When I Stopped Testing My Blood Sugar


I live with two chronic illnesses—one being type 1 diabetes, the other being a psychogenic seizure disorder—and since the seizures became severe in 2016 I began caring less and less about my diabetes.

For a while it regressed from nine tests a day to five; over time it retreated further from five tests a day to three; eventually, I was testing purely when I woke up, when I went to bed, guessing insulin doses and estimating blood sugar readings based on how I felt. My HbA1c jumped higher at every appointment, but slowly enough that it wasn’t suspicious.

Ultimately my body became so used to reading high that I felt normal—my 20mmol/L (540mg/dL) felt like I was sitting in range, and stupidly I was perfectly okay with that.

Two weeks ago, I had a (psychogenic, not hypoglycemic) seizure so bad that I was landed in hospital with a face covered in bruises, head bleeding and a severe concussion after knocking myself out on my bathroom tiles.

When I was discharged, I completely lost all control or care of myself. I locked away my tester and insulin, and walked around for three days like a zombie; when I woke up vomiting on my third day without insulin, however, it sunk in what I was doing to myself.

A blood sugar reading of HI and a ketone reading of 5.6 prompted me to ring my Mum (who was unaware what I had been doing the past three days), who rung my diabetes care team, who admitted me to the hospital.

When I arrived I had bloods done—my blood sugar was reading at 67mmol/L (1207mg/dL), higher than anyone has ever been admitted whilst still conscious, and in the 45 minutes since my last reading my ketones had jumped to 6.4.

In the couple of days that I was in hospital, I realized that I needed to make a change. It has since been two weeks since I was discharged, and I have been testing as often as possible—although I am still having to make a conscious decision to test, I am hoping that it becomes a habit once more, like it was for the first seven years.

In the last two weeks I haven’t had a reading higher than 19mmol/L (342mg/dL)—after a night of drinking—but besides from that, nothing higher than 15mmol/L (270mg/dL); I have not yet missed an insulin dosage on purpose, and I have almost religiously been recording everything on mySugr.

It can only get better from here.

Read I was Afraid to Go to Sleep and not Wake Up by Erin Gold.

WRITTEN BY Erin Gold, POSTED 11/01/20, UPDATED 10/18/22

Erin lives in Brisbane, Australia with three friends from University. She was diagnosed with type 1 diabetes (T1D) eight years ago, when she was 11. She's Captain of her Netball team, a childcare educator, a waitress, a contributor to a blog and is working in a bookstore while in her second year at the University of Queensland. When she's not at University (or competing in Netball competitions, or writing, or working at a bookstore, restaurant, or childcare centre...), she's making the conscious effort to overcome diabetes burnout (and depression and anxiety) by looking after herself, testing, bolusing, counting carbs, going to hospital checkups—or whatever it is diabetes requires.