6 Tips From Someone Who Has Lived With Diabetes for 50 Years

Living with type 1 diabetes for almost five decades has taught me countless lessons about managing the condition and all that comes with it, while maintaining a sense of normalcy and navigating both the challenges and rewards of daily life. 

The beginning of my journey with diabetes started in 1975 at age 12 when I was first diagnosed. I was admitted to the hospital for a week of stabilization and education; I was given an orange, a syringe, and a vial, and was taught how to draw a dose and inject the orange. I then had to muster the courage to stick the needle in my thigh because I was told I’d have to do it every day for the rest of my life. Next, I was taught how to test my urine for glucose (blood test strips weren’t available until about eight years later).  

The hardest part was the education I was given on how diabetes would affect my body – that I’d experience complications possibly causing kidney failure, blindness, foot amputations, erectile dysfunction requiring a penile implant, and more. This was scary for a 12-year-old, knowing that the risk of complications was going to hang over me for the rest of what they told me would be a shortened life.

I’ve come a long way and learned a lot after that terrifying beginning. Thanks to my efforts – and especially diabetes technology – I’ve been able to avoid all but minor complications approaching my 50th anniversary with the chronic illness. I’m continually adjusting my practices as I figure things out, and as new technology and research become available. Below, I’ll share some of the best practices I’ve developed to help make life with diabetes easier and as manageable as possible.

1. Always be prepared with a “diabetes on the go” bag

Being prepared for any blood sugar situation is one of the cornerstones of good diabetes management. A “diabetes essentials on the go” bag is my traveling supply kit. It’s a vital part of my daily routine and is always ready to go when I walk out of the house. 

I keep mine stocked with a variety of different carbohydrates to ensure I’m ready to prevent or combat any type of low blood sugar episode. I carry these carbs in appropriate sized containers that hold only as much as I need for a day out of the house. Using containers versus food packaging keeps food fresh and protected from being crushed, which is important as I often go many days without needing to consume any of it. 

Here's what I carry:

• Nut or protein bars (low carb, around 5-10 grams of carbs per serving): Nuts (I like almonds) or low-carb protein bars are a quick and easy source of slow-digesting fat and protein. They satisfy hunger and can help to stabilize blood sugar without causing a spike.
• Trader Joe’s Biscotti (modest carb, around 10-15 grams of carbs per serving): Trader Joe’s biscotti come in a good portion size, stay fresh, and are easy to carry around because their dry and crunchy nature makes them less prone to being crushed. I find that the amount and type of carbs in biscotti provides a good base to modestly raise or keep blood sugar stable based upon insulin on board or physical activity.
• Trader Joe’s Fruit Jellies (high carb, simple sugar, 15-20 grams of carbs per serving): A quick-absorbing carbohydrate for fast-acting relief during modest lows or drops in blood sugar that need to be slowed or stopped, I find that one to two fruit squares will typically do the trick (for me, two fruit squares is equal to approximately 50 mg/dL or 1 unit of insulin on board coverage).
• Welch’s grape juice, 4 ounce bottle (very high, fast acting carb, around 45 grams): Juice is a reliable option that quickly elevates blood sugar. A couple of ounces is usually enough for me to feel the effects quickly without overshooting the correction. I only use juice to address a rapidly dropping or severe low sugar, or way too much insulin on board. By using juice, I’ve never had to resort to glucagon.

Sometimes all I need is a partial serving of any of the above to achieve my desired blood sugar result. Other times I combine carbs from two categories to get the job done.

Combined with my blood testing kit, having all of this packed in my go bag and bringing it with me whenever I leave the house ensures that I always have the tools I need to manage my blood sugar levels. Most importantly, my go bag eliminates the stress of being unprepared. That alone is reason enough to carry it, even if it sometimes makes me feel awkward carrying a pack wherever I go.

2. To get the best results from a pump, technique is key 

For those of us who use an insulin pump, understanding how to wear and use it effectively can make a huge difference in performance. Here are a few tips I've learned over the years:

• Wear your pump on the same side as your continuous glucose monitor. By wearing both devices on the same side of your body, you make it easier for them to stay connected and avoid out of range errors. You just have to remember to move the pump when you change the CGM insertion site.
• Always wear your insulin pump facing outward. I started doing this when I was told that the Bluetooth signal is sent and received from the face side of the pump. My experience has been that it reduces out of range errors.
• Exercise mode versus temporary basal rates. As we all know, insulin sensitivity changes when you exercise. Rather than reducing your basal insulin rate to zero to minimize insulin on board during exercise, activate your pump’s "exercise mode" to keep from going low (this is a feature of the Tandem t:slim X2). Using exercise mode vs. 0% or very low temporary basal rate will help to avoid a spike in blood sugar caused when eating post-workout due to the eliminated basal insulin in your system. The exception to this is when your blood glucose is in the higher part of in range or out of range. This guidance will vary based upon your insulin on board and blood sugar levels; the goal is to avoid getting an unwanted auto-bolus during exercise. I find it best to turn off the automation (for Tandem, Control IQ) in this situation to avoid getting auto-bolused and then turn it back on once whatever physical activity you’re doing brings you down to mid or the lower part of in range. Being proactive about these adjustments can save you a lot of frustration.

3. Sugar surfing: stay in range, stay in control

"Sugar surfing" is a term that refers to actively managing your blood sugar to stay in range, while avoiding major swings that get you out of range on either the high or low side. As people with diabetes know, staying within a healthy range is crucial for long-term health. I've found that managing blood sugar becomes much easier when you have a well-calculated plan for what brings it up or down, and by how much. Here are some tips for smooth sugar surfing:

• Know what brings you up: Experiment with different food items (biscotti, fruit jellies, etc.) to understand their exact, numeric impact on your blood sugar. Knowing this allows you to choose the right food and serving size to effectively address lows without overcorrecting and getting out of range. For example, if I know that two fruit jellies raise my blood sugar by 50 mg/dL, then I can eat the right number of them to address falling blood sugar or excess insulin on board without over adjusting. There are other factors to consider, such as physical activity and the content of recent meals, but knowing how to use food and insulin in a controlled manner will allow you to sugar surf effectively.
• Know what brings you down: Know your insulin-to-carbohydrate ratio for bolusing to reduce high blood sugars. In my case, one unit of insulin drops my blood sugar by 50 mg/dL. Knowing this allows me to calculate how much insulin I need to take to address high blood sugar without dropping low.
• Advanced technique: Combining a micro-bolus (as little as 0.1 units) with 15 to 20 minutes of fast walking can drop my blood sugar by 100 mg/dL or much more.  I typically use this technique post-meal to flatten the curve on a rising blood sugar and when I already have insulin on-board. I call this technique “advanced” because it can cause rapid drops in blood sugar – as much as 30 mg/dL in a five minute time frame – and can be very dangerous if not executed properly.
• Become a sugar surfing expert: The book that helped me understand these concepts best is “Sugar Surfing: How to Manage Type 1 Diabetes in a Modern World” by Stephen Ponder. It’s a great resource for anyone who wants to dive deeper into fine-tuning their blood glucose management regime with actionable strategies. The author is not only an endocrinologist, but lives with type 1 diabetes as well.

4. Managing stress: the silent blood sugar enemy

One thing I've learned over the years is that stress affects blood glucose levels – and not in a good way. Whether it’s work or personal stress, cortisol and other stress hormones can raise your blood sugar. Understanding this has helped me manage my diabetes and improved my overall health and well-being. Here are some strategies that have helped me combat stress:

• Mindfulness and meditation: Meditation has been a lifesaver. It’s not just about finding peace; meditation is about actively lowering my stress response, which in turn helps me keep my blood sugar stable. I’m specifically a fan of transcendental meditation because it’s really easy to do. All you need is a quiet room, a chair, and a timer to let you know when your session is over – about 15 minutes for me. There are great YouTube videos that provide the training you need to get started.
• Letting those close to you know how to help:  Getting support from friends and family goes a long way in addressing diabetes-related stress. Whether it’s a plan for conflict resolution that is not confrontational or a sympathetic ear to discuss the challenges posed by diabetes, friends and family are key to everybody’s happiness – including people living with diabetes.
• Exercise: In addition to speeding up your metabolism to help maintain insulin sensitivity, maintaining a desired weight, and combating the onset of complications, exercise is a great way to blow off steam, clear your head, and help you feel good. Personally, I start every day with an hour of cardio activity.
• Philosophy books: Philosophical books and online videos have also helped me manage stress in profound ways. Some of my favorites include:
  • “Meditations” by Marcus Aurelius. His Stoic philosophy has taught me to control my reactions to life’s challenges.
  • “Man’s Search for Meaning” by Viktor E. Frankl. This book helped me gain perspective on suffering and finding purpose, which is incredibly helpful when dealing with the challenges of diabetes.
  • “The Power of Now” by Eckhart Tolle. This book teaches mindfulness and presence, which are essential for reducing stress and focusing on the present moment, rather than worrying about the past or future.

5. Using apps to stay on track

Smartphone technology can make managing type 1 diabetes a lot easier. In addition to my CGM and pump apps, one of the tools I rely on is the iPhone Clock app (if you don’t have an iPhone, most smartphones have a preinstalled clock app) for its timer and stopwatch features. Here's how I use it:

• Set a five minute interval for low blood sugar testing: Have you ever heard the expression, “When in doubt, take the meter out”? When I’m treating a low, I set a five-minute timer to remind myself to retest my blood sugar. This helps me to avoid over or under-correction, and to adjust my treatment accordingly using real-time readings.
• Monitor treatment time for lows: Using the stopwatch function on the app, I can track how long it’s been since I started treating a low. This helps me assess whether the treatment is working or if I need to adjust my approach.
• Dexcom G7 warm-up timer: For those using a Dexcom G7 CGM, I set a 30-minute timer to track the end of the G7 warm-up. This keeps me on top of when to transition from my expiring sensor to a new one, especially when I’m in the G7 “grace” period.

6. Know your numbers: the power of precision

To truly manage type 1 diabetes effectively, you need to know your numbers inside and out. This means being intimately familiar with how the amount of insulin on board affects your blood sugar, how much insulin is needed to bring down a high (insulin to carb ratio), and how other factors – like stress or physical activity – that affect blood sugar can be treated. Here's what I keep in mind:

• Insulin on board: Always know the amount of insulin on board and what that means in relation to current blood sugar readings: Do I need more insulin or more carbs? If you’re approaching a low or high, this knowledge can guide your next steps in how much carbohydrates or insulin to take and when. For example, if your blood sugar is 100 mg/dL and you have one unit of insulin on board, then you may need carbs to prevent your blood sugar from dropping too low.
• Insulin-to-carb ratios and correction factors: Know your insulin-to-carb ratios (how much insulin to take per number of grams of carbohydrates) and correction factors (how much insulin you need to lower your blood sugar by a set amount). While the pump automation is very helpful, knowing the math behind it can keep you safe and provide more effective blood sugar management resulting in more time in range.

Final thoughts: living life fully with type 1 diabetes

Living with type 1 diabetes for 50 years has been a journey, and it’s one I’ve navigated with a combination of preparedness, technology, mental discipline, and an understanding of my body’s needs. That does not mean that it is not still super frustrating when what I expect to happen doesn’t. 

It’s taken too many years for me to figure out these best practices on my own, and that is why I’ve documented them here to share with you, my fellow T1Ds. While they will require some time and effort to incorporate into your routine, I hope you find that they help you manage your diabetes and enjoy a fulfilling life, despite the challenges. For me, they are the difference between controlling my diabetes versus diabetes controlling me.  

Read more inspiring stories about living with diabetes here:

• Beyond the Superhero Narrative: Bravery, Determination, and Resilience When You Have Diabetes
• Honoring Over 50 Years of Living With Type 1 Diabetes
• Aging with Diabetes: A Journey of Triumph and Resilience