Halloween is a surreal holiday. It’s my favorite holiday, but it is also a reminder of how much life with an incurable chronic condition affects my perception of positive childhood memories. I’m lucky that I could grow up with trick or treating without Type 1 diabetes, but I am also cursed in that I will never relish in the same devilish appetite now that I have a disease that negates sugar.

So, it seems appropriate on this almost All Hallow’s Eve and in preparation for November — National Diabetes Awareness Month – that I should write about what it’s truly like to live a day in the life of someone with Type 1 diabetes. A few weeks ago, I took an ordinary Monday (well, as ordinary as a Monday can be) and tracked every time I thought about my diabetes – every time I checked my blood sugar, every time I calculated carbohydrates for a meal, every time I felt something was “off,” and every time I administered insulin to keep my body alive.

Even I was amazed at how much managing diabetes has become a part of my everyday life. With advancements in technology, I’m able to do more, and I’m able to have more variety in the foods I eat. But that doesn’t mean I don’t think about it any less. That doesn’t mean I can take a break from being there for my body.

So, here’s one example of one day (because no day is the same) with Type 1 diabetes (there are no days off). It’s a long one, so bear with (just keep in mind that this is really how much I think about diabetes on a daily basis – believe me, it sucks).

Morning

6:30 a.m.

I wake up. My continuous glucose monitor (CGM) aka Cosmo tells me my blood sugar is 126. But I calibrate it just to be sure. This means I prick my finger with a lancet device and place a drop of blood on a test strip, which then feeds into my glucometer. This reads my blood sugar: 114. I type this into my CGM app on my phone. I do this at least twice a day (prior to the CGM, I did this 8-10 times per day).

My CGM wirelessly reads my blood sugar from a sensor underneath my skin that’s taped to my ass. It hurts like hell when I insert that needle every 7-10 days, especially if I hit muscle, and the more I work out my gluts, the more that seems to be a problem. I can also insert the sensor near my stomach, but this is often where I insert my three-day pod, which holds the insulin I need to live.

I use a personal diabetes manager (PDM) aka Evie to manage my intake of insulin. The PDM looks like a pager, and I tell it how much insulin to administer on a daily basis (basal for a base rate of continuous insulin to keep my blood sugar stable between meals and bolus for the actual insulin I take for the amount of carbohydrates I eat at meals).

After my morning wake-up call, I eat a bite of a blueberry cereal bar so that my blood sugar doesn’t drop on my commute to work.

8:00 a.m.

I’m en route to my job. I take the metro most days (fortunately, it’s been somewhat reliable lately). My blood sugar is 166. I give myself a correction dose of insulin to account for the high. Normal blood sugar ranges from 80-120. I try to keep mine around 120 to prevent too many low blood sugar episodes aka hypoglycemia. I’ve already had two seizures in my short diabetes lifetime. I don’t want more.

8:30 a.m.

I’m hungry. That bite of cereal wasn’t enough. My blood sugar is 165, so I take some insulin and eat steel cut oatmeal I soaked in almond milk the night before. Depending on my insulin resistance, the oatmeal is a hit or miss whether it will make my blood sugar skyrocket. But it keeps me full and for the most part is a good kind of carbohydrate. I drink 1.5 cups of coffee. I gave up coffee when I graduated from college. A year later I went back to graduate school. Coffee has stayed in my life ever since. Sugar is now my enemy (except when I’m experiencing low blood sugar). Let me live (or so I tell my body).

9:00 a.m.

My blood sugar is 165. I have a presentation to give. I don’t want my blood sugar to drop during the presentation so I tell Evie to set a temporary basal for 30 minutes of no insulin.

9:40 a.m.

I’m still waiting to give the presentation, and now my blood sugar is 184 and rising (Cosmo can tell me when my blood sugar is rising and falling – a neat little trick for detecting and preventing severe highs and lows). So, I give myself some extra insulin and cancel the temporary basal.

10:00 a.m.

Presentation is done but my blood sugar is now 207 and rising. It could be the anxiety. Stress will do that to my blood sugar levels, so I give myself more insulin.

11:00 a.m.

I check Cosmo again to see if my blood sugar has returned to normal. It’s 217. There’s still 0.70 active unit of insulin in my system (my insulin usually stays in my system for three hours – I have to monitor this and use the math of Evie to ensure I don’t give myself too much insulin especially if there’s still active insulin in my system as this will cause my blood sugar to drop and could lead to a seizure, coma or death – yes, it really is up to me to manage all of this, no emergency personnel in the shadows). With 0.70 unit of active insulin, I give myself a 0.50-unit correction dose.

11:51 a.m.

I’m feeling thirsty (a sign of high blood sugar). I check Cosmo – my blood sugar is now 192. I give myself a 0.25 correction dose.

Afternoon

12:05 p.m.

Coffee run. Enough said. Fortunately, without the addition of sugar or syrup, coffee doesn’t affect my blood sugar as much as other caffeine products. But I have noticed over the past year, with little food and little sleep, too much coffee can make me sick.

12:44 p.m.

Must have walked too far with active insulin (exercise will make my blood sugar drop). My blood sugar is now 155 and dropping (thank god for Cosmo). I eat the breakfast burrito (eggs, sausage, green peppers, onion, chimichurri sauce) I brought for lunch and hope the carbohydrates catch up soon enough to counteract the dropping rate.

1:20 p.m.

In my rush to prevent a low blood sugar, I completely forgot to take any insulin. Yes, the burrito would counteract the active insulin in my system and the exercise, but this isn’t magic. The burrito still contains too many carbohydrates for me not to take insulin. I tell Evie I’m eating 25 grams of carbs (three-fourths of the burrito) and take 1 unit of insulin.

3:10 p.m.

Okay, now I feel thirsty with a dry mouth. I check my blood sugar – 180 with 0.45 unit of active insulin. This means I need 0.35 unit for a correction dose (thank god for Evie and Cosmo so I don’t actually have to do all of this math in my head).

3:40 p.m.

I’m hungry. I have less than two hours before my commute home. My blood sugar is 163 and dropping with 0.55 unit of active insulin. This means I can eat. Sometimes, if my blood sugar is too high, I must wait for it to come down before I can eat (this can take hours and is tortuous agony). Hunger pains can also be a sign of high blood sugar. Oh, the irony.

I eat one cup of Greek yogurt with blueberries, which equals 18 grams of carbohydrates.

4:10 p.m.

My blood sugar is now 153. There is 0.35 unit of active insulin. I punch in 18 grams of carbohydrates for the yogurt (I usually maintain a ratio of 1 unit of insulin to 20 grams of carbohydrates, but again, this can depend on the day). I normally take 1.25 units of insulin for 18 grams of carbs, so minus the active insulin, I take 0.90 unit (again, thank god for Evie so I don’t have to do all of this in my head – I used to, the days were not so great).

4:45 p.m.

Blood sugar is 173. This is a good placeholder for my commute home. I usually set my daily basal rate to decrease from 5-7 p.m. to diminish the likelihood of my blood sugar dropping during my commute. It’s usually the time between lunch and dinner when I’m most at risk. It’s the end of the day. My body has already expended a lot of energy. It becomes more sensitive to the insulin.

Evening

6:00 p.m.

I made it home alive. Yay! I don’t always cheer when I get home, but I probably should. Just writing about this is exhausting.

My blood sugar is 163 and dropping (see? I told you). Since I’m about to work out, and I still have 0.40 unit of active insulin in my system, I should eat a snack. But I don’t. It’s possible my blood sugar will stabilize at 120. It’s possible it won’t. Sometimes, I take unnecessary risks to save the calories or because the idea of eating more sugar makes me want to puke. And sometimes, I’m just lazy. Sorry. I can’t be perfect every day.

6:10 p.m.

Today is abs/gluts/biceps day. I focus on strength training during the week since I find I no longer have energy for extensive cardio (I’m lucky if I can manage this on the weekend). I set a temporary basal rate of 0 unit for the next hour. I still have 0.35 unit of active insulin in my system. Weights are not usually as bad as cardio when it comes to making my blood sugar drop, but any kind of exercise can do its damage. I’m hungry and nauseas from my commute, but I power through.

6:40 p.m.

I’m done. Another yay! My blood sugar is 128 and dropping. I eat a Reese’s pumpkin and some raspberries.

7:10 p.m.

It’s time to calibrate Cosmo. My CGM checks my blood sugar 24/7 but to ensure it’s accurate and on target, I need to calibrate it twice a day with a finger stick. Cosmo says my blood sugar is 103, but when I do a finger stick, I get 152. I give myself a correction of 0.40 unit (too many raspberries, I suppose).

7:36 p.m.

Okay, enough. I need a glass of wine. I indulge as much as the next person, but I have to be careful with alcohol. The sugar from certain alcoholic beverages can make my blood sugar spike, but the alcohol itself will make my blood sugar drop. So, I have to be constantly monitoring things. And not to mention the emergency glucagon I have on hand for severe low blood sugar levels (the one where I pass out and someone else must inject me — similar to an EpiPen — to give me some sort of sugar reprieve until the paramedics can get there) does not work with alcohol. Yeah, those with diabetes are just that lucky.

So, back to the red wine. My blood sugar is 168 and rising. I have 0.55 unit of active insulin in my system. I let it be for now. The effects of exercise can sometimes make my blood sugar continually drop for hours on end post-workout, so I try to be cognizant of this effect and not correct too heavily.

I cook dinner.

8:45 p.m.

I don’t normally eat this late, but if I don’t get to cooking on the weekend, I often leave this task for Monday night. This means I eat later these nights. There are only so many hours in a day.

I help myself to pork chops with chimichurri sauce, mashed sweet potatoes and roasted vegetables. I also don’t usually eat this well (okay, maybe it’s a weekly goal?), but I am trying to cook more mostly because it’s better for managing my diabetes. The more I control what goes into my body, the better I am at controlling my body.

10:00 p.m.

My blood sugar reads 145. I have 0.10 unit of active insulin. I give myself a 0.20-unit correction dose.

10:45 p.m.

Okay, I’m done. My blood sugar is 158. I have 0.15 unit of active insulin in my system. I give myself a 0.30-unit correction dose. I climb under the covers with Norm – my black and brown tabby — curled up at my feet (he’s still upset because I didn’t give him any pork chops) and fall asleep.

Goodnight.