To Sleep Perchance to Dream
10/23/2013, 12:52 p.m.
When I tally off the cost of caring for a diabetic toddler, the list is neverending. And it’s not just really monetary either. I touched on the monetary costs (tip of the iceburg really) in my article The Hidden Costs of Diabetes. But more recently I am becoming aware of another cost…a defecit if you will…in the endless dance with diabetes. When swinging wildly at the punches that diabetes throws at us on a daily basis, it’s easy to not notice the pile-up of things you “set aside for later” until one day that pile is bigger than you are.
To Sleep Perchance to Dream.
I miss sleep. Not just a catnap kind of sleep either; no, I miss a full night of sleep. I miss the sensation of my cool pillow schmooshing into my face as I hunker down under my covers and close my eyes. I long for the days of yore when I could go to sleep knowing, with a measure of certainty I no doubt took for granted, that I was headed for a restful and restorative night of well earned sleep. I longingly recall the nights when my only steady interruption of sleep was a newborn or two, and even then I knew one day they would grow out of it and sleep would once again be mine. Heck, at least then I had chubby babies to love on and give me some emotional payback for the physical drain I was undergoing. Not now, nope, not anymore. Now I just think back and am engulfed in jealousy at the time when I had that stolen feeling of lazily waking up and snuggling with my Mister for a few precious moments before my day began. Back then, back when, back…before diabetes became the hidden family member in our house…that uninvited bastard of a house guest. And if I sound bitter just then remember how I began. I miss sleep.
The outside world doesn’t really know that sleep deprivation is the new norm we get to live with now. It’s just what we do, it’s what we MUST do, to trudge forward and keep our child as safe and healthy as we can. And I guess I do okay because, truly, I don’t get the “you look tired” comments NEAR as much as I FEEL tired. I guess I make exhausted look good! But alas, EXHAUSTED I am and what’s more, I’m not alone! It’s become a running joke in the online diabetic community between we parents of Type 1 kiddos. Your kid gets diagnosed with diabetes and you gain a slew of doctors, your own pharmacy of supplies, and a newfound respect for sleep that you once took so precariously for granted and now would give your right arm for once again. Sleep. Healing, restorative, energizing, healthy sleep. One of the big things that become KO’d once you step into the ring for a lifetime match with T1D.
Why the lack of sleep you ask? Allow me to enlighten you on the various little thieves that Type 1 Diabetes brings to you in the night to rob you of a good rest. The top of the list is of course the worry. What did his blood sugar do that day, why was it wonky, do we think he could have some unseen infection affecting him, or perhaps a growth spurt? Are we raising him right on how to manage a normal life AND care for his lifetime critical care condition? Is he having a good little boy childhood full of enough adventures and dirt and fun? Are his twin little brothers feeling neglected, do they know and understand why we must focus on their big brother as much as we do? Are they beginning to worry about their own bodies now too? What about our marriage, is all the time, money, and effort spent on our healthy child affecting our love life and ability to maintain our own strong relationship? Yep, all those things and more can run thru my head on any (or every) given night. But more than worry, there are legitimate and physically tangible reasons we do not get good sleep anymore: Night time blood glucose monitoring. For almost all type 1 diabetics, but my son in particular, the nighttime hours are the most high risk time for a dangerous dip in blood sugar. You have active insulin in the body and no food to counteract it and the body is still USING your fuel to build/restore/etc while you sleep and whammo – perfect combination for a blood sugar crash. My son, in particular, wears an insulin pump and gets a constant drip of insulin throughout the night. This works great for him about 98% of the time and he’s thriving healthy on it….but once in awhile, if the winds blow the wrong way, he will have a significant dip in blood sugar level that requires intervention in the form of milk or juice. Now once he is grown and better able to wake himself up to treat those, we can rest easier (maybe) but for now it is the job of us dutiful parents to set an alarm. We wake up, enter his room, attempt to stealthily check his blood sugar while he sleeps, and treat accordingly. If his sugar is too high, we must administer insulin and then set alarm to check him again an hour or so later to make sure he does not crash. If his sugar is too low, we must go downstairs and get milk or juice and then feed it to him, in his sleep, and then set an alarm for an hour later to make sure he came back up. If he’s REALLY low we have to recheck in 30 minutes. If his blood sugar is perfect, YAY, we set an alarm for about THREE hours later and then do it all again. So for those keeping count, we are facing a MINIMUM of 2 wake-ups in the night for just blood sugar checks and that is if the world spins on it’s axis the right way and nothing upsets the universe inside our teeny brittle diabetic’s world. Add to all the blood sugar checks the occasional need to check for ketones if his sugars spike high. Then, oh yeah, we have two OTHER children who are 2.5 years old. And you know those 2 year olds are notorious for solid sleeping thru the night right??? I wish! And you might think that getting up only twice a night is not that bad, but we don’t even get to BED until afte 10, and once the “night shift” is done we now BEGIN our days at 5:30 in the morning to check his levels before the morning basal rates kick in. We have had nights so rough we had to wake up every hour…on the hour…the entire night. So we hit the sack at 10, get up nearly every hour on the hour, and are up for the day at 5:30am. It is grueling. Is it like this all the time, no…at least not this bad. But even on the BEST night, we never get a full nights sleep. And at the rate scientific breakthrus in curing diabetes are coming these days…we may never.