Type 1 Diabetes – a lifetime of habits
Well managed Type 1 Diabetes. A lifetime of habits and routines. Getting used to doing the same things repeatedly in order to best get on with life. Amongst other things, this includes:
- Testing blood glucose levels before meals, 4 hours post meals, in the middle of the night, before driving, before exercising, during exercising
- Carb counting and estimating the amount of insulin needed
- Monitoring trends and observing changes
- Basal/Datum testing to reset the necessary figures for calculations
And more recently, if you’re a Sugar Surfer, glancing and pivoting – effectively constant checking and decision making in order to maintain “normal” blood glucose levels.
All put together, something akin to the 3Rs is a set of “habits” that allows you to ensure you’re doing what you can to maintain and manage your diabetes. And for me at least, after nearly 29 years, these are truly habits of a lifetime. They are things I have done for many years in order to do the best I can. Looking back over my records recently, there were one or two occasions where my Hba1C strayed to the wrong side of 7.5% (i.e. a couple at 8%), but for the most part these habits have served me well.
If you understand Sugar Surfing, pivoting and micro-bolusing, you’ll understand that it’s taking intensive treatment to the next level, but with it comes the additional requirement of time spent as you do those habits, and whilst it all helps you manage your condition, it can create OCD, and there are significant mental health problems associated with type 1 diabetes, which all of this can only exacerbate.
But why am I discussing habit and good management? Because oref1 changes much of that. As Dana outlines here on www.diyps.org, with oref1:
How many of these 5 things do you think are possible to achieve together?
- No need to bolus
- No need to count carbs
- Medium/high carb meals
- 80%+ time in range
- no hypoglycemia
How many can you manage with your current therapy and tools of choice?
– Dana Lewis
To achieve points four and five, points one and two are imperative, and three is very difficult. Habit is necessary to ensure you remain on an even keel. The habit of routinely looking at a plate of food as roughly x carbs that requires an insulin dose of y. That’s purely and simply life. But with oref1, it all changes!
It all changes….? How?
With the introduction of the “Floating Carbs” branch into Dev for anyone to test, we have a new paradigm in the “Hybrid Closed Loop” arena. A Paradigm. That’s quite a big statement. But I feel it is backed up by the experiences we’ve had with it. Since testing “UAM” (UnAnnounced Meals or Floating Carbs), which I’ve been doing for a few months, and the “Super Micro Bolus” model of operation for OpenAPS, I’ve had back my first true Hba1C. Now bear in mind that this is also with a month of using the fastest commercially available subcutaneous insulin on the planet too, but the numbers have surprised me. They show an Hba1C of 5.5% (or 37 mmol/mol), which given the way I’ve eaten over the past couple of months (think someone practising to compete in a eat as much as you can as fast as you can competition), is truly astounding.
But I’ve also done this without having to spend huge amounts of time Carb counting. I’ve posted before about oref1 and how it changes the game but what that doesn’t account for is how much difference it makes to what I do.
So what do I mean? In the previous post on the topic, I mentioned going out for a meal and telling it that I was having a large meal. Then leaving the loop to get on with the job over the lifetime of the meal. On other occasions, I’ve simply eaten something and bolused (and thanks to Fiasp, that bolus is done when the food is on the plate in front of me), and let the algorithm handle the rest for me. In short, the advent of the technology improvements have meant that I don’t spend all day looking at my glucose levels and deciding what to do, or even all meal. I can fire and forget, knowing full well that it will take care of things for me. When I go to bed, I do so confident in the knowledge that even if I’m highish before bed, I’ll wake up in range.
This picture of pie and mash, where I simply bolused as I ate then went to the theatre describes it well.
Add to this the automation that can be achieved with tools such as IFTTT, for example, I use it to schedule breakfast and lunchtime eating soon events for work days and Dana has it linked via her sleep logging to set a low temp target on waking to reduce the impact of Dawn Phenomenon. This healthkit integration could be used for a multitude of IFTTT recipes if one took the time to investigate it properly, and indeed potentially could be used to make my “eating soon” triggering more selective. If you have kids at school, Sports afternoons can be pre-set to raise the temp target and avoid lows.
I’m currently looking at options to detect exercise to enable a higher target when an aerobic activity has been identified, to avoid post exercise lows. This is challenging, but looks like it should be possible. One of the options is the above solution that Dana has.
As a member of the oref1 test group said:
It almost feels like a break from diabetes, even though I’m still checking hourly to make sure everything is connected and working, etc. and periodically glancing to see if I need to do anything. So much of the burden of tight control has been lifted, and I can’t even do a decent job explaining the feeling to family.
And with some of the latest stuff being tested, that glancing goes away. If the algorithm is predicting something it can’t handle itself (a low or high) it asks for help. Yes, you got that right. Predicted high that it can’t reach due to the safety caps in place? It asks you to help it. Predicting a low that it can’t fix with low temps? You got that right, it asks for help.
So what does this mean for habits? Well, they change.
Checking glucose levels before meals? You just don’t really need to when you’re running this. If you were high/heading high and oref1 couldn’t handle it it would tell you, so you sit down and bolus for the food in front of you. And don’t need to enter the carbs (previous caveats considered).
Now it’s not entirely closed loop, in that even the current fastest subcutaneous insulin isn’t really fast enough to cope with estimating based on glucose readings for the most part, so an estimate of food is required. but that no longer needs to be an accurate representation of what you are about to eat in order to correctly bolus (unless you’re eating a high carb meal). By interpreting the bolus that is delivered from the pump, or by using an announced estimate of carbs, oref1 is able to understand that it has some carbs on board, and that there is the possibility of more than this. It then sets to work doing its damnedest to keep you in range. And it does an excellent job.
So I’m not sitting down and spending the time and effort to properly identify the carbs in a meal. If I get it wrong, it’s less of an issue as oref1 will bring me back in line. If I don’t bolus correctly? Again it doesn’t matter. oref1 will make up for it. With Fiasp, it does this even more effectively.
The end result of this lapsing of attention to detail and eating like a monster? One of the best Hba1C results that I’ve had, and a time in range (where the range is 3.8-10) of some 90% over the last month.
Yes, I could have eaten better, which would no doubt have improved the numbers even more, but the reality is, as Matthias mentioned, it’s like taking a break. We no longer have to do everything to the nth degree, and that’s as astonishing as it is gratifying. And yet, there is still more to do.
So have my habits of a lifetime changed? Maybe, maybe not, but I’ve sure gained some new ones and been able to deprecate some of the older ones, and the new ones that make life a great deal easier. And that, ultimately, has to be where this leads.
Have you and any further issues with insulin sensitivity when using Fiasp? I know that was a concern a few weeks ago.
No. It has settled down at the levels I’d hit then, and doesn’t seem to be moving about, so effectively there was a one off hit.
I’m four weeks into using Fiasp and up until week 3 was going to give up as despite the changes in I/C, sensitivity ratios etc; I kept having unexpected bad lows, odd highs that were difficult to cope with. I remember that the change from twice daily Insulatard to MDI took a bit of getting used to as did the transfer to a pump. There’s a lot of tweaking but week four is so much better, am in range for more of the time and the lows aren’t as bad. Bolusing when food is in sight is so much better so am going to stick with it for a while longer, there is indeed a learning curve! My results are nothing as good as your closed loop ones but am pleased at the way it’s going
Great to hear Jane. It does take some getting used to.