There are many rules to keeping diabetes “well managed.” When I was diagnosed many years ago, I was told of the food allotments, the glucose checks, the exercise requirements, carbohydrate limitations, etc. There were many restrictions, and yet, the doctors told me I could live a “normal” life. As normal a life as anyone else in the world, so long as I followed the accompanying list. I shake my head and smile as I wonder, “What does that even mean?”
In the past 15 years of having diabetes as a part of my life, like an annoying companion, I have made compromises to these listed rules. Here is my honest list of things I am not “supposed” to do, but find myself doing anyway. I know the basic reasons for each rule, will admit to my many excuses for not following them, and share my “livable” adjustments.
1. I understand we are not supposed to mix containers of glucose strips due to expiration dates because mixing the strips may wind up with my using an old strip at some point. But, it’s cumbersome to carry around a container for that last one or two strips for the rest of the day, in addition to the container holding 25 new strips. I attest that I have mixed glucose strips in almost empty vials. My compromise is to be sure to empty a container completely at least once per month.
2. I understand we are not supposed to use the same needle for more than one injection due to risk of infection and loss of puncture effect. When I’m injecting more than 20 times per day, it’s frankly annoying to have to switch out the needles on my insulin pens. I attest that I have used the same needle more than a hundred times. During my burnout phases, I would use the same needle until I had to press down hard on it for it to go through my skin, resulting in a multi-colored bruise. My compromise is to switch out the needle at least once per insulin pen.
3. I can’t recall the last time I changed my lancet. That’s all.
4. I understand we must eat a balanced diet. Our bodies are tired and a healthy diet of all the major food groups will help support our health. But, there are just so many food groups! (I’m only partially joking with that statement.) I admit that I have spent a day here and there living off the caffeine in my coffee, vegetables, and fruits with zero grains. I am on the go almost constantly, so I cut up fruits and vegetables and keep them on the shelf in the refrigerator that is closest to my eye level. My family eats nearly every food group, but I’m still in the phase where I need to assist my children with eating their meals. Once per week, I force myself to sit down and eat a full dinner with all the fixings.
5. Using an alcohol swab to clean the finger prior to glucose testing, as well as for cleaning the injection site, is meant to sterilize and help avoid infection. I just wash my hands. Sometimes I even inject through a thin pair of pants into my thigh, which is my favored site. Hey, at least I’m washing my hands first.
6. We’re supposed to keep our feet warm. I know I will regret my actions in the future, but I hate the feeling of socks. I hate that I can’t walk across my hardwood floors without slipping or that they make my shoes feel tighter. Can wearing socks make you feel claustrophobic? I use blankets at the end of my bed, as well as my husband’s warmer feet to defrost. (The poor guy.)
7. We are supposed to keep the insulin vials refrigerated, or in a stable temperature environment, else it may lose some of its potency. I keep my insulin in my glucometer case, in my purse. I use enough fast-acting insulin to go through the entire pen within days. No matter where I store the insulin, I doubt it will have enough time to lose potency at the rate that I use it up.
8. Rotating injection sites is also on that list. It reduces scar tissue, maintains absorption rates, and potentially avoids most bruising. I really do rotate injection sites, but not nearly as thoroughly as I probably should. I favor injecting into my thighs. I switch legs or move in inches around my thighs to help keep the sites fresh. When my glucose readings stop reflecting the numbers I expect to see after meals and injections, I rotate injection sites to my back, arms and upper buttock. But, I only do the proposed rotation when I see a problem with my readings.
9. We are recommended to get eight hours of sleep per day. This sleep must also include plenty of REM, which means it must be in longer stretches than two to four hour increments. I attest that I have two infant children. Wait, I meant to say that I declare I do not get enough sleep. My youngest is turning one year old in November, so I know I will have ample opportunity to get some decent rest soon enough. In the meantime, I eat healthfully, exercise in some form daily, and take iron supplements to keep my blood fresh and moving. I know these concessions aren’t enough in the long haul, but it’s the best I can offer myself for now.
10. I understand we are recommended to inject fast-acting insulin 30 minutes to an hour before eating a meal. This gives the insulin time to start working prior to consuming carbohydrates that our body must break down. I admit that I inject during and sometimes after my meal is finished. I can’t guarantee how much food I will eat at every meal. Sometimes I am distracted, exhausted, or don’t like the food I have served. (I will never admit that last bit again: I am a divine chef) Thanks to Apidra, my postprandials don’t suffer much with this accommodation, due to how quickly it reacts.
11. We are asked to keep a glucose log of all of our readings so we can better understand cause and effect of the activities we do each day. It’s just so tedious! I don’t ever write my readings down, but keep a mental score of how I’m doing. I know this isn’t a valid compromise. The best I can do is write a log based on the readings stored in my meter prior to seeing my endocrinologist. I’m probably a horrible patient to work with because I do my own adjustments and am very involved with my diabetes management plans. The only times I’ve kept a decent log with notes was when I was pregnant, newly diagnosed, or seriously struggling and needing doctor aide to help me solve a problem.
12. This one is an extra-credit admission: For about 10 years of my life with diabetes, my A1c hovered between 7.0% and 9.0%. I didn’t have all the tools I needed, was neglecting my health, in denial, and honestly didn’t have the insight to fully understand how to manage my disease. My most recent test showed a 7.8%. It’s not anywhere close to where I was just one year ago, and needs some serious improvement. But, though it’s a direct reflection of how I’m managing my health and all of the stresses being thrown my way this past year, I am thrilled that it’s not higher. I know I will gain better control very soon, as my children grow just a bit older and don’t depend on me as much. (That felt like a confession to the pope)
Though this list is honest, it’s also very light-hearted. I’m admitting that I do not follow all of the rules we are handed at the onslaught of our diseases. I’m hoping to open up the floor. I’d like to get the conversations going about what it is that you do to make the diabetes rules more accommodating to your personal life and preferences.
Diabetes is mainly about control; control over every aspect of your life: food, stress, emotions, exercise. Sometimes, the pressure to be numerically perfect can drive a diabetic insane. We don’t have to be completely perfect to be basically successful.
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, and CGM and pump failures, leading to insulin therapy via MDI using Levemir and Apidra, and sometimes metformin. She is the author of two diabetes related novels: “Wretched (this is my sorry)” and “Deathly Sweet.”