Just one breath in a chain of thought

18 May

Click for the What They Should Know – Friday 5/18  Link List.
Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

Open letter to the uninitiated:

I’ll start by saying there aren’t enough words to sum up what you need to know.

I’d say walk a mile in my special diabetes socks, but I don’t wear them! Hell, I hate socks. I wear flip flops from May to September, and I know that there are people out there that think this is a terrible idea. To that I say I also eat cake, so sue me. Before you judge, educate yourself. As a so called healthy person you wear whatever silly shoes you want and probably consume your fair share of carbohydrates (FYI that’s what matters in Diabetes not SUGAR), and somehow because you haven’t been invited to our club it is totally okay. Actually, I’m pretty sure that anyone would say good health is about balance. So, do I eat a loaf a bread a day or eat from a can of frosting (I know someone who is perfectly healthy and thin who does this regularly)? No, I actually don’t even like bread and I always scrape my icing off. But sometimes I really want a friggin’ panini and I too have birthdays. So if it’s the right choice for my health and I’m willing to take the time to think about how it will impact my diabetes management, I’ll have the Chipotle Chicken from Panera or yellow cake with just a tad of chocolate icing. Enough with the humor though, although that’s a necessity when you live with Type 1 Diabetes, or any chronic disease.

You couldn’t know what this disease does to the body or the mind, until you’ve lived it.

So think about this:
I was 10 years old when I hit the point that I’d been living with it longer than I’d ever lived without Type I Diabetes. What were you doing when you were 10? If you aren’t a part of this great and terrible club I can bet you probably were not afraid to go to sleepovers and you weren’t being walked to the nurses office because your blood sugar was too low to go alone or being called “fruit roll up girl” because snacks weren’t something to look forward to but were more of a prescription dictated by insulin.
Have you ever been 20 years old and wondered when the 15 year streak of good luck will stop and the complications will kick in from all those years where so called good control seemed impossible?  Do you worry that everyday is a step closer to vision loss or kidney failure? I bet you had fun in college. Thirsty Thursday? Never happened for me. Not just because I’m underage or because you can’t consume alcohol when you have Type 1 Diabetes (it’s possible, like everything else it just requires balance and planning). It’s because the very few times I’ve stepped out on that ledge have been the scariest experience of my life with Diabetes. For me it’s not worth it, but it doesn’t mean it doesn’t hurt that I’m the decidedly sober friend who doesn’t get invited to parties much. I crave the idea of a normal college night, but I’ll never have it. I hate that I’m 20 years old and content with my life, but painfully aware that the second biological clock of Diabetes makes me doubt if I’ll find a man to marry in time to fulfill my dream of being a mother or will diabetes take that from me too. Tick tock.

This disease is a game with no rules, a minefield, and it is so psychological. It’s quiet, but it’s there. We are constantly trying to figure out which choices to make, what risks are worthwhile. What basal rate? What other medications? How to incorporate exercise, alcohol, special foods… But none of us are experts, so we try to stay calm and work through the situation knowing full well it could all just blow up in our faces.

So before you tell someone not to eat that or to put on special shoes, think about it for a second because I think you’d occasionally want some cake if you lived this way. I’m not asking for a spotlight, special treatment or sympathy, just thoughtfulness.

Never Know – Jack Johnson

One Response to “Just one breath in a chain of thought”

  1. Pearlsa N. B. (@adjoa) May 18, 2012 at 12:46 pm #

    Great post!

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