Diabetes demands a certain do-it-yourself (DIY) approach to treatment, which places much of the responsibility for care in the hands of the affected person. After a week in the hospital at sixteen years old (was it only a week?) it’s been multiple daily insulin injections, blood sugar monitoring and planning around food.
This sort of DIY treatment is difficult because the burden is squarely on the shoulders of the person with diabetes. In terms of the day-to-day aspects of diabetes management, the responsibility shifts from the medical system to the affected person.
The DIY approach to diabetes care is not something that is chosen. It requires a daily consideration of insulin dosages, figuring out how your body will react to certain foods and how exercise and your job will affect blood sugar levels, among other things.
The fact is that high blood sugars or a high Hemoglobin A1c result do not necessarily mean that the person with diabetes has not attempted to follow a particular regimen, even though a physician or others may blame the patient for exactly that. There are many factors that affect blood sugar levels. Hormones and stress, for example, may increase or decrease blood sugar, depending upon the individual. Blaming the patient is particularly damaging in the context of a DIY treatment, especially when assumptions are made about a condition that is still misunderstood and not easily predictable.
Trial and Error
Ultimately, it is the person with diabetes who shoulders the responsibility for directing his or her treatment. Physicians, dieticians or other medical professionals may offer advice based on their education and experience, but a person with diabetes often learns by trial and error what works and what doesn’t for his or her own body. Certainly an endocrinologist may recognize trends in blood sugar levels and suggest solutions such as insulin adjustments, but practical solutions are often arrived at through experience. What I learned about the day-to-day reality of it from attending a diabetes support group--meeting other people living with it--as opposed to the conventional medical prescription, was invaluable.
Well, it’s not the Bayeux Tapestry, is it?
Apparently the part of the pancreas that produces insulin is about as big as the tip of your smallest finger. How could something so small have such a huge physiological effect? How could some tiny part of this important digestive organ—the pancreas—be responsible for so much?
If you add up the years people with diabetes spend treating it and the possible complications that may result, it becomes clear that diabetes isn’t just some minor bug that’s been cured. It demands attention even at the most inopportune times and can get serious very rapidly.
I have learned by experience, however, to figure out in my head how various food groups will react. Sometimes, I admit, I
get it wrong, but experience is a good teacher. Adjusting insulin and food is a fine art. It's tricky to account for all the variables. As an instructor, I develop lesson plans. Sometimes the lesson goes as planned and is a success. Other times the same lesson is derailed or bombs. Adapting to this ever-changing reality is what DIY is all about.
Sure it's true that in a perfect world one should eat from all food groups and have a balanced diet, which includes protein, starch (carbs), milk, fruits & vegetables and fat, not to mention all the minerals and vitamins a body needs to live. All food eventually breaks down into glucose and fat, with simple sugars the quickest to push up a blood sugar and fats the slowest. I try to focus on the carb content, because it’s a more accurate measure of what I’m eating.
What's your type?
I remember sitting in biology class before my diagnosis, when I was about fourteen years old. The biology teacher wanted us to prick our fingers to see what blood type each of us was. Everyone in the class found out their blood types, but not me; I had an unnatural aversion to having my finger poked with a sharp object even before I had diabetes. I still don't know my blood type.
But I know what type of diabetes I have. Type 1 diabetes!! Not type 2!! People with T1D often get lumped in with T2D. Some T1Ds are misdiagnosed with T2D. It’s complicated. Most people don't care to know or ask and call you "diabetic" anyway. Diabetes is diabetes.
What I didn't know at the time is that I would have to learn to poke my fingers many times to monitor my blood sugar after diagnosis at sixteen and before CGMs changed the game. For me that meant decades of finger pokes, which was the only way at the time to know what my blood sugar was at. The CGM means I get to thankfully give my fingers a rest. Most of the time I already know just by feeling, but it's always good to be sure. Check and monitor again.
I started with two insulin injections a day and a blood sugar monitor machine. Now I give multiple daily injections of short-acting insulin to deal with the food I eat. I also give one long-acting insulin injection before bed, which works for the most part. I also use a CGM to monitor my blood sugar at any time. Right now I'm 7.7 mmol/litre. If it sounds like chemistry class, it is. Or maybe biology class. I try to stay within the magical range of 4 to 8, though highs and lows happen.
At this point in time, that's the system that works for me.
Scene 43 Bayeux Tapestry - The warriors having a banquet! Note the guy on the left appears to be checking his blood sugar.
Thank you for reading!