The big thing around the DOC these days is the NY Times Op-Docs feature titled “Midnight Three & Six.” This twelve minute video was filmed by Joe Callander and funded by the Sundance Institute. In remarks accompanying the film, Callander begins the story as follows:
For the past eight years, the Chamberlain family in Fort Worth, Tex., has been coping with a nightmare all parents fear: In 2006, their daughter, Grace, was given a diagnosis of a life-threatening disease. Grace has Type 1 diabetes, for which there is no cure. Now 15 years old, she has endured approximately 34,000 blood tests, 5,550 shots and 1,660 medical tubing injections to keep her alive.
Later he writes:
But I was most struck by the realities of the family’s daily routine. Grace’s mother …. told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at “midnight, 3 and 6.” That timetable became my structuring device for making this film.
By Sunday afternoon there were 165 comments on the documentary. Some claimed that the Chamberlain’s family mirrored their life perfectly. Others labeled it as an overly melodramatic depiction of Type 1 diabetes and criticized the parents for how they care for their daughter. My guess is that all of the comments have some merit and mirror fragments of life with Type 1. To put it all in perspective, you should read the comment by Grace’s father who defends/explains his family’s experience and concludes that the film is an artistic peek at one family’s life with diabetes, not a factual textbook. He writes:
finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that…including the disagreements!
If you haven’t seen the film, watch it here. Be prepared to be disturbed whether or not you agree with the depiction of Type 1 diabetes. If you have time, read the comments.
The purpose of this blogpost is not to give my views of the documentary, but rather to use the title “Midnight Three & Six” as a starting point to discuss how often Type 1 diabetes and a good night’s sleep are incompatible.
I have had Type 1 since 1976—diagnosed at age 24. Parents were never involved in my T1 life and no alarms were ever set to test my blood sugar. Of course I had many years of diabetes before I even had a home BG meter. I also lived with diabetes before the Internet and as a somewhat ignorant young adult never considered that I might not wake up in the morning.
Although they were not an every night occurrence, I have vivd memories of horrific lows in the middle of the night. Waking up sweaty, shaky, and disoriented. Staggering downstairs for orange juice followed by multiple bowls of Frosted Flakes and milk. When I was lucky, I was able to find a dry nightgown before returning to bed, but it was always a struggle to avoid the sweat-drenched tangle of sheets where I had previously slept. I remember the freezing cold that permeated my bones and the inability to get warm even with the electric blanket on high. I can still appreciate the buzz as sugar raced through my body reviving my numb limbs, lips and brain. Although I probably woke the next morning with crazy high numbers, I have no memories of that.
As I aged, it became rare to sleep through the night without at least one trip to the bathroom. I began testing my BG when I got up. If it was low, I’d go back to bed with a couple of Werther’s candies in my mouth. It was many years before it became part of my wheelhouse to take an injection to bring down a high. I never woke at night without diabetes being the first thing on my mind.
I now live with a CGM. You would think that this watchdog would enable me to sleep soundly, but sometimes I think it is the exact opposite. There are many nights that the Dexcom is on the Midnight 3 & 6 schedule along with Grace’s parents, or more accurately for me, the Midnight 2 & 5 shift. I struggle with eating too many snacks through the evening. Sometimes it’s junk food. Other times by trying to avoid carbs, I eat things like nuts and cheese. It doesn’t matter which. The pattern is to go low early in the night from too much insulin and then go high at 2:00AM. Although I try to be conservative with corrections, usually the highs are followed by lows in the predawn hours. My G4 definitely earns it keep by alerting me to each one of these out-of-range numbers. Since I am confessing my sins, I might as well admit that I eat glucose tabs and dose insulin based on Dex numbers all night long.
On Friday after being frustrated with the current sensor, I ripped it off at bedtime and decided to splurge with an uninterrupted night of sleep. I had eaten nothing since an early supper, had no IOB, and felt confident that nothing too disastrous would happen. I think that it was the first night in two years that I had gone to bed without a functioning CGM (except for a few times when my transmitter died and I had to wait for a replacement).
I slept marvelously. No, I slept marvelously until 5:56AM when my Animas Ping starting singing Für Elise signaling a pump alarm. It turned out that I had not pushed any buttons for 12 hours and had triggered the Auto Off safety feature. A button push or two and insulin delivery resumed. Back to sleep. Back to sleep until 6:12AM when a twinkle alert indicated that my pump had lost prime. (Losing prime is an extremely annoying problem with Animas pumps and requires that you unhook your infusion set and prime a few units of insulin to restore pressure in the insulin delivery system.) A trip to the bathroom, bright lights, my infusion set reattached, and I was awake for the day.
Although my diabetes control is “good,” the fact that I rarely have a night without Dexcom alarms would indicate that I have problems that need to be addressed. I have a list of things that could be improved. In the meantime, if there are any parents who would like to take the Midnight 2 & 5 shift and start testing my BG, dosing insulin and giving juice as needed, I’m taking applications….
Laddie, I thought the father’s comments were the best. Very eloquent, not condescending. I guess your story is a little of everything works great until it works like it’s supposed to. I know it would be great if you didn’t have to work the overnight shift on your diabetes.
Stephen, ironically last night I had no Dex alarms. And no pump squalks either:-)
It is a rare occurrence when I don’t get awakened by a Dex alarm. I have the Share on my phone, because my daughter will sleep through her alarms. I was actually just wondering how many people have as many alarms at night as we do? I am constantly adjusting basals and ratios it seems, once I see a pattern. Just when I think that I have things tweaked perfectly, everything changes back!
One thing I miss about the Medtronic CGM is the ability to set different targets at night than through the day, but I don’t know if that would eliminate many of the alarms. My problem with highs is that rarely do I initially hover around my high alert but usually rocket by it to awful numbers that I do want to correct. I hate when my numbers are returning to a better range and I get multiple alarms as then the BG might flatline near the top of my range. I forget that I could turn off the high alert and I know I would forget to turn it back on anyway. I think Medtronic has a feature where you can silence alarms for a period of time. I miss that.
I wish that I could combine the best of Medtronic and Dexcom CGM’s….
Laddie, I will sometimes change the high alert if she is bouncing around and I am getting multiple alarms. I would never turn off the high alarm either, but changing it is not as big a deal and you will eventually remember!
Nice post, Laddie. My Dexcom is the first thing I check any time I wake at night for any reason. I like the info and my cat likes the light from the receiver screen.
Thanks, Melanie. My husband is not nearly as excited about the Dex light as your cat…. But I definitely like the info.
“Taking applications.” – me too! We’ve been fortunate that our oldest daughter wakes herself up if she’s low (as far as I know anyway!). We don’t get up and check her unless she’s made a major change in her ratios/rates or she’s had a rough evening before bedtime. (When she was first diagnosed we did check overnight, but that was years ago.) I feel guilty but fortunate at the same time. A good night’s sleep is better for the whole family. A CGM would give me more peace of mind but she isn’t interested.
I would love for someone to come check my blood sugar, since I was diagnosed in 2012, I feel more of a concern that *I* won’t wake up in the morning.