Showing posts with label thinkpiece. Show all posts
Showing posts with label thinkpiece. Show all posts

Thursday, November 9, 2017

Diabetes Awareness Month 2017: I Just Wanted You To Know.

November is Diabetes Awareness Month. I haven’t posted about it yet because, ironically, diabetes has been kicking my ass for the past few weeks, so I’ve been all too aware of it. If you’re my friend, I’m sure you’re aware of diabetes. I used to never talk about it, and now sometimes it feels like I never shut up about it, but that’s the whole point of a chronic, incurable illness; it’s not going away, and it’s all too easy to have it kill you. Diabetes is horrible in times of ease and routine, so the more stressful life is, the worse it gets; it’s a vicious cycle. Yesterday was particularly bad, and the worst thing is, it’s often bad without reason. Let me walk you through my set of choices. (This is long, but please, please read it.)

A normal human’s blood glucose levels should be between 4-6 mmols/L, with a person with diabetes’ ideal levels between 4-8. Even more ideal are levels that don’t rise to more than 10 two hours post-meal. Beyond about 14, things tend to feel pretty bad. You get thirsty, your eyes get sandpapery, if you’re me you get intense heartburn, you feel sluggish, tired, and generally crappy. At 4.0 or lower (we’re talking even 3.9), things are much worse. Even 0.1 into the danger hypoglycemia zone and there are shakes, your heart pounds, you start feeling like you’re going to faint. You may break out into a cold sweat, which is charming. You get thirsty. Your body screams at you to consume everything possible to stay alive.

Did I mention that your blood glucose meter is only legally required to be +/-20% accurate? That means that you’re asked to stay in a 4-point range, and yet many readings in the 4s can actually signify a low. You don’t actually know. Most of the time you have to trust what your body is saying as well, which is difficult, because your body likes to do a nifty thing called betraying you at every turn. Don’t get me started on the lot that befalls people with hypoglycemia unawareness. It can be incredibly dangerous.

Here’s what can affect blood glucose:
  • What you eat (Carbohydrates, but not just that. If you eat a mostly-protein meal, you have to take insulin with a complicated formula or your glucose can spike. It’s not just cutting carbs. One of the meals that tends to turn me into a high blood sugar zombie is plain roast chicken and vegetables, no starch, which is generally looked upon as a very healthy choice. What’s the food’s Glycemic Index? Exactly how much are you eating? Is it any wonder a lot of people just say “screw it”? Are packaged foods good for you? Generally not great, but they at least have the carbohydrate information on the box.)
  • What you don’t eat
  • Exercise (this can affect you during exercise, and up to 18-20 hours after. Your blood sugar can crash during exercise or it can spike, based on the type of exercise you are doing and how long. It can then subsequently rise or crash during the next 18 hours, at ANY time. “Just go to the gym!” Not that simple.)
  • Mood
  • Stress
  • Amount of sleep
  • The weather (seriously. Sitting in the heat can raise your blood sugar.)
  • Other hormones
  • What time of the month it is
  • Quality or age of insulin
  • How many days you’ve had an insulin pump site in
  • Where the site is on your body
  • Your insulin resistance
  • Your weight
  • Alcohol (drinks can spike your blood sugar and then crash it hours later)
  • The time of day (I require different amounts of insulin at different times of day.)
  • Whether or not the little bits of plastic that deliver the insulin get bent or work properly
  • How much you are working, and what type of work it is (physical, brain)
  • The “dawn phenomenon” - a lot of people have blood sugar spikes at dawn. Some people don’t. Some people spike sometimes and not others. There’s no good way to correct for this, because the last possible thing you want is to take too much insulin while you are asleep, because your blood sugar might go too low and you might never wake up. It is a thing that has happened to far too many people. We take it seriously.


Does this convince you that it is NOT simply a matter of carbohydrates in, insulin calculation, you’re fine?

So let’s talk about my day.

Tuesday, I cleaned my apartment all day. I was stressed. It was a lot of physical work. I did not eat that much: an English muffin sandwich, some vegetable soup, vegetables. For some bizarre, unexplained reason, I woke up at 16.3. By the time I went to choir in the evening, I was a respectable 6.5.

On Tuesday night, I ate a sandwich from the local sandwich emporium for dinner. Before eating it, my blood sugar was 9.2. That’s largely fine. I was unworried. If anything, I was slightly concerned about all the scrubbing I’d done on my hands and knees over the day. Would it tank my blood sugar overnight?

At 3:26am Wednesday, I wake up. I feel terrible, so I check. 17.7. Before the past few weeks, I had not been getting these numbers regularly, so this is especially inexplicable. But, the new landlords are coming to inspect the place and I am involved in a labour dispute, so there is semi-constant stress. I curse silently and take the right correction, hoping that it’s not too much of a correction.

I get up around 8:15am to await the landlords who never show up (stress, sitting and waiting). I don’t feel great, but chalk it up to stress. At noon, I decide to eat something. I check. I am 19.9. This is a horrible number. It’s higher than where I was at 3:30am. I TOOK MORE INSULIN AND I ATE NOTHING. Talk about inexplicable. I decide there’s probably a problem with my site, because the Unomedical sites compatible with my Animas system (did I mention Johnson & Johnson are pulling out of Canada due to a lower profit margin than they wanted, leaving those of us who use the Animas in a really complicated and crappy position? No more tears, indeed!) So I take more insulin. I eat my English muffin + protein, because it’s been more than 12 hours since I’ve eaten anything. I change my site, because I gave myself insulin, but who knows how much got through. On a whim, I give myself five more units of insulin with the new site, assuming there’s been some blockage/leakage.

I have felt bad all day, but that doesn’t stop me (well, thanks to Claire) from going to the gym. Before I go, I check. 7.4! YES, finally! My 5-unit gamble paid off. Without it, I’d still be sky-high from nothing. So I eat some asparagus soup, very low calorie and low carb. I take a little insulin for it. I reduce my basal rate by 50% for two hours (if you want to go exercise, you need to plan to start this an hour before. If plans change or something comes up, whoops, now you have to deal with that!)

I spend an hour at the gym with Claire. I run a couple of miles, do a bunch of weight machines, leg exercises, stretches, etc. I am doing good things for my body. I am being healthy. Claire and I decide to go to a storytelling show, that is, appropriately, about blood (the organization Bloodwatch and the tainted blood scandal of the 1970s-80s in Canada). First, I need to eat something. The only place around is Subway, so I have a small sandwich, mostly vegetables. I check and I’m 4.1, but I feel like I’m going low. I could already be low; remember, +/-20% accuracy. So I eat the sandwich and modify the amount of insulin I’m taking to about half the sandwich. It’s not like I’m eating raw sugar; it’s going to take a bit to bring me up.

During the 2.5 hours in the storytelling evening, which is absolutely fascinating, I consume one beer. It’s a gose, not super high in alcohol. We decide to go to a bar afterward. I’m sitting at the bar, and I don’t feel great, so I test myself. 16.2. What in the everloving hell. It’s terrible again. So, in the hour-plus at the bar, in which I consume one more beer (not particularly binge drinking), I take a little more insulin.

I get myself home at about 12:15. I’m hungry, because I’ve eaten maybe 1000 calories that day due to weird blood sugars. But I’m a little TOO hungry. And I feel out of it. Looks like the beer and the exercise and the insulin have finally come together to do their unholy work. I am 3.0, and from the way I feel, I’m dropping fast, headed into the 2s and beyond. Eat everything, screams my system. Eat it all, NOW. I eat plain sugar by the spoonful. Blech. I eat four fun-size Mars bars, which seem bitter after the sugar. I eat some cereal, no milk. I feel I have undone my entire workout. After sitting and shaking for what seems like forever but is probably just a couple of hours, I feel secure enough to fall asleep on the couch. I don’t have the energy to stand up and go to bed.

It’s 4:45am. I wake up, and feel a little queasy in anticipation of how badly my sugar must have rebounded after what I’ve eaten. I check. I’m 11.3, which is honestly not so terrible. I take a correction and drag my ass to bed.

I get up at 8:15 to await the building manager. I’m exhausted. Out of reflex, I check. I am 5.5. I am exactly where I want to be. It is perfect, for only this moment. I have won, for only this moment. I am too tired to enjoy it. It will be different in an hour, in half an hour, in fifteen minutes.

I will still go to the gym today.

This is a bad day. Not all days are like this. I have had pretty good control these past years, all things considered. But it is not the worst day, either. So, on Monday, when the endocrinology resident asked “how are your blood sugars,” I just laughed, and said, “Well, it’s day to day, isn’t it?” Because that’s what it is. It’s day to day, and it’s all day, every day. And with all this, I have a graduate degree, freelance, (generally) have a more than full-time job with millions of factors in itself, go to the gym, perform in various arts groups, do theatre reviews, organize hundreds of interviews, and generally volunteer for just about everything under the sun to make people happy. Sometimes, it feels like a miracle. In the past few weeks, because of the strike, I have realized how very tired I am. This does not mean I will stop.

Don’t get me wrong. Other people have it much worse than I do. I do not need to worry about running out of money or support. I have an incredibly kind network of people out there. I am privileged. Thanks to Dan, I even have health insurance, but that doesn’t touch the day-to-day work of this.

So that’s Diabetes Awareness Month for you. Next year, I will still have diabetes, though other things may be different. I will still be the person that I am. I will still be trying very hard. I will post again.


I just wanted you to know.

Wednesday, May 9, 2012

Latitude and Longitude

Today is a day that students and teachers at my college anticipate (and I'm sure some dread) alike; the first day of a new semester. It's a fresh start, full of possibilities; the frightening prospect of failure twinned with the giddy prospect of success. I feel it too. Will my students click with me, or won't they? Will they be excited to learn, or will they drag their feet? In terms of "fresh starts," yesterday I also joined a gym for the summer, in the hope of dropping some weight, but more importantly getting in shape and helping my blood glucose numbers. Ideally, I'd like to be in shape enough to be able to be active and sing at the same time.

So many hopes, so many possibilities.

Diabetes is doing its best to stymie both of my fresh starts today.

My first class today was lovely. My students seem nice and engaged. As they were finishing class by writing a diagnostic, I wondered why, then, did I feel the need to throw up? A quick look at my side showed that my site was no longer inside said side. As students wrote on, I tested at 18.6, and then, as the class ended and some students stayed after to finish up, I couldn't take it anymore and changed my site, hiding behind the professor's podium. (I think they were nursing students, so they've probably seen worse.)

I was going to take an exercise class at 2pm, but I still am not doing too well and I haven't eaten anything yet. It's perhaps heartening that a number like 18.6 can do this to me, because it shows my results have been better lately.

In the TV show The West Wing, Sam Seaborn, the show's idealist, has his world uprooted. He says, brokenly, "it's just there are certain things you're sure of...like latitude and longitude." As diabetics, we have this notion tested again and again. We used to be sure of the function of our bodies; that they would take care of us, always be functional until we aged significantly. Sure of things like latitude and longitude. Our bodies have proven otherwise.

Now, we place great trust in our devices. We try to believe that they will never fail us. We place our lives in the hands of plastic and metal and batteries and medical research, sure that they will work; sure that they will always deliver some sort of base measure of performance. Like latitude and longitude. We know this isn't true. Plastic fails. Metal fails. Batteries are spent. People get sick. People die. We take a lot on faith. Like latitude and longitude, which are invisible.

Donna tells Sam that, according to CJ's cartographer meeting, he shouldn't be so sure about latitude or longitude. The more we know about our condition, the more we know we can't be sure of anything. That BG result? 20% margin of error is apparently acceptable. That cure? Mice only. That pump? Defective model.

Life is precarious, but there are some ideals that are worth hanging on to. Like Sam's idealism. Like latitude and longitude.

Like tomorrow's fresh start.

-Ilana

Monday, April 16, 2012

Diabetes and the Narrative Impulse (Harry Potter vs. Owen Wilson)

When a person is diagnosed with diabetes, one of the (unhelpful) responses we often get is “well, at least it’s not cancer.” Why do people focus on this particular comparison, minimizing the impact of diabetes? In the theatre, one of the things I’m fascinated by is the concept of the illness narrative – whether it be AIDS (The Normal Heart, Angels in America), Cancer (Wit is probably the most famous) or mental illness (Proof, King Lear, 4.48 Psychosis, too many to count), among others. These narratives show us how people and society deal with the concept and reality of illness.


The comparison between cancer and diabetes intrigues me, because cancer is far more traditional from a narrative standpoint, and perhaps that’s why it gets so much attention and sympathy (and is popular in theatre, novels, etc.) – there’s a bad guy, your life is on the line, you fight him and either lose bravely as a martyr or emerge victorious as a hero. The plot is traditional and as potentially satisfying as a narrative can be.


Diabetes is a non-traditional and frustrating illness narrative because it is chronic. At least, with cancer, you can WIN. There is no winning in diabetes. There is doing better, and doing worse. And it’s a fatalistic narrative that you have to fight against mentally, because there is an almost 100% chance that, no matter how long you live, the “bad guy” will quietly win – diabetes will at least be partially if not fully responsible for your death. People with chronic conditions have to adapt to the nontraditional illness narrative, the one where illness becomes static and isn’t filtered through a satisfying narrative goal. People thrive on creating stories for and about themselves. That’s why stories are there; they shape our lives, and how we understand ourselves. And that’s why there is so much diabetes burnout- the “goal” isn’t victory, it’s daily survival. It's also why it's harder to fundraise for chronic conditions, unless you show pictures of adorable children. A vital community is necessary when it comes to diabetes – it must be continuous, always there, flowing like the condition itself. It’s why people blog – they are creating and sharing their stories.


So with diabetes, there is no large, exciting battle, only many everyday ones. It’s not Harry Potter. It’s not Spider-Man, Transformers, or The A-Team.


It’s Office Space, and your diabetes is that annoying boss, Bill Lumbergh, and man, do you ever have some TPS reports to file. And just like you can do the same thing with diabetes day after day and totally different things happen, today you need a cover for your TPS reports and you didn’t realize it. Didn’t you get the memo?


Yes, diabetes isn’t Frodo vs. Sauron. It’s more like a terrible buddy-cop-romantic comedy movie starring a bumbling Owen Wilson.


Stick with me on this one.


So Owen Wilson, force rookie, and his older, beleaguered partner, let’s say Tom Hanks, or maybe Denzel Washington, are patrolling your insides. The autoimmune team. And Owen Wilson is your best friend, but he’s a hothead and HE’S A COP WHO DOESN’T PLAY BY THE RULES! Yeah, one of those. He’s going straight for the top, but then he takes too many chances and accidentally shoots your innocent pancreas, who is probably played by Ben Stiller or something. And there’s a total mess and DenzelTom says, “This is what happens when you don’t PLAY BY THE RULES.”


Anyway Owen gets kicked off the force and he feels really guilty about it, so he decides to move in with you to make things right. He’s always hanging around. It’s like You, Me and Dupree, or something (disclaimer: I have never seen You, Me, and Dupree). And you just can’t make him move out because you feel guilt for some reason; maybe it’s that Wilson charm, maybe you feel partially responsible, maybe he just keeps on coming up with more and more convoluted reasons to stay. So you have to deal with him clogging your sink and never cleaning his stuff and breaking your lamps from time to time. And that’s the narrative. Owen Wilson screwed up on the job, he’s moved in with you, and one day his comical antics will inevitably burn down your house. Cancer is Lord Voldemort. But Harry (spoilers) beats him. You’re stuck with Bill Lumbergh, and you’re stuck with Owen Wilson.



-Ilana