I am greater than my highs and lows.

Recently, I had my first diabetes-related emotional breakdown. It was surprising to me even in the moment because I never thought that diabetes would break me—at least emotionally. I had been struggling for over a month with my pump and CGM supplier, with hours-long holds, unhelpful calls, and overall seeming unwillingness on their part to try to help patients. This was on top of not sleeping well due to frequent overnight lows, yeast infections due to unexplainable sustained highs, and hundreds of dollars in copays for doctor visits and prescriptions over just a few weeks.

“Why me?” I muttered over and over as I sobbed. “I never even did anything. I’m a good person. I just don’t get it.”

I recall that at one point, I started to remind myself that there are worse conditions to have than diabetes, so I shouldn’t complain. But as I am learning to acknowledge pain and struggle as relative, I reminded myself that my pain and struggle are still pain and struggle—to me. So I let myself cry while feeling terrible about diabetes and being mad at the world.

Putting words to this moment is making me tear up. But the reality of this and any other chronic disease is that it’s not all sunshine and rainbows, even if social media portrays it as such. Diabetes is complicated in so many ways. One of my biggest struggles is looking healthy. When I look healthy, people assume I’m well. And when people think I’m well, I of course have to live up to that expectation. So I don’t tell them about my real state of being. I don’t talk about the highs and lows of diabetes (no pun intended), the long-term consequences I’m worrying about, or the struggles with suppliers and insurance that I have no choice but to handle.

At this point, I need to point out that when I looked my healthiest, i.e. when I was the thinnest I’d been in my adult life and my family members and friends all told me I looked great (which leads to an entirely different conversation we’ll have another time), my diabetes management was actually well on the decline—I was, in fact, not great. I was constantly high and I did nothing about it. Quite frankly, I didn’t care. Apart from pump and CGM site changes and boluses for meals which I performed begrudgingly, I essentially ignored diabetes. Additionally, by that time, I’d already been diabetic for two decades. I thought I knew everything I needed to know and thought I could manage effortlessly. So I gave it no effort.

Consequently, my diabetes management was out of control for years, and in 2017 my body began to concede to diabetes complications I always read about but always thought I was impervious to. So in 2018 I completed my half-marathon journey, for which I have received much praise but throughout which my diabetes management was still far from good. When at the beginning of the next year my A1C shockingly hit an all-time high of 12.1% and the beginnings of complications from the year prior were still looming, I finally took it seriously. By July, I had gotten my A1C down to 7.6% with more intentional carb-counting and bolusing. It was a humbling process. It turned out I didn’t know everything, after all.

After the praise my doctor gave me and the happiness I felt for myself that day, I slipped up. And continued slipping up. It wasn’t that difficult to get down to 7.6%, but it was all the easier to just slip up. Again—effortless.

As the downward spiral continued, I began to chastise myself when I managed to check my CGM data, which always indicated a very sub-par time-in-range. Yet, I still didn’t make much of an effort to improve. When I broke my foot in February (also a conversation for another time), I had absolutely no excuse to not better manage my diabetes as I sat at home all day, every day. Now with the quarantine, the sitting at home all day, every day continues. And quite frankly, as much as it sucked to not be able to get around with the broken foot and as much as it sucks to not be allowed (socially accepted) to go anywhere during the quarantine, this period of time has been a blessing in disguise, blood sugar-wise. Mostly. Other than the emotional breakdown.

Because I’ve been cooking 95% of my meals, I know exactly what to bolus for, and I keep track of CGM readings as I sit and work, sit and Netflix, sit and snack… You get the idea. Lately, I have still been waking up at ungodly hours due to lows and still have a pattern of post-dinner highs, but I have finally received my complete set of pump and CGM supplies (along with a complete set of invoices). CGM data at this point indicates that my time in range has been nearly 70% for the past two weeks, which is immensely more than I can say for the past several years. I spoke with my diabetes nurse a few days ago, and he said that I’m doing well; we’re both hopeful that with the new pump software update, my control will get even tighter and my A1C will improve.

While writing all of this, I have also been reflecting. When I was younger, my mother always took care of me. She checked my blood sugar until I was eight, gave me shots until I was 11, and still micromanaged my diabetes (for better or worse) until I was 18. I got angry a lot—mostly because of her micromanagement and consequently all the things I wasn’t allowed to do. Additionally, I hated being high because it made me feel crappy physically and because of how my mother reacted to it. I was angry about having diabetes. I was angry that life chose to burden me, of all people, with it. I just didn’t understand. I was mad. I was indignant. And I was careless. But I had my mother to ensure that at least my blood sugars were in check—that is, when I was in her sight.

As an adult now, I admit I never thought about it that way as a child. I never thought about her micromanagement as caring, and I never thought about her caring as crucial to my physical health. I’m pretty sure that the start of college was the start of my decline diabetes-wise, as I had more freedom than ever—so I did whatever I wanted. Looking back now, a small part of me wishes that I had let my mother keep taking care of me, so that my diabetes management would never have gotten so out of control.

I also realize as I’m writing this that as I’m crying out, “Why me?” and crying all these tears about it, my mother probably did too—when I was hospitalized and comatose and then diagnosed a few days later, and then for years after, none of which I saw. Suddenly I feel for her. She also has never done anything bad. She also is a good person. She didn’t deserve this either.

When I received a Lilly Diabetes Journey Award last year for having “successfully managed diabetes” (ha) for 25 years, I attributed it it to my mother. For so many years, she took care of me through my highs and lows as she went through her own highs and lows that I’m only now recognizing and appreciating.

So, despite the endless struggles—past, present, and future—I am greater than my highs and lows—and so is my mother.