Overnight Lows and Disrupted Days

A guest post from Myla Brilliant:

How Does A Person with Diabetes Stay Safe Overnight?

I still remember the very first time I woke up in the middle of the night with low blood sugar. It was mere days after I had been diagnosed with Type One Diabetes, which is an autoimmune disease that causes the body to destroy its own insulin-producing beta cells. Unlike Type Two Diabetes, where the body manufactures some of its own insulin, T1D causes a total lack of insulin production. I was still residing in the ICU of the children’s hospital, where I’d been admitted in October of 2008. A nurse brought me orange juice in one of those little cups with foil lids resembling applesauce. I felt this new sensation in my body – as if something deep inside my core was weak and trembling. I was disoriented. The nurse likely explained to my parents and I what it meant. None of us liked hearing about how dangerous it was for my blood sugar to drop low, especially overnight. What if I didn’t wake up? How would my body know? 

My father, Jon Brilliant, recalls similar discussions in the early days of my diagnosis. I asked him the aforementioned questions regarding my safety while I’m asleep. He states: 

“I seem to recall fumbling through some answers about how your body is remarkable and will alert you when you go low, but I am sure Myla was not convinced as I wasn’t confident in my answer. Hypoglycemia unawareness is real, and we didn’t yet know if Myla was one of those rare people (thankfully Myla is not).”

When I was first diagnosed in 2008, I was not yet on a continuous glucose monitor (CGM), which takes a reading of your blood glucose every five minutes, or an insulin pump. At 9 years old, I had to take my insulin through pen injections - short-acting for meals and high blood sugars in between them, and long-acting insulin at night. I would test my blood sugar before bed and essentially just hope for the best. I was constantly anxious about going low in the middle of the night.

Would I wake up? 

After a few years of injections, I found that my blood sugars overnight and in the morning were no longer manageable with injections and long-acting insulin alone. I was able to switch to an insulin pump combined with my existing CGM. While these devices significantly improved my diabetes management, nothing could ever fully take away my trepidation about what might happen to my blood sugar when I’m asleep. 

Although I feel all of my lows, and they typically wake me up, I can (still) never fully shake the fear that one night I won’t. I have felt nearly every single one of my low blood sugars since 2008. Now, at 26, I would never sleep if I dwelled on it too much. I have no choice but to rely on my CGM, pump, and my body to tell me if something is wrong. It takes a significant weight off to know that I have a device adjusting my insulin as needed to try and prevent overnight lows, but for me never fully eliminates this burden. 

Rebound Highs - Waking up on the Rollercoaster

When my body wakes me up in the middle of the night for whatever reason, it takes a moment to get my bearings and assess the sensation(s) that may have disrupted my sleep. As I slowly reach full consciousness, mild panic sets in, along with the intense full-body experience of feeling low. I reach over into my bedside drawer, where I keep a bag of candy at all times. You see, technology can only inform me of data or attempt to alert me the best it can, but it can’t do anything for me. It is a unique experience fighting off sleep as my body tries to keep me awake enough to consume the life-saving sugar that I need. This always results in overeating, which typically then leads to spending the second half of the night with a blood sugar over 300. Sometimes, I will even drop low again when I wake up. It’s what diabetics sometimes refer to as the “rollercoaster”, which is diabetes management (this type of ride is neither fun nor exhilarating, however). The intense ups and downs wear on my body and make me feel miserable. While my management has come a long way with the use of a close-looped CGM/insulin pump system, I still struggle with getting a good night’s sleep.

Waking up with an unstable blood sugar, whether in the middle of the night or as your alarm goes off in the morning, sets the tone for your entire day. I’ve had entire days derailed due to an overnight or morning blood sugar incident. It has caused me to miss hours or full days of work, class, and even spending time with friends and family. The reverse is also true. Having stable blood sugars at night, not being woken up due to highs or lows, and getting a good night’s sleep with stable blood sugar makes your entire day that much easier. I am thankful to have assistive technology and particularly thankful to my body for alerting me the best that it can.