There’s a tattoo I’ve seen all over the internet that’s popular with Type 1 diabetics. The tattoo is simple, and looks like this: I > /\ \/ (here it is on a t-shirt). The meaning is “I am greater than the highs and the lows.” Of all the things I’m likely to get as my first tattoo, I don’t think this is the one because I’m much more likely to go with a medical alert tattoo. But I understand the thought process. So much of what we experience as T1s is about avoiding highs and lows, correcting highs and lows, and often, trying to explain how highs and lows feel to friends who don’t have T1. Everyone experiences the extremes in blood sugar in their own way. At least right now, this is how they feel for me.
Low blood sugar is something I didn’t comprehend coming into my T1 diagnosis. When I met with the Certified Diabetes Educator at my endocrinologist’s office, she asked if I’d been low yet. When I said no, she told me that I would and that I wouldn’t be able to miss it. She wasn’t kidding! My experience with low sugar so far differs between when I’m sleeping and when I’m awake. When I go low when I’m asleep, I can wake up to feeling my heart pounding or to what feels like a powerful hot flash…broiling hot, crazy sweaty, and immediately suspicious that something T1 is going on. Sometimes it’s the diabetes. Sometimes…I’m a woman in my 40s and menopause isn’t that far off! A low when I’m awake doesn’t come with a hot flash for me. Typically, a low has me weak and shaky. It makes me irritable and hungry…there’s that theme I mentioned earlier! It can make me crave a major carb binge – I want pizza, ice cream and popcorn all at once. If I’m super low, it can make me irrationally emotional. This is sometimes the point where I wind up in tears and cursing T1. The worst kind of low for me is when my brain panics. As ridiculous as that sounds, it’s the only way I’ve found to describe it. I can be completely in control of what I’m doing and explain to whomever I’m with that I know what I need to do to resolve the situation. But at the same time, my brain is screaming “fix this, we’re dying! DO SOMETHING!!!” It’s a very primitive instinct that I’m conscious of, and it’s bizarre.
As I've said before, T1 is a roller coaster. Not just the highs and lows, but the emotional impact from both extremes. Highs are frustrating and feel like failure. If I didn’t eat those fries at dinner, this wouldn’t happen. If I calculated my insulin right, this wouldn’t happen. Lows…lows feel like failure too. If I calculated my insulin right, I wouldn’t be in this mess. If I’d been eaten something to get myself a little higher before I went to bed, I’d still be sound asleep around 100 right now instead of lying here awake watching and waiting for the CGM curve to turn. It goes on and on and will make you crazy if you let yourself think that way. And that leads to the message that I am, that we are, greater than the highs and lows. I’m going to succeed, I’m going to screw this up, and I’m going to keep trying because T1 is about so much more than a number. I am much greater than any number.
High blood sugar is the thing non-diabetics are typically aware of because that’s what doctors and commercials talk about. Consistently high sugar over a long time can lead to blindness, amputation, heart disease…a whole host of bad things that nobody wants. Short term, super high sugar can lead to diabetic ketoacidosis, or DKA. This is hospital time. I was fortunate that when I was diagnosed that my sugar hadn’t gotten to DKA levels. A lot of people are diagnosed when they’re hospitalized in DKA. When a T1 diagnosis is missed, I’ve seen too many stories about kids dying from the damage their bodies suffer while in DKA. High sugar is no joke.
I don’t always know physically when I’m high. One night recently after a dinner of Chinese food, the alarm on my CGM went off when I hit 180 and I had no clue that my sugar started shooting straight up as soon as I ate. Fortunately the insulin soon took over and the curve turned back down right around the time my alarm went off. When I do feel a high, a lot of what I experience is feeling like my heart is pounding out of my chest. Truly, it’s a sugar high and the heart palpitations that go along with it. Being high can make me irritable and hungry, which you’ll soon notice is an unfortunate theme.
The highest I’ve seen my digit is in the 400s. The first time was early after I was diagnosed and had no clue what I was doing. I went to Mitchell’s ice cream with an almost empty insulin pen…but that didn’t stop me from having my treat. Not smart, and I was flying high for a while before I got home to correct the situation. The second time I saw 400 was when I completely miscalculated the carbs I was going to eat in pizza and breadsticks at my sister’s house. Also not smart, and had me pounding water to dilute my sugared up bloodstream and waiting for my insulin to kick in before I felt safe going to bed.
The flip side of the highs is the lows. Low blood sugar is a short term problem, and a scary one. Your brain uses glucose for energy, so when my digit is 50 I’m not operating anywhere near full strength. Being low can lead to disorientation, passing out, or most terrifying to me, it can cause seizures. Anyone who knew me in high school can imagine that the prospect of another seizure is something hard for me to accept and a place I don’t ever want to go. Lows at night can be so dangerous that parents of T1 kids set alarms and wake up through the night to check their sugar in part to avoid “dead in bed syndrome.” That one is pretty self-explanatory. Lows are also no joke.
Low blood sugar is something I didn’t comprehend coming into my T1 diagnosis. When I met with the Certified Diabetes Educator at my endocrinologist’s office, she asked if I’d been low yet. When I said no, she told me that I would and that I wouldn’t be able to miss it. She wasn’t kidding! My experience with low sugar so far differs between when I’m sleeping and when I’m awake. When I go low when I’m asleep, I can wake up to feeling my heart pounding or to what feels like a powerful hot flash…broiling hot, crazy sweaty, and immediately suspicious that something T1 is going on. Sometimes it’s the diabetes. Sometimes…I’m a woman in my 40s and menopause isn’t that far off! A low when I’m awake doesn’t come with a hot flash for me. Typically, a low has me weak and shaky. It makes me irritable and hungry…there’s that theme I mentioned earlier! It can make me crave a major carb binge – I want pizza, ice cream and popcorn all at once. If I’m super low, it can make me irrationally emotional. This is sometimes the point where I wind up in tears and cursing T1. The worst kind of low for me is when my brain panics. As ridiculous as that sounds, it’s the only way I’ve found to describe it. I can be completely in control of what I’m doing and explain to whomever I’m with that I know what I need to do to resolve the situation. But at the same time, my brain is screaming “fix this, we’re dying! DO SOMETHING!!!” It’s a very primitive instinct that I’m conscious of, and it’s bizarre.
The lowest I’ve ever seen my sugar on my meter is 26. I was just a few months into my diagnosis, had no clue what I was doing, and I have no idea how I didn’t fall over and wind up in an ambulance. I was in Las Vegas with the friend who is now my chief sugar stalker, we had some margaritas with chips and salsa, and I guessed pretty randomly about insulin dosing. Not a good combination and I’m fortunate that my friend was there to bring me chips, a roll, and…a beer to bring my sugar back up. Now that I’m using a CGM, lows can’t sneak up on me quite the same way. A couple of weeks ago I dosed for popcorn before a movie and settled down during the previews to enjoy my snack. My body had other plans, and as I ate my sugar kept falling. I left my seat so I didn’t interrupt the movie for anyone else and watched probably the first 30 minutes of “Jason Bourne” standing in the hallway to the theater entrance while simultaneously watching my sugar readings on my phone and chewing glucose tabs. I ate popcorn and glucose and I was still falling. Eventually the number did what it was supposed to do and got back over 100, but not before I fell below 40 on the Dexcom. Anything below 40 doesn’t register a number, so the reading on my phone and that of all 3 sugar stalkers was just “LOW.” The only symptom that time was I felt a little shaky. No panic, no brain crisis, just focusing on managing the situation. Sort of a controlled panic. I don’t ever want to see that reading again, but if I do I hope I’m in as much control as I was the first time.
This is what I saw on my phone that night at the theater before things turned around. The trend line shows me dropping from somewhere near 100 to 40 in just about an hour. I don't know why.
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