Long-Haul Living

February 14, 2011 at 4:09 pm (Uncategorized)

I’m tired.  I’ve been fighting another sinus infection for almost two weeks.  It’s my fourth such infection of the winter, and my seventh year of living with a compromised immune system.  You’d think I’d have the hang of managing the never-ending run of colds, viruses, sniffles, and coughs my first grader brings home from school.  I don’t.  Every bug that rides in on Andrew seems to take up permanent residence in my sinus cavities, where it spends a month or two in an orgy of phlegm and fever.

Whoo-hoo.  There was a time when I would have chosen a word other than phlegm in the same sentence as orgy.

However my exhaustion runs deeper than this latest infection—or even the dozen that came before it.  What I’m tired of is being in Chronic Town.

This is new for me.  For the most part, I think I’ve done a pretty good job these past seven years of not wallowing in self-pity about getting sick with sarcoidosis.  I’ve been lucky to have family and friends help me keep some perspective about my illness.  I thought I knew how to deal with being chronically ill.  The trick is to walk the fine line between denial and self-pity—between acknowledging the hard truth that I’m sick with a chronic illness and recognizing that it can always be much worse.

I can’t find that fine line anymore.

I’ve caught myself really not caring one whit about all the blessings I’ve taught myself to notice—that I have good health insurance for the time being, that I have great doctors, that I have a loving family, that I have supportive friends, that I have many good days, that I can manage this sickness.  Instead, I’m lost in a thicket of pessimism.  How much longer do I have to endure the throbbing headaches, blind spells, and vertigo caused by neurosarcoidosis?  How will I ever be able to lose the hundred pounds I’ve gained after 7 years of prednisone, chemotherapy, and stress eating?  How many more sinus infections can I take?

Here’s the truth.  I’m tired of being sick.  Tired of trying to piece together a full life from the remnants left over by the disease.  Tired of summoning up gratitude.  Tired of rising above hardship.  Tired of being the better person.  Tired of being praised for being an inspiration, courageous, plucky, a survivor.

It’s ironic and almost funny that I’ve become so grumpy and so fed up with sarcoidosis now.  Sinus infection and recent surgery notwithstanding, I’ve been almost healthy these past few months.  The cocktail of Rituxan, Remicade, Prednisone, and CellCept seems to manage the worst symptoms of my sarcoidosis and keep the disease from spreading to new organs.  The defibrillator I got implanted two months ago has been controlling the whacky heart rhythms caused by the sarcoidosis in my heart.  Compared to a year ago—when I was in the hospital, hooked up to a morphine pump, and losing my vision because the sarcoidosis was in my optic nerve—I’m doing well.  Compared to two years ago—when I was in the hospital because my gastrointestinal system was shutting down from the disease and the months of chemotherapy that were supposed to treat it—I’m downright healthy.

What the hell do I have to complain about now?  I can drive again.  I can usually work for a couple of hours each day.  I sent off the first 60 pages of my book to an agent in New York.  Before I got this stupid sinus infection, I was exercising four times a week.  I started Weight Watchers again and lost 9 pounds in four weeks.  I can cook dinner, wash the dishes, and still have energy to play with Andrew.  Jay and I spent a whole day out last Saturday.   We’re set to leave for Iceland next week, for a vacation we’ve been dreaming of me being well enough to take for years.

What is wrong with me?  I’m on the easiest street in Chronic Town, and rather than enjoy this spate of good fortune I’m finding fault and grumping about minor setbacks.

Deep breath.  And another.  Maybe there’s nothing wrong with me.  Maybe my sense of exhaustion and despair doesn’t mean necessarily that I’m ungrateful, weak-assed, lily-livered, unappreciative, a whiner, a quitter, a kvetcher.  Deep breath.

Maybe I’m just tired.  My body has taken a beating from all these years in Chronic Town.  It’s endured months of harsh chemotherapy, years of medications that shut down its immune system, multiple surgeries, and dozens of invasive tests—not to mention enough secondary infections to qualify me for the Guinness Book of World Records, if it recognized phlegm-related feats of endurance.  Oh, and there’s the matter of having a debilitating and life-threatening disease hop-scotching through my major organs.  That might tire me out too.  My point is that all these indignities of illness might have a cumulative effect of wearing me down and leaving me tired.

There’s also an emotional toll to hanging tough in Chronic Town.  Just as my body feels the collective weight of seven years of sickness, my spirits feel like they’ve been stretched—and stretched and stretched—so that they can’t bounce back from a relatively minor setback like a sinus infection.  I picture my emotional resilience as a beach ball.  A little air leaks out of the ball with every sarcoidosis flare-up, each death scare, and every time I’ve got to return to bed instead of walk into the world.  Now, I’m trying to bounce on this sad, deflated excuse of a ball through this latest (and relatively minor) setback of my sinus infection.

When I got my latest Remicade infusion at the Cancer Treatment Center (CTC) last week, I tentatively mentioned how tired of being sick I am to the nurse who asked me how I was doing while she drew blood for lab work.  I was tentative because the CTC’s nurses are notoriously tough.  “No crying in the chemo room!” is one of the first rules you learn there.  It’s not that the nurses aren’t compassionate, because they are—truly some of the kindest, most caring and empathetic women I’ve ever encountered.  But they know that despair is contagious.  One woman sobbing about chemo can make the whole room give up.  These nurses know that you’ve got to fight an illness, that you’ve got to suspend your fear and hopelessness long enough to get the treatment you need.  I expected I’d get dressed down for quietly mentioning how worn out seven years of sarcoidosis have left me.  Instead the nurse held my hand and told me that it makes sense that I’m sick of being sick.  “Most of our patients here come in for three months or six months,” she said.  “You’ve been showing up for the same chemos that they get—but it’s been three years for you.  No wonder you’re tired of it.”  She squeezed my hand.  “But you’ve got to keep doing it, kiddo.  You’re not going to give up.”

This short conversation cheered me—and not just because I got called kiddo when I’m nearly 40.  Having this hardened combat sergeant in the never-ending campaign against illness acknowledge my feelings—and conclude that I’m not a pansy-assed complainer who should just get over myself but a soldier in my own right—helped me cut myself some slack.  It makes sense that I’m weary.  I’ve gone through a lot with this illness.  Recognizing how tired I am of fighting this disease doesn’t mean that I’ll quit the battle.  What choice do I have but to weather the bad times—and the good?

A little dose of hope can do a lot of harm.  The past few weeks of being able to work more, exercise regularly, lose a few pounds, go for walks, parent with more energy and joy, socialize with friends, and go out with Jay were wonderful.  Almost too wonderful.  When I had to return to bed, it felt like I was crawling back into the narrow life of being confined, in pain, and dependent.  I was scared.  In fact, I just needed a few days of rest, but I decided I was being exiled from my real life again.

It’s hard to get just a small taste of a healthier life.  I want to grab the whole pitcher and chug it down.  I don’t want to have a sip here, a swallow there.  I want to be well now and cured always.  But that isn’t possible—for anyone.

I want to live the life I have as fully as I can.  That means accepting the tiredness—not giving in to it, but also not berating myself for being worn out.  It’s a hard balance to strike.  But what else can I do?  Chronic illness requires me to perch between truths, to find temporary footing on shifting terrain.  It’s tricky and uncomfortable to live between two realities, but that’s what chronic illness demands.

I am tired of this disease; however, I will live with this disease because I value my life—even with sarcoidosis.  I will keep fighting this disease; yet I am tired of fighting for every semi-normal day.  I don’t think I can take another set-back; but I will find away to make it through, no matter what happens.  I am tired; but I am alive.  I am unwell; yet deep inside me, I am OK.

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