low monologuing – jamie’s story on type 1 diabetes

A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

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