People with diabetes make roughly 200 more decisions a day than the average person. If you are writing a character with diabetes, they are going to think about it. Incessantly. I check my blood sugar, if I had to guess, about seven times an hour on average, more if I notice it's moving up or down at a rate faster than I want. We make decisions on what to eat, how much to eat, how much insulin to take. These answers depend on the number of carbs in a dish, if you've exercised / what kind of exercise you've done, how much water you've had to drink, so on and so forth. If you exercise, drink lots of water, and get good sleep, your blood sugar is more likely to be regulated and stay down. Blood sugar can also tank while you're working out (especially if you've taken insulin recently), while you're sleeping, or when you're doing something important. If you don't exercise regularly, you're dehydrated, or you didn't sleep well, your blood sugar is likely to be higher. Also if you're sick, stressed, or do intense cardio like running or dancing, your blood sugar goes up. When in doubt, assume their blood sugar will go up. Safe to say, you are always thinking about it.
The Dangers and Dealings
T1's have to consider two dangerous circumstances at all times; hyperglycemia and hypoglycemia.
Hyperglycemia is when your blood sugar is too high. Endocrinologists (that's the diabetes doctor) tend to say anything above 180, although people who have had T1 for a while try to stay below 130. My target range is usually 160 or lower. High blood sugars can come across as intense thirst (which leads to A LOT of bathroom breaks, I went to see the FNAF movie before I got diagnosed and left to pee three times during the movie), fatigue, dizziness, or what I like to call head nausea; nausea that is not in the stomach. You'll know if you've felt it before. Long spans of time with hyperglycemia leads to DKA, Diabetic Ketoacidosis. This is what gets people hospitalized, in fact, it's what got me hospitalized and then later diagnosed. Usually the danger here is coma or death. I remember on my hospital sheets it said "Diabetic Ketoacidosis, without coma" and I stared at the sheet for a while and thought to myself "wait, coma was an option?"
Yes. Yes it was.
Hyperglycemia is treated with insulin. We call that "bolusing". You bolus insulin before you eat (usually fifteen to twenty minutes before, to give the insulin time to start working) to avoid hypers based on a system your doctor makes for you; for example, I need one unit of insulin for every six grams of carbs I want to eat. This can be altered a little bit depending on the food itself. If I want to eat an ice cream cone that's 38 grams of carbs, I'll probably take eight units of insulin instead of six or seven, just to be safe. If you don't catch a hyper in time, you bolus insulin to bring your blood sugar back down. Stubborn highs lead many, MANY people to something we call "rage bolusing", which is when you are so infuriated that your blood sugar won't go down, you inject yourself with more insulin than you know you need just so your body will FUCKING DO IT'S JOB.
Rage bolusing can sometimes lead to Hypoglycemia, which will kill you much faster than Hyperglycemia will. Usually this is considered when a person's blood sugar is below 60. Blow 55 is when we get into seizure, passing out, coma, dying territory. For me, I get really overheated and sweaty when my blood sugar is low. You also get dizzy, fatigued, weak, and experience a lot of mind fog. It's very hard to think when your blood sugar is low, and more often than not, you end up guzzling down any food in your line of sight until your blood sugar is inevitably much higher than you want it to be. Usually if your blood sugar is low, it's recommended that you eat fifteen grams of carbs to bring it back up; think a singular airhead, or half a juice box, or a handful of m&ms. But the lower your blood sugar, the more likely that "singular airhead" is going to end up being three handfuls of trail mix, four spoons of ice cream, a mini kit kat, some milk, and six cubes of cheese, for balance. And then a few chocolate chips five minutes later just to make sure. You experience the physical symptoms of hypoglycemia after a long period of hyperglycemia as well, since your body has gotten used to the higher blood sugar as it's new normal. When it goes back down to genuine normal numbers, your body believes that you're blood sugar is way too low, and acts accordingly. Sadly, there's nothing you can do about that. You've just got to ride it out.
Devices
Most people use pumps for their insulin. There are two types that are the most common, one that's like a large tic on the side of your body, and another that is a small plastic tube, attached to a device that you have to clip onto the side of your shorts.
These devices have insulin inside of them and are controlled through an app where you say how much insulin you want to give and it will immediately give it for you. They also, I believe, can automatically give you insulin if your blood sugar starts to go to high, but don't quote me on that. Pumps have to get changed out every three days, and I don't want to do that shit, so I don't.
Instead, I use pens. Pens are not attached to your body, but that does mean you have to remember to bring them places when you need them. They're little needle pens - I have two, a short acting for meals and a long acting I take once at the end of every day - that give you all the insulin the pumps do.
There are also CGM's, Continuous Glucose Monitors. These get stuck to your arm, leg, or stomach and get switched every ten days. They are also connected to an app, so you can know what your blood sugar is at literally whenever. You do have to worry about them getting caught on things, like doors or bras, and sometimes you will experience "pressure lows", which is basically when the CGM reads your blood sugar wrong because you're leaning on the device.
The most common types of CGMs are the Dexcom G6, G7, and the Freestyle Libre. I use the G7 because it's the smallest and least likely to get caught on doors, plus it comes with it's own over patch. CGM's are attached using a little sticky tape around the edges, and this tape peels off with movement and interaction with water. When I had the G6, it was a STRUGGLE to find over patches that actually stayed on, and inevitably within seven days, my CGM would be halfway off. The G7 isn't as accurate, but I like the smaller size and the fact that I can sleep however I want without worrying about the tape falling off.
Finally, we have glucometers. Glucometers are used when you don't have a CGM on, or you think your CGM is reading inaccurately (which happens fairly often, at least in my experience. You prick your finger with a lancet (those little blue sticks in the picture, they're small needles you put in the white cylindrical device on the left, which then pricks your skin), place a test strip (the white, blue, and black rectangles beside the lancets) into the glucometer device, then stick the end of the test strip into your blood so it goes into the device and reads your blood sugar. There are plenty of videos online that show the whole process pretty thoroughly. You can almost always trust the reading on a glucometer, and if you are diabetic, trust, you will find discarded test strips literally everywhere, all the time. You may think you've thrown them all away, but you haven't. They're around forever, like a troll that steals socks only it's a troll that leaves test strips.
How does diabetes feel?
Bad. It feels bad.
Go back to the list of symptoms for hypers and hypos I listed above, and imagine having those symptoms randomly, every day, with nothing wrong. True, they are symptoms for something bad, but a lot of the time it's just the way you feel, with no real reason. I read a book about diabetes that said the best way to live your life is by trying not to obsess over it so much, and then, in the next chapter, the book said that the people who have the best regulation on their blood sugar catalogue what they eat, how much, how much insulin they take, and how much exercise they do over the course of several weeks and then look back at the data and adjust accordingly. I ask you; how the fuck is that NOT obsessing over your blood sugar?
Diabetics also require more sleep than the average person. Except you have to wake up three to four times a night sometimes because your blood sugar won't go up, so you roll out of bed to eat a snack three separate times, and then we hit four am and oops! Your blood sugar is three hundred. There is no science to diabetes. After 2 years, that is what I have learned. There are things that help, but you will have days where you do everything right and your blood sugar is terrible, and there will be days where you do everything wrong and your blood sugar is also terrible. Very rarely is my blood sugar miraculously good. This is part of the reason why diabetics are more likely to self harm, because of how stressful and tiring it is.
I'm going to say it one more time; diabetes is exhausting. Diabetic burnout is a phenomenon people who have just been diagnosed or who were diagnosed as children can experience, where they become sick of the watching and the waiting and the calculating. Some people give up entirely for certain periods of time, too exhausted to care about their health. I have, on multiple occasions, peeled my CGM off well before its expiration date because the high blood sugar alert made me genuinely want to rip my skin off. It is also very common for people with diabetes to have eating disorders, especially women. On Thanksgiving last year my blood sugar refused to go down so I ended up using more insulin than I was comfortable with, so to compensate, I didn't eat anything for the next two days afterward. Would not recommend doing that.
It does not feel fair. Diabetes is one of those chronic illnesses that my father refers to as "attractive", as in it gets loss of attention and research, but just because it's scientifically discussed and people love to make jokes about it whenever they see a triple chocolate brownie or chicken and waffles, it sucks. It is scary and exhausting, and it takes a lot out of a person. I may be more bitter than most, so I'm not saying your character should be enraged about the way their life has gone, but please take these things into consideration.
Other Bits and Bobs
Other small things to add realism to a T1D character, if you so desire.
I have a physical reaction to alerts from my CGM; you can set alerts on the app to let you know when your blood sugar is too high or too low, and when I hear them my entire body literally tenses. It's at a point where if I hear any beeping at all that sounds even remotely like my alerts, I just freeze in place for a few seconds, trying to decide if the noise came from my phone or from something else.
Different countries have different places where you're "allowed" to put a CGM. In America, it's usually the back of your upper arm or on your lower stomach, but people rarely follow these guidelines, and will put them on the front of their thighs, lower butt, front of the bicep, and I've seen people do small of their back or front of their forearm before.
Diabetics tend to pick up nasty habits like not changing the lancets (little needles used to prick your finger for the glucometer) or not sanitizing a cite before giving yourself an injection. We also sometimes have foods that, despite all logic, don't impact our blood sugar the way they should. I saw someone once say they could eat as much ice cream as they wanted with no issue, others have said they can eat popcorn, or breaded chicken, or chips. It really depends on the person, but since diabetics try to eat low carb and high protein for just about everything, we really cling to certain foods when we find out they don't impact our blood sugar negatively.
I'm sure there are some things I didn't cover, but this is a good place to start! I'll also leave some cites down below that I found helpful, and along with these, I recommend going to the T1D reddit page, you'll find some very realistic things there. Happy Writing!
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