FUDiabetes

Can Time spent per day managing T1 be measured?


#1

I use to say that T1 did not interfere with my job. I realize now, I was not managing it as well as I should have. Now with Cont. monitor, and pump, I find myself watching things a lot better and more often. I also get more lows, or they effect me more. Some days I ask myself, how much time do I spend managing T1? When I try to evaluate it, its a minute here and there, and 10 minutes filling pump, or changing sensor. Then I realize that its on my mind now maybe 20% of the time…no, maybe its more. I guess I still get mad at my phone when alarms go off telling me I’m high, so I must not have paid attention for that hour it climbed to set off the alarm? So right now I’m thinking I spend an average of 1 full hour a day managing T1, and maybe 20% of 3 more hours where I am watching/concerned about glucose levels as I do other work? I’m not real sure one can measure time spent?


#2

I think you’re looking at it wrong. I’ve been t1 for 47 years, and can say it’s a 24 hour a day job.

But being a 24 hour a day job, it’s only in the background. Sure, there’s a couple minutes a day where it takes center stage, but it’s almost always there.

It gets to be as unconscious as breathing. Thank goodness we can do more than one thing at a time.

The things that help are a watch that displays my Bg, a bag of supplies I always have, and the " force"( just knowing how you’re feeling.). It all blends in to the background.

It’s just a dance we have to do.


#3

I agree with @docslotnick about it being a 24 hour gig. I realized about 2 years ago I was going to put in this time one way or another. I could ignore it all and put in time being too high, too low, at the doctor’s, and stressing about the future, or I could put the time into monitoring it all, making good decisions, hitting it head on… but feeling good. I really don’t think I put more time into my diabetes now than I did back then… it’s just time better spent. And it’s really all the time— and yet not more of a burden then if it were none at all. I also struggle with time management, so it may just be that. :grin:


#4

According to the Canadian government, people with T1D who spend an average of 14 or more hours a week doing direct diabetes management are eligible for the Disability Tax Credit. So there are people who add up all their time as part of the application process.

I agree that T1D is a 24/7 job, but I do think there are days when much of it is at the forefront. When you add up everything that other people don’t have to do—testing, shots, pump site and cartridge changes, counting carbohydrates, weighing or measuring food (if you do that), calculating insulin doses, treating highs and lows, checking CGM—it really adds up. And while some people on this site just use the Force for everything, which may save time in some ways, doing things like micro-boluses throughout the day adds time in other ways. So I think it probably all evens out, unless you are someone whose blood sugar is stable and in range 90% of the time regardless of what you do and you never have to pay much attention to it, which I think is pretty rare if you have T1D… I think we just no longer see it because it becomes so integrated into our lives. But if you threw someone who didn’t have T1D into our lives, for sure there would be a ton of things they’d have to do, and that would all take time.


#5

Bill, how long have you been more intensely managing your dia?

I can see what you are saying, and my son gets this way sometimes. For us, it is usually a sign that he is starting to burn out and needs to take a week and think about it less and then get back to it.

As far as an estimation of the time you spend managing the disease, I think your calculations are about right, but in reality it is just like taking an hour to work out, it is time very well spent on giving your body the best shot it can to not have complications.


#6

I could not agree more with this statement. It’s definitely a 24 hour job, but it’s a background job or an “additional duty” if you like Military slang. So, for us, it’s not so much “work” as it is monitoring and observing (listening as necessary). Much like a Fireman or an EMT…they monitor radios and when they’re called, they rush to the scene. For Liam, the actual “bolus” work only takes less than a minute for all boluses throughout the day, for meals, but then there is the listening and monitoring and pushing of buttons to see BG’s throughout the day that does take some time, but it kind of mixes itself into everything else being done during the day and just becomes second nature. Whenever there is a problem…ie., BG’s are double down at 140, then we, much like a Fireman or EMT…rush into action to thwart the problem before it becomes (or potentially become) an emergency.


#7

I’ve had the CGM for 3 or 4 years. Every now and then I wonder about “quality of life” and wonder if I was easier to get along with before worrying about it so much. My Tslim pump is out of warranty so comparing. Started wondering if 670g would take more or less time from my life! I think their is a break even point between enjoying life and time managing glucose levels.


#8

It’s definitely less work if you don’t have the technology…if you don’t have buttons to push, you will save that time. But it’s a trade off between the time you’re going to spend using the tech to improve your A1C and overall health -vs- not tracking it at all and either doing lots of finger sticks throughout the day or just ignoring health all together and having bad A1c and bad health issues. I think yes, tech takes time, but it’s the lesser of the two evils.


#9

I often struggle with time management, too, especially as it relates to having multiple chronic illnesses. A lot of my life is figuring out how I can do what I need to do in the least amount of time possible. I used to feel quite resentful about all the extra time I spend doing things other people just take for granted, but less so these days. These days it’s more of a challenge…

Interestingly, I just started using Apple ScreenTime on Tuesday. According to that, I spend an average of 16 minutes a day looking at Dexcom and have received 95 notifications. That has to add up over time, even just in the annoyance factor. And above even Dexcom is the Discourse app, which I only use for diabetes apps and use for an average of 21 minutes a day. So that’s more than half an hour a day right there, and it doesn’t even include any direct diabetes actions (and is not counting time I’m on Discourse from my computer, like I am currently).

I don’t think diabetes taking up a lot of time is a bad thing, as long as it’s not a source of stress. Look at how much time famous athletes or musicians spend honing their craft! Ours is so much more vital that it deserves at least as much time in managing well, I would think.


#10

If we count my time on FUD as time spent managing diabetes…well, that would be a very high number. :blush:


#11

If you hang on one more year with your pump, you should have a choice between 3 automatic systems, i.e. Medtronic, Tandem, and Insulet. I think that is about the time you will be able to choose the one that works best for you and your goals.


#12

I usually say 1 to 2 hours a day when I have to guess. I agree wholeheartedly it’s time well spent!! My guesstimate includes time looking at CGM in AM and between or before meals with actual thought involved and needing concentration, not the glances. It also includes time spent packing for a drive or trip: restocking snacks, strips, etc in my car stash, etc. I also include recharging devices, recharging Frio’s, dealing with pharmacy refills, insurance, etc.

Basically I count time when I need to concentrate/think about either supplies or BG as time spent managing. I have been known to bark at my loved ones if they interrupt while i’m staring at a computer screen and assessing one of the usual questions about basal or bolus.


#13

I was surprised by the large number of notifications in my case, but it turned out that most of them were calibration requests (I’m calibrating once per day, so I’m racking up 12 ignored notifications per hour for a half day.)


#14

This is a really good thread, thank you for starting it @Bill. I think that my partner certainly spend an hour a day thinking about it. Probably more. And some weeks it certainly is not “in the background“ for us, although we wish it was. We discuss the quality-of-life issue a number of times of year when it comes down to the Dexcom and the pump. He often wonders how much impact the lack of sleep has - would it be better to just have crappy BG control? Not sure. Of course it’s incredibly variable, just like diabetes. Some weeks are OK, don’t require a lot of thought. Other weeks feel like a 24 hour a day disaster.

Honestly, when I read that I thought you managed without all these brilliant replies in an average of 21 minutes! And my mind was totally blown. Then I read about your computer. :rofl:


#15

A lot of it is about balance but also possibly how you frame things. For whatever reason, maybe because I just don’t like stress and anxiety and avoid them as much as I can, I tend to lump looking after my diabetes in with looking after my body in general rather than Specifically Diabetes-Related Tasks, if that makes sense. To me, testing or changing out a pod or whatever is just something that needs to be done, and in that sense it’s no different from showering or shaving, which also have to be done and also take up some time. I have to treat highs and lows, but how is that different from treating headaches? I have to take insulin, but I also have to take my asthma puffers and my blood pressure pill. In a way, they’re all the same thing, just part of looking after my body.

This is, of course, much easier to say if you’ve had D for many years. To the newer diagnosed, things can feel overwhelming.

I also agree technology can make it all feel overwhelming. I am conflicted about my CGM. I am guilty of ignoring it for hours on end, and so the CGM becomes a nag (“Look, you’re still high!”) rather than a tool I could have used to bring down that high sooner. But then I’d be the person who’s looking at their CGM every 5 or 10 minutes and making mini adjustments with carbs or insulin, and I’m not sure, after 48 years of living with it, that I want diabetes to have that prominent a place in my attention. Sometimes, if I’m on a crazy roller-coaster, turning off the alarms or even shutting down the receiver for a night are a better option than lots of stress and a sleepless night. Still, pumps and certainly the CGM have increased my time in range, reduced my A1c, and reduced the number of and severity of lows, so they definitely have their plus side.

I’ve tried a few times to tally up the time I spend on my diabetes, to see if I qualify for the Canadian Disability Tax Credit. I don’t come anywhere near the 14-hours-a-week minimum, even with things that don’t qualify like carb counting. But everyone is different.


#16

I totally agree with this. Us old timers were gradually introduced to urine testing, then BG testing, single daily injection, MDI to pump, etc, over a period of time, 30 years in my case. Another 10 years, and I got CGMS. So each incremental change didn’t seem overwhelming. Just a new way of life.


#17

Heh, I do this, too. I figure I managed for 25 years without a CGM, so one night isn’t going to kill me, and at least for me having a night of uninterrupted sleep is SO important for functioning. I also sometimes disconnect my pump for a day or two and take Lantus if it’s driving me crazy. Usually the result of doing that is that I REALLY appreciate my pump when I reconnect it!


#18

Nicky! Thanks for recommending this site! You are the reason I came here after watching your videos! I agree with your comments. Things like the time it takes to fill the T Slim vs Animus (4 years ago)really bothered me. Time it takes for me to find reading glasses because I can no longer read the small font on TSlim, or get it in shade so can read it…all take time out of my day! No finger pricks on Dexcom…Great Time Saver! Thanks again!


#19

You’ve made my night, @Bill. There is such good stuff in here, I can’t even begin to explain. It makes me very happy to know I’ve helped someone else find it. :slightly_smiling_face:

So how long have you been on the T:slim then?? I’m only a week into it, and I’m not even sure the sun has been out in that time. Now you have me curious about the light. I’ve just finished my third cartridge fill, and it was better than the last one— which was better than the first. I’ve got high hopes. :grin:

Anyway, glad you are here, and I look forward to hearing more from you. :slightly_smiling_face:


#20

@Bill, I also agree with these numbers. 1 to 2 hours per day altogether is our estimate as well, depending on how bad the day is. I think your estimate of 1 hour full time plus a certain % of 2-4 hours where you keep your eye on the CGM etc. is pretty close to us for most days. Puberty peaks are big time wasters though.

For us, however, I would add the significant impact of lack of sleep when we have night-time problems, which is often. I am hoping that it will go away in a few years.

If it was time for us to look around, we would look at the T-slim x2 with Basal IQ first, before the 670G: it appears to me that, for many people who attempt to have good control, the 670G is just not good enough, and I am guessing that this will apply to us too. But that certainly is an individual call!