I can’t tell if a “day in the life” post series is indulgent or interesting, but I’ve always enjoyed reading other peoples’ “day in the life” posts, and I think, even from an objective or anthropological sense, it might be of some interest to people to get a peek at the completely varied days that you can have as a diabetic.
I decided this Sunday that Monday would be the day I chose to “feature” – no matter what happened, I’d record it faithfully for this blog. No worries, readers: my body stepped up to the plate, providing a terrible, shitty day for me to record. But isn’t that so much more interesting than a day of perfect control? Yeah…I did this for you guys. You owe me one.
Of course, no day exists in isolation, so to describe Monday I will have to start on Sunday.
4/5/15: Sunday. 11:26 PM. I am so tired, but just as I’m falling asleep holding my copy of Movie Made America (yes, I am reading an academic text about the history of silent films in my leisure time – don’t ask), good ol’ Dexcom alarms. My Dexcom is my continuous glucose monitor, a device that, from a very thin filament which I injected under my skin, takes a reading of my blood sugar every five minutes which it transmits to a small monitor, so I can view the overall pattern of my sugars.
This alarm: HIGH. I have set my Dexcom to alarm when it registers my blood sugar going above 160, which is not crazy high (160 is not a disaster by blood sugar standards), but I’ve learned that since the Dexcom often operates on about a 10 minute delay, it sensing 160 can often mean my blood sugar is actually much higher. Such is the case this time: after testing my blood sugar with the more reliable glucometer, it registers a hefty 204. Not something you want when you’re going to bed.
More importantly, Dexcom confirms that my blood sugar is rising (not only does the Dexcom give a blood sugar value every 5 minutes, it also suggests the trend – are you rising, falling, crashing, holding steady, etc – by showing an arrow pointing up, down, or to the side). My endocrinologist would cringe if she read this, but I make the decision to give myself a hefty dose of insulin before bed – 3 units. Normally it’s not a great idea to give that much insulin before bed (your blood sugar can often crash into hypoglycemia while sleeping), but since I’m 204 and rising, I need to counteract the rise.
I dose 3 units of insulin on my pump, and as the insulin travels through the tube into my stomach, it hurts.
This is not a good sign. My infusion site has hurt every time I’ve bolused (taken insulin) since this morning, which means the cannula (tube the insulin is delivered through) might be sitting on a muscle or a nerve – which is painful and uncomfortable, but, more importantly, means the insulin I’m taking might not actually be being absorbed by my body that needs it.
I should just change my infusion site now – the pain is really suggesting that it’s a useless site, and the 3 units I just took aren’t going to be absorbed. But I’m soooooo tired. Plus, I did take 3 whole units. Which is kind of a buttload of insulin to take if you’re not also eating food, so even if it all doesn’t absorb properly, maybe enough of it will absorb to shift me back down? Maybe? Hopefully? Eh?
I fall asleep while trying to convince myself this was the right move.
4/6/15: Monday. 2:17 AM. Awake again. Why am I awake? A vibration on my nightstand: oh. The Dexcom is alarming. Groggily, I reach for it, expecting to see LOW (3 units was probably too much), but I am surprised to see HIGH again.
I grab my glucometer and shuffle to the bathroom, not wanting to wake up Stefan, and am blinded by the bathroom light. I test. 184. Weird – I shouldn’t have moved only 20 points from 3 units. If I wasn’t totally drunk from sleep, it would be instantly clear to me that something is definitely wrong with my infusion site.
But I am drunk with sleep, so instead I bolus (dose) an additional unit of insulin (ouchie, it hurts!), shuffle back into bed, and immediately fall asleep again.
4:47 AM. Awake again. Dexcom alarm. HIGH. Hey, dum dum, I think maybe your infusion site needs to be changed! I grab my glucometer, a new infusion set, and an alcohol swab, and shuffle to the kitchen this time. I test: 173. Yeah, this infusion site is a bust, and I should have probably changed it 20 hours ago when I knew something was wrong. Groggily, I pull the tube from my body, and, as though to confirm that it was definitely a bad site, blood immediately begins oozing from the hole where the tube was. That’s not supposed to happen.
An infusion set can stay in the body for up to three days – my first two days with this one were perfect, but day 3 something must have shifted and I’ve probably had about 24 hours of less-than-perfect insulin absorption as a result.
I swab up the blood with a paper towel. It takes a disconcerting amount of time to stop bleeding.
I swipe a new site on my abdomen with an alcohol swab, wait for it to dry, and shoot the new cannula into my stomach (the inserters are spring loaded, which makes it easy – you don’t have to directly stab yourself with anything). I prime my pump and take another 2 units of insulin with the new site. It doesn’t hurt. Good sign.
I throw out all the detritus from the site change (except the bloody paper towel, which I leave on the table by accident, and which Stefan will discover when he wakes up in a few hours. Gross and sorry!)
By the time I shuffle back into the bedroom, Stefan is awake.
“You OK?” he asks.
“Blood sugar,” I say.
“High. I should have changed this infusion set a day ago.”
Sometimes when I wake up in the night, he wakes too. Weird as it is, I look forward to these hushed conversations, terse as they are from sleepiness. Insignificant as they might seem, I find them tremendously reassuring. I’m here for you, they confirm, I love you.
9:30 AM. The Dexcom has been alarming since 7:30 this morning, and I have been ignoring it. LOW, it’s proclaimed. The Dexcom alarms LOW with three vibrations if it registers a blood sugar below 75, but it alarms with four vibrations if I really drop – to below 55. Tired as I was this morning, when the “75” alarm went off, I silenced it, convincing myself I’d get up and do something if I got that more concerning four vibration “55” alarm.
I didn’t. Instead, I’ve been hovering between about 75 and 78, so the alarm has been coming and going, and I’ve been resolutely silencing it. I’ve always been very good at silencing early morning alarms. 🙂
The good news is, the fact that I’ve dropped down since the 5 AM site change means the new site is working.
Now, though, it’s time for breakfast, and I’m up for real, so I test my blood sugar. A robust 83. I find if I don’t take insulin as soon as I wake up, my blood sugar tends to skyrocket – probably a surge in the wake-up hormones that our bodies naturally produce.
I’ve been rocking the same breakfast for a while now – a pseudo-pancake made with 1 egg, egg whites, greek yogurt and cornmeal. I make up a batch o’ pancakes and drink at least 2 cups of coffee, and 75% of the time, the dose of insulin that I take for this (4.45 units) is just enough. I dose my 4.45 and prepare for breakfast.
10:40 AM. I should be getting ready to go (don’t have to be at my job until late, whohoo!), but gold ol’ Dexcom is alarming. HIGH. Ugh. I realize I didn’t wait long enough between dosing and eating – usually I hold off about 20 minutes, but this morning I’d had my coffee almost as soon as I bolused, which probably ensured that my blood sugar zoomed up from the food/beverage before the insulin could take effect. I test: 167. Way higher than I’d like only an hour after dosing. I take 1 additional unit of insulin. No pain with my new infusion site. Good things.
11:34 AM. I’m working today as a note taker and general-helper for a meeting organized by my old company, and I’m about 10 minutes earlier than I need to be, so I stop in for more coffee. I’ve found that since I no longer eat the things I used to love: (pita chips! Bread!), coffee has become a new vice. Awkwardly, standing in the Dunkin Donuts, I test again: 146, good. I take another unit of insulin, as I’ve purchased a BIG coffee (caffeine can often boost blood sugar in and of itself), and head off to work.
12:09 PM. Dexcom HIGH alarm – really? I test, even though its awkward to do so in a professional setting. I should probably run to the bathroom to do this, but fuck it: 152. Not terrible. I don’t take any more insulin.
12:30 PM. I was hoping that the food they have for this event would have something I could eat, but I’m so bummed to see that it’s all a bust: cookies and sandwiches (100% of which are made with HUGE slices of white bread, or white rolls, or focaccia. Really?). The lone salad contains nuts, to which I am deathly allergic. Looks like I’m going to have to eat the protein bar I was hoping to save for my dinner. Maybe I can wait a bit.
1:00 PM. Another HIGH alarm – my blood sugar seems to be hovering around 160. Definitely higher than I want. No time to test; I should be working. I quickly take 1 unit. It was a very, very big coffee.
2:23 PM. Yay! Crudites and hummus have made their way to the snack table. Good news, because I’m hungry. Also, since every important person at this meeting has always helped themselves to a sandwich, it feels acceptable for me to take a tuna salad sandwich, scrape out the tuna salad, and throw away the bread. I dose 2.65 units for the crudités, tuna salad, and a protein bar.
3:58 PM. My job today is to take notes, which I’m finding quite stressful – people are talking VERY quickly, and using big ass words, and I’m trying to transcribe at the same pace. And mostly failing. Is it the stress that has my blood sugar at 176? Probably. Or maybe there was something in that tuna salad that I hadn’t considered, and I haven’t taken enough insulin. I want to finish my protein bar, but the 2.65 units I dosed for the bar at 2 PM didn’t even cover the half of it I ate. I take 3 more units of insulin – because I am getting the sense that this is a very insulin-resistant type of day, and Dexcom confirms that my blood sugar, (AGGGGHHHH), is rising.
It’s the stress; it has to be. Without going into detail – this particular job is not my most footloose and fancy free of my freelance positions.
The frustration of blood sugar that simply WILL NOT fall to acceptable levels is hard to explain in words. Fuck it. I take a fourth unit. At this moment, I’m so frustrated that I’d rather drop too low than stay up high. (A frustration I think many type 1s can relate to, and every endocrinologist cringes at).
4:41 PM. I test at 201.What the hell. I truly, truly can’t describe to you the frustration that comes from a blood sugar that won’t go down like this. Is it stress? Is it something in my makeshift lunch? The tuna salad maybe had more carbohydrate in it than I thought?
Or, more likely, is this just “one of those days” where blood sugar spikes for no apparent reason, without explanation?
5:19 PM. Dexcom continues to assure me that my blood sugar is rising (WHY?! WHY?! I took four units of insulin an hour ago!!!), so I test. 219. ARE YOU KIDDING ME. Desperate now, I take 2 units as I rush out of the meeting. I’m hungry, but I’m also late for rehearsal, and being texted about being late for rehearsal, so I decide I’ll go straight there.
5:57 PM. On the subway platform, Dexcom finally, finally shows me that my blood sugar is dropping. I guess the SIX FUCKING UNITS of insulin that I poured into my system this afternoon are finally working. (It probably also helps that after sitting and taking notes all day, I’m finally moving, walking, active again.)
As I wait for the train, I try not to think about how exhausted I am. One of the scariest bits about getting diabetes has been the change in my overall energy levels. Even at 211 pounds, I had more energy than this. These days, I tend to be OK until… I’m not. I reach a point in the day when I just run out of gas, and there’s no reserve. I’m not used to having no reserve. The exhaustion hits like a tidal wave.
6:45 PM. Made it to rehearsal, and my blood sugar tests at a beautiful 102. Thank god. In the back of my mind, I vaguely consider that I should keep an eye on it, because I did take a lot of insulin before, but then I make the mistake of getting distracted by rehearsal. And when you stop thinking about diabetes…
8:00 PM. I am suddenly aware of two things: for one, my hand is inexplicably shaking. Hmm. The second thing that I am suddenly aware of is that people are talking. This is how lows tend to hit me – I suddenly “realize” that I haven’t been at all conscious of the world going on around me for a while; that I’ve mentally checked out.
Where am I? Oh right, still rehearsal. What am I doing? Oh, right, listening. Why is my hand shaking?
Test, I realize. Test test. OK. I pull out my glucometer again. 63. Low. Not terrible, but not great. I look at my Dexcom. LOW, it says, confirming 63 (and it’s so rare that the Dexcom perfectly matches the glucometer!) But I swear to GOD I didn’t feel that low alarm go off. No matter -I have a bag of popcorn in my tote – 9 g of carb. Maybe that will be enough. I scarf it down.
8:18 PM. See, the thing about “low brain” is that it’s a very, very stupid brain. We don’t treat lows – even moderate lows, like 63, with complex, slow acting carbohydrates like popcorn. We treat them with juice, sugar, simple sugar; something that will act quickly, as fast as possible.
Normal brain knows that. But low brain does not. By 8:18, my heart is racing and I can’t focus on anything around me. People are talking, maybe even to me, but I’m not hearing it. I feel awful. I wish the shaking would stop.
Test. Test. I test. 49.
OK, I tell myself, this is why we don’t treat lows with complex carbohydrates.
I have a juice box in my tote bag – I always try to have one for emergencies. I pull it out and struggle with the straw. I always struggle with the straw when I’m low. Why is it so impossibly difficult to break that little plastic around the straw?! Who invented this? BREAK, plastic! Break! (So…in my defense, I’m fucking Low!)
If I was at home, I would feel no shame asking Stefan to open the straw for me – I often do. But here, it would just be weird – they’d probably think I was joking, and I would have to explain what was wrong, and I’m hoping to just discreetly ride this low out.
Instead, I struggle for way longer than is appropriate. Is anyone looking? I’m going to invent an easy-open straw on juice boxes, especially for diabetics with hypoglycemia. This shit is ridiculous.
I finally pop it open and desperately drink. I feel like I could eat a candy aisle right now – I’m fucking starving. (Another side effect of the low). Someone notices I’m drinking a juicebox and makes a comment about it. I probably respond rudely – but it’s the low, I swear!! I get up, toss the box in the garbage can, and rush to the bathroom. I lock the door and sit on the floor, waiting for the shaking to stop. At this point, I know I am showing it, and I don’t need anyone asking what’s wrong. The last thing I want to do is talk right now. Open my mouth at all. I just want to sit here until I feel better. And I will – I have the glucose in my system. I’ll just ride this one out on the floor of the bathroom.
Three minutes later, the worst is over. I return to rehearsal.
8:40 PM. Break time. I’m still not feeling amazing, but mostly I’m starving. I shouldn’t have eaten my protein bar for lunch – it was supposed to be dinner. I’ll have to buy something, which I hate to do. I spend a few minutes wandering the aisles of the convenience store aimlessly. It is always impossible to decide what to eat if I haven’t planned it out before hand. Options are limited. I settle on a yogurt (9 g carb, according to the label), a banana (maybe 20 g carb?) and a small packet of peanut butter (8 g carb). With my blood sugar rising – spiking, actually, from the juice – I take 4 units of insulin to cover my impromptu dinner, and the 9 grams of carb from the popcorn I ate forty minutes ago, which, thanks to the complexity of its carbohydrates, should be hitting my system about…now.
8:50 PM. I check the Dexcom and see the symbol I hate most: two straight up arrows, indicating my blood sugar is spiking incredibly fast. It could still be from the juice, but it makes me nervous. I don’t need six more hours of blood sugar in the 200s. Should I have taken more insulin with my fake-o dinner?
No. Duh. I took enough insulin, but I ate immediately after dosing, which was stupid. I didn’t wait the 20+ minutes that allows the insulin to have a head start on the food. Unlike non diabetics, Type 1 diabetics don’t produce any of the hormone amylin (which is also produced by the beta cells in your pancreas – the ones my body has killed. Thanks body). The problem with not producing amylin? Amylin is a hormone that slows the speed with which food is converted into glucose in your system. Without amylin, food can often turn to glucose very quickly – even more complex carbs – hence the blood sugar spikes that are so fucking bad for you. The ones that I get all the time.
My blood sugar tests at 115, which obviously is just fine, but Dexcom insists I’m 115 and double-arrow-spiking. I’ll keep an eye on it.
9:31 PM. 163. Yeah, this is a lot higher than I’d like to be right now. I know I have some insulin in my system, but I know my body pretty well at this point, at least when it comes to blood sugar spikes, and 163 is the sign of bad things to come. I take a conservative half unit of insulin, in the hopes that it will calm things down.
9:51 PM. It seems to have worked. I test again: 157.
11:01 PM. I finally get home from rehearsal. I am starving – fake dinner didn’t quite do it for me. I test at a beautiful 106. I make a huge salad with all the fixins and take 2 units to cover it.
12:09 AM. I can barely keep my eyes open, but before I go to sleep, I have to do my pre-bed test. I prick my finger for the 19th time today, and my blood sugar shows up as…”Error Code 5″. Not enough blood in the strip.
19 tests in one day was so uneven, anyway. Twenty has a nicer ring to it.
Test 20 puts me once again at 106. I don’t love the fact that I’m going to sleep with a bolus (insulin dose) still active in my system (I took those two units at 11 PM, and insulin generally takes 4 hours to work through your body), but I’m too tired to do anything about it. And hey, if anything goes wrong, the Dexcom will alarm. Fingers crossed that it doesn’t.
I wish I had had a more perfect day to describe – frankly, I’m embarrassed at how high I was this afternoon, but whatever. I committed to sharing Monday.
It wasn’t pretty, but hey: the good news about diabetes is that if a day goes badly, you always get to wake up the next day and try it all over again.