As we mark the Fourth of July here in the U.S.A., we thought this would be a great time to explore the idea of freedom as it relates to our dependence on diabetes apparatus.
Admit it: As free as we can sometimes feel about the flexibility modern diabetes technology provides, our devices also serve as a constant reminder of our illness, shadowing us wherever we go. Most of us, at one time or another, have probably mused on what life would be like if we weren’t always focused on schlepping back-up D-supplies, checking our infusion sites, or wondering when something was going to break, as technology is prone to doing. Or what would it be like just to free from the routine of blood sugar testing all the time?
“Sometimes I feel my life revolves around finding the perfect moment to calibrate the CGM,” wrote Mary Fairweather Dexter, when we queried readers on our Facebook page. A familiar complaint, no?
The truth is that we PWDs are just as dependent on our diabetes meds and tools as patients were 30 years ago, and in some ways, even more so because the technology can make life more complicated. But at the same time, the newest tools have given even us more freedom and independence to lead the lives we want. A conundrum!
So even though we may be “tethered” to an insulin pump, which makes us feel dependent, we’re no longer pulled out of the action completely. “I almost never have to say, ‘No, I can’t [do whatever] because my blood sugar is out of whack,’” wrote reader Melissa Holloway, a 30-year-old type 1 PWD for the past 18 years. Her point is that D-technology — whether that’s faster meters, better (not perfect!) insulin, or insulin pumps — has helped not only to keep us in the game of life, but also to get off the bench to play with the rest of the team!
And then there’s food. There’s an area where we can talk about independence! My memory of childhood is meal planning. Just 45 carbs for breakfast, 15 for morning snack, 60 for lunch, 15 for afternoon snack, 60 for dinner and 15 for bedtime snack. Whoa, would you look at all those snacks! There’s no way I was hungry that often. Or was I? Because of my diabetes, I was dependent on all these number-counts and then sometimes had to eat when I didn’t even want to because of glucose lows.
“I have more freedom — in my own my own mind — to eat what I want, when I want and minimally think about it, because the insulin pump does the carb ratio math for me,” said Katie Clark, a type 1 PWD and mom of Ellie, also a type 1 PWD.
For anyone who lived with diabetes prior to the invention of 24-hour insulin or an insulin pump, you know what a headache living on a schedule can be. Even more so than the devices we drag around, living life according to a rigid schedule can really make you feel trapped.
“With technology, I have more freedom and I’m not tied down to a schedule of when I have to eat,” said Betty, a 70-year-old PWD who celebrates 53 years (!) with type 1 diabetes tomorrow. “Also I believe technology has extended my life. Using that NPH for 40 years was a bummer. For me it was a very unstable insulin, but we were limited to what was available. For me the 1990s were the beginning of learning to live with diabetes and not merely existing.”
Over this past weekend, our very own editor Mike Hoskins made a last-minute decision to take a pump vacation, which triggered many thoughts about the things he was usually “free” from:
“I’d planned and gone on a couple of pump hiatuses in the past two years for at least a few months, just to give myself a chance to rest and recharge from the pumping life. But I hadn’t done so recently, and so I was missing the freedom of not being connected to a medical device. The time came for a site change, and I just decided to not re-connect and see where that took me with Humalog shots…”
Mike's patriotic pump, taking a break.
It lasted for about two days, Mike says.
“There’s that freedom of not having to carefully walk around wall corners and open doors or drawers that might snag your pump tubing; having to make sure you don’t dislodge a set or sensor while in the shower; or even just adjusting what side you sleep on at night to accommodate the pump,” he said. “And then just the freedom from annoying alerts that seem to always come at you when you least want them to!”
But come Monday, Mike was back in the pumping saddle. Because really, no matter how much we might complain about our D-devices and their imperfections, they sure are better than the diabetes technology of yesteryear: urine testing, boiling syringes, and “the Guillotine” lancing devices.
For me, I started thinking about my dependence on diabetes technology the night my insulin pump broke at a family wedding in Arizona.
I’m now three months into my current pump vacation and a lot of people ask me whether or not I plan to go back to insulin pumping. I’ll admit, the thought of being physically attached to anything right now is such a turn-off. But the thing I miss most? My Bolus Wizard Calculator! As long as I’m forced to live with diabetes, I’m more than happy to be dependent on Mr. Wizard. The guy’s a genius. I’ll never get dosing down like he does.
We’ll never truly be independent from diabetes, at least not until a cure is found. But while we remain dependent on external devices, medications, and even people to help keep us alive and healthy, we have more or less gained independence from one thing: diabetes telling us what we can’t do!
Nowadays, we have folks who bike across the country, climb Mt. Everest, compete in the Olympics, sing on national television, and fly airplanes around the world. Sure, there are still some limitations to what we can do (can’t be a commercial airline pilot and we can’t join the Peace Corps), but those are rules and restrictions set by people, not diabetes. We as a community are working hard every day to break through those barriers.
The upshot is: I might be dependent on diabetes technology, but I’m independent enough to not let diabetes tell me what to do. As far as I’m concerned, the only thing I can’t do is produce insulin.
And that’s pretty freeing!
There is such a paradox when it comes to insulin pumps, whether they are truly liberating or more burdensome. Since starting on mine six years ago, I’ve never stopped, so I probably can’t give an honest answer (though changing infusion set types and using new sites was freeing in itself!). One thing though that we do, perhaps incorrectly (and I’m guilty of it myself) is call the tubing a “tether”. To me, a tether is something that restricts movement. It’s a leash that keeps a dog from running away, or a chain that holds patio furniture down in the wake of a storm. An insulin pump is none of those things. If anything, the tubing keeps my pump tethered to ME! (Which is why I’m afraid to try an Omnipod and lose a PDM). But there is something to be said for taking a break from technology and going back to a simpler time — sometimes I look back to my life in the 80s and 90s when my diabetes didn’t command as much attention as it does now – it never beeped at me and was not “present” between mealtimes. But maybe it’s not that it didn’t need attention, maybe I just didn’t give it the attention it needed.
Your comments are right on! However, the greater challenges come they they fail or stop working. What is the backup plan and how fast can one receive a working replacement….blood glucose meter, an insulin pump, a CGM and any combination from the list. Yes companies have 24/7 phone lines for help. However, when can we expect to receive a replacement. Traveling away from home can get really messy.
Yes, they can all work for a majority of time and am thankful that we have them. This needs fixing. as always have a great day.
Dan