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Sharing My Story: What 22 Years of Living with Diabetes Have Taught Me

April 28, 2020

Sharing My Story: What 22 Years of Living with Diabetes Have Taught Me

women wearing diabetes shirt and flexing muscles

Christel is a Los Angeles based speaker, writer, diabetes coach and diabetes advocate. She has been living with type 1 diabetes since 1997 and at an early stage decided that it wasn’t going to slow her down. Her motto is “There is Nothing You Can’t do With Diabetes”. She writes about how to be Fit With Diabetes on DiabetesStrong.com. She also coaches people with diabetes from across the globe, online and in-person, and supports them in meeting their health and fitness goals. Christel holds an MBA in Finance & Strategy and an ISSA Personal Trainer certification with specialization in Fitness and Diabetes (Level 3 certified from the Diabetes Motion Academy). You can follow Christel on Facebook and Instagram.

What 22 Years of Living with Diabetes have Taught Me

Living with diabetes is... well, interesting to say the least. Making sense of blood sugar management requires a good understanding of the human body, how food impacts blood sugars, and how a lot of other things impact your blood sugar as well.

I often hear people say that blood sugar management is “random.” I disagree! Our bodies are not random. However, we don’t have full knowledge of what’s going on inside our bodies so being able to accurately predict how our blood sugars will behave at all times is, in my opinion, unrealistic.

That doesn’t mean that we should give up or that good diabetes management is out of reach. What I think it means is that we have to learn as much as we can about diabetes and our bodies to have any chance of being even remotely successful.

Reflecting on my 22 years of living with diabetes, I’ve learned a lot and I’ve made many mistakes. But if I were to distill everything I have learned down to four key learnings, it would be these:

Diabetes management is not static

Wouldn’t it be nice if diabetes management was just taking a shot of insulin and not having to worry any more about it? If you live with insulin-dependent diabetes, you know that this just isn’t the case.

Diabetes management is an ever-moving target and as our insulin needs change over time, we must be ready to adjust and adapt.

What makes our insulin needs change over time can be everything from hormonal changes to body size, physical fitness level, sleep quality or even stress patterns. So what you did a year or even a month ago might not be quite right for you anymore.

There’s no mystery to this, it’s simply that your body now has different needs and you have to adapt.

The first time this really hit me was when I went from exercising once in a while to 6 days a week (I know, I have an interesting way of enjoying myself 😉). Not only did my body composition change, but my activity level went up drastically and those two things combined meant that I needed much less insulin to manage my diabetes.

Just continuing to manage my diabetes with the same correction factor, carb ratios, and basal rates would mean that I’d be experiencing hypoglycemia all the time. So I adjusted my care to fit my needs and have continued to do so every time my body's needs have changed.   

For diabetes management is not static, and what works for me now most likely won’t work forever.

There are patterns to blood sugar management

We are all humans and these blood sugar patterns generally apply to all of us. However, how exactly to manage those patterns will depend on our bodies and what we’re comfortable with.

This partly ties back to my point about blood sugar fluctuations not being random. Generally, blood sugars will respond to certain things in certain ways for all people, we might just not always understand exactly why we see a certain reaction.

For example, injecting insulin will reduce blood sugars, but how much a unit reduces your blood sugar might be different from how much it reduces mine. Going for a brisk walk will for the majority of people intensify how strongly insulin works, thereby reducing blood sugars, while stress or lack of sleep makes most people more insulin resistant, meaning they need more insulin to lower blood sugars.

Learn more about insulin

When I started to gain a better understanding of the general patterns, it became easier for me to isolate the different things impacting my blood sugar and getting my diabetes management dialed in. One of the biggest aha! moments was probably when I finally realized that coffee was making me insulin resistant and how to deal with that.

There’s no such thing as a diabetic diet

I’ve experimented with a lot of different ways of eating since my diagnosis in 1997. Some worked well for me and some really didn’t.

What I’ve come to realize is that what works well for others doesn’t necessarily work well for me, my mental state or my blood sugars. There simply isn’t a one-fits-all model when it comes to food.

I think it’s important to try out different ways of eating, but it’s also important to be brave enough to stop eating a certain way if it doesn’t work for you.

One way of eating that many people with diabetes seem to like is keto. With the keto approach, you keep your carbs low, your fats high, and your protein moderate. I realty wanted to like it (because I enjoy cheese and steak), but my body hated it. I became incredibly insulin resistant and was just eating way too many calories. So I went back to eating a moderate amount of carbs and that works for me.

But that’s the thing, maybe keto is right for you, or maybe vegan or a flexitarian diet is. What is important is that you figure it out for yourself.

Learn more about what you can eat

Acceptance and self-compassion are what’s going to pull you through

Diabetes management is hard, we don’t have full information on what’s going on in our bodies, and there’s no way your blood sugars will stay in range 24/7. There will be days where nothing seems to go your way or you’re just sick and tired of it all. And that’s OK!

I think the key to mentally surviving a long life with diabetes is having self-compassion, acceptance of the condition and accepting that it can’t be controlled 100%.

This can be hard, especially if you’re a type-A personality like I am. I put a lot of effort into it and it can be frustrating when things don’t work out and I end up with wacky blood sugars. I can feel completely defeated when I wake up and realize I've been running high all night or when my blood sugars start to rise rapidly the second I open my eyes.

But it happens, and it will happen again. I try to learn from every experience, and sometimes the learning is “that was weird and unusual… moving on” but most of the time it’s my body asking for a diabetes management change. So I try to tell myself that a learning opportunity is not a bad thing, I try to not dwell on it, and I move on.

When it comes to diabetes, I think that the “Live & Learn” saying is very accurate, and although diabetes management will never be easy, I’ve found that over time the condition has become easier to manage as I understand diabetes and my own body better.

Christel Oerum