Wednesday, May 23, 2012

You make diabetes look easy

This Monday, I held a lecture on my life with diabetes. The audience was very attentive and they were so interested in learning more about this chronic disease that is affecting so many of us. For two hours in a row, we talked about diabetes and the consequences. At the end of the lecture, a lady came to me and said: I thought diabetes was serious business. But hearing you talk about it, changed my point of view. You look happy and cheerful and I like your positive attitude. So maybe diabetes isn't that serious after all?

Do I make diabetes look easy? Is that what my lectures teach people? Because that is not my intention at all. I don't want to make diabetes look easy and trivial. I want to tell about how it affects my life. I inform people on what the symptoms are. I explain to them the difference between high and low blood glucose. They hear what fluctuations do to you. I tell them about the effect of having diabetes 24/7. That you can never take a day off. Because if you do so, you will end up seriously sick by the end of the day. I tell them that every day is a struggle of keeping your numbers within range, dealing with highs and lows, counting carbs and interpreting numbers. It's hard work, you know. It takes a lot of effort and energy to make things work. I wouldn't feel that well if I didn't work that hard..

Since I have traded my insulin pens for an insulin pump, the people around me no longer see me inject insulin. They see me poke my fingers and use my glucometer. But the bluetooth function activates my pump, delivering the insulin I need. It's no longer that confrontational as seeing me inject insulin in my tummy, I guess. My pump is hidden underneath my clothes, making me look pretty much non-diabetic, I assume. But things are still the same.
There's a lot of planning to do, if you have diabetes. Like my D-friend experienced last week: you get in trouble if you go out for a long walk and you are not organized the way you are used to. There are so many things to think about: extra pump supplies (infusion sets, inserting device, batteries), glucose tablets or hypofit, snacks, drinks, .. It requires planning. You can't just leave the house without planning. There are no shops in the middle of nature, to go buy jelly beans if your blood glucose is too low. You can't find a bottle of water to quench that thirst a high gives you, if you are in the middle of nowhere. Most of the time, the people around us are not aware of the organization skills diabetics need. It must be awful if organization is not your strongest point.

At home, you don't always nag about the dreadful feeling a low blood glucose gives you. You just deal with it. Most of the time, bystanders don't even notice the intake of fast acting sugars. Because you do not want to draw the attention. You don't want to hold up the crowd or spoil the fun. You just do it and you go on. You try to focus on the conversation you are having with your co-workers, but all you want to do is take a nap, for that hyper wore you out.. But you force your eyes to stay awake and you drink more water to get rid of that awful feeling in your dry throat.
You don't get sick leave if you need to rush to the hospital to get your supplies or meet with your diabetes nurse. You take the day off.. Not to enjoy a day at the beach, but to spend hours in doctor's cabinets. You don't complain about it, because there's no other way.
Going to a job interview may lower your BG. A fierce dispute at home can skyrocket your numbers. Nobody but you can tell what's going on in your body at that moment. Because they can't see.. it's not visible on the outside. It is your diabetes, your problem. So you deal with it... Does that make the diabetes look easy? Well, it's not easy. Even if that's the impression people get.

Poking your fingers 8 times a day or cleaning up a fountain of blood after that infusion site was inserted poorly, is no fun. Do you cry over it? No you don't. You clean up the mess, you rub your fingers and you move on. There's no use crying over it, since it's chronic. Forever. And it's your disease. Forever. But it's not easy. It just isn't.

3 comments:

suizou said...

Amen sister!!

Anonymous said...

just coming across this post, I loved it! I'm type 2 and uninsured trying to deal with testing 4-5 times a day. If you're ever looking to save on strips though, I found a great site that has a program for us uninsured folks....www.steps-to-success.org

Thanks and keep writing great posts! love your blog :-)

Sarah

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