My Life on Lupus: Muddling Through

I prithee, give me leave to curse awhile.

–Joan La Pucelle, from Henry VI Part 1, Act 5 Scene 3

This weekend was my son’s seventh birthday. It was also a weekend when my mother was in town, and since we had a live-in babysitter for several days, my husband and I went out to fun, grown-up events twice in two days. These weren’t rugged, outdoorsy kinds of events, mind you. We were sitting and watching and enjoying being hip. cultural citizens of the world, rather than the parents of a small child who starts wailing like he’s witnessing Gotterdamerung whenever he hits a tricky spot in a video game. Even so–even though the Inspector and I got to spend a good chunk of two days doing what we wanted to do, as well as another good chunk celebrating the birth of our beautiful little boy, who’s the sunny center of our lives and our pride and joy. despite not being able to handle frustration particularly well–even with all of these wonderful things going on in my life, by the end of Sunday my body had had enough of all that life-affirming activity and drove me straight into bed at around 7:00.

Yesterday, all day, I felt like crap.

Today, I felt like crap when I moved around and like a lazy ass when I sat still.

I knew this crash would come, because it always does. I can trick myself into thinking I can push myself a little further. I’m doing something I love with the people I love. I’m living my life for me, and I’m happy about it. But always, always, in a day or two I’m back to lying around the house, surfing the Interwebs, without the energy to transcribe words from brain to page, even, and without any patience for my pathetically slow healing process.

This is what having a chronic illness is like for me these days. You try to do things that make you happy, and you wind up feeling like shit. If you’re like me, you wind up castigating yourself for attempting to go out and make yourself happy, because you know damn well you can dream your dreamy dreams about having a job, going to the grocery store, volunteering, or doing any of the rest of the things that normal people (even normal older people, like my mother) do with themselves, but at the end of the day you can’t sustain any real level of activity and you shouldn’t kid yourself.

And if you think that’s a prescription for feeling depressed and anxious about your life, you’re right.

A couple of weeks ago, Sarah Cowherd posted this article about living with autonomic dysfunction that does a good job of summing up how chronic illness messes not only with your physical function but with your identity. In fact, her story sounded so familiar the first time I read it that I took a few minutes to research the symptoms and causes of autonomic dysfunction to see if I might be a sufferer, too. One thing that happens when you’re stuck in the limbo of chronic illness, living with a malfunctioning body day after day: you check to make sure your symptoms don’t match some other malady you never considered before, because there might be some better way of dealing with all your crap symptoms to make your life approach normal. After all, so many people with chronic conditions, if they don’t start out with a “constellation” of problems, discover new ones that get sucked into orbit by the gravity of their disorders. Just recently, my rheumatologist off-handedly remarked that I fit the profile for Sjogren’s syndrome, an autoimmune disorder that causes dry eyes, dry mouth, joint pain, fatigue (of course), and a whole bunch of other lovely malfunctions that I try not to think about because it makes me too conscious of how breakable our bodies are. But there’s always that glimmer of hope that you haven’t been doing everything in your power to fix yourself, and if you have a different disorder than the one you started out with, there’s always a teensy sliver of a chance that some ridiculously easy treatment will make you bounce back to life lickety-split.

Or so my overactive imagination tells me.

That’s not the way life works, of course. Take my new problem, Sjogren’s: since there isn’t much known about autoimmune diseases, there’s not a lot to be done to treat Sjogren’s syndrome apart from slathering goo on dry places and taking meds I already take for my lupus. Turns out there’s no easy or straightforward treatment regimen for autonomic dysfunction, either (at least according to Wikipedia), so even if that were my problem I’d wind up in the same place I began if I went out seeking a diagnosis.

See how chronic illness leads you around in tiny, inescapable circles? See how the hopefulness of human life can get crushed by a disease state that forces you to into a sub-functional existence?

For a while now, I’ve considered chronic illness a distinctly modern dilemma. Were it not for all the wonderful scientific breakthroughs of the last century, many of us wouldn’t have survived as long as we have. And yet, when people have acute illnesses, they’re either swept away from life or they recover and move on. Chronic illness doesn’t let you do that. It toys with you. Lets you think you can climb mountains one day then sends an invisible Mack truck to run you over the next. That’s why depression and anxiety creep into the minds of chronically ill patients: all three ailments feed on mental and physical stagnation. (Witness how physical problems contributed to the deaths of Spalding Gray and Kurt Cobain.) Sometimes, I wonder if the key to living life with a chronic illness is to accept the fact that your life isn’t going to be perfect, and to get through sometimes you have to muddle through.

On Sunday, I spent most of the evening in bed, even though I wasn’t sleeping. My fatigue was shot through with pain, which kept me just beyond the point that I could peacefully drift off.

Yesterday, I spent the day feeling like someone had shot giant holes into my stomach. It hurt to sit up. It hurt to lie down. Because of the weather, the house started warming up, and when that happens I also have problems sleeping because I have no tolerance for temperature changes, either. Sometime in the middle of the night, my husband valiantly got out of bed and put the a/c unit in our window.

This morning, my upper arm muscles hurt (as weird as that sounds), and so I woke up earlier than I wanted to, and had a slap-down, drag-out fight with pain and cold (because the a/c was on, and because cold bothers me even more than heat does). That lasted a couple of hours, and then I drifted off, and I woke up much later than I intended.

And you know what? I didn’t give a shit that I slept in too late, or that I had a giant sugar cookie last night before I went to sleep, to wipe the horrible taste of Tums out of my mouth. (Yeah, I’m dealing with GI issues, too.) Because I’d rather be fat and lazy and muddle through than try to live a pristine life and suffer.

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2 responses to “My Life on Lupus: Muddling Through

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