Late last week, I came across a post by a kindred type 1 spirit talking about her recent travel spree that has left her with — for her — an undesirable A1c level. While reading her musings on how this happened and what she can do about it, I found myself nodding my head and relating to her struggles dealing with the intersection of “real life” and “diabetes life.”
Even after 18 years of living with diabetes, I still find myself struggling to incorporate diabetes into my “real life,” especially when that life gets really busy — like during the holiday season. This is something I personally find kind of strange, because you would think that growing up with a disease means everything about it would be second nature by now… that it would be easy and natural to test 
your blood sugar eight times a day, count carbs in everything you eat, exercise regularly, and always remember to leave the house with back-up supplies or at the very least, remember to check that you have enough insulin in your pump to last the whole day.
Except, I don’t. I forget — a lot. Well, maybe not a lot, but more than I should.
It’s not that I don’t know what I’m doing or I don’t have the right supplies or technology or know-how to do any of this crap. In fact, I think that’s what makes it so irritating and frustrating. I think that’s where the little devil on my shoulder gets the nerve to say, “You know, Allison, if you can’t figure this out after 18 years, I really don’t see any hope for you.”
Maybe I’m just destined to fail.
Which is bullcrap, if you ask me. No one is destined to fail at diabetes, but one thing I’ve learned (and continue to learn) is that diabetes is never, ever something you can put on autopilot.
It could just be me, but the things we are required to do in “diabetes life” flies in the face of human nature. People don’t like to do uncomfortable things. That’s why so many people avoid the doctor. That’s why so many people just wait it out. That’s why so many people want an easy solution. No one likes to do things that are painful, annoying, cumbersome, hard, frustrating, and unpredictable.
Which, if you look in the dictionary, is the definition of diabetes, right after “(n) a polygenic disease characterized by abnormally high glucose levels in the blood; any of several metabolic disorders marked by excessive urination and persistent thirst.”
After 18 years, I’m still trying to figure out why I don’t always do what I’m supposed to do, or why I insist on trying to take shortcuts that never work, or why I always believe that I can just figure things out later. I try to not get down on myself and think that I’m a “bad” diabetic, but it’s hard not to feel that way, especially when surrounded by people who seem to have better self-control, more internal motivation, and / or naturally better blood sugars.
Another thing I have learned is that you can’t wait for “real life” to slow down so you can get your “diabetes life” up to speed. It won’t happen. The crazy life does not stop once the Christmas tree has been taken down. Whether it’s work or family or friends or travel or some other kind of drama, there is always going to be something that seems more important that you need to attend to. And it’s really easy to think that we can just “get by” until it passes. But that’s when the damage starts to happen, because that’s when habits start to form and they are terribly difficult to reverse.
I see this happening not only in diabetes, but in a lot of other aspects of my life. Although I lost quite a bit of weight earlier this year, I’ve gained some of it back during a busy traveling season this summer and then living in a hotel for two months after being evacuated from my apartment building due to flooding (don’t worry, the apartment is fine now). Both of those things led to eating out a lot. Did I have to gain weight? No, of course not. But it was so much easier to say, “Well, I’ll just get back on track once I’m not traveling / back in my apartment / not as stressed.” But now that I’m not traveling or living in a hotel, it’s the holidays! And once the holidays are over, things might temporarily calm down… until my busy travel season starts up again!
It’s a vicious cycle and it’s one that I’m never getting off because, well… you can’t take a vacation from diabetes and you can’t take a vacation from life, either. Even vacations can be stressful when you have diabetes!
The best New Year’s Resolution I can make for myself this year is to stop waiting for life to calm down and give diabetes the priority it deserves.
But, you know, starting today. Not in three weeks.
AMEN Sister! I feel you on this! I have been diabetic for 35 yrs. and still get “off track” when I am out of my routine. I even struggle when I am off of work because I sleep later, eat at different times and forget to take the pills prescribed on top of the insulin. Thank goodness my pump is attached or I might forget that too sometimes! It’s a struggle to find some kind of balance between living life and maintaining decent control. One day at a time is all I think we can expect and know that none of us are perfect!
procrastination – my middle name! at least until recently! i am really trying to make a concious effort to put me and my diabetes first. for many years, we (D and me) have always come second. second to my family, to my home, to my work. and then one day (probably shortly after triple bypass surgery) it hit me. if i don’t start putting me first, i won’t be around to look after my family, my home or to do the work i enjoy. so there you have it.
You would think it would be second nature huh!??! So bizaare.
What appears to be procrastination is actually the result of trying to fit all the things we should “just do” into 24 hours. The list of things we are told we should “just do” grows ever longer, yet as diabetics we don’t “just do” even the most mundane things, like eat and sleep, work, etc. Complicating this is the invisible nature of the disease and our learned ability to cope with difficulties, in an apparently effortless manner,while concurrently managing to fix or avoid hypo/hyperglycemia. This often results in others expecting us to solve their problems as well [we're so good at that sort of thing] and resenting when we take care of ourselves rather than them. In a mere 24 hours, we do not have time for the combined guilt of not maintaining perfect control of our lives and not meeting their needs and expectations.
Procrastinations are not only Diabetes related. For me it was fear related. Had a tooth that was hurting me. I took pain meds to help with the pain. I ate on one side of my mouth, because I did not want it to hurt. I ran every fear through my brain about what the Dentist would do to fix it. Would it be an extraction, a root canal…. fear fear fear. For months I did this. I put everything else possible in front of just going to see the Dentist.
Finally I made the call for the appointment. And with minutes the tooth was filled and I have no pain. Fear makes me PROCRATINATE.
As an outsider, I see friends and family cope with their diabetes as an additional “life” beyond the ordinary hassles of daily living. It is like watching someone play two chess matches, one that everyone plays, and another that is only for you called diabetes. One is tough enough, but an equally unpredictable challenge that is life-threatening is beyond my ken. The fact that you have managed it for over 18 years is a triumph. Take heart.
Thank you so much for that analogy, Carmen! I’d say you hit the nail right on the head. We with diabetes all know we’re juggling for dear life, but there’s something extra heartening (to me, at least) about an “outsider” understanding that so well.
I’ve been pumping for 5 1/2 years now. And in the past month, I’ve run my pump “dry” of insulin TWICE. Life just gets in the way sometimes. And it’s hard enough to juggle life, let alone adding a chronic illness into the mess. :/
Same thing with all of my travel this year (and all my, “I’ll get back on track when….”).
Yes to all of this…My work (classical violin performance, on stage and in rehearsal or teaching classes daily; seven day weeks are the norm) does not permit diabetes breaks or “excuse me’s” much less onstage hypoglycemia or high-induced fatigue. Since my professional life is kind of a high-wire act I actually don’t forget stuff very often. Keeping the stakes high seems to help with that
BUT, here’s what I seem to have done to myself after two years with my Dexcom…I’ve slowly let my average daily running-around-working BGs rise into the safe and easy 140-150 zone, rather than in that hypervigilant 90-110 zone. And, what do you know, my A1C has risen accordingly and I’m up near 7. Not OK, and I pretty much did it on purpose! Arrgh. Trying to turn it around now during ultra-busy season. Two chess games, indeed. Thanks for writing about this stuff, it helps.
I know exactly what you mean. I’m a substitute teacher during the day/actor at night, currently rehearsing one show while performing another. I try to keep my levels in that sweet spot or my brain just doesn’t work.
Thanks so much for writing this, Allison. I’ve had type 1 for 34 years, and still find myself out without backup insulin, glucotabs, test strips fairly often. I’m glad it’s not just me!