My Life on Lupus: Perpetual Insomniac

If you knew what time it was, you’d know that I shouldn’t be awake writing this. My sleep schedule is a mess. Somehow, unless I’m about to pass out from fatigue, I always get a surge of anxiety right when my head hits the pillow. I’ve heard tell that anxiety and lupus fatigue go together sometimes. I believe it.

Or maybe I’m just a workaholic. For the past couple of weeks, I’ve been trying to organize my life better. I’ve always kept track of my appointment schedules in my head, but now that I’m an Old Coot (and don’t sleep particularly well, either), I’ve been messing things up, forgetting what I’m supposed to do, angsting about all the things I must do, and then playing stupid computer games long into the night, until all my tasks sink into oblivion. If I go to sleep without my daily hit of oblivion, the anxiety rears its ugly head. All I have to do. All I haven’t done with my life. All I should be doing to, say, get a work-at-home job. All I must be doing to take care of myself. Must, must, must. It’s a painful thing.

Then, there are the times when my body aches all over. My calves, my ankles, my elbows, my wrists. The tendons in my knees feel like little gnomes are pinching the hell out of them. My feet are especially susceptible. I have bumps and lumps that gnaw. My arches are almost always little beds of fiery pain. There’s bursitis in my hips, too. Consarnit. I hate sounding like an 80-year-old woman.

Then there’s the ruminating, and the weighing. The wondering if I should take an extra anti-anxiety pill, but will that make me foggy tomorrow? Or a drug-dependent freak?

In my ruminating moods, I get hung up on morbid topics. Recently, I watched the documentary “There’s Something Wrong with Aunt Diane,” about Diane Schuler, the Perfect Mom and well-respected executive at a cable company who in 2009 drove 70 miles per hour the wrong way up the Taconic State Parkway, crashed head-on into an SUV, and killed herself, her 2-year-old daughter, her three nieces, all of whom were under age 9, and the three men in the SUV she collided with. No one knew what happened until the toxicology report came back: she had the equivalent of ten drinks in her system as well as THC, the active ingredient in pot. Her husband flat-out said this was untrue and that the lab made a mistake, but an independent lab test that he himself authorized showed the same thing. The story is chilling. No one knows what the hell happened, why this Perfect Mom drank and smoked pot with her kids in the car. By the time she was driving herself and a van full of children to their deaths, she was probably operating under some drug-induced blackout. But we’ll probably never know the answer. I want to know the answer. I’ve been thinking about this for days.

Why does this matter now, six years after the event? Because my brain latched onto it and won’t let go. Because I’d rather think about someone else’s horrible trauma than ponder my own existence, sitting at home most days, sick half the time, trying to find a way to get myself a telecommuting job I won’t hate. Must get myself out there. Must start writing more. Must be a good mother and wife. Must clean my house, which now has one or more mice skittering around in it. Must, must, must.



4 responses to “My Life on Lupus: Perpetual Insomniac

  1. In so sorry about your insomnia (sometimes painsomnia). I totally get what your saying! I’m in San Antonio w/my husband right now and, yes, I’m having to be the drug-dependent freak to enjoy this little trip, but sometimes we’ve gotta do what we’ve gotta do to make it through the day.
    Hugs and spoons to you!
    P.S. Buenos Dias! Looked for Pedro and Inez at the Alamo. Still no basement.

    • Thanks so much! Yeah, you’re right. We do have to juggle less-than-ideal options sometimes, especially when we want to do something other than sit at home. San Antonio sounds great. Never been there myself, but I’d go for Pedro and Inez in a heartbeat. (Or some really good Tex-Mex food. Not so many options in the Northeastern ‘Burbs.) Enjoy the trip!!

    • Thanks so much! Your blog is gorgeous, by the way. I’m so impressed. And hang in there with the prednisone, etc. It’s all a pain, but you’re here and you’re taking care of yourself. Puffy cheeks come and go, but you’re still the same beautiful person. I think all of us with chronic illness have to remember that.

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