Day 2 of guest post week is Scott Johnson. He is a great person to know if you don’t know him already. If you are not following him on Twitter already, then please follow him right now.
I recently wrote a blog post (“Screw It! I’ll Just Eat The Rest”) about not wanting to finish my dinner. My brain almost imploded when I tried to think about my insulin and how it would affect me if I stopped eating. So naturally, I posted about it!
I think it’s important to talk about those sorts of situations because it gives those around us a glimpse of how difficult food can be for us. While food is only a small part of our daily life with diabetes, it seems to take up more energy than it should. At least that is how it seems to me.
I got so many wonderful comments from that post (thank you!), but there was one that hit me and stuck in my head.
“What I am wrestling with now is balancing resignation with resolve to keep trying and working on it. I think that the key is to try and keep figuring out how to tolerate all these diabetes difficulties which you describe so well. I pray for strength and resilience because most of it can’t be ‘fixed’, just tolerated.”
Thank you Barabara, for such a great comment. That is something I wrestle with all the time! It’s really a tough thing! There is very little positive reinforcement with our diabetes management. Think about it! If we do well enough, the encouragement we get is lack of negative consequences! That is not the same thing as positive encouragement.
The amount of work it takes to maintain anything close to normal is mind-blowing. Many of us try so very hard, but still struggle more often than not. The messages we receive when we’re not doing so well are all negative. Those messages come from many places (including our own heads!), and often get skewed by our huge load of guilt (why do we feel so guilty?).
I am all too familiar with the “resignation” that Barbara talks about. It usually comes to me in one of two ways. One is after I’ve tried SO HARD and still can’t seem to do well enough. The other is a slower, sort of grinding down of my resolve to keep trying. I think that one in particular is from the lack of positive reinforcement.
I try very hard to not be negative, and honestly, it’s not always negativity directly, but rather the LACK of positive signals and messages. If I do great – well, that’s expected. If I do poorly, then by default I’m not working hard enough. It’s a failed feedback system that has been built into so many of us.
Have you ever had a really great A1C? You and the doctor might celebrate for 5-10 minutes, then you’re back out in the world again. You are expected to maintain that fabulous A1C, and often to work even harder to get it down more! There is constant frustration built into something that always has room for improvement. It is a hard, hard balance for us to find. The balance between resignation and resolve is slippery, and most often a moving target. What is the answer? IS there an answer?
Chris, thank you very much for the kind words and the opportunity to guest post here. I appreciate it!
I feel this post. I feel the resignation and I feel the resolve. It’s finding a healthy imbalance between them; the imbalance leaning toward resolve, of course. I resign to cookies and cake but try to bolus properly for it. But I feel guilty when I take a lot of insulin. I feel even more guilty when I guiltily don’t take the correct amount of insulin and then watch my BG rocket. But I’ve been doing a lot of resolving and have very successful BG readings. I walk with pride those days. My a1C fell from 8.4 in December to 7.7 in April. I’m still doing a happy dance as well as still resolving to do better.
I know exactly what you’re talking about when you speak of little positive reinforcement. I had an A1C of 6.0 four months ago and my doctor had actually drawn a smiley face on the lab report next to it. I asked for a copy of that report and have kept it on hand ever since. Last month when I went in she was like “oh, you got another 6.0, I’m concerned that you may be having to many lows though so lets focus on those.” My triumph was short lived and the focus once again returned to what I’m doing wrong.
Wow – a great post. I was just thinking about how I am trying to shield my daughter from all the potential negatives of diabetes (she was dx one year ago at 10) so she can still have as normal a childhood as possible and not turn into a worrier. So we don’t lable the BG numbers as good or bad, but high or low – but inevitably she will start labeling them, A1cs and all. I wish there was a way to give her possitive reinforcement without implying that another outcome would be bad – since there is always another day and another number. I’ll try harder to tell here how proud I am of her and how she takes the diabetes in stride. I almost said for not complaining – but then that would imply that complaining is bad – and it is ok, if not necessary to complain sometimes. I wish parents were given as much information on the emotional issues as with the dosing/injections/testing at DX.
i think there’s definitely room for more positive reinforcement. maybe someone should make a meter that, after 5 readings in a row in range, transforms into a cheeseburger?
That is most frustrating – yes, we are measured by our A1C, yet we cannot stop and be grateful when it is on the lower side because it’s not a finite thing. It could change at any time, our control could blow up at any time, etc. And then we come to depend on the meter/CGMS to tell us – but again, not finite, yet so much more cruel at times.
Great post, Scott. I definitely understand where you’re coming from on this one.
I wish I had the answers for you!! Great post, Scott!