Does anyone think about their T1D self-care in a certain way that helps them visualize it?
I used to think of my T1D objectives as playing vertical Pong when on MDI. Everything was a nudge up or a nudge down. There was rarely any “level” to be found. And I did well with that thinking.
Going on the pump (starting in 2014), I got a lot of outside help, read a lot of books, and bought into the idea of finding the Ideal Basal Rate, and adding meal insulin was just a financial transaction: insulin in, great blood sugar out.
In my attempt to get back to near pregnancy control levels (just for great self-care and quality of life, no more babies for me), I’m finding that I’m going back to my vertical Pong thinking. And I’m seeing much better results now. Screw what my blood sugar SHOULD be doing with these carefully tested basal rates. Those basal rates are great 1.5 weeks per cycle for me, but even then under ideal circumstances I personally still need to treat each day as it has a certain rhythm. There’s a rhythm to breakfast, there’s a rhythm to how much coffee I can treat myself to without overly complicating the rest of the day, there’s a rhythm to lunch, afternoon snacks, etc etc etc.
Back to my question: Do you have a way you personally view your T1D realities that helps you in your approach?
I think I had a “surfing” approach before the term was coined. Having CGMS was the game changer.
Prior to CGMS, I tested before meals only, as instructed, to determine insulin dose amount. I was still in the “Follow doctors orders” mental model.
CGMS totally changed my mindset with visibility to seeing BG trends as they correlated with events. I also discovered online diabetes forums, BECAUSE of frustrations with Medtronic Sof-sensors. So new mental mode was doctors don’t know everything. Find people in the same boat, and learn from them.
I no longer carb count, but do estimate small, medium large for meals, then rely on dexcom to help keep between the lines, just like pong.
Very well said. So many variables it’s always a game to keep me between the lines. Some is strategy, some is science, some is art, and sometimes pure luck…lol.
It’s been a year since I read “Sugar Surfing”, but my take-aways from it are:
He states diabetes is biological chaos.
He nudges it frequently because it spikes and dips due to the chaotic nature of diabetes.
Theoretically, yeah it’s probably the same. In practice, I operate differently than he does. I think the main reason I surf it differently than he does is because of the changing female basal needs that I have, so I need to keep a very clear view on what’s causing what due to the different requirements I have every few days. If I had a level playing field and could typically “trust the math” as a fail safe, I’d nudge more haphazardly with insulin than I do. But since I can’t trust any math for more than a day or two, I choose to live (and prioritize) each day to fit my benchmarks that I used back pre-CGM to keep tabs on everything. Before I had CGM, I spaced my meals pretty much the same way each day and ate the same breakfast each day. It served as my basal indicator for the day. If I landed higher after breakfast than I had the day before, that let me know that my Lantus would need to be up’d soon and I’d have to be more aggressive with all my meals that day until my Lantus could be adjusted.
I’m going back to that methodology. I don’t recommend this to others. But I need to do this again to get my feet planted on my benchmarks again. I’m constantly having to evaluate if my highs are due to hormonal resistance or due to a screwy site or some other issue. Both of those can masquerade as the other. Getting back to my benchmarks (i.e. really seeing what breakfast does each day as an indicator, and properly spacing meals to give each bolus a chance to run its course without complicating factors) gives me the confidence to get ballsier with my pre-bolusing, which gives the insulin a chance to really work in the first place. Once my confidence gets shot, I freak out about pre-bolusing, then I’m fighting highs for any number of reasons. But I don’t “nudge” with correction doses as freely or as often as Ponder does, and that’s because I feel it interferes with evaluating my basal needs, assessing site health, and will make me too scared of pre-bolusing because of IOB from correction nudges.
So I basal surf, and I am letting insulin ride more than I used to, and I do nudge, but all differently than he describes. And I think it all comes down to the shifting sands of hormonal problem solving which dominates my time more often than not.
I don’t carb count, either. However, my control is actually worse than when I was super precise about doing carb counting (using a scale and carb factors for everything), so I’ll probably get back to it to see if it helps.
I’d say I do a combination of sugar surfing and modifying my behaviour to help things. For example, I’ll avoid high-carb foods if I don’t feel like dealing with a possible high. I want to know what causes what as far as dealing with it goes, but beyond that, I’ve stopped worrying too much about it. The main place it comes into play is knowing when I need to raise my basal rates a lot (I’ve raised them by 0.5 units an hour over the past few days, for example, a total of 12 units).
Interesting discussion. In my mind the mental side of diabetes is soooo underappreciated and under studied by the medical model that it is truly frightening.
I personally think the ability to be flexible and experiment is really important with Type 1 in particular, but anyone using insulin really is better served with this mind set. Once you are willing to try things and change your lifestyle and medical regimen to optimize things for yourself you are way ahead of the game.
How about cooking with a thick-bottomed frying pan on an old electric stove? The slow transfer or heat is analogous to the delayed action of insulin. Technically, you could find a perfect level that keeps everything steady, and make small changes over time. I guess this would be the equivalent of basal adjustments on a pump. On the other hand, it’s easy to overcompensate in either direction, leading to oscillating temperatures. Also, imagine that it’s your job to keep a steady temperature while the chef constantly adds and removes food, making the job even harder.
Now that I think of it, I could use this metaphor next time someone says “how hard can it be?”
