The cold, creeping damp. Wearing socks in what should be sockless weather. Getting sick with a cough for two weeks. Green phlegm. My son getting sick. My husband getting sick.
My husband home sick on my birthday.
My birthday. My son’s birthday. My son’s birthday party at one of his favorite local party venues. Realizing that in a couple of years–if not sooner–he’s going to outgrow his favorite local party venue. Realizing the days are long but the years are short.
Eating enchiladas for my birthday, even though I’m getting a cough and my husband is sick in the cold, creeping damp. Wishing I’d gotten a margarita, too.
The farm. Taking my mother to the farm. Traveling with goats in the pouring rain. Being entranced by a farm equipment museum, possibly because it was raining. Watching the nanny goat and her kids huddle under a tree to keep dry.
Exhaustion several days running. A lost day or two. Walking in a mental mist from one activity to the next. Losing track of days and tasks. Losing the desire to speak or write anything down. Keeping communications to small packets of words doled out only when necessary. Investing a lot of time in coloring.
Losing track of who the hell I am anymore. Realizing that these days, most of the time, I’d much rather be learning to draw trees.
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.
Today I felt less foggy than usual. The sun was shining. That always helps, plus the knowledge that we’ve gotten over the holidays and (more importantly) the Winter Solstice. The season is on the upswing. The days are getting longer. Warm weather is just around the bend.
Today I saw four or five fat robins flitting around our backyard. They kept leaping up and pecking some invisible seed or bud off the naked branches of an unruly bush. My mother always thinks the first sighting of a robin is the first sign of spring. I don’t know that the robins ever leave us now, what with global warming and all. Last week when it snowed, I saw a little group–probably the same birds–across the street in a neighbor’s yard. They were scratching at the frozen ground, looking dazed.
The world feels a little happier now that the robins are leaping for their meals.
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.
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.
One more note for today: my post on me shredding myself with too much beach-going found its way into the leisure section of Life With Lupus, an online newsletter packed with info on lupus and related chronic illnesses. Thanks to Miss Anne-Marie for passing along my meandering thoughts to the outside world!!!