Blame Game

Most people think of diabetes as a very physical disease, but there is a huge mental and emotional component to its management.

As I’ve said before, diabetes is one of those things where you can do everything right, and still not end up where you want to be. Super frustrating- like throw-your-pump-against-a-wall frustrating. Not that I’m suggesting that’s a good idea, because pumps are mega expensive, and you should never intentionally damage your pseudo-pancreas. But the sentiment is the same.

The other night, I went out for dinner with my roommate and her family for her birthday. It was fun, and we had some good food! I knew there was a possibility that my blood sugar could be affected during the night while I slept, but I did the best I could in calculating my insulin dose.

My CGM probably woke me up about 5 times during the night as I dipped below and rose about my “high alert” threshold, then started rising more dramatically. This resulted in several correction boluses and tests on my meter that kept me up for a fair part of the night. As I climbed out of bed feeling zombie-like and dehydrated, I found myself thinking,

“I shouldn’t have…”

Shouldn’t have celebrated my friend’s birthday the way anyone else would have? Shouldn’t have eaten the part of my dinner that I knew might give me trouble later? Shouldn’t have assumed that one correction bolus (with a little extra for good measure) would be enough to bring my blood sugar down to a level that wouldn’t make me feel sick in the morning?

The reality is, I had done everything I possibly could to both enjoy my friend’s birthday and keep my blood sugar under control. I regularly put 150% into my diabetes management, but often don’t see the results I’d like.

In a more extreme example, last fall, my blood sugars were very high (high 200s-low 300s) the vast majority of the time for a few weeks, despite massive correction boluses, basal and carb ratio changes. The fact that I was having trouble putting in pump sites where the insulin would absorb well was not helping. I felt sick and dehydrated and upset with my pump all the time, and one night during class, I developed blurry spots in my vision.

I was absolutely terrified. I could barely form coherent sentences when I called my mom. Had I damaged my vision by not taking proper care of myself?

Luckily, the endocrinologist on call at my doctor’s office assured me that it was likely a temporary fluid imbalance in my eyes, caused by my frequent high blood sugars. And sure enough, my vision returned to normal shortly afterwards. But I still blamed myself for this scary incident- even though I was doing my best to take care of myself in a difficult situation.

All anyone can expect from you in managing your diabetes is your best effort. After all, you didn’t ask for your body to attack your pancreas. Your best IS good enough. Don’t let anyone tell you it isn’t. Don’t feel bad if everything isn’t perfect all the time- what would you have to sacrifice to get the control you want? I think it’s better to live your life freely, have fun, and enjoy your experiences, instead of constantly worrying about keeping your blood sugar in range.

In case anyone was wondering, my eyes suffered no lasting damage from that incident, and I have a much better relationship with my pump at this point in time. I’m still working on not blaming myself when my blood sugars are out of range- but what goes up must come down, right?

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Diabetes Is, Part 2 (optimism)

Diabetes is being part of a community of diverse, creative and supportive people who all share one thing; non-functioning beta cells.

Diabetes is having friends all over the country, and getting to know people you never would have met without this diagnosis.

Diabetes is being able to give your workout 150% when your blood sugar is high, and you don’t have to worry as much about going low.

Diabetes is having spontaneous dance parties in your living room when your blood sugar is just a little high, and you want to get it down by getting down.

Diabetes is being a master at reading nutrition labels, and doing simple math in your head. It’s already knowing decimals and ratios when you start third grade math, and being ahead of the rest of the class. They know that stuff so that they can pass a test; you know that stuff so you can eat lunch.

Diabetes is developing amazing analytic and pattern-recognition skills. Picking out variables that affect a particular outcome (blood sugar) is second nature.

Diabetes is being fearless in the face of needles.

Diabetes is convincing people that your pump is a battery pack, and that you’re actually a robot.

Diabetes is having a ready-made excuse when you want to get out of doing something. “Sorry, I can’t help you bring in the groceries, my blood sugar’s low.”

Diabetes is doing whatever the heck you want to do, while also doing the job of one of your internal organs. (Not easy, but we’re pros.)

Diabetes is instantly making friends with strangers when you notice a pump or glucometer.

Diabetes is having the BEST stories. (“So this one time, when I was low, I almost ate a sponge…”)

Diabetes is spending so much time on hold with insurance companies, supply distributers and pharmacies that you’re convinced you could play their “hold” music from memory…despite not actually knowing how to play the piano.

Diabetes is probably having enough lancets stocked up in your supply cabinet (THAT cabinet) to last you a solid 5 years.

Diabetes is your roommate wondering why you keep your laundry detergent on top of the fridge, and explaining that it’s actually full of used needles, not soap…

Diabetes is when your friends and roommates keep your food preferences in mind when planning outings, or what to make for dinner. It’s when they start picking up and using your dialect of diabetes-lingo. It’s when they always remember to buy diet soda for you for parties.

Diabetes is an open door to a world of opportunities. It’s having a perfect college application essay topic. It’s having a standout reason for going into your field of choice. It’s being motivated to help others like you because you understand what they’re going through on a personal level.

Diabetes is knowing that if you can manage a chronic disease for most of your life, you can do ANYTHING.

Diabetes Is

I’ve been feeling a bit pessimistic (okay, REALLY pessimistic) about my diabetes lately, dealing with several days of consistent highs, and now consistent lows, so here’s my semi-poetic rant that’s also appropriate because it’s diabetes awareness month.

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Diabetes is NEVER sleeping through the night. My CGM is like a newborn child; it loudly wakes me up every two hours to scream for insulin or sugar, then forces me to stay up, making sure everything returns to normal.

Diabetes is having to stop your workout after 10 minutes because your blood sugar is falling fast- despite eating 50 carbs before you started.

Diabetes is learning how to deal with insurance companies at a much younger age than everyone else.

Diabetes is going into absolute panic mode if someone suggests eating out at someplace where you don’t know the menu. It’s ordering a salad because enjoying the dish you really want isn’t worth twelve hours of inconsistent blood sugars.

Diabetes is suddenly realizing that you prick your fingers and inject insulin many times EVERY DAY- with no immediate reward. Sure, good blood sugars are nice, but that’s nothing special. Non-diabetics have great blood sugars every day.

Diabetes is worrying that every time you tell someone “I have diabetes,” they’ll assume that you’re irresponsible or unhealthy, or (if it’s someone in an authority position) they won’t let you do what you need to do to take care of yourself.

Diabetes is never being able to go anywhere empty-handed, having to carry juice boxes as a childless adult, having to make sure you take everything you could possibly need- or else you could be stuck without insulin.

Diabetes is being forced to eat when you’e not hungry. It’s only drinking juice when you have NOTHING else to treat your low, because you’ve grown to hate it. It’s buying a bag of discount Halloween candy, and wanting to throw it all away two days later because the thought of eating any more sugar after a spate of lows makes you feel sick.

Diabetes is not being able to eat when you ARE hungry because your blood sugar is high and won’t come down.

Diabetes is knowing that no matter how hard things get, there are people around you who support everything you do. It’s knowing that what goes up must come down, and what goes down must come up. It’s knowing that every day is different, that your blood sugars will be better tomorrow. It’s knowing that the technology that keeps you alive will only continue to get better, and that one day, there will be a cure.

(But probably not in 5 years, like everyone always says.)

Stay tuned for a more optimistic “Diabetes Is, Part 2”!