Lots of times, I make diabetes look easy. Somedays, it is. But even on the easy days, it’s still work — a lot of work. I realized the other day (while talking with a friend about diabetes) that I don’t share what my daily life is like with most people. My family understands the work, families with D understand the work, but it occurred to me that those closest to me on a daily basis don’t understand the work. So this post is to help my friends understand what a typical day is like for me — even if I don’t always show it.
To explain some basics for my control so you can understand: my bloodsugar needs to remain between 80-150 mg/dL at all times. (That range is decided on by my doctor with my input. Your diabetes may vary). Staying in that range is impossible because my pancreas is totally jaded and doesn’t work. But with the use of my insulin pump, I receive a steady stream of insulin called my basal rate. I get .95 units of insulin every hour from 7 a.m. – midnight. From midnight to 7 a.m., I get 1 unit of insulin. That .05 units makes a big difference because my blood sugar raises on its own through my sleeping hours because my body is not active.
Whenever I sit down to eat, I program my pump to give me a bolus of insulin determined by a math equation. The equation is based on my blood sugar level and what I eat. For example, I have an insulin sensitivity factor of 38, which means for every 38 points above 100 my blood sugar is, I give one unit of insulin. I give 2 units of insulin for every 15 grams of carbohydrates I eat. But at lunchtime, I give 3 units for every 15 grams. (That’s because my blood sugar spikes after lunch, more than any other time of day). Also, when I first wake up in the morning, I have what is called “dawn phenomenon”. It means my blood sugar rises on its own without food or drink after I wake up. Lots of diabetics experience “dawn phenomenon,” but mine is not consistent enough to add a third basal rate.
Are you lost yet? ‘Cause we’re only just getting started.
I wake up around 5 a.m. (5:30 a.m. on days I hit snooze), and I take my dogs on a short walk around my apartment (or around my back yard if I’m too tired or it’s raining). Before we can go outside, I have to check my blood sugar through a finger prick which I then compare to my continuous glucose monitor, or CGM. Usually, I wake up in the 90-120 mg/dL range. If I take the dogs for a walk in the morning, I don’t decrease my basal rate because of “dawn phenomenon.” If we don’t go for a walk, I usually give a .50 bolus, then disconnect my pump and take a shower.
After showering, I check my CGM to see if I’m rising or holding steady. If I’m rising, I’ll give myself another .50 bolus and continue getting ready. Because “dawn phenomenon” happens within the first hour or two of being awake, I keep my CGM on my bathroom counter as I’m getting ready so I can check it throughout the morning.
I usually don’t eat breakfast. (I know, I know, I know). I’m at work by 7-7:30 a.m. and usually, I’m the only one in the office for about 30 minutes to an hour. By mid-morning, I’ve usually gulped down 3-4 cups of coffee. Some friends have noticed needing a small bolus for coffee, but I don’t seem to need one. Coffee doesn’t make my blood sugar rise. Also, I only drink it black or with Sweet N Low, so there are no carbs there from milk or cream. I keep an eye on my CGM throughout the morning as it sits next to my keyboard. If I hit 140 mg/dL, I will give a correction.
(I believe at this point, I should mention my insulin pump and blood sugar meter are linked together wirelessly. In addition, both are programmed with my insulin-to-food ratios and my insulin sensitivity factor. All I have to do is put in my blood sugar and hit “GO” and the machine(s) will tell me how much insulin to bolus. In short, NO MORE MATH).
Lunch time rolls around which usually involves eating a meal from home with colleagues in our small dining area. Today, I ordered in. I had a Zaxby’s grilled chicken salad without toast and lite ranch dressing. Thanks to the Internet, I know that salad has roughly 14 grams of carbohydrates without the bread (34 with the bread). The dressing has 3 grams of carbs, making it 17 grams total. Now, here’s the tricky part. The first two times I ate this salad (it’s one of my faves), I dosed correctly based on carbs, but my blood sugar still spiked afterward. There are also fried onions on the salad, and fried foods require an extra bit of insulin. While there is no scientific method to determining what to give in this type of situation, I estimate (again, from experience) that I should add 15 extra grams of carbs to my dose. So before I eat, I test my blood sugar. 137 mg/dL. I add that number into my pump, along with how many carbs I’m eating: 32 grams and my pump says I should give ???? units of insulin. So I add the information into my meter and hit “Go.” Then my pump gives me the dose.
As the afternoon approaches, I always test my blood sugar level. Since I’m prone to spiking after lunch, I like to keep a close watch. If I’m high, I will give a correction. At dinner, the same rules apply for lunch. Today, I cooked dinner at home. I made a homemade cajun tilapia with a light breading. I also roasted new potatoes and asparagus as my sides. While I love cooking, it’s often a challenge to know exactly what’s in my food. I can measure most things, but once they are cooked, sometimes the nutritional facts can change. For example, I measured out the bread crumbs before cooking my tilapia, but as you know if you’ve ever breaded something, you don’t use all of it when you’re coating the fish. So I have to use my best guess to determine how many carbs are in the fish I ate.
The same works for new potatoes. They don’t come with a nutrition label. I can estimate using past experience along with some Internet research on potato size to figure how many carbs I’m eating with my roasted potatoes. The aparagus, that’s an easy one — no carbs in veggies. Before eating, I checked my blood sugar. My CGM said I was 112 mg/dL, but my finger stick reading showed 127 mg/dL. While there is a 20 percent error margin for both, I usually side with my meter over my CGM. (Personal preference. Your diabetes may vary). I figured up 45 grams of carbs for dinner plus my 127 mg/dL blood sugar. I plug in both numbers and I get ??? units of insulin. I hit “Go”, and now I’m free to eat.
About an hour after dinner, I’m busy running around my apartment trying to straighten things, catch up on non-profit work and make sure #DevilDog is not eating something. (See inset photo). All of a sudden, I hear my CGM beep alerting me I’m low. I don’t feel low. I pick up my CGM and it says 64 mg/dL with an arrow straight down. That means I’m low and dropping fast. Since my CGM reads my blood sugar every five minutes, there’s a good chance I’m actually lower than it says. I grab my meter and test. My meter says 47 mg/dL. I try not to panic, but as the 47 mg/dL pops up on the screen, I am flooded with symptoms of being low.
I am sweating and my heart is racing. When I blink, the world seems to flash with my eyelids making it hard to focus on things. I try to stand up from the table, but my previous fast-moving legs won’t budge. They feel very heavy and wobbly. I’m unsteady and feel like I’m going to fall. I grab a hold of the wall and steady myself walking toward the kitchen. As I open the refrigerator, I hear my CGM frantically yelling at me and flashing a 51 mg/dL, still with a downward facing arrow. I swing open the refrigerator door. My mind is racing:
Where is the Capri Sun?Do I have glucose tablets in the drawer?Where are the dogs?Where is my phone?What if I have a seizure?I should lay out the glucagon.I should unlock my back door so the paramedics can get in. That way, I won’t have to pay for the damage.Where is the Capri Sun?Did I suspend my pump?Crap, I’m still getting insulin.Do I have crackers?Is that a spider on the counter?I should put orange juice on my shopping list.Crap, I think I’m still dropping.Why won’t the fridge door open?I can’t get it open.I need a Capri Sun.
While that can also seem to be my normal thought process, it’s not. Everything blurs together, like a ridiculously shameful run-on sentence. I’m not coherent and nothing seems to make sense. I have no strength so even opening the refrigerator is a chore. I know I’m low, and I know I need to do something about it, but it’s not always that simple when a severe low happens. It’s as if I’m no longer in control of my own body. My head is telling me what to do, but it can’t communicate with the rest of my body. It’s a terrifying feeling that has led me (more than once) to dial 9 and 1 on the phone ready to hit the second 1 the second I know I’m in trouble.
I sit down in the floor and fight #DevilDog to eat a piece of bread, a handful of preztels, a spoonful of peanut butter, four glucose tablets and drink two Capri Suns. In my world, that’s a major overcorrection. But even knowing that, there is no rationalization. After about 5 minutes, I retest. I’m 59 mg/dL. Better, but not great. I’m still shaking and sweating. It takes about 40 minutes for my heart to slow its pace and for my legs to regain their feeling. I steady myself on the counter and retest. I’m 124 mg/dL. Now, that’s more like it. I look at my CGM. It says 117 mg/dL with two arrows pointing straight up. That’s not good. That means I definitely overcorrected and I’m rising very fast. I reach for my pump, unsuspend it and give a 2-unit bolus hoping that will counteract the impending high. It doesn’t.
By bedtime, I’m 313 mg/dL, which is extremely high. I’m 313 after two small corrections based on my CGM in the past two hours. I look at my insulin pump and realize I have 6 units of insulin on board, which means that’s how much insulin is in my body still working. I can’t go to sleep until I’m below 180 mg/dL. (Your diabetes may vary). I correct half for the 313 and wait. Meanwhile, my feet and hands are tingling because my circulation isn’t up to speed. When I’m high, my organs have to work extra hard to do their jobs. I’m thirsty and I have to pee — classic high symptoms. I test for keytones by peeing on a stick — something I do anytime I’m above 240 mg/dL twice in a row. I have a headache that resembles that of a hammer hitting my skull. I want to sleep, but I can’t. It’s dark, so I can’t walk the dogs to help lower my number. All I can do is wait. It’s two hours before I break 180 mg/dL. I’m going to bed significantly later than usual, which will suck tomorrow morning. I’m also going to bed with a fear of having another low blood sugar based on my correction for the high blood sugar. I say a quick prayer that if I drop, my CGM beep will wake me up. I pray that I’ll sleep soundly and wake up in the morning. I pray that I will wake up. I pray for a day of better blood sugar and I pray for thanks for making it through tonight’s severe low — even if I overcorrected for it.
I did drop that night, but my CGM beeped when I hit 80 mg/dL. I woke up to the beep and I ate a couple of pretzels with some peanut butter and went back to bed. I woke up the next morning with a smaller pounding in my head and a blood sugar of 145 mg/dL. I’ll take it.
So that day is really not unlike any other. I am constantly waging a war for control. I’m cobatting lows to avoid highs and combatting highs to avoid lows. I’m better about overcorrecting than I used to be, thanks to my CGM. But when it’s a bad low and a fast low, I still overcorrect. Knowing a seizure and a coma is to follow, how can I not?
So yes, diabetes is easy — most of the time. But it’s not always. And sometimes, most of the time, I carry that weight alone. But there are moments when I wish people understood how taxing diabetes was. When no one shows up to walk on my team. When no one shares a few dollars for research. When my friends don’t “like” my Dia-Beat-This page on Facebook or take time to comment or ask how I’m doing, it sometimes bothers me. I know if people understood the constant weight, they would care just a little more.
I don’t wish diabetes on anyone, but these are some really heavy shoes to walk in. Trying them on for a day might shed a new light. I don’t want pity, and I certainly don’t need your sympathy. But I would like for those close to me to understand the struggle of my daily grind. I would simply like for people outside of the DOC to care. I just want people to care. If not for me, care for others. For the millions of children who can’t go outside and play until they check their blood sugar. For the chilcren who have to test before taking a test.