It’s been suggested that people with type 1 diabetes make up to 180 extra health-related decisions every day. Even when blood sugar is in range and under control, the constant mindfulness and decision making demanded by the condition can be stressful and exhausting.
This is a letter that our Executive Editor Allison Caggia wrote to her father to help him understand a day in the life of type 1 diabetes. She has shared it many times with colleagues and friends.
Dear Dad,
I’m writing this letter to help you understand how much of my time and mental capacity has to go to diabetes. This is what 24 hours looks like. It’s intricate and all over the map. A day in the life.
Every day is different, and most of the time nothing makes sense. I spend my days, 24/7/365, trying to control something that cannot be controlled. But I do the best I can with what knowledge I have.
When things go wrong, I try not to beat myself up about it. I try to remember that I could get hit by a truck tomorrow, so I need to live for today. But sometimes I fail, and I confuse my self-worth with how well I’m managing my blood glucose. It is mentally and emotionally draining.
While my low-carb way of eating helps, it certainly isn’t an answer. There are over 42 variables that affect your blood sugar – insulin and food are just two of the many factors. Add in stress, lack of sleep, exercise, hormones, and the magic unicorn on Mars (no really, we say this because it’s true), and sometimes as hard as I try, things don’t go my way and it really messes with my mental state.
Blood sugar highs scare you for the long term, and lows are scary short-term. When I’m low sometimes I won’t even know and won’t feel a 35 mg/dL! That’s not just scary, it’s dangerous. Some people may not be coherent at that level, or could even pass out. And yet sometimes I’ll feel shaky and super irritable at 60 mg/dL.
Every low I feel is a reality check of what I’m up against.
Here are my last 24 hours, beginning after dinner at an Italian restaurant last night. I thought this would give you a glimpse into my world. Keep in mind that for most people with diabetes, this would be a comparatively uneventful 24 hours. No scary lows and no crazy highs, yet you’ll see I’m still struggling with numbers both inside and outside my comfort zone.
I spent much of this day high, and I have no clue why. It’s not easy to decide if I just stay content with high blood sugar, or take insulin to bring it down, which could wind up making me too low.
In between all these logs are many glances at my Dexcom continuous glucose monitor (CGM) and the constant thought that I need to dedicate to managing this condition.
7:30 pm
Immediately after dinner – no pasta for me, I ordered chicken in a mushroom sauce – my blood sugar is at 177 mg/dL and rising. I decide not to take a correction shot and trust that my mealtime insulin would eventually take effect.
9:30 pm
I’m at 110, which means that I made the right call two hours earlier. If I had taken a correction shot at that point I would have completely tanked.
9:35 pm
I decide to double-check the accuracy of my continuous glucose monitor. My old-school glucose meter says 112 mg/dL, so my Dexcom seems accurate. They don’t always agree.
10:05 pm
My blood sugar is stable at 100 mg/dL, and I want a snack. I have to be careful how much insulin I take because the insulin in my body from dinner is still active. If I take too much I’ll be “stacking” insulin which would only lower me drastically. I did this just yesterday and wound up with blood sugar in the 40s. Most people would feel terrible when their sugar was so low, but sometimes I have hypo unawareness, a very dangerous condition. This is why it’s important that I wear my CGM, which sounds an alarm when my blood sugar gets too low.
10:30 pm
My CGM fell off! It had been on my body for more than two weeks, my longest session ever. They’re only supposed to last 10 days, but I hacked mine (to save money – the sensors are very expensive!) to extend its life. The adhesive finally failed. It only lasted so long because my diabetes friend taught me how to use Skin Tac wipes.
Now I have to decide if I’m going to insert a whole new sensor, which would protect me overnight, or if I should risk a break from alarms and a more comfortable sleep. If I insert the sensor now, I need to stay up past midnight to calibrate it. [editor’s note: Allison had a Dexcom G5, which requires immediate calibration. Newer models don’t need to be calibrated in the same way.]
I decided to take the night off. I’ll insert a new CGM sensor tomorrow.
11:00 pm
I take my nightly Lantus injection. I test my blood and am back at 147 mg/dL, but since I just had a snack and took some insulin, I decide to wait and see what happens.
11:45 pm
My bedtime finger prick check shows 80 mg/dL. That’s a perfect number for me during the day, but at night I prefer a little cushion to avoid going low. I decide to set an alarm so I can check my blood sugar in the middle of the night. I set up my nightstand with two test strips, my meter, and my pricker.
1:30 am
I roll over in bed for my overnight blood sugar test. My finger prick shows 100 mg/dL, which is enough cushion not to go too low overnight. I can close my eyes and not worry, which is a great feeling!
7 am
This was my first time sleeping through the night in weeks! Except for that one blood sugar check, that is.
My morning blood sugar is 170 mg/dL, which is considered “in range” but definitely higher than I want it to be. The small snack I had at 10pm can’t explain this blood sugar rise. My dawn phenomenon must have kicked in overnight. In the morning, hormones and insulin resistance mean that my blood sugar naturally rises anywhere from 30-50 mg/dL upon waking.
If I had been wearing my CGM, an alert would have woken me earlier, and I would have taken insulin to counteract the rise.
I’ll take a correction shot now, but must also factor in my eating and exercise plans over the next few hours. I settle on a conservative shot of 1.5 units, which may not be enough to counter my dawn phenomenon and cover my low-carb breakfast, but it will help make sure I don’t go too low during my morning workout. I also take my morning dose of Lantus.
After making breakfast and packing lunch for the family, I should have just enough time to put in a new CGM. It’ll be two hours before it’s ready to calibrate with two-finger pricks.
9:10 am
Getting the kids off to school was hectic, and I didn’t have time to put on my CGM. I don’t have time now, either.
I test my blood sugar again with a fingerstick, and I’m at 157 mg/dL. The insulin cut the spike from my high-protein breakfast (two hard-boiled eggs), but wasn’t enough to bring me back down from the natural morning rise. But that’s okay: I want to be a little high before my workout. Cardio can bring blood sugar down and also makes me more insulin-sensitive. This gives me a good cushion.
10:15 am
After the gym, I finger prick and my blood sugar is at 80 mg/dL and I’m finally back in the perfectly healthy range! It’s a good thing I didn’t take more insulin earlier.
11 am
I finally put on a new Dexcom sensor.
12 pm
The sensor is still warming up. I need to quickly eat lunch before a work meeting, so I test my blood: 103 mg/dL. I take 1.5 units for the lunch I’m about to eat quickly before my meeting.
2 pm
My new Dexcom sensor is ready to be calibrated with two-finger pricks – 126 and 112 mg/dL. Those numbers are absolutely fine by me after lunchtime.
3:30 pm
I’m hungry for a snack. My Dexcom reads steady at 102 mg/dL, and I don’t really want to take another shot and risk affecting my good results. I decide to have some cheese, which will not move my blood sugar much at all.
5:30 pm
Dexcom says 80 mg/dL which is exactly where I want to be. I head out to dinner at a restaurant that I already know can accommodate my low-carb preferences. I order zucchini linguini with chicken and shrimp, a meal that should let me avoid a spike. I take 1.5 units of fast-acting insulin, which should be just right for the protein and sauce.
7 pm
My Dexcom currently says 130 mg/dL. Looks like I got my insulin-to-carb ratio right this time. I make a mental note to myself for next time. Every meal is another data point, and a chance to improve my control.
7:45 pm
Suddenly my CGM alarm goes off — my blood sugar is at 158 mg/dL with a diagonal arrow up, meaning that it will probably continue to rise. I ate a lot of protein at dinner, and protein rises are delayed, so I’m likely spiking from the chicken and shrimp.
Before I take a correction shot, I decide to double-check with my glucose monitor. The finger prick says 102 mg/dL! The CGM isn’t always accurate, especially in the first 24 hours. No insulin is necessary.
8:30 pm
Now my CGM is sounding an alarm that I’m low. And now it craps out and reads no number. I test my blood and it’s 107 mg/dL, go figure.
9 pm
My CGM started to work again and reads 94 mg/dL.
10:20 pm
My CGM alarms high … and this time it’s accurate! My glucose meter confirms that my blood sugar is going up. I take 1 unit as a correction shot.
11 pm
I decide to have a late-night snack. Normally I’d take 1.5 units of fast-acting insulin, but I already have 1 unit on board so I decide to be conservative with my dosing so as not to go low overnight. To be safe, I’ll stay up for at least an hour to see where I land before going to sleep. I may need more insulin, or I may need more sugar. It’s honestly anyone’s guess.
Dad, believe it or not, this was actually a stellar day for a person with type 1 diabetes. Despite the lows and highs, the corrections and the false alarms, I spent most of the day in a healthy range.
As you can see, a lot of time and thought went into this day. Some days don’t go so well and can be very scary — but I keep on plugging away! Hope this is helpful!
Love,
Allison