Changes

Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

In a word:  sleep.  Scott Benner of Arden's Day says that his post about how tired he sometimes looks has gotten the most hits.  Why do you think that is?  If you read around the DOC (Diabetes Online Community), sleep is a constant refrain among parents of children with T1D.  (I'm not going to post my no-sleep D-Parent photo, even for increased traffic.)

Sleepless nights.  Zombie days.  Sometimes, it feels like my brains are liquefying.  He goes low some nights because of exercise, because he's not growing today, because no reason.  And, I can't. go. back. to. sleep.  If I do, I might actually sleep and he might go low again.  I might miss it. So why, I was once reasonably asked, not give him carbs before bed, run him higher so that I can sleep?  Well, here's a secret:  once in a very great while, I will.  Not really high, mind you, but just a little higher. Sleep is so sweet. 

This is not something that I can, out of love, do long term.  I can't risk future complications by letting his blood glucose always be high at night. He won't feel good in the morning, and the day will follow suit.  On good nights, I can fine tune the basal rate and his BG is normal, as good as mine would be with a normal pancreas.  I take advantage of those nights to give him the best average BG and best possible chance for a long, normal lifespan.  I get more sleep, glancing at my Nightscout and going back to sleep.  The basal rates will be like the perfect idle setting on an engine.  And then, it isn't.  

One night, I got the brilliant idea that while waiting (treat, wait 15 minutes) I'd practice some yoga.  I made up that first pose, butt in the air, head on the ground.  Slept well in that pose on his rug.  A 3 a.m. check of Facebook shows I'm not alone, and I've messaged friends "You up?".  Like the Apostles, I fell asleep trying to pray. So cold sometimes, I'll just sneak back under the covers for just a moment....Nope.  Get up, trip over the dog.

The change I want seems impossible.  I want parents to sleep and not have to get up to tickle the bottom of their child's foot to see, to not put a hand to their abdomen.  I want them not to feel guilt because they missed the alarm and it got serious.  I want them to have the energy to get through their next day.  I want people who can't sleep one night to realize you are telling someone who will not sleep through the night until their child is an adult, and maybe not even then.  I want to sleep.

Addendum:  My first thought this morning was "oh, that was an incredibly selfish way to answer that question". Sleep is elusive and craved but the reason for the lack of it should be clear:  unchecked lows can result in emergencies and death.  Adolescents and teens often don't wake to a fire alarm, much less a low that makes you drowsy and unresponsive.  So, more to the point, I guess I would like a way to ensure that my son is safe at night.  The CGM helps but isn't fool-proof.  Neither am I.  But, it's the best we've got right now.