather come up with my own metaphors, thank you very much. (Although the spoons are really as good as anything I’ve found to explain the ups and downs of trying to manage an illness like lupus.) Maybe on bad days I’d rather be escaping my fatigue and aches and gloomy moods than trying to craft them into an overriding conceit that can help me weather things out. When I feel crappy, knowing why I feel crappy doesn’t help much. I want away from all the dreariness. I want constant entertainment and mental stimulation to keep my mind off things. I don’t want to feel like I’m stuck indefinitely at home, even when I am.

So ultimately what happens is, I sense my lupus in little bits and fragments, lonely and discontinuous from my functioning life. For example, starting Friday of last week, for about 36 hours, I was sleeping off some sort of bug I caught at my therapist’s office. (No, really, I started feeling dizzy and strange as I sat in the chair with my therapist. I’m guessing the germs found their way there because she and her group charge an exorbitant late cancellation fee, so any sick people show up rather than pay. I myself was charged said fee because the week before, I was also sick. Ironically, as the receptionist is telling me I owe them a huge sum of money for not bringing my germs to their office, she’s also asking me if I’ve been to West Africa recently. I wonder if I’d said yes, they would have charged me a late cancellation fee.)

Sleeping for two days is actually kind of nice, because you can just drift away and not worry about the usual concerns, the laundry, the appointments, the house falling to pieces around you. On Sunday, though, you’re starting to move around again, going back to normal life. And like a diver returning to the surface, who has to move through layers of water pressure to get acclimated, I move through waves of anxiety and crabbiness as I realize everything I have to deal with is still there waiting, even though I never quite have enough physical or mental energy to engage with it. I guess that would be a difference between lupus and deep-sea diving: when you go back to Life on the Surface from the midnight zone, you’re never 100% ready for the light.

So Sunday was a halfway-crappy day. There was sunshine I missed. There was work I had to stay up late to do. Then Monday rolled around, with 70-degree temperatures–real collegiate weather, and likely the last of the warm stuff for quite a while. Even though Sunday night’s sleep wasn’t long, I’d banked a lot of shuteye already, and I felt amazing. I had errands to run, but I decided, screw it, I feel like exploring. Recently, I’ve been looking at a lot of old pictures online, so I thought, why not try to find some old postcards? I hit the local antique stores and thrift shops. Didn’t find any postcards, but I did collect a whole bunch of lovely little knickknacks: a set of Tupperware cups, in neon colors, that looked like the kind I used to drink from when I was a kid; a watch that runs on old-fashioned winding; two Choose-Your-Own-Adventure books from the 1980s; an old British version of Monopoly Jr. I went to four stores and spent about $10 total. Felt awesome. Picked up my six-year-old from school, where he’d just had his science-club class and was full of stories. Life seemed tremendous. I couldn’t see how I’d ever be blue again.

Then today arrives. The temperature drops. I don’t get any sleep last night, either, so I have to nap so I can function. Wake up in a sludgy fog. Can’t get going. Don’t like being cold and stiff. Have to go to the drug store and explain for the umpteenth time how to fill one of my prescriptions, which comes in a nonstandard dose but which I’ve taken since 1998 (and have been filling at this same pharmacy since 2003). I get things done, but not as much as I want. (It’s never as much as I want, except for yesterday, when the sun was shining and I felt like I had infinite time on my hands.) Feel depressed. I know it’s because of the winter coming on, and I can’t really fight that.

Either during the night or during the morning nap, I have a terrible mouse dream. I have these off and on, even when the little bastards aren’t sneaking into the house to get warm and shooting across our floors. In the dream, a mouse pops into our well-lit living room–the first mouse I’ve seen in several days. I tell my husband, I try to show him. Then I realize there’s a hole in the wall that the mouse is not only escaping through, but building as I watch. It exits out another hole, one that I haven’t seen. Then, a huge swarm of mice starts pouring out of the second hole, more than I’ve ever seen in our house, more than I’ve seen anywhere. I’m sick to my stomach. I can’t even look at them. I’m yelling for my husband to do something, but I’ve willed myself not to see anything. I can’t help. I can’t do anything besides squirm.

Honestly, I don’t know what the mouse dreams mean. This latest dream was unusual, in that my husband was there with me. Most of the time, I have to go up into a room on a higher floor, in our decrepit house (sometimes it’s a rental), and I know the mice will be in there, everywhere, and I’ll barely be able to walk. I don’t know if this is some sort of subconscious commentary on my physical state, my chronic illness, my overall lunacy, or none of the above. I doubt if I can use mice in a metaphor for lupus. Seems important, but the whole mouse thing disgusts me so much I refuse to consider considering it.

Today, in the mail, I got a light therapy box, something that my psychiatrist (who works in the same office as my therapist) has been pushing me to get for a while. We’ll see if I can stave off the gloominess this winter. Otherwise, it’s going to be another long one.

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Miss Fickle’s Boring-Ass Beach Blog! Part 2: Wherein My Body Rebels

And lo, after four days of merriment and Revelry (Get it?  Revelry?  Cause Inspector Spacetime and I went on a big overnight to the Doomed Revel casino in Atlantic City???), my body goes kaput.  Now, I’m sitting here in our rented beach flat, missing Little Fickle’s first kite-flying expedition, because every time I move around I feel like barfing.  This is what happens when you have a chronic illness. You try to keep up with the crowd, and then your body takes over, tells you it’s had enough, and instantly you become an 80-year-old housebound recluse.

In the lupus community, there’s a well-known blog post about chronic illness and the “spoons” theory.  The idea is that you start out the day with a number of spoons, with spoons representing the energy you have that day.  People, especially Young’uns, with no health problems have a virtually unlimited number of spoons, while lupus patients only have a certain quantity.  Once you spend all your spoons on daily activities (and for Christin Miserandino, the author, getting up and showering already costs you a couple of spoons), you’re done for the day.  You have no energy left.  You have to lie down and sleep for twelve hours.  Or, at least, that’s what happens to me.  I’m an utterly terrible Spooner.  If on some day, I have a mysterious quantity of extra spoons, I’m giddy.  “Yay, spoons!” I think to myself.  “I’m a normal person again!!!”  Then I go out and spend spoons like crazy for a few days at a stretch, and then comes Crash Time, when I lie around Internet surfing and bemoaning my overall uselessness.

Granted, this is not in any way a model for dealing with chronic illness.  I have a mild case of lupus, and for a long time I could skate by on denial.  But now that I’m an old coot and a mom, I can’t do that anymore.  I have to suck it up and admit when my body is frayed.  Also, there’s been a bit of blowback against the Spoons theory: the author of this post–a blogger with the handle “it was lupus,” which if you’re a House fan you gotta love–claims the spoon thing is just a grab for self-pity and a way to rationalize not taking care of yourself particularly well.  Could be.  But then, lupus is also a highly subjective illness.  Symptoms differ from person to person, as well as the psychological impact of those symptoms.  I’m not one to point fingers at who’s right and who’s wrong in dealing with their illness, but if you’re someone like itwaslupus who can juggle all the demands lupus makes of you, and you can still say, “screw you, lupus, I’m not defined by you,” more power to you.  I wish I was still in that camp myself.

Nana Lemon and Grandpa Fickle just came back.  Apparently, tomorrow there’s a 60% chance of rain here in Ocean City.  So there may not be any last-day trip to the beach, which is kinda what I was saving up my Pity Spoons for.  Oh, well.  Can’t push yourself when your body’s already shredded.