What lies beyond tired
Scott Benner
Just past tired and around the bend from exhausted lies a magical place called delirious and I am writing to you from there.
Monday night began my journey to this place where my head floats, my thoughts make less sense and no one is on time for school. Arden played in a softball game Monday evening, then she ate, we bolused and around midnight her BG unexpectedly fell. It wasn’t one of those crazy double arrow down (for you CGM users) and still a long time to go until the bolus is gone declines. It was the slow fall, so slow that the CGM can’t even report an arrow, you just watch the number slowly drop. I was able to stop the fall at 60 by turning off her basal but with no food it was going to hang there until around 3:30 am. So I sat up in bed playing games on my iPad, listening to music and trying not to wake Kelly. Arden BG began to climb and I went to sleep at about 3:15.
Tuesday night added insult to that injury as Arden began to rise unexpectedly after she went to bed and I didn’t have the courage to bolus as much as I should have. I ended up chipping at the BG over the next few hours trying to get her down. That was a mistake because at 1 am I finally had to give a large bolus and then I didn’t want to sleep until that insulin had run it’s course - I looked at the clock as my eyes finally closed, it was 4:40 am.
Last night hunger was my fickle foe. Arden was hungry at bedtime and I let her eat. We had just changed her CGM sensor so I didn’t have an arrow to tell me what was happening. She had a small snack and I waited 15 minutes to bolus for the food incase she was dropping (hunger for her at that time of night usually indicates an upcoming fall). As my bad luck would have it there was no drop... she was just hungry and so I had to bolus late at night again but I did get to bed at a respectable 2:30 am, a bedtime that wouldn’t have been bad if the prior two nights weren’t so tough.
All of this has left me very tired. I have what I think is called brain fog, my neck is also stiff and my stomach a bit out of sorts - I haven’t had the energy to do half of the things that I had planned on doing this week and I wasn’t able to get Arden to school on time the other day. Why am I telling you this, am I complaining or looking for a virtual pat on the back? No, I’m telling you because of a tweet that I read the other morning.
Every night I put Arden to bed I think the same thing. It’s not a particularly uplifting thought and it isn’t a conscious one but it’s come into my mind every night since she was diagnosed. I tuck her in, sometimes we read a book and always before I leave the room I give her one last kiss good night - then I think, “please don’t die”.
I was exhausted the other morning until I read that tweet and then I pulled myself right together. “This is just a few days of being tired”, I thought. It’s not the end of my world and it certainly isn’t equivalent to my daughter not being here anymore. I want to say that I’m in no way indicating that the parents of typeI children that have passed away in their sleep did anything neglectful. There are nights when everything looks perfect and the situation could and has changed the moment I’ve gone to sleep. I’m not in control of any of this and I know it but I am going to be as vigilante as my body will allow me. When I can’t do it anymore I always ask my wife Kelly if she can take a night and she jumps right in even though she works such long and stressful hours at her job.
Anyway, I imagine that I can’t be the only one who has this thought at bed time and I wanted you to know that you’re not alone. That I am standing in a hallway just like you. Wondering if I’ve handle the day properly, if the insulin decisions that I made are going to come back to bite me at 2 am. The truth is we are all standing in that hall, at a bed side or sitting on the sofa pretending to watch TV while we go over the day in our minds. I just thought that if you knew how exhausted I was right now and that I wasn’t giving in to it, well... I thought that maybe you could feed off of that if you were having a similar couple of days.
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As Penny said, I feel your sameness too. It has improved significantly having DexCom though. I don't find myself staying awake quite as much as just waking up. Maybe I'm kidding myself??
If my kids aren't awake by 8am I often panic that something deadful has happened. So I suppose this makes me more aggressive with their management.
My heart goes out to that family. They must have so many questions which I suspect they will never get answers too.