Don’t let anyone kid you. Living with a chronic disease is serious. And also a serious pain in the you know what. There is no cure, at least not in 2013, just the day-after-day persistence of the disease that wears on you. I was diagnosed with Type 2 diabetes 20 years ago, likely had it longer than that, and I now have insulin cell burnout, meaning I now need insulin to survive.
In those 20 years, the “experts” handed me long lists of things I “have” to do every day to maximize the chances of avoiding potential long-term health disasters: amputation from foot nerve damage, blindness from retina damage, gastroparesis from stomach nerve damage, and potential early death from kidney and heart damage. This a list of things I “have” to do — not to eliminate the hazard, to just lower the chance. There is lots of effort but no guarantees.
What have I learned? That if you talk to 10 different experts, you’ll get 20 different answers. There are commonalities: exercise more, eat carefully, record everything. But the devil is in the details; what exactly is “the best” diabetic healthy diet/food/lifestyle?
Check blood glucose readings frequently. Track the stick sites where you poke yourself for those glucose readings so you don’t overuse any particular site and end up causing damage. Track your insulin dosages. For me, that means at least four times per day for each of these.
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Track what I eat, when I eat, how much I eat and what I’m feeling when I eat it. Track activity, not just formal “exercise,” because it all affects blood glucose. Track emotional changes during the day — because anger, fear, worry, joy all affect blood sugars, as does the way I deal with those moods.
Perhaps I’m a bit cynical. But maybe it’s just realistic, because there is no way for anyone to keep track of absolutely everything, all the time, every day. I’m not doing it all now and may pay for it eventually. I’m OK with that. I get back on the wagon and pick up where I left off.
What else have I learned? To be my own advocate, do my homework, take no one person’s word as final, and make my own decisions by leading my health care team.
I’m conducting a lifelong experiment on what works best — for me. What works best now may not be my best practice next year as new studies on “best practices,” new medications and new equipment come out.
Anyone telling you that dealing with diabetes is easy or simple doesn’t have diabetes. There are too many factors that have significant impact on blood glucose. But living well with diabetes can be done.
I am my best health advocate. I do my homework. I take it one step at a time. The point of managing diabetes is not simply to live longer, but to enjoy the trip.