When I tally off the cost of caring for a diabetic toddler, the list is never-ending. And it’s not just really money either. I touched on the monetary costs (tip of the iceberg really) in my article The Hidden Costs of Diabetes. But more recently I am becoming aware of another cost…a deficit 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.
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 heaping pile of 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! WOOT! But alas, EXHAUSTED I am and what’s more, I’m not alone! It’s become a running joke in the many online diabetic communities 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 tangible reasons we do not get good sleep anymore. Lets start with Night time blood glucose monitoring. For almost all type 1 diabetics, 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 and 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 15 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 after 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 breakthroughs in curing diabetes are coming these days…we may never.
So fine, this is our life now. THIS is our new normal. And that’s really not all bad because we are fine, right? RIGHT?!?!?!
Maybe not so much. We all know that sleep is when our body repairs and rejuvenates itself. A proper night’s sleep gives us the ability to adapt to the stressors of daily life easier as well as gives our body the BEST battle ground possible to fend off illness, environmental allergens, etc. And we have ALL been told by doctors at one point or another that a good night’s rest and resetting your body clock to a good sleep pattern can go far in helping your ability to maintain steadier emotions. Well apparently that’s not really been a lot of smoke and mirrors. WHO KNEW?!
It’s been found in research that during sleep, your immune system releases proteins called cytokines. Certain cytokines need to increase when you have an infection or inflammation, or when you're under stress. In addition, infection-fighting antibodies and cells are reduced during periods when you don't get enough sleep. Therefore, sleep deprivation may decrease production of these protective cytokines making your body have to work harder, longer, to stave off illnesses. And that’s JUST the immune system folks. Lets talk about your muscles that become quicker to react, but worse at accuracy. Hello, clumsy much? And then there’s the old think-tank itself…the brain. Here’s where the real toll of constant interrupted sleep comes into play.
Sleep plays a critical role in thinking and learning and a chronic lack of sleep hurts these cognitive processes. Sleep deprivation impairs attention, concentration, reasoning, and problem solving. This makes it more difficult to learn efficiently. Moreover, during the night, various sleep cycles play a role in “consolidating” memories in the mind. So if you don’t get enough sleep, you won’t be able to remember what you learned to begin with. I myself have been guilty of completely forgetting things I had scheduled and put in my calendar. I live and die by my planner so if I say I missed an appointment or over scheduled myself, maybe this is why. Well, at least this feels more legit if I tell people “My cognitive processes are not at their optimum due to chronic sleep interruption as a side effect of my child’s type 1 diabetes”. Or perhaps I’ll just stick to my stumbling apologies and silent shame.
And all of this is JUST the tip of the iceberg people. The list of conditions that are now in some form linked to sleep issues is growing by leaps and bounds. It includes a few good whoppers to think on too:
Irregular heartbeat (got it, not good for the heart) <--Ironic sidebar...I was diagnosed with Multifocal Supra Ventricular Tachycardia about 6 months after I wrote this. YAY IRONY!
High blood pressure
Diabetes (just stop)
Low Sex Drive (sorry honey, I’m legitimately too tired)
Weight gain (got that one)
Weight loss (pfft...if only)
Fatigue (Well golly...fatigue is a side effect of sleep deprivation, WOW!)
Lethargy (no kidding)
And on and on ad nauseum
Yes, I miss sleep. I miss that feeling in the morning of rolling out of bed for a good long hard stretch and feeling totally ready to take on my day. And now I’ll miss that feeling because I may be causing a singular domino effect sliding me methodically into my grave by missing a few hours of solid shut-eye but hey, what can you do? My world will no longer allow that level of rejuvenating anytime in the future.
Our child REQUIRES we check him thru the night and we are blessed and grateful to be able to do it. This IS our life and frankly I’ll gladly risk a bit of fatigue for the calling of the greater good. I will do my level best to fend off heart attack and stroke by being as healthy as I can in other areas and heck, maybe I’ll get lucky and get WEIGHT LOSS as a side effect of sleep deprivation for awhile (update....nope, not yet)! Lord knows the past year and a half of life with diabetes hasn’t left my backside any better for the wear. In the mean time I’ll take a few more vitamins, try to squeeze in exercise where I can to boost my energy, embrace my life trying to replace my blood with a good french roast and look for a new T-Shirt that says, “EXHAUSTED is the new SEXY!”.
So if you see me stumbling around, forgetting where I put the car keys that are in my hand, and possibly looking like I dressed myself in the dark…if I’m sporting a bit too much eye make-up and a baseball cap over what is clearly bedhead….put your arm around me and guide me to the nearest cup of really strong coffee and know that I look this way because my child is as healthy as he can possibly be. Give me a pat on the back and say job well done. Oh yeah, and if in my exhausted state you see me break into sobbing tears or hysterical laughter, feel free to remind me of my motto in this battle with diabetes….BRING IT ON!