As a family, we’ve been dealing with Type One Diabetes for over 16 months now. Some things have gotten easier, some things have remained just as crappy as day one. I’m the Pilot of this craft, and I have a great co-pilot, but it’s a tough job! Most just don’t understand all it entails until they live the life…even if just for a day or two.
In February, just prior to Aiden’s One Year “Diaversary”, I was sort of having a hard time. Everything diabetes was getting me down. Mostly, I hate it for Aiden, and it’s not fair to him….and there’s nothing I can do to change it. All I can do is continue to run the marathon, and hope the finish line shows up eventually. We’re now a couple of weeks away from Asa’s One Year “Diaversary”, and I’m back to having a hard time again. As I ponder and brew it all over in my head, I’ve decided it’s because Type One Diabetes is the work of the Devil. T1D is the enemy, and he uses unfair tactics in this war!
One known and primary tactic of enemy forces is sleep deprivation; Type One Diabetes is my enemy and his primary torture tactic is sleep deprivation. Let’s take this week for example.
Sunday: I worked until 0100, and when I work partial shifts, I always check the boys when I get home. Exhausted, low and behold, the Devil made sure one boy was low when I arrived (50, I think). So, I have to give the sleeping child carbs…and wait. Of course, the one who was low is the one who is also very slow to rise. Thirty minutes later, 72. Barely above normal. More carbs, wait again. By the time his sugar was good enough to go to sleep, it was 0230. Alarm sounded at 0630. T1D gets the last laugh!
Monday: No rest for the weary. I take one kid to Golf Camp and run errands while he’s occupied…taking Diabetes with me wherever I go. Once I get home and get all settled, I decide I’ll take a little nap while the boys watch a movie. Literally, as soon as I start to drift off…..*tap tap tap* “Mommy, I feel low!” No kidding. The Devil’s handiwork again. Joke’s on me thinking I could get some sleep.
Evening and middle of the night numbers have been screwy, so it’s time, naturally, to do a basal test. I have to do one every 4 to 6 weeks it seems. I’m constantly working to keep insulin rates ideal in order to manage their blood sugars as close to normal as possible and in order to minimize complication as they grow. It feels like an exercise in futility. Mostly one boy needs it this time, but if I’m up doing one, they’re both getting it. Doesn’t matter to them; they sleep through it all. They’re tortured enough just having this disease, my torture is worry, fear, and sleep deprivation. (For those who don’t know, when I do a basal test, I basically have to get up or stay up through the night to check their sugars every 2-3 hours-- from 6pm to 6am-- to make sure they are getting the proper amount of overnight insulin.)
10pm bedtime. Up at midnight to check sugars. Stuck awake until 0230. Go ahead and check sugars then. About to fall asleep when the kicking Preying Mantis (also known as Jace) joins us in bed. Up at 4. 4:30. 5. 5:30. Check sugars at 6. Guess what? LOW. Did you count the lack of hours of sleep there? Yeah, me neither. I estimated about 4 broken hours. I've always been the kind of chick who needs lots of sleep, so this is the cruelest torture! Does wonders for my attitude!
Tuesday: Up at 0600. Take kid to Golf Camp and run errands, dragging T1D along, while kid is at camp. Attempt to nap again before lunch for an hour or so. 10 minutes in…*tap tap tap* “I feel low”. Devil’s play. So, I get to suck it up all day with burning eyes. 10pm bedtime. Up at midnight to recheck the low sugar of the boy who was high the night before! He’s low. Recheck at 0100. Recheck at 0300. Up at 0600.
Wednesday: Took one hour nap, at the beginning of which I was awakened to “Did you bolus me for my side item?” I really think an alarm sounds when I’m dozing off. (Same as when I pick up the phone or sit on the commode, but that's another blog!) The Devil plants the seed in their heads, “Alright boys…go wake her up!”
To make matters even sweeter, I get to carry on during the day like I didn’t just lose SO much sleep the night before…..nights in a row now. NOBODY cares! The dogs don’t care. The kids don’t care. They still want breakfast, lunch and entertainment. The laundry doesn’t care. The cooking doesn’t care. Get the picture here? I still have to be chef, chauffeur, cruise director, maid, launderer, nurse, wife, mother, and referee…on top of being two pancreases! With all that being said, I get down on myself to boot. My perfectionist attitude doesn’t like not being able to be the best wife, a great mother, a good friend….because my energy is spent being two pancreases, causing other important areas of my life to fall.
Type One Diabetes is a formidable foe. He’s got great torturous moves, like the Devil. T1D leaves me filled with worry. I’m sometimes paralyzed by fear. My hands are tied as to the amount and hours I can work….needing more money but not able to obtain it. My hands are tied as to with whom I can leave my children. Any “basic” event and task takes foresight, thought and planning that isn’t ordinarily necessary (and I’m sure is taken for granted by the non-T1D family). I’m left looking, daily, at this unsolvable puzzle of numbers, trying to make sense of the nonsensical. My foe has “rules” by which he doesn’t play; there’s no Geneva Convention here. The gloves are off! And, I’m left knowing this invisible beast inhabits the bodies of my babies, and until there’s a cure, I can do nothing to make it go away. All I can do is hit it with my best shot(s) *pun intended*.
So, I’m wondering at what point am I supposed to crack? What am I being coerced to do? Why are my boys, me, my family being punished? I’m sure this is a violation of my human rights, but who do I hold accountable? When will that finish line be an actual finish line instead of a mirage? When will this Devil leave us alone?
I’m hoping for sleep tonight, but I’m not holding my breath. You can bet your sweet behind that one boy will be too sweet, and the other won’t be sweet enough! (And, they’re likely to switch beds and roles in the night!) I’m looking forward to a weekend getaway when I know my co-pilot will take the reins and pancreas-it-up for me. I’m looking forward to getting a soul dope infusion, aka…Bon Jovi and time with girls! And, I’m looking forward to a cure!
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