The Night My Infusion Set Came Unhooked

There are nights with Type 1 diabetes that feel almost normal. And then there are nights like this one.

The day had already been exhausting, as any trip to the doctor feels these days. No sooner had I gotten home from my appointment than I saw my neighbor with blood running down her arm from a fall. There was a big gash in her 90-year-old arm, and there was no doubt I had to take her to the ER. I waited with her in the ER for 5 hours, first for her turn and then for her to get stitched up. I was completely worn out before I ever got home.

By the time I walked through my apartment door around 8:30 that evening, I realized the only thing I had eaten all day was a little bag of cookies at the hospital. I was starving.

Normally, after a day like that, I would expect my blood sugar to be high. But surprisingly, my numbers had actually behaved fairly well that day. Not perfect, but at least manageable.

I warmed up a good meal my other neighbor shared with me, watched a little television, and by 10:30, I could barely keep my eyes open.

I remember thinking that “Finally. I can rest. I’m going to sleep.” That should have been my first clue.

Around 12:30 in the morning, I woke up hot. Not a Houston summer hot. Diabetes hot. My head was itching. My body felt restless and itchy, too. Something felt wrong before I even looked at my pump.

I reached over for my phone and checked my CGM. HIGH. Not 250. Not 300. Just HIGH. That awful word, which means your numbers are way off the chart.

I immediately sat up in bed. I checked that my tubing wasn’t knotted. Then my pump. Then, finally, my infusion set.

Loose.

Somewhere during the day, somewhere between stress, exhaustion, errands, helping other people, and trying to function like a normal human being, my infusion set had come out of the holder piece on my stomach. One tiny piece of plastic. That’s all it takes.

People who don’t live with Type 1 diabetes sometimes imagine insulin pumps as automatic little miracle machines. And they are wonderful. Mine has helped me tremendously.

But the truth is, they still depend on us to do it right. Every hour. Every day. Every night.

The insulin has to actually get into your body. And when it doesn’t? Everything changes fast.

Suddenly, you’re wide awake at 1:00 AM, changing infusion sets, correcting blood sugar, drinking water, checking ketones, trying not to panic, and wondering how high your blood sugar has actually been and for how long.

Meanwhile, all you really wanted was sleep.

That’s the part many people don’t see about Type 1 diabetes.

The exhaustion.

Not just physical exhaustion, although there’s plenty of that.

Mental exhaustion.
Decision exhaustion.
Body exhaustion.
Middle-of-the-night exhaustion.

There are no “off” hours.

Even when you’ve done your best.
Even when you’re trying to take care of other people.
Even when you are dead tired.

Eventually, my numbers started coming down. The itching settled. My body calmed down. But by then, I was fully awake. Sitting in front of the TV, having a “pitty party” feeling sorry for myself for what I had to do every single day just to stay upright and functioning.

By morning, life looked normal again. But during those nighttime hours? Not so much.