When I was diagnosed with type 1, doctors told me I needed to count my carbohydrates, weigh my food, test my glucose several times per day, keto test my urine daily, alcohol swab, rotate sites, log my numbers, exercise, (but don’t exercise too hard!), monitor my feet, check with my doctor before changing my settings, etc.
They basically told me to calculate my life. Then, they turned around and said to be happy and satisfied. They said I could be independent and normal. But, with the list of things I had to do on a daily basis, how could I?
The past 15 years, I’ve been learning to find a balance between what doctors told me I needed to do, and the concessions I could make for myself to keep my head from spinning. My father once said living with diabetes must be like a clock ticking in the back of my mind–it’s always there and can’t be ignored.
The ticking clock was driving me as nuts as Edgar Allan Poe’s elusive heart beats, so I reached out and shared experiences with other diabetics. Then, I learned what rules had room to give me a much needed break.
There were times when I was so focused on my diabetes care that I lost focus on all other aspects of my life. For example, when I had a CGM, I became obsessive about it, checking every half hour or more often, gearing me toward overcorrecting and unnecessary stress over the slightest, completely normal fluctuation in the readings.
My life with the CGM actually stressed me to the point of raising my A1c by 2%.This disease is a full-time job, if you do it perfectly. But, in addition to this full time job, I also had a career, life ambitions, and relationships to tend to. It was an intense struggle and I was completely exhausted.
As I loosened the reins of diabetes, the quality of my life increased. For example, I discovered if I cut down my carbohydrate intake, I had to correct less often, had smaller fluctuations, and after the first week of carbo-detoxing, had more energy.
But, some diabetics said I needed to cut out carbohydrates completely, including the 1/2 teaspoon of brown sugar in my morning coffee. Others said the consumption of carbohydrates was an essential part of the human diet and that I was hurting my health by taking this dietary step. Still others said “Right on, Katherine. You’ve got it.”
In middle school, we were taught the difference between a guess and an educated guess. One is an answer given based on no evidence. The other is a response given based on several supporting facts, but not yet proven. The final answer is, of course, just to be right. But, since everybody handles diseases and diets differently, we won’t find out who’s “right” until… well, we die. I researched, weighed the options, worked with doctors, and I decided to listen to myself.
There are masses of diabetics on either side of this spectrum with some in between. Some make diabetes a focus of their lives in order to keep things in control. Others are relaxed about the whole notion of the disease, thinking they’ll worry about it when they “need to.”
I’ve met diabetics on both sides of the spectrum and have learned I am in the middle of chronic control and raring fire alarms. I worry and sometimes panic over the smallest things, like a cut on my foot. But, I also don’t go into a meltdown when I see a 300 reading on my meter; I just fix it and move on. I am always trying to better my care, while also making it easier to have diabetes in my life, like a conjoined twin with a mind of its own.
Diabetics tend to rally on either side, with signs held high, each declaring they have figured out the “right” way to live with the disease and that if you don’t agree with them, you’re crazy and stupid. You can either live a miserable calculated life, or die a prolonged agonizing death. There has got to be something in between. The journey of life is a marathon, after all.
Back when Paula Dean was diagnosed with type 2, the diabetic community went into an uproar that she wasn’t changing her recipes to accommodate her fellow sugar challenged peers. After months with millions of people attacking her character and boycotting her employer, she was threatened with the loss of her job. She had spent a lifetime making lavish meals and desserts (admittedly to the extreme) but that’s what got her popularity from the start and her recipes weren’t meant to be eaten on a daily basis. She was extravagant and decorated; a complete Southern Belle.
Then, upon her devastating diagnosis, she was pushed by every single person around her to change her life. Now, not only was she afraid for her life with a disease that doesn’t quit, but she also couldn’t do her job the way she loved to. The world forced Ms Dean to allow diabetes to change every aspect of her life. We tout that you can be normal with this disease, but we crucify anyone who tries to do it.
I don’t mean to make this article a debate about Paula Dean. It’s just an example of how judgmental we can be sometimes. I could be wrong. I could be oblivious about everything. But, I’m healthy and happy right now; I’m educated on my ailments, am careful to an extent, and that’s okay with me.
It is not irresponsible to live your life. That’s the whole point of taking insulin: to live. But, in the diabetic community, everyone makes their own concessions. We all treat our diseases differently. Some need to put it front and center in their lives just to make it to the next day. Others find a balance between immediate attention and chronic control. But, as Eleanor Roosevelt said, “The purpose of life is to live it.”
I think the key is to share experiences, and try your best not to compare them. We are more than diabetics. We are human beings with interests, failures, successes, love, and inspiring moments. We are all doing our best to be alive. Just be at peace with your choices and live a good life. I’m not striving to be perfect, I just want to remain happy.
Katherine Marple was diagnosed with type 1 diabetes at age 14 in 1998. She is the mother of two small children, has battled insulin resistance, Pre-eclampsia, CGM and pump failures, leading to insulin therapy via MDI using Levemir, Apidra, and sometimes metformin. She is the author of two diabetes related novels: “Wretched (this is my sorry)” and “Deathly Sweet.”