Managing diabetes can be tough.
Tracking weight, monitoring glucose levels, counting carbohydrate consumption, and getting adequate exercise can tax even the most obsessively compulsive personalities, leading to fatigue or burnout when it no longer seems possible or even valuable to stick with the program.
"The problem with diabetes is that it never goes away," said endocrinologist Mark Schutta. "It's a lifestyle disease, and it's challenging to lose weight, to take several medications, to monitor blood sugars."
The further the disease has progressed, the more there is to deal with.
"The truth is you're going to have ups and downs," said Schutta, medical director of the Rodebaugh Diabetes Center at the Hospital of the University of Pennsylvania
Stephanie Wittbrodt, 47, knows all about diabetes fatigue. Diagnosed with type 1 diabetes at 16, Wittbrodt said she never quite understood the condition or its possible complications until pregnant with her first son. Then, frightened for her unborn child's health, she found herself monitoring her blood glucose up to 15 times a day, giving herself up to nine daily injections of insulin, and tracking every carb.
Once her son was born, she slacked off the intensive regimen, and then some. She was far more interested in attending to her new baby.
The pattern continued through the birth of two more healthy boys.
"I had lots of highs and lows, but diabetes wasn't a thought in my head until I began to feel low or tired or sluggish or thirsty, when I treated a low or high blood sugar," said Wittbrodt, who lives in Voorhees. "I gave myself insulin, but I didn't know the effect since I wasn't monitoring myself."
Though she knew she should go to an endocrinologist, she resisted that, as well. "There was a lot of guilt involved," she said. She knew the first measure any doctor would look at - average blood sugar levels over three months - would be high, "because I wasn't doing what I was supposed to do."
An estimated 29 million Americans, more than 9 percent of the population, have diabetes, a disease in which blood levels of glucose, or sugar, are too high. In type 1 diabetes, the body does not make insulin, the hormone that helps cells metabolize glucose to produce energy. Blood-sugar levels must be constantly monitored, and insulin delivered by injection or a pump. In type 2 diabetes, the vast majority, the body doesn't properly make or use insulin. It may be controlled by diet, physical activity, and medication, although insulin sometimes is required.
Uncontrolled diabetes can lead to frequent crises and long-term organ damage, blindness, and limb amputations. It is the seventh-leading cause of death in the United States.
"Knowing that you always have to care for a condition that has no end point can lead to emotional fatigue and a kind of hopelessness," said Andrea Braverman, a clinical associate professor of psychiatry and behavioral medicine at Jefferson University Hospital who specializes in diabetes fatigue.
Diabetics grow weary at all ages, Braverman said.
"For a child, burnout may occur from a desire to be like everyone else and to do what friends do: 'Why can't I have a pizza like everyone else?' For an adult, it's less about fitting in with a peer group, and more that, 'I've done it for so long, I've lost my motivation.'
"And for an older adult, burnout may be about losing another level of independence: 'Why do I have to manage my glucose monitor? Why do I have to worry about this now?' "
Wittbrodt describes feeling overwhelmed.
"Fatigue is when I look at the number that pops up on the meter and I just don't care," she said. "I stop weighing out food. Or I'll go exercise or go out to run but won't bring anything to cover a low blood sugar."
What to do?
For Wittbrodt, a moment arrived when she turned 35 and realized she wanted to be around for her children and, someday, for her grandchildren. "I thought if I could care for three children," she said, "I could care for myself." Wittbrodt works at Methodist Hospital as a clinical coordinator in the pharmacy division, so she headed to an endocrinologist's office there and found Cheryl Marco, a diabetes educator.
Together, they worked out a strategy. Wittbrodt now wears a continuous glucose monitor and an insulin pump. When she can't take one more finger stick, she sets the monitor to automatically trigger the pump, which sends her an alarm if her sugars get too high. When she simply can't count another carbohydrate, she eats a frozen dinner; that way, she knows exactly how many carbohydrates she is ingesting and, therefore, how much insulin she needs.
Wittbrodt also grants herself a diabetes "vacation" once a year. Instead of checking her sugars eight to 10 times a day, she checks maybe once in the morning, once before dinner, once before bed - and eats specific foods so she doesn't have to worry about counting carbs.
Her blood-sugar levels are consistently better than before she took charge of her fatigue a dozen years ago.
"I bring my stress issues to the diabetes educator," she said. "We work out plans. Sometimes, I come off the pump and go on injections. That might appear to be more work, but wearing my pump 24/7 is a reminder that I should be doing something to monitor and manage my diabetes. Taking it off gives me a psychological break.
"I don't need to be perfect with this," she said. "Inevitably, in every diabetic's life at some point, fatigue is going to happen. It's a constant uphill climb, but at this point, it's not as overwhelming. It's simply something I need to do."
FIGHTING DIABETES FATIGUE
Combating diabetes fatigue is not a one-size-fits-all proposition. But these suggestions from two experts who work with patients on the issue may help:
Break it down: "Stop looking at your diabetes care as a boulder and think of it as a pile of stones and take it one rock at a time," says Andrea Braverman, a psychologist at Thomas Jefferson University. "Try not to get overwhelmed."
Innovate: "If a patient is having trouble monitoring their blood glucose four times a day, I might suggest that they stagger times and monitor once a day over three days - one day breakfast, one day lunch, and one day before dinner," says University of Pennsylvania endocrinologist Mark Schutta.
Get in touch with your emotions: Braverman suggests acknowledging when you're feeling anxious or angry, and embracing those feelings. If your burnout leads to depression, try talking with a mental-health professional.
Take action: "Come up with creative strategies. Think about how you can change the way you think about your care," says Braverman. Consider hiring a health coach, visiting a diabetes educator, enlisting friends and family in your care - or, if your diabetes-control practices are rigid, take a weekend off. "If you're a writer, you might want to let your feelings out by journaling," she says. "Or
go online for support."
Go hi-tech: Not just to get the latest technology, but for someone burned out on
their disease, a new glucometer might provide a bit of needed novelty. A new app might make it easier - or more fun - to monitor sugars, exercise, or diet.
(Try searching, and then ask your diabetes provider about what looks good to you.)
- Ilene Raymond Rush