Living with type 1 diabetes

Better blood sugar control may be the key to longer survival

Ninety years ago, type 1 diabetes was a death sentence: half of people who developed it died within two years; more than 90% were dead within five years. Thanks to the introduction of insulin therapy in 1922, and numerous advances since then, many people with type 1 diabetes now live into their 50s and beyond. But survival in this group still falls short of that among people without diabetes.

A Scottish study published this week in JAMA shows that at the age of 20, individuals with type 1 diabetes on average lived 12 fewer years than 20-year-olds without it. A second study in the same issue of JAMA showed that people with type 1 diabetes with better blood sugar control lived longer than those with poorer blood sugar control.

Types of diabetes

There are three main types of diabetes:

Type 1 diabetes is an autoimmune disease. The immune system mistakenly attacks and destroys cells in the pancreas that make insulin. This usually happens before age 20. Insulin is needed to get blood sugar (glucose) into cells for energy. Without insulin, glucose builds up in the bloodstream. This damages cells and tissues throughout the body. People who develop type 1 diabetes need to take insulin via shots or a pump for life.

Type 2 diabetes tends to occur later in life, usually among individuals who are overweight or inactive. It accounts for about 90% of all diabetes. People with type 2 diabetes often make enough insulin, at least at first, but their cells don’t respond to it. As with type 1 diabetes, glucose builds up in the bloodstream, damaging cells and tissues throughout the body. Type 2 diabetes is initially treated with lifestyle changes such as weight loss, more exercise, and a healthier diet. Medications that make the body more sensitive to insulin and do other things to control blood sugar may also be needed.

Gestational diabetes develops during pregnancy, and fades away after delivery. About 1 in 20 women develop gestational diabetes.

Living with type 1 diabetes

Insulin can be a difficult drug to manage. A mismatch between insulin and food intake can cause blood sugar to drop dangerously low (hypoglycemia). This can lead to symptoms such as a fast heart beat or feeling shaky. It can cause diabetic ketoacidosis, in which the body’s chemical balance becomes deranged because there’s not enough insulin to move sugar into cells. Hypoglycemia can also lead to a diabetic coma, and even death. In the Scottish study, 21% of deaths among younger people (under age 50) with type 1 diabetes occurred as a result of diabetic coma and related causes.

That said, insulin works very well for most people with type 1 diabetes. Other reasons why people with type 1 diabetes are now living longer include:

Better insulins are available, and they are easier to use. Some last all day, others work very quickly. Insulin pumps make it easier to deliver insulin

Better ways to track blood sugar with home glucose monitors and even continuous glucose monitors. Keeping blood sugar close to normal is linked with longer life.

New drugs and other therapies to prevent and treat complications of diabetes, such as heart disease and kidney disease. Both are major causes of early death in people with type 1 diabetes.

Tight control

The second JAMA study was a long-term follow-up of men and women who participated in the Diabetes Control and Complications Trial, which ran from 1983 to 1993. Half were assigned to “tight” blood sugar control. They aimed to keep hemoglobin A1c (HbA1c), a measure of blood sugar control, under 7%. (People without diabetes have HbA1c levels of 5% or lower.) Those assigned to “conventional” blood sugar control averaged 9% on the HbA1c. After 27 years, participants in the tight control group were less likely to have died than those in the conventional control group.

This suggests that tight control is one way to improve survival in people with type 1 diabetes. That makes sense, because lower blood sugar means less damage to cells and tissues. But it may also mean more brushes with hypoglycemia, which poses its own set of problems.

Not everyone with diabetes should strive for near-normal blood sugar levels. For example, people who are older, or frail, or who have other health issues may not be good candidates for tight blood sugar control.

Beyond blood sugar control, keeping cholesterol and blood pressure in the healthy range are essential for people with diabetes.

Medalists

Back in 1948, the Harvard-affiliated Joslin Clinic in Boston began giving Victory Medals to individuals who had lived with type 1 diabetes for 25 years. The program was expanded in 1970 with 50-year medals. The first 75-year medal was presented in 1996.

In addition to honoring long-term survivors, investigators at the Joslin Diabetes Center are studying them to learn what has helped them beat the odds. This work, and other research around the United States and the world, may help further extend life for people with type 1 diabetes.

My Life as a Spouse to a Person with Type 1 Diabetes

Through my life, a lot of my memories have been unremarkable. I had a very normal childhood in a middle-class family. My life was never truly crazy until I met Brittany, a type 1 diabetic.

Now I know that “crazy” sounds harsh, but that’s what this disease is. It fights you tooth and nail, trying to break your spirit. You think you have it all under control, and within 5 minutes you’re attempting to nurse someone back to consciousness. I guess I never imagined as a little kid, riding my bike throughout my neighborhood, that the woman I would fall in love with would have such a battle at hand.

We met in 2009, when the only idea of diabetes I had was what I’d seen on television. That “with diet and exercise you stop taking insulin for diabetes.” So meeting Brittany, I didn’t think that this was such a bad disease.

We dated for about four months, and then we moved in together. That’s when the reality of type 1 diabetes kicked me in the face. Diabetes changed my life. And it added so many complications for both of us that the two years we spent living together uninsured and kind of thrown from the nest are the most vivid memories of my life.

“Her disease is manageable,” I can remember the endocrinologist telling us. With proper management and supplies, you can have a normal life. Really, the only issue they don’t tell you is that “manageable life” has a large price tag. So that’s where my life really became difficult. Not only did we need to make sure there was food on the table and the rent was paid, but we also now had to make sure we had enough insulin and testing supplies for the month. So needless to say, our two minimum wage jobs weren’t cutting it.

I owned a pickup truck at the time, so after work, I would drive around to all of the apartment complexes in the city. Anytime someone is evicted, they have the opportunity to grab whatever they want to take, and what they leave is put by the dumpster. So I began to grab the pieces of furniture left behind and started listing and selling it online. (I would even deliver for a small fee of $20.) This wasn’t raking in the money for us. However, it did buy a vial of insulin and maybe 50 test strips if we had a good sale. This isn’t my proudest moment in life — it just paid the bills.

We wound up getting so far behind on our rent that we were evicted from our apartment. It was either a place to live or Brittany’s life, and we chose the latter. Luckily, my parents had bought a trailer in a small retirement RV park, and we were able to move in there.

During our time in the apartment complex, Brittany had received an education in medical assisting, and I began an apprenticeship as a carpet installer for my father. So when we moved into the trailer, our jobs were better paying and our rent was lowered. I no longer had to scrounge for furniture. Still uninsured, however, Brittany and I would spend large chunks of our paycheck to afford the basics of diabetes: two types of insulin, blood sugar meter, test strips, and syringes. Although Brittany was no longer rationing supplies, the constant battle with diabetes was still around.

One morning, around 5 a.m., I received a call. The other end of the phone was an unfamiliar voice, telling me that Brittany had been leaving the gym when she blacked out from a low and backed my car into the woods. So here we were, a bit more financially established, and this bastard disease was still rearing its head.

I had to do more to help with this disease, so I enlisted in the U.S. Navy. Now we were well insured with continuous glucose monitors, insulin pumps, and paid-for medical care. I still look back at those times in my life as a lesson, and nowadays I often find myself thinking how absolutely bananas it was. It also really jabs me in the side when I think about how many other kids are going through this and whether you have to be rich to live a decent life with type 1 diabetes.

Brittany, the mother of my three children and my loving wife these days, started a blog for others with type 1 diabetes to know they aren’t alone. She’s even begun the process of making a nonprofit organization to help kids who are underinsured get the best life possible. I couldn’t have imagined the woman she would develop into, but I’m sure glad I went through all the troubles of keeping her afloat to get the chance to enjoy the person she’s become. Diabetes changed my life for sure, and it has been some battle to this point. But I’m glad it’s the path I’ve chosen.

Mitchell Jacobs is enlisted in the Navy and married to Brittany Gilleland, who has been living with type 1 diabetes for over 14 years. Together they have three children. Brittany currently blogs at thediabeticjourney.com and raises awareness about type 1 diabetes on social media. Brittany hopes by sharing her story, others can feel empowered to do so as well: No matter where we are in this journey, we are all in this together. Follow Brittany and her story on Facebook.

Living a Healthy Life with Type 1 Diabetes

With proper care, a type 1 diabetic can live a long and healthy life, with almost no risk of heart attack, stroke, or complications. Type 1 diabetics need not feel doomed to a life of medical disasters and a possible early death. With a truly health-supporting Nutritarian lifestyle, the type 1 diabetic can have a disease-free life and a better than average life expectancy.

Diabetes is a serious disease

With conventional care of type 1 diabetes, the long-term prognosis is dismal. Type 1 diabetes usually begins to do its damage during childhood, and carries the same risks of type 2 with complications such as damage to the kidney, eyes, and nervous system.

Both type 1 and type 2 diabetes accelerate the aging of our bodies. Having type 1 or 2 diabetes greatly speeds up the development of atherosclerosis, or cardiovascular disease; in fact, diabetes doubles the risk of heart attack and stroke.

About 10 percent of diabetes cases are type 1. In type 1 diabetes, which generally occurs earlier in life, the immune system attacks the beta cells in the pancreas, which produce insulin, resulting in insulin deficiency. For that reason, in almost all cases, type 1 diabetics will always require insulin to prevent too much glucose in the blood and life-threatening ketoacidosis (a serious condition that can lead to a coma and even death).

Unlike type 2, type 1 diabetes is not caused by excess body fat. However, excess body fat is still dangerous for a type 1 diabetic, since type 1 diabetes also carries the risks associated with type 2 diabetes: heart attack, stroke, kidney failure, and other complications. Consequently, a nutritionally superior diet is essential to the health and longevity of type 1 diabetics.

A diagnosis of type 1 diabetes is not a guarantee of poor health and a shortened lifespan. It is not type 1 diabetes itself that causes such negative health consequences. Rather, it is the combination of the diabetes and the typical nutritional “advice” given to these patients – advice that requires them to use needlessly large amounts of insulin. Excess insulin accelerates atherosclerosis, increases cancer risk and damages the body. 1-3

While the Standard American Diet (SAD), which has spread to all industrialized nations, is dangerous for everyone, it is particularly deadly for diabetics. In short, if a diabetic eats the SAD, poor health and a premature death is a common eventuality.

Live a Long and Healthy Life with Type 1 Diabetes

I find that when type 1 diabetics adopt my high-nutrient dietary approach, they reduce their insulin requirements by at least one half. They protect their body against the heart-attack-promoting effects of the American diet style. They no longer have swings of highs and lows, their weight remains stable, and their glucose levels and lipids stay under excellent control. Even though the type 1 diabetic will still require exogenous (external) insulin, they will no longer need excessive amounts of it.

Remember, it is not the rype 1 diabetes that is so damaging, it is the SAD, the typical dietary advice given to type 1 diabetics, and the excessive amounts of insulin required by the SAD that are so harmful. It is simply essential for all type 1 diabetics to learn and adopt a Nutritarian diet as described in my book The End of Diabetes.

They can use much less insulin, achieve a normal, healthy lifespan and dramatically reduce their risk of complications later in life.

A Type 1 Diabetes Success Story

John was a 22-year-old college graduate with type 1 diabetes since the age of six. He was five foot, eight inches tall, weighed 190 pounds and was taking a total of 70 units of insulin daily. He was referred to my office by his family physician as he was having swings in his glucose levels, too high at times and at other times dangerously low. He also wanted to learn more about nutrition to improve his health and reduce his future risks from having diabetes.

I was impressed by his intelligence and desire to change his eating habits to better his health. We spent lots of time discussing the typical problems that befall most diabetics, and I explained to him that using 70 units of insulin a day was part of the problem. I told him that if he follows my recommended diet-style he will stabilize his weight at about 145 pounds and will only require about 30 units of insulin a day. With this lower level of insulin, to mimic the amount of insulin a non-diabetic makes in the pancreas, he can have a life without the typical health issues that befall diabetics.

We cut his nighttime insulin dose down by 10 units and his mealtime insulin from 10 to six units as he began the diet. Over the next two weeks we gradually tapered his insulin and found that he only needed 20 units of Lantus insulin at bedtime and 4 units before each meal for a total of 32 units a day. Almost immediately, with my dietary recommendations, his sugars were running in the favorable range, and he no longer experienced dangerous drops in his blood sugar.

He lost 13 pounds over the first month and by month three he weighed 167 pounds, a loss of 23 pounds. He was excited about what he learned and was more hopeful about living with diabetes.

I am convinced that with a Nutritarian diet-style, those with type 1 diabetes can have a long and disease-free life. I feel it is imperative that all type 1 diabetics learn about this life-saving approach.

This simple and effective plan in The End of Diabetes is based on delicious, healthful foods, starts working immediately, and puts you on the path to a long, happy, disease-free life. Of course, the road to wellness involves making the commitment to regular exercise as well. In The End of Diabetes, I also describe exercises you can do even if you are beginning at a low level of fitness.

If you have diabetes, you may also want to consider purchasing a membership to DrFuhrman.com where you can find support from both peers in the Nutritarian Network and me and my medical staff in the Ask the Doctor member communities.

Be advised, if you are on medication, it is important that you do not change your diet without medication adjustment under the guidance of a competent physician.

I wish you enduring health and a long life… it can be yours.

One Day in the Life of Type 1 Diabetes

DAY 4161 Living with Diabetes

As I sit up in bed, my head spins. It’s 7 a.m. I’m shaking, sweating and scared. It’s only then I realize that I missed dinner last night. I know that my blood sugar is dangerously low. I also know that apart from my 13-year-old sister, I’m home alone. Out of the corner of my eye, I see a muesli bar sticking out of my handbag. I try to get out of bed and reach for it, in an attempt to bring my blood-sugar up. That’s the last thing I can remember. My name is Shelby. I’m your average 21-year-old, aside from the fact that I have had Type 1 diabetes since I was 9.

One morning in January of 2014, my blood sugar dropped so low that I had a seizure and knocked myself unconscious after hitting the back of my head on my bed frame.

It was the first time that an ambulance had ever been called for me. Apart from this instance, I have had several serious hypoglycemic episodes — I’ve had a seizure whilst on camp visiting a crocodile farm, I’ve smashed drinking glasses in my hands in an attempt to fix my blood sugar and I’ve buttered my hands whilst trying to make myself a sandwich. If you haven’t already guessed it, I’m extremely stubborn and independent. I don’t like asking for help; however, it’s because of my diabetes that I have had to learn how to ask for such.

Diabetes is debilitating. Diabetes is devastating. Diabetes is draining.

We’re allowed to have good days and bad days; just like everyone else. We just need to be prepared. Even on our bad days, we are still diabetics. We still have to stop and test our blood sugars and give insulin. We have highs (fun fact: we don’t understand how odd it sounds to others when we’re in public and say, “I think I’m high”) and then we also have lows (literally). Our blood sugars can jump to 25.4 mmol/l (457 mg/dl) then plummet to 2.1 mmol/l (38 mg/dl). We deal with the unquenchable thirst, headaches and emotional meltdowns when we’re high, then later deal with the ravenous hunger when we’re low. Diabetes is in absolutely no way, “easy” to manage. In fact, sometimes it feels like you can’t manage at all.

What you may not understand is this: diabetes is not as simple as simply doing a blood sugar test, accompanied by an insulin injection or the touch of a few buttons on an insulin pump. Diabetes is like I’m running a race with a weight belt on. The course is the same and it has hills and valleys just like for everyone else, but every step, every moment and every time I push myself to the max, I have to work a little harder than everyone around me. It’s a constant weight on our shoulders that for most diabetics will never go away and is sometimes difficult to manage and live with.
Usually, Type 1 diabetes is diagnosed in children and young adults, although it’s not confined to that. As young kids, we are usually able to rely on parents to carb count and to remind us that we need to change our infusion sets and batteries. But as adults, we don’t have that anymore. More often than not, we live away from our families. We know how to take care of ourselves. It’s just hard sometimes. I can’t tell you how many times that I’ve been at work and have run out of insulin, resulting in high blood sugars hours later.

Anyone can develop Type 1 diabetes. No, it isn’t a lifestyle disease, and no, it’s not infectious.

One day, your pancreas can simply just stop producing insulin. It can hit you at any age; it can affect both sexes and any race. Diabetes does not discriminate. In Australia, Type 1 diabetes accounts for around 10% of all diagnosed diabetic cases. This number is rising.

I have had Type 1 diabetes for 11 years, 5 months and 10 days. I have had over 30,000 blood sugar tests and 18,000 injections/site changes. I am only 21. In 1974, researchers claimed that a cure was only 5 years away. It’s now 2015. I don’t wish to live another 11 years, 5 months and 10 days with diabetes. Diabetes is hard; however, we are more than a disease, a disorder or a sickness. We are children and young people with love in our hearts and beauty in our souls. We have the power and our health is in our hands. We won’t let our diagnosis rule us. We’re far more than that.

Read Diabetes – Your Frenemy by Dana Maxx Pomerantz.

TAGS: 20 Somethings, Adults, Mental Health, Parents, Teens

Shelby Farrell

Shelby lives in Brisbane, Australia and is 21 years old. She’s been a Type 1 diabetic since 28/05/2004. When she goes back to university, she plans to study social work. She is a proud mother of 3 furbabies: Ollie, Pumpkin and Skittles. Check out her Pinterest page here: https://www.pinterest.com/ThisIsShelba/.

My Daily Life With Diabetes

Studies have shown that the majority of people living with diabetes experience fears and negative feelings at one time or another. These feelings can lead to diabetic fatigue that is more than a feeling of tiredness and can lead to disproportionate discouragement. This in turn results in poor monitoring of their blood glucose levels, including forgetting to take their insulin injections and eating an unbalanced diet, in a bid to ignore or try to forget about diabetes.

Moreover, while many people with diabetes experience some distress because of their illness, most of their family members feel frustrated because they do not know how to help.

Adolescence is a critical age

Parents and young children know from the time of diagnosis that diabetes is a chronic disease and that they are facing an increased risk of vascular, renal or ocular complications if their blood glucose levels remain uncontrolled. While children are drilled to respect treatment protocols to manage their disease in agreement with parents and health care professionals. Yet, only one-third of adolescents with diabetes manage to regulate their blood sugar independently. Factors that stop them effectively managing their treatment regime are numerous in adolescence and include repetitive glycemic control, difficulty in adjusting insulin doses according to meals or physical activity, and fear of being overweight. Rebellion or rejection of the disease even leads some patients who do not have any symptoms to stop their treatment.

During adolescence, the role of parents remains very important for optimal management of diabetes. Parent and adolescent relationships can be complicated and diabetes management can be an additional source of conflict. However, adolescents, even if they rebel against the demands and constraints, will be reassured by the existence of a protocol decided with their parents that is adapted to their new way of life.

Sanofi’s century of commitment

At Sanofi, we have almost 100 years of experience in the treatment of diabetes. Over the years, we have heard from many people with the disease and worked with countless health professionals to provide the best possible care.

Sanofi’s commitment to manage diabetes in the best possible way today and to work towards finding a cure for tomorrow is based on four pillars:

  1. Working tirelessly to develop new therapies
  2. Implementing a variety of educational programs and services for people around the world.
  3. Integrating solutions that connect treatments, services and data analytics to enable people to live the life they want.
  4. Partnering with health authorities and payers to provide as many people as possible with the best access to our medicines and solutions.

Everyday Life with Diabetes

Managing Daily Life with Type 1 Diabetes or Type 2 Diabetes Written by Julie M. Gentile

Type 1 diabetes or type 2 diabetes may change your life, but with a few simple tools, you’ll learn how to easily manage your condition. Everyday life with diabetes may involve testing your blood glucose levels and monitoring the highs and lows of your diabetes, but you can do this. You can manage your diabetes.

Our Daily Living Center will show you how to manage your diabetes in your everyday life, including managing diabetes when you travel, at work, at school, and on vacation, as well as the emotional sides of the condition.

With diabetes, daily routines—such as working, eating, and exercising—take special preparation. Learning how to plan for these everyday tasks can help lower your blood glucose levels and drastically reduce your risk of diabetes complications.

This article covers everyday life with type 1 diabetes, and everyday life with type 2 diabetes.

Everyday Life with Type 1 Diabetes
A day in the life of someone with type 1 diabetes involves working toward blood glucose level goals. You can do this by balancing what you eat with the amount of insulin you take.

However, exercise is something you can do to boost your overall health and well-being. Check out our Exercise Center, which shows you how to get started, as well as various exercise options.

To help you stay on track with your blood glucose level goals, you should work with your diabetes treatment team, which typically involves a doctor, endocrinologist, registered dietitian, and certified diabetes educator.

Your treatment team can help you deal with some of the challenges you may encounter with diabetes, such as how to deal with special events and holidays, or how to manage your diabetes on vacation.

Everyday Life with Type 2 Diabetes
Managing everyday life with type 2 diabetes is somewhat different than managing everyday life with type 1 diabetes.

Some people with type 2 diabetes may need to lose weight to get their condition under control. With the guidance of a registered dietitian or certified diabetes educator, you’ll learn how to lose weight in healthy ways.

Also, other positive changes, such as exercising more, eating healthier foods, and quitting smoking (if you need to) can have significant effects on your overall health.

To help you stay committed to your health, we spell out important exercise tips in our Exercise Center.

Although at times it may seem difficult to manage your diabetes, it’s definitely worth it. Incorporating even small changes, such as walking for 30 minutes every day or eating more vegetables can help you control your condition.

For example, when you’re going out to dinner, most restaurant menus these days have a variety of healthy, delicious choices for you to select from. Grilled lemon chicken, with a side of broccoli, and brown rice is an excellent dinner choice when you’re at a restaurant.

Or, if you prefer to cook at home, check out our Diabetic Recipes Center for recipes that are bursting with flavor.

Daily Living with Diabetes
Incorporating a few daily lifestyle changes can help you deal with diabetes in your everyday life. To help you stay on top of your type 1 diabetes or type 2 diabetes, be sure to schedule regular checkups with your doctor.

Updated on: April 18, 2011 View Sources Sources

9 Things People With Type 1 Diabetes Wish You Knew

Type 1 diabetes is a chronic condition in which your body doesn’t produce insulin. While type 1 diabetes can be managed by taking insulin and making healthy lifestyle choices, it can’t be cured by losing weight, exercising, or quitting smoking.

An estimated 5 to 10 percent of people with diabetes have type 1, and most have been managing their condition since childhood. Type 1 diabetes is usually diagnosed in children and young adults, but it can occur at any age.

Common symptoms of type 1 diabetes include extreme hunger or thirst, fatigue, blurry vision, and weight loss. Once diagnosed, insulin injections and other therapies can allow people with type 1 diabetes to manage their condition and lead long and active lives.

Think you already know a lot about type 1 diabetes? There may be several assumptions or things you’ve heard that may not be accurate about the condition. Here are nine things that people with type 1 wish you knew.

1. Type 1 and type 2 diabetes are distinct conditions.

Diabetes is a disorder in which the body has trouble regulating blood glucose, or blood sugar, levels. The two main types of diabetes are type 1 and type 2.

Type 1 diabetes is an autoimmune disease in which the immune system attacks and destroys the cells in the pancreas that make insulin. Insulin is a hormone that enables sugar to enter the bloodstream to be used by cells for energy or stored for later use. Without it, a person with type 1 diabetes can’t process glucose and their blood sugar levels can get dangerously high.

Type 2 diabetes is a metabolic disorder; the pancreas still produces insulin but is unable to use it effectively or the body has developed a resistance to it.

“In general, there’s not a lot of awareness about type 1 diabetes,” says Melinda Ramage, FNP-BC, a certified diabetes educator practicing in Asheville, North Carolina. “When you say diabetes, type 2 is what most people think of — that’s what the majority of the awareness campaigns have focused on. Many people falsely assume that all diabetes is the same.”

2. It can’t be cured with lifestyle changes.

As with other autoimmune disorders, the exact cause of type 1 diabetes is not known. There is no “cure” or way for a person with type 1 to eliminate their need for insulin therapy, which is an important distinction between type 1 and type 2.

Morgan McKean, 29, who currently works abroad in health promotion for a charity foundation, sees a lack of knowledge about both types of diabetes. “People think only overweight people get diabetes or that you can always get rid of it through a better diet and exercise. That’s not the case in type 1, and it isn’t always true in type 2 diabetes either,” she says.

3. Yes, I can eat sugar.

“Once someone finds out about my diabetes, ‘Can you eat sugar?’ is usually the next question. That’s understandable, though it can be awkward, especially if I’m putting a donut in my mouth at the time!” says McKean.“Type 1 diabetes is about managing the ratio of sugar and insulin in the body. I can eat anything I like as long as I understand how much insulin I need to give in order to cover that food.”

“For the most part, people with type 1 are taught to eat ‘normally,’ but then to make adjustments to their insulin and ‘think’ like a functioning pancreas would,” Ramage says.

4. I need to track more than just my sugar intake.

In the simplest terms, insulin keeps sugar levels regulated in the body, but managing how much insulin to take requires more than just monitoring sugar consumption. All carbohydrates need to be tracked since they are converted into glucose in the body, and exercise impacts blood sugar levels as well.

“Diabetes is always in the back of my mind,” says McKean. “I have to track every bit of food and every minute of exercise. Even things like stress or being nervous can impact blood sugar.”

5. Managing type 1 diabetes takes constant work and planning — I never get a break.

“Type 1 diabetes is very unique,” says Ramage. “If I’ve been diagnosed with type 1, I’ve had one of my organs fail. And the pancreas is a vital organ, not like an appendix. It’s key for glucose metabolism, which we need to live. Imagine if my heart stopped beating properly and that every 10 beats I was the one responsible for making sure … it’s of that gravity,” she says.

“Diabetes never takes a break. I check my blood sugar around six times a day, and probably in the middle of the night at least three nights a week,” says McKean. “I also give insulin when I first wake up, and then anytime I eat or my blood sugar goes high during the day.”

Even more taxing can be the mental energy required to manage type 1 diabetes. “There’s constant thinking that goes into diabetes — calculating how many carbs you’re eating, if it’s worth eating them, wondering if you’re a bit tired because your blood sugar is high or if you just didn’t sleep well, not to mention playing detective if your blood sugar is not what you expected,” McKean says.

People with type 1 diabetes are just like the rest of us; sometimes they wish they could just relax. “My endocrinologist noted that my blood sugar levels are consistently in a good range during the week, but not so much on Saturday and Sunday,” says Grady Cecile, 45, a senior services worker in North Carolina. “I jokingly told him, ‘That’s because I don’t have diabetes on the weekend!’” In reality, having type 1 means being “on” every day of the week.

6. Please don’t tell me what I should and shouldn’t eat.

“People try to tell me all the time what I can and can’t eat,” says Cecile. “I’ll be out or at work and someone will say, ‘You can’t eat that cupcake.’ They wouldn’t dream of saying that to someone else, but because of my diabetes, they think they should tell me what to eat.”

Ramage agrees: People often intervene on what would otherwise be “a stranger’s decision-making,” she says. “It goes back to that (incorrect) stigma. People think you’ve made poor choices that have led to your condition, therefore, they should share what they know to help you make better choices.”

7. I am my own toughest critic.

Even though type 1 diabetes isn’t caused by unhealthy habits, there can still be a lot of self-judgment from managing it. “Having type 1 is like being graded over and over again each day,” says McKean. “Every time I check my blood sugar, I’m finding out if I get a ‘good’ or ‘bad’ grade. There can be a lot of guilt and frustration if my blood sugar is too high or low. Why didn’t I give the right amount of insulin? How could I have gotten that wrong? What did I do yesterday that is making this happen? I must have eaten too much — how stupid! Why didn’t I feel my blood sugar dropping before now?”

Goals can seem very black and white, says Ramage, and when patients don’t meet them, it can lead to shame and guilt. “As healthcare providers, we have specific sugar goals that we share with patients in order to reduce risk,” says Ramage, adding that the numbers are only one part of the bigger picture. Stress and micromanaging over hitting a number isn’t healthy either. Working with patients as individuals to gain an understanding of his or her challenges and goals can lead to better outcomes.

8. Type 1 diabetes can affect my moods and emotions.

According to the American Diabetes Association, depression is more common in people with type 1, although a study published in November 2016 in Diabetic Medicine suggests that much of what has been thought of as depression is actually emotional distress that comes with managing a demanding chronic disease.

“When my sugar is really high, it can definitely affect my moods and decision making,” says Cecile. “I feel like my brain doesn’t work as well.”

McKean adds: “I manage it, and generally do so with a smile, but it is a huge part of my life that can be quite difficult at times.”

9. Living with type 1 diabetes helped shape who I am.

Even though most people with type 1 diabetes wouldn’t chose to have the disease, managing it may lead to insights and a heightened awareness of the struggles everyone faces.

“Diabetes has brought a lot of wonderful things into my life,” says McKean. “I am more empathetic toward anyone with a chronic condition, and I try hard to remember that you don’t usually know all that’s going on in a person’s mind, so be kind to them.”

Support and relationships can grow out of a type 1 diagnosis as well. “As a kid, I attended the Florida Camp for Children and Youth with Diabetes and I went back as a counselor and volunteer for six years. I met some incredible people there and really relished the chance to be surrounded by people ‘like me’, says McKean. “And as an adult I interned at a diabetes charity in the UK and met my husband there. So, I certainly can’t be too hard on the disease!”

Working closely with your doctor, you can manage your diabetes by focusing on six key changes in your daily life.

1. Eat healthy. This is crucial when you have diabetes, because what you eat affects your blood sugar. No foods are strictly off-limits. Focus on eating only as much as your body needs. Get plenty of vegetables, fruits, and whole grains. Choose nonfat dairy and lean meats. Limit foods that are high in sugar and fat. Remember that carbohydrates turn into sugar, so watch your carb intake. Try to keep it about the same from meal to meal. This is even more important if you take insulin or drugs to control your blood sugars.

2. Exercise. If you’re not active now, it’s time to start. You don’t have to join a gym and do cross-training. Just walk, ride a bike, or play active video games. Your goal should be 30 minutes of activity that makes you sweat and breathe a little harder most days of the week. An active lifestyle helps you control your diabetes by bringing down your blood sugar. It also lowers your chances of getting heart disease. Plus, it can help you lose extra pounds and ease stress.

3. Get checkups. See your doctor at least twice a year. Diabetes raises your odds of heart disease. So learn your numbers: cholesterol, blood pressure, and A1c (average blood sugar over 3 months). Get a full eye exam every year. Visit a foot doctor to check for problems like foot ulcers and nerve damage.

4. Manage stress. When you’re stressed, your blood sugar levels go up. And when you’re anxious, you may not manage your diabetes well. You may forget to exercise, eat right, or take your medicines. Find ways to relieve stress — through deep breathing, yoga, or hobbies that relax you.

5. Stop smoking. Diabetes makes you more likely to have health problems like heart disease, eye disease, stroke, kidney disease, blood vessel disease, nerve damage, and foot problems. If you smoke, your chance of getting these problems is even higher. Smoking also can make it harder to exercise. Talk with your doctor about ways to quit.

6. Watch your alcohol. It may be easier to control your blood sugar if you don’t get too much beer, wine, and liquor. So if you choose to drink, don’t overdo it. The American Diabetes Association says that women who drink alcohol should have no more than one drink a day and men should have no more than two. Alcohol can make your blood sugar go too high or too low. Check your blood sugar before you drink, and take steps to avoid low blood sugars. If you use insulin or take drugs for your diabetes, eat when you’re drinking. Some drinks — like wine coolers — may be higher in carbs, so take this into account when you count carbs.

PMC

Table 2.

Nutritional Information and Skills Needed for Optimal Diabetes Management in Patients with Type 1 Diabetes

Caloric and nutritional requirements

Daily servings of food groups

Carbohydrate, fat, and protein content of different foods

Effects of different macronutrients (carbohydrate, protein, and fat) on blood glucose

Understand portion size and how to estimate/calculate

Fiber content and effects on blood glucose

How to read food labels

Glycemic index and glycemic load of different foods

Meal planning

Meal preparation

Effects of changing timing/amount of food intake

Appropriate snacks

Food and drink to treat hypoglycemia

There are many reasons for poor adherence to treatment recommendations for patient lifestyle education, including restrictions on reimbursement by medical insurance providers for MNT or diabetes self-management training (DSMT) sessions. There is also inadequate patient access to certified programs, especially outside of major urban areas. But, other barriers also prevent healthcare and research institutions from making patient lifestyle intervention a priority in T1D treatment. As previously noted, attitudes regarding the role lifestyle factors play in T1D management, relative to their role in T2D or compared with the growing effort to develop CLC technology, contribute to the perception that diet and exercise are secondary concerns. There is also the notion (with some basis) that lifestyle modification can be frustratingly difficult to achieve, and this may decrease enthusiasm for referring patients to MNT or DSMT even if insurance reimbursement and good programs are available. Another common belief is the idea that only the most highly motivated patients are likely to benefit from lifestyle intervention, which, in turn, may lower the probability that those with the greatest need are referred.

At the other end of the spectrum, physicians and healthcare practitioners can overestimate lifestyle knowledge and skills in some T1D patients, especially those who follow intensive and highly sophisticated regimens, including use of diabetes technology. In fact, there is actually quite a bit of evidence22–24 that T1D patients are not that highly skilled at tasks such as carbohydrate counting, which can have a negative effect on glucose control (although, not surprisingly, parents of children with T1D may be better at this task). Our focus group interviews with participants in AP trials at the University of Virginia Diabetes Technology Center found that only about one-third of patients say they are confident in their carbohydrate counting skills.25 And, these individuals are typically highly engaged and invested in diabetes self-management, often utilizing the most sophisticated technologies available. If this “elite” patient population is having difficulty with basic lifestyle skills, what is the likely status for the more typical individual struggling to manage T1D? Restrictions in access and insurance coverage may not be the only, or even the most important, obstacle to reaching the goal of providing all patients with T1D adequate lifestyle education. Although it is easy (and valid) to complain about limitations in reimbursement and access, an interesting and potentially revealing statistic might be the number of annual MNT and DSMT sessions available to T1D patients that are not utilized.

Contemporary research and clinical practice in T1D are distinguished by two very different but co-existing “realities.” One reality is characterized by technological advances presently on the verge of producing CLC systems and other technologies with the capacity to transform T1D management. The other reality is characterized by the failure to provide patients with T1D with the most basic lifestyle education and skill training needed for optimal glucose control. The AP Initiative (and similar initiatives) has demonstrated the truly incredible accomplishments that are possible when scientific funding agencies, biotechnology industries, and diabetes advocacy organizations join forces to reach a goal. It seems at least a little ironic that the diabetes community will likely manage to build an AP system for outpatient use sooner than it can disseminate adequate lifestyle education and training to all people with T1D. Perhaps there will someday be a Patient Lifestyle Education and Modification Initiative.

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