Lemon Head

November 13, 2006 at 1:15 pm (Uncategorized)

My head has not been a happy place to be during the past couple of weeks. I feel like I am peering at the world through thick fog. Everything makes me sad, or angry, or sad and angry. My almost three-year old son, Andrew, frays my patience, and the way my husband, Jay, chews his cereal in the morning makes me nearly homicidal. I don’t want to work. I don’t want to exercise. I don’t want to spend time with my friends. Pretty much all I want is to be left alone, preferably in bed, with a stack of trashy magazines and a good pillow to support my sore neck.

Yesterday was a particularly bad day. I somehow directed all of my negative energy onto my husband. I was furious with him the entire day. I picked fights with him over insignificant things. I plotted leaving him and Andrew behind and launching a new life in a small and exceedingly quiet apartment. But forced to remain in our cluttered and loud home, all I could do was glare at my poor husband with cold fury – when he didn’t wring out the sponge, but just tossed it in the kitchen sink, bloated and sodden, to mold; when he did the dishes but didn’t sweep the floor; when he suggested we not buy the tangerines for six dollars at Safeway since they had been four dollars at another store. That last one was the clincher. I stalked out of Safeway so angry that I felt light-headed. “The bastard. How dare he try to control me!” I thought as I started walking up the cold, dark streets towards home. I didn’t even feel guilty for leaving him behind with Andrew when he was sick.

I don’t want to overwhelm you with details from my personal life. I’m not relating this decidedly not-so-pretty episode to extort sympathy. But when I started this blog, I had one overriding goal: to be honest about what life is like in chronic town. When you become chronically ill, you cross over into a world that has all the trappings of the one you’ve left behind. It is inhabited by the same people; you reside in the same place; you pay your bills, fret over your child’s bad behavior, watch the same television shows, and run the vacuum in the same patterns over the same carpet. But everything’s different. Once you become sick, you’re never quite the same person (nor are the people in your life who love you). And this creepy Twilight Zone sensation can make you feel absolutely nuts. In writing this blog, I want to say what other folks in chronic town think to themselves, but don’t quite have the space to speak.

Here’s what’s making me feel crazy lately – I’m getting well, yet the prednisone taper is making me feel physically and mentally ill. My joints ache, and I am more tired than I’ve been since I was diagnosed with sarcoidosis and put on prednisone. I had never realized what false energy that demonic drug gave me. But now that I’m physically withdrawing from it, I am fatigued to my core. I can sleep ten hours a night, and still need a two-hour nap in the afternoon. But worse than the physical discomfort, is the hellhole my rational mind has devolved into on less prednisone. It’s like a constant case of PMS amplified to the Nth degree. Everything makes me angry. Being angry makes me angry. My jaw is permanently clenched in an effort to prevent the bile and vitriol of my mind from spilling out of my mouth. I hadn’t even realized that the decreased dose of prednisone was impacting my mood until my doctor mentioned it. Then it was like one of those cartoon light bulbs went off. “Oh, so that’s why I want to kill everyone I know,” I thought to myself.

However, I do know the moodiness will pass, as will the aches and pains of my body readjusting to life sans corticosteroids. But the ongoing fear and anxiety are another thing. When I was first diagnosed with cardiac sarcoidosis and had a barrage of bad news flung at me every few days, I didn’t really have the time to think deeply about how messed up my life had become. Jay and Andrew and I lurched from crisis to crisis, from major medical center to major medical center, and we did rather well keeping our lives relatively normal and calm. Now we are home for a few months, and there are no medical bogeyman looming on the horizon. We have time to think. We have the energy to process things. We have the space to worry about me getting sick again. And it’s freaking awful.

Now that I have had good medical news, I am terrified of relapsing, of letting health slip through my fingers, and returning to a more doomed landscape. I pay attention to every flutter in my chest, and analyze the nature of every ache in my body. Is this different? Is this worse? Should I call my doctor? I don’t want to fret about things that are inconsequential, but I’ve been warned to be vigilant about cardiac symptoms – especially if they seem to worsen on a lower dose of prednisone. But over-awareness of every skipped heartbeat will turn me first into a hypochondriac and then into a puddle of fear-scented jelly on the floor. I certainly don’t want to have one those euphemistically named “cardiac events,” but I can’t call in every pain and palpitation in my chest. I’m new at this, and I have yet to learn how to strike a balance.

I am lucky that I am not alone on this path – even though I sometimes convince myself I am, or that I would be better off without my husband or son to accompany me. I know that other people with chronic illness have been less fortunate than I when it comes to their partners’ responses. One woman with multiple sclerosis and assorted other health problems was genuinely surprised that Jay hadn’t left me yet. Her husband jumped ship a scant year after her diagnosis.

Truly I don’t deserve Jay to be as good to me as he is. He let me stalk out of Safeway with smoke blowing out of my ears. He covered for me with Andrew, telling him that “Mommy just needed a little extra exercise tonight.” And then he came and found me. Just when I began to notice that it was 38 degrees with a slicing thirty-mile-an-hour wind and I was wearing only a think fleece pullover, the blue Subaru pulled up behind me. When I opened the door, Jay handed me a bunch of brilliant yellow tulips. “I know things are very hard for you now,” he said. “And I’m not sure what I’ve done to make them worse, but I am sorry. I want to help you feel better.” Andrew chimed in, “Look at your beautiful flowers, Mommy.” I promptly burst into tears, and sobbed and gurgled and dripped snot onto Jay’s arm as he held me. “It’s going to be OK,” he said over and over. Andrew apparently thought there was something very wrong with the flowers he had helped select because he kept telling me how pretty the tulips were. They were indeed.

We came home and made pizza. Andrew asked if he could have my flowers and became grumpy when I suggested we share them instead. Jay and I didn’t talk about the specifics of my meltdown, but I felt better nonetheless. Crying is cathartic. But so are yellow tulips opening on a winter evening. So is the face of someone you love. And so is the thought of getting well, however slow and difficult that might be.

2 Comments

  1. Paul said,

    Rebecca

    Truly this is Chronic Town – My physiotherapist summed it up a couple of weeks ago “Your body can take an awful lot of tension before it decides it can’t cope any more”

    Chronic disease is a lot like that – your body is constantly under stress and sometimes the final straw breaks the camel and BOOM.

    You are lucky having Jay (as I am with Denise) – don’t forget to tell him you appreciate him.

    Paul

  2. rebecca said,

    Paul,

    Thanks for these words of wisdom.

    Rebecca

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