I participated in another thread today about the external world’s perception of our “obsessive” diabetes habits contrasted with the reality that we who actually live all day, every day with diabetes, experience in our world.
Layered on top of what most people would consider a full life of family, work and attention to typical physical health issues is a whole other dense, demanding, and fastidious requirements that diabetes ceaselessly exacts.
My diabetes day
The first thing I think about in the morning is my diabetes. What’s my number? Do I need to add insulin or glucose? Did I take any overnight insulin corrections and what effect, if any, is still in play. What and when will I eat breakfast. How much insulin will that require? How much pre-bolus time will be optimal? What was my glucose experience the last time I ate that breakfast? How old is my insulin infusion site? Is it getting stale? How do I feel? Does my perception of well-being square up with my glucose measurements?
I’ll then assess my intended schedule for the day and verify that my diabetes “kit” contains everything I might need while away from home. Do I have enough test strips, insulin, extra infusion sets, insulin cartridges, a spare CGM sensor, and the all-important emergency glucose tablets? Did I forget to bring my CGM receiver with me and leave me blind to the dynamic glucose trace that can often move in unexpected ways?
Diabetes supply manager - a thankless task
Some days (more than I care to think about) I must put on my diabetes supplies manager hat and figure out which supplies I need to replenish. I wish it were just a matter of putting in an Amazon order and then things show up in 48 hours. Instead we must negotiate with the doctor’s office regarding an appropriate prescription order, deal with the supplier and often the pharmacy benefit manager.
For me, it is the rare supply order that doesn’t hit some kind of snag. When an order stalls, the party failing to act often does not raise an alarm. The process simply stops. You are required to get on the phone, spend an irritating session negotiating the phone menu system trying to simply get a responsive human being to answer a supply status question.
Since there are more than two parties to this transaction, when the process breaks down, the accountability finger-pointing proceeds in a circular fashion, delaying identification of where the snag exists and who must step up to fix it. Of course, no one else, neither doctor, nor supplier, nor pharmacist, nor pharmacy benefit manager suffers the consequence like the person with skin in the game. If you don’t manage the needed supplies before they run out then an additional layer of crisis and emergency get injected into an already distressing and frustrating mix.
Attention to survival
Every day contains events that absolutely require knowing your glucose status before proceeding. Fingersticking before driving is one such event. You need to examine and analyze your blood glucose status before exercise and develop and execute a plan that requires customization each and every time.
You need to think about what you’re going to eat and when. Then develop a plan to answer those needs. The plan must include insulin dose size and timing. Insulin dose size is influenced by the carb, protein, and fat content of the meal, current glucose trends, and your last glucose experience with that meal. You have to take into account whether you are coming down with a cold or you notice some developing insulin resistance.
You don’t have to pay attention
You are free, however, to ignore this level of attention and “fly blind.” Uncontrolled diabetes, however, is chaotic, unhealthy, and seriously degrades quality of life. Playing it by ear and improvising often sets the stage for a metabolic disaster.
This entire “daily diabetes script” is not visible to coworkers, friends, and other outsiders. They often see diabetes management in terms of simply taking an insulin shot before eating. They’re not likely to understand the stressful dynamic that can take place after you’ve delivered and timed your meal insulin dose and your restaurant meal gets delayed. To them it’s just an irritation and inconvenience, not a metabolic crisis!
The perceived important issue for most outsiders is our having to dose insulin with a needle. I wish that were my biggest challenge. Injecting insulin is the easiest thing I do to treat diabetes!
Every meal and snack requires deliberate and appropriate decisions and action. Get distracted by the 101 other things that life can throw at you and you can miss delivering your insulin far enough in advance to give your metabolism a reasonable chance to match you post-meal glucose absorption curve.
Falling asleep - no time to let your guard down
Even going to bed at night requires analysis and planning. Is my glucose level safe enough to fall asleep? Did my exercise (or lack thereof) having any influence on my metabolism? Do I need a precautionary snack before retiring or is doing so a threat to driving my overnight glucose to the high side? What have my overnight BG trends been recently?
As people with diabetes, we don’t necessarily want to take a deep conversational dive into diabetes management with our social peers. We just want it to remain in the background and behave itself.
No one can get it right every time
Good diabetes management doesn’t just happen. It requires forethought, analysis, continuous execution, patience, and persistence. If your plan is ill-conceived or incompletely executed, diabetes will make its dissatisfaction known. No one can get it right every time and we make dozens of consequential decisions every day.
The questions I’ve raised here are just the tip of the iceberg and there are actually many more that demand that we think about them. And this is just one day of the 12,837 days that I’ve lived with diabetes so far!