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Six Things for D-Blog Day

November 15, 2010

Did you know that November 9th is International Diabetes Blog Day? Me neither.

Diabetes-bloggers celebrate the occasion by blogging on a common theme: the six things they wished people knew about diabetes. It wasn’t until crying over reading so many other Six Things that I’ve decided to take a stab at a D-Blog Day post myself.

So here it is. On this, the sixth-month anniversary of being discharged from the hospital – and the six-month anniversary of my first self-administered insulin shot – here are the Six Things I Wish People Knew About Diabetes.

1) Diabetes is hard. So hard, for so many reasons. Managing glucose levels is hard. You can eat the same thing every day, exercise at the same time and intensity, and still get completely varying results. I run almost every day (brilliant at lowering glucose levels), and eat ridiculously well. And my levels still run high when I least expect it. And as scary, frustrating, and shaming as a high reading can be, getting struck by low sugar sucks way worse. They are physiologically terrifying, often intellectually perplexing, and always challenging to avoid blaming yourself for having miscalculated. Having to force-feed is hard. I need to run between 8-10K a day before I feel like I’ve gotten the exercise I need. Because the basal insulin I need to take every day doesn’t turn off just because I’m burning more calories, it’s pretty much impossible for me to run for fifteen minutes before needing to eat some sugar. I can’t run without a whole lot of emergency dried fruit. Diabetes is expensive. I test my glucose about 15 times a day – because I’m an active, responsible, invested diabetic – and yet it costs almost a dollar per test strip. Having to explain my diabetes is hard. Giving insulin shots in public is hard. Interrupting a conversation because I am having a low-sugar attack is hard. And how do I explain that I can’t go out for brunch because I’ll get hypoglycemic if I skip breakfast first-thing?

2) Diabetes is lonely. In the month following my diagnosis someone close to me reminded me: “you’re still Sarah, not Sarah the Diabetic. Don’t forget that.” While I appreciate the good intentions, I beg to differ. I am Sarah-the-Diabetic. It’s not because I chose to be, or decided I wanted some cool new identity to make me different. But it’s just a fact: if my diabetes isn’t under control, nothing else can really work. Ignore my diabetes for even a couple of hours, and I may well be found passed out on a street somewhere, perhaps never to wake up.

It’s hard for some people to understand how pervasive an illness this is. Sure, I can still live my life as I would have before (arguably in even greater health and mindfulness), and sure I look healthy, but I’m on D-duty 24/7. Not just with the testing, or the bolus shots, or the correctional shots, or the frantic emergency snacks – but in my thoughts. It may not look like it, but I have to think about diabetes all the time.

So yes, I am Sarah-the-Diabetic. And few people who don’t live with diabetes – or with a diabetic- quite understand what that means. Which is fine – I wouldn’t expect them too. But it sure does make me feel alone.

3) Machines don’t treat diabetes – diabetics do. “So, if it can tell you what your glucose levels are,” I was asked at a bar recently by a co-worker as I put away my glucose meter, “couldn’t that tell you how much insulin you need to take now too?” I did my best to explain to this guy how much it doesn’t work that way. Forget the fact that what amount of insulin we take has far more to do with what you’re about to eat than what your current glucose level is. While a machine can read a glucose level – at a speed and ease that borders on miraculous – a machine doesn’t know what you ate for breakfast, when your last insulin dose is going to peak, if you’re hungry, how much exercise you’ve had today, if you’re feeling a little stressed, whether you’re going to drive home in an hour or walk, what the glycemic index is of the food in your belly right now, or whether you’re pre-menstrual.

Machines are wonderful tools for diabetes management. The technology available to us allows us to make much more precise speculations. I am beyond-grateful for all these tools, and for the speed at which new breakthroughs are being made. I am equally grateful for my incredibly supportive endocrinologist, diabetes nurse and my dietician, all three of who educate and advise me on different approaches to managing my diabetes. But neither machines nor medical specialists manage a patient’s diabetes. Diabetics manage their own diabetes, and the scope of factors we have to consider grows broader the more precise our management gets.

4) Diabetes happens every second of every day. Diabetes never stops, and I never stop having diabetes. Lows can happen at any minute, the day or night. No short walk to the grocery store, trip to the gym, meal at a friend’s house, or Saturday morning sleep-in can evade the diabetic checklist. A part of our brain must always be thinking about our glucose level. My pancreas doesn’t do it for me anymore, so I’ve got to do it myself.

5) Needles don’t hurt that much – needing needles hurts.

If the worst part of having diabetes was having to stick a needle in my belly 4-8 times a day, I’d be fine with it. Anyone, despite popular opinion – can give themselves a needle. Like putting in contact lenses, after a few tries it’s not that big of a deal. And they are so short these days you barely feel it (except every now and then I hit some nerve in my belly that makes me yelp in pain it’s so bad – but still, it’s over in a second). If all we had to do was follow a simple formula – x units of insulin x times a day – it’d be fine.

Unfortunately, treating diabetes isn’t like treating an ear infection. There will never be one set dose that “does the trick,” because there will never be one day of your life that is absolutely identical to the last. Needles aren’t the problem. Knowing when to give a shot, how much to give, when to correct, and when to HOLD OFF because you’ll be biking to rehearsal in two hours right when the insulin PEAKS and you’ll go HYPO if you take a shot now, but the trade-off is that you’ll go really high for the next two hours until your bike-ride – well, I won’t call it a problem, but it definitely ain’t easy.

6) Diabetics deserve a cure. This illness sucks. It’s not cancer, it’s not MS, it’s not HIV, but it is exhausting, consuming, life-threatening, expensive, epidemic, and lifelong. Diabetics never get a day-off from their illness, and diabetics never go into remission. We may make it look easy, but it’s not. And they don’t call it the Silent Killer for nothing. Researchers have been promising a cure for decades now. I may be biased, but think diabetics deserve one.

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3 Comments leave one →
  1. Elaine permalink
    November 16, 2010 11:33 am

    Well done, darling.
    When I tell people about your diabetes, the usual response is something like, “Oh, but it’s so manageable now,” and that’s true, but I also need to remind them that it’s a life-long sentence to constant vigilance, constant life-threatening risk. It is SO much easier now than a generation ago, and within a few years we may see real cures for type 1, but meanwhile you have to manage this pretty well all the time, on your own, and no one but you can really know what that means. So while I can mourn with you for a lost simplicity of life, and applaud your spirit and responsibility, I can’t share your burden. You carry that yourself, with grace.

  2. November 16, 2010 4:00 pm

    Amen. Well said. Thanks for linking to my post; I’m glad I (partly) inspired you to write something of your own. Talking about it and sharing how we feel doesn’t cure anything, but it does make certain aspects of this illness less lonely.

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  1. “But Diabetes is So Manageable!” « Running with Diabetes

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