Explaining the demands of chronic illness.
with Amy Tenderich
Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
January 2008 —Sometimes I feel "perfectly healthy" and can't imagine letting diabetes stand in the way of doing anything I really want. Those are the good days. But there are plenty of bad days, too. And even when I'm feeling good, it's still a burden to have keep calculating and testing and dosing and worrying about the highs and lows. It chips away at my energy, no doubt.
If there's one important lesson I've learned since being diagnosed with a chronic illness, it's that I can't do everything. I am a working mother of three, attempting to have a rich family life, a regular exercise schedule, and some social pursuits on the sidelines, but I am NOT Superwoman – or Supermom, or anything close even. I have a health condition that can drain my limited reserves of time and energy. I may look and feel "OK," even while I'm partially falling apart some days.
So how do I explain this apparent paradox to other people in my life?
Funny you should ask, because freelance writer and mother Christine Miserandino, who lives with the autoimmune disease Lupus, created a site called ButYouDontLookSick to deal with this very issue: the fact that "you don't look sick" but are still struggling every day with an illness that can definitely sap you dry. She has developed a clever theory to explain this phenomenon to friends and family.
Christine's so-called Spoon Theory was born late at night in a diner, when her best friend suddenly asked her what it was like to have Lupus and "be sick."
Personally, I think everyone with chronic illness (CI) struggles with the good day/bad day scenario. But Christine managed to explain how much this can take out of you, with just the simplest of visuals. She grabbed a bunch of spoons in the diner, and started talking:
"Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions... The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to."
She handed her friend a bouquet of 12 spoons, explaining that unlike healthy people -- who have an unlimited supply -- those of us living with CI have to always monitor the limited number of spoons we possess, and think carefully about how to "spend" them.
Christine then asked her friend to list the tasks of her day, whether chores or fun activities. Each item would cost her one spoon. And if you didn't sleep well the night before, or skipped your medicine, or dosed it incorrectly, or caught a cold, that would cost you even more precious spoons. "You do not want to run low on spoons, because you never know when you truly will need them," Christine explained.
The spoons stand for our life energy, of course. In particular as a parent, I find I am very protective of my reserve "spoons." Diabetes does take up a sizable chunk of the energy and concentration I need to function every day. And for the sake of my children, who might just need me to solve any sort of crisis on a moment's notice, I'm a little stingy with my spoons sometimes.
"When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom," Christine writes.
I don't pretend to understand the specifics of what it's like to live with Lupus. But living with this insulin-dependence every day does cost me many more spoons than I care to give up, I'll tell you that much. Thank you for the useful analogy, Christine.
By the way, last month for the holidays, all that shopping and wrapping and cooking (and eating!) and greeting cost a lot of reserve spoons for this overextended diabetic mom. My latest A1C went up from 6.5 to 6.9, and I have a feeling I'm on an upward swing. So I'm going to be extra-stingy with my spoons for a while, at least until I get my glucose control and my energy level back on track.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
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