5 Things I Wish I Knew Earlier on my t1d Journey
Updated: Aug 31, 2021
Fat is as important as carbs for bolusing. I'm not going to go into a nutrition lesson here, but it's important to know that carbs aren't the only thing to consider with bolusing. Perhaps the best example I can give for this is pizza. All t1d's know that pizza causes some strange things a few hours after it's eaten. You think you nailed the bolus and then WHAM the dexcom is going up up up and it won't come down. This is due to the dietary fat. Eating high fat food increases the difficulty for your muscles and liver to metabolize glucose effectively (source: Mastering Diabetes). This makes the spike less predictable and more difficult to come down, resulting in that stubborn extended high. No, this doesn't mean you have to eat low fat to have good blood sugars. You can if that's your jam, but it's not the only way. It's more about being mindful of what's happening so you can better predict how your sugars will react.
A lower a1c doesn't mean better control. For the first 18 years of my life with t1d, the only thing my doctor mentioned to determine my control was my a1c. And shocker, it was never very good. To be fair, I did not have a cgm at this point so there was no "time in range" metric that my doctor could have brought up. But anyways. When I finally did get a freestyle libre, my a1c dropped by nearly 2 whole points! The kicker is, I didn't actually have better control. My graphs looked like mountain ranges that never ended. It was a constant game of correcting highs and correcting lows. When I finally got this first "good" a1c back from the endo, I cried. I was SO happy. But she wasn't. For the first time, she was able to see how much time is spent out of range, especially below target. I had become so focused on chasing that lower a1c that I didn't realize that lower doesn't always mean better. Moral of the story: Don't base everything around your a1c. Standard deviation and time in range are important aspects of diabetic health too.
The relationship with your endo isn't as important as the relationship with yourself. In other words, you have the power. I spent a lot of years listening to my endo and only my endo. Basal/long-lasting insulin and ratio changes were only changed during appointments. My a1c's were consistently over 8, sometimes in the 11's and 12's. Endos go to medical school and learn the science of diabetes care. They are very smart and understand all the risks and implications of insulin. They are great resources and can help you see things that you may not even be aware of. But you know yourself and your body more than your doctor ever will. Trust your intuition. I make many small changes to my basals and ratios in the time between my appointments when I notice patterns and trends. I make my own care decisions when it comes to exercise, especially long runs. I trial and error EVERYTHING to see how it works in my body. Our bodies and our insulin sensitivity is always changing. Having a good relationship with myself and feeling empowered to act on trends changed everything for me. Listen to your endo, but more importantly listen to yourself and your experiences.
What they're doing isn't necessarily what you should be doing. The first step that I took on my diabetic health journey back in 2017 was Whole30. I had read a testimonial from another type one diabetic who had talked about majorly lowering their a1c with Whole30, and I felt like I had found gold. This lead me to scourer the internet for more evidence that paleo (no grains, less processed food, more meat and vegetables) was the answer that I had been looking for. Everyone came back with the same result: if you're t1d, paleo is the way to go. Given this information, it was quite frustrating when my own experience ended differently. Not only did I end my paleo experiment result in a higher average monthly blood sugar (I didn't have a CGM at this point, but according to mysugr), but I actually had terrible stomach pains and was constantly on the toilet. So although I constantly rave about a plant-based diet (and from the bottom of my heart and brain, think it's the best way for me to eat), I want to be clear that out of 1 million type one diabetics, there are 1 million unique and "perfect" approaches to diabetes care. And this goes beyond just diet, but to all aspects of type one care (pump vs. MDI, cardio vs. resistance training, insulin types, medical supplier companies, etc.).
Don't let fear decide your fate. Besides this being one of my all time favorite quotes in general, it has such an importance in diabetes care. For years I was afraid of standing out so I chose not to wear a pump and cgm, check my sugar/give shots in public, or talk about what I needed if I had a high or low. This fear decided my fate of bad diabetes management. I talk to a lot of people over DM's about being afraid to go for a run, or afraid to start exercising for fear of lows. I know that people are afraid of eating carbs for fear of spikes. Now fear, especially in diabetes care, can hold some worth. Obviously we don't want to ignore diabetes or it's possible consequences. It's not a risk-free disease. But instead of giving into fear by choosing the easiest way out (avoiding), let's find a way to work WITH diabetes and use that synergy to accomplish and do everything that we want! Reframe the fear as being aware of risks, and then learn how to live your life on your terms. How? Trial and error. Start slow. If you're afraid of carbs and currently eating a low carb diet, you don't have to go ahead and eat a full-cup of rice with every meal. But slowly start to add more carbs into your diet. Or if your fear is with running, start with 10 minutes of running a day to learn how your body reacts. If you're afraid of bringing up diabetes to acquaintances or co-workers, start by talking about it more openly with close friends or family first. Overtime, you'll start to realize that these fears don't hold as much weight. I can tell you that 5 years ago I would have been mortified, embarrassed, and scared out of my mind if you would have told me that I openly talk about t1d to thousands of people on instagram. For years, I wouldn't even tell my teachers and friends that I had it. But slowly, as I began to accept my disease and talk about it to people around me, the fear slowly went away. Same with carbs! Two years ago, I would freak out of I ate a meal with more than say 50 grams of carbs. These days, I'm eating 200+ grams of carbs in every meal!
Whether you're newly diagnosed, or have had this disease for more than 2 decades like me, the beautiful thing about diabetes is that is constantly teaches us how to approach things with a beginner mindset. Once we think we have the answers, BAM we learn something new. I am learning things everyday! So to sum up this blog, I will say that although I am giving you 5 things that helped my journey, they may not be applicable to you right now (or ever). You may read something like this, tuck it away, then come back to it when you're ready to apply it to your life. And that's perfectly okay.