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September 14, 2009 Leave a Comment

A day in the life of chronic illness

Recently Rebecca asked in the comments of an entry:

By the way, have you been able to lose any of the weight you regained when you were attacked by the Killer Headache? Do you think you’ll ever talk about the subject? Since many (if not most) of us were drawn to this site by your book and or diet adventures, I think you’d have an eager and receptive audience. And, as a long-time maintainer of an 85 pound loss (more than five years, and holding…) I’d be interested in what you have to say about “rebounding.”

Weight loss? Oh, right, weight loss. I would still like to lose my headache weight, and I do think about losing weight every day, but lately my thoughts have been more preoccupied with figuring out how to live with my constant headache. I have a chronic illness. I will probably always have a chronic illness. I have good days. I have bad days. When I wake up in the morning I don’t know what kind of day it will be, but I soon find out.

On good days, I make my oatmeal and drink my coffee and go to my office. I work happily on my projects, either designing webs or writing words. I probably go for a run before lunch and come back refreshed and think, “I can do this! I can beat this thing! The headache won’t get the best of me!” and I eat something healthy, like a nectarine or carrot sticks. Then I go back to work and by the evening I feel a sense of accomplishment, though my head probably hurts a lot by now from working on the computer all day. Then I watch some TV and when I weigh in the next day I think, “I’m doing so much better. I can really lose the weight now!”

On bad days, I make my oatmeal and drink my coffee and go to my office. I stare at the monitor for a few seconds, then turn on the TV to watch the end of Good Morning America and the beginning of Regis and Kelly. I might read stuff in my Google Feed Reader. I read my emails but don’t have the energy to put together a proper line of thought to reply to anyone. I sigh. I slump. The act of getting out of my chair and walking outside to check the mailbox feels like I am walking through the deep end of a pool, expending all my energy to travel oh, so, so, so, slooooowly, when all I want to do is collapse and float to the top. I tell myself I should exercise because that will release endorphins and make me feel better, just like the doctors have told me. But I don’t want to exercise. I want to lie down on the couch, or my bed, so I do. I’m not really tired enough to nap, but being unconscious sounds really appealing. I feel guilty because if I don’t work, I won’t get paid, and I won’t be able to afford food to eat.

Eating sounds really, good actually, and I’ll start to fixate on something delicious that could momentarily make me feel better, like a Mint Cookie Milkshake from Steak N’ Shake or the Pumpkin Spice Frappucino from Starbucks that just came into season. I tell myself, “No, you shouldn’t eat that. You want to lose weight.” Then I disagree with myself and say, “Who the fuck cares? Life is a ball of shit and I want some fucking ice cream.” I go back and forth with myself for an indeterminate amount of time. Sometimes I’m good and don’t eat the milkshake, if only because the thought of driving half a mile to Steak N’ Shake seems impossible. Sometimes I find the energy and purchase some ill-gotten goods at the grocery via the self-checkout line so no one judges my purchase. By the end of the day, I’m thinking that if a meteor were to hit the planet and cause all life to go extinct, I would be ok with that.

Then I go to bed and wake up the next day, which is either a good day or a bad day. Who knows which it will be? There is only so much I can do to control it. I take my pills. I try to exercise. I try to eat healthy. I drive past the Krispy Kreme and don’t’ stop (except when I do). I’m still fighting it (except when I’m not). On good days, losing 30 pounds seems easy and natural and completely achievable. On bad days, I don’t care about my weight at all, and I’ll take being fat if it means I can have some cookies.

I spend most of my energy trying to maintain an equilibrium. I’m happy if I simply feel ok during the day, not necessarily happy or energized, but not depressed and miserable. That’s how it is with chronic illness. You’re never cured, you just manage it the best you can.

So, yeah, weight loss. Weight loss is great. Woo-hoo, weight loss! To those of you losing weight, I salute you, but it’s not the focus of my life right now. I am just trying to get by, an hour at a time.

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Leave a Comment Read more about: chronic illness, chronic pain, coping, exercsie, food, headache, weight loss

Jennette Fulda is the author of:

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away

"Smart, unflinchingly honest, and laugh-out-loud funny."

- Lisa Genova, New York Times best-selling author of Still Alice

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Jennette Fulda tells stories to the Internet about her life as a smartass, writer, chronic headache sufferer, (former?) weight-loss inspiration, and seemingly nice person (who is silently judging you). You can contact her if you promise to be nice.

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