Not that we all don’t say over and over again how nice it is to flip the computer on and read “our” stories over and over in the posts of our fellow D-mama’s, papa’s and PWD’s. But I gotta say…it’s amazing to me when I am right on the edge of that cliff (Meri, Our Diabetic Life) and wondering how the hell I’m going to continue to live without sleep (Joanne, Death of a Pancreas) again, amazing how I can read a few words offered by my D-peers and feel soooo OK all of a sudden. Even if it’s only for a few minutes…I feel ok.
On the subject of sleep.
When Ellie was diagnosed and we were in the first few days of hospital care, I truly had no clue what was really going on. The whole unit/carb/ketone/etc. thing just wasn’t something I had ever really absorbed into my head to have even an elementary understanding of what was going on. The nutritionist that came really wasn’t that informative, the nurses on the floor mostly looked at me with a little bit of pity/confusion. I received all these xerox papers with bits of information on carb counting, insulin action, etc. Looking back…there was really no way I was walking out of there feeling confident or educated about what we were going to do when we got home. One thing I now think back on is that I slept with her in the bed every night in the hospital. I didn’t sleep a regular schedule really, usually staying up late watching TV trying to relax myself while she slept. But when I did sleep, I slept without any thought of when I had to get up. The nurses were coming in on a schedule set and sealed, so I had no responsibility or knowledge of the middle of the night check that was soon to come. Oh ya…AND (the key to the whole thing) she was hooked up to a heart and oxygen monitor…
Ahhh, now I remember!
A nurse asked me after the first night if I wanted them to remove the heart monitor stickers from her chest. I wasn’t actually aware of why they were on in the first place and I still had no idea that her blood sugars were a matter of life or death…not to the extent that I understand it today. But I remember looking at her and thinking…Ummm NO! I don’t know why I was so quick to answer or what I was thinking, but I think something in me just said the more monitors the better. So they stayed on, the whole 5 days hooked up at night.
I’m not even sure I know when I was told that I needed to do the 2am checks? Jack was only 4 months old and really only beginning to sleep through the night. So the 2am checks were sometimes challenging and sometimes I was going to be awake anyway. Ignorance is bliss I guess. Because as we all know…the 2am check isn’t just a 2am check. Just like everything diabetes, every “bit of information” MEANS something and usually requires some sort of action or reaction or future action or decision…or something.
So lets break it down.
Your told (at least I’m assuming most people are told) that you are to check blood sugar levels at least once at night. We were told 2am. It appears the actual time of said check can vary, but none the less at least once. Most of us will be forced to set an alarm in order to accomplish this. So you set your alarm and you wake the first night and you check it. Now HOW MANY TIMES IS THIS NUMBER SATISFACTORY? What they tell you is that IF the number is on target, close to target or acceptable you should be good to go and this will only be a practice in making sure your basal rates are set correctly. At least that was the impression I was given (or what I wanted to hear) at the time of diagnosis. I specifically remember asking our endo a few months in to this nighttime checking thing when the checks at 2am were no longer going to be necessary. I also specifically remember him looking at me and saying something like…when she can do them herself!!! WHAT THA??? Now of course by the time I did ask the question, I already knew the answer. Blood sugars are rarely stable or predictable day or night, but throw in a little honeymooning in the beginning and a lot of enlightenment over the last 10 or so months and you are ripe for numerous checks throughout the night and day…When she is on target in the middle of the night, well…it freaks me out a little to be honest with you. I feel dread and question why she is on target (like who is fooling me, what sort of sick joke is this?). Doesn’t it seem impossible that an individual can get the insulin levels correct? Am I nuts or is this “moving target” not actually MOVING CONSTANTLY?! What is this? Now I have invested and use 24/7 a continuous glucose monitor on Ellie. This little device was my hope to not only have a reliable back up at night, but my hopes were to be able to just sneak a peek at that handy-dandy little monitor see where she has been, see where she appears to be going, with a built-in alarm for lows and highs and ZZZZZ’s were in my future.
Then the (???) comes into play. Yes the ERROR message of Dexcom. For 4 nights now, like friggin’ clockwork (???), it might as well announce, “NOPE, NOT TONIGHT SISTA, YOU’RE ON YOUR OWN!!!”. Yeah, I wanna throw it, kick it and squeeze it to death when it does that! Can you picture crazy D-mom squeezing the living sh*& out a small black device in the dark at 1:45am? I bet it’s hilarious! I do have to admit that when the Dexcom monitor has shown it’s best performance for a given amount of time, I do just peek at it in the night and take its word for it. But I can tell you the reliability of that little device leaves me doing an actual check about 98% of the time. But for the most part…the check, the nighttime check, is a nightly ritual that one does for one reason…fear.
So I would offer a new question. Is it the lack of sleep that we all miss and want to so desperately get back…or is it a night (whether asleep or not) of no fear? No anxiety or worry? I was explaining to my husband who is trying to offer some sort of help in the sleep department that I really don’t know that I can let go yet. I could have Ray or my mother do a few nights a week with Ellie, affording me a few full nights of sleep. But would I sleep or just lay there, wondering if all is ok? There have been PLENTY of afternoons that I have been laying on the couch with Ellie and could have SO easily just fell asleep, but if she’s not sleeping and I’m not laying on top of the Dexcom and her blood sugars are not just so…I just can’t let myself fall asleep totally. I have been waking in a panic for many nights now (numerous times in the night) feeling like I have let something slide, like I have failed my own daughter by being so damn weak to fall asleep. This isn’t like a crying baby who is hungry but will survive…and will eventually wake you with the wailing of insecurity…this is stealth, and sneaky…deadly. It’s irrational and horrible to be so damn scared all of the time. Now I will say, most of the time everything is fine and we putter along dealing with this or that, wondering about the next reading or what did that, but then there are the WTF? moments of extremes. The reality of the disease and its capabilities come around all sneaky and scary. So my ultimate goal, short of purchasing and owning a heart and oxygen monitor is to let the sleep thing rest (ha! a pun?) and work on the fear, guilt, and anxiety.
I hope by tackling and conquering fear, guilt and anxiety maybe I will be able to finally get some rest… if not even some sleep!
What do you think?