Since my son Joey's diagnosis with type 1 diabetes in 2009, my sleep habits have changed drastically. I would call myself sleep deprived, for sure, as do many, many other parents and caregivers of kids with diabetes.
As I participate in multiple online groups with parents of kids with diabetes, I find that sleep deprivation has been at the forefront of many conversations among us. We are exhausted. Because diabetes has no rhyme or reason, we find ourselves setting our alarm clocks and getting up sometimes multiple times per night to check our kids’ blood sugar.
Just today I read an entry where a mother of a child with diabetes went to her doctor to have some tests done. The woman has steadily gained weight since her child's diagnosis, because of stress related to the disease itself, plus the added stress of getting up multiple times a night. Her doctor didn't understand the correlation between the two. He asked her why she has to get up at night…
We had a similar experience at Joey's dentist appointment last month. His dentist wasn't happy to find out that in the middle of the night, when I find he's low, he drinks a juice pouch or has glucose tabs. He asked me:
- Why is he up in the middle of the night?
- You wake him?
- You prick his finger for a blood sugar test?
- You make him drink sugary juice?
- Do you have him brush his teeth afterwards?
- Doesn't he have an insulin pump? Isn't that supposed to regulate his blood sugar 24/7?
All very good questions. Here are the answers that I gave her; hopefully she understood afterwards.
- Type 1 diabetes doesn’t sleep. It’s a 24-hour disease. If diabetes doesn’t take nights off then neither do we.
- Some kids don't feel when their blood sugars are going low due to nocturnal low blood sugar and won't wake up on their own.
- Yes, in order to see what his blood sugar number is, I have to prick his finger to get the result.
- In order to bring his blood sugar up to a safe and normal range, we have to give him fast-acting glucose and carb-filled juice pouches work best for him.
- No, I don't have him brush his teeth, because it might be 12:00 AM or 2:00 AM or 4:00 AM – or all of the above. He is tired and usually falls right back to sleep afterwards. Some nights are harder than others to wake him to allow the blood sugar test, so we try to get in and out of his room as quickly as possible.
- Yes, he has an insulin pump and it helps him so much, but there are many factors that play into regulating his blood sugar numbers. The pump is like a computer – we program it to release insulin when he eats and when he sleeps (and every hour in between).
At my house, I do all the overnight checks, because I stay at home. I truly can’t imagine being up once, twice or even three times a night and then going to work the next day. But many do and I salute you.
I get why our doctors, dentists, friends, bosses and even our spouses (that sleep through the night) have a problem understanding why we are so tired, because they don’t live it. And until you do, you don’t get it. That’s why I try to educate – to help people understand.
Being in the online support groups for parents of kids with type 1 diabetes has another perk. At 2:00 AM when we are up checking our kids’ blood sugar levels, we can always log in and find someone to talk to, because many times I can’t get back to sleep, or if I do, the alarm is buzzing again for the next check.