I was thinking tonight about being one of the few people who has no desire for a CGM. I've gone into the reasons elsewhere, and won't do so here, but it comes down to a higher degree of BG control vs a higher Quality of Life. And yes, I do believe that concept is important enough for caps! Quality of Life as it applies to D can mean a number of things: How much time we choose to devote to our D management which is probably #1. But also things like diet, exercise (or lack thereof), acceptable BG goals, testing, things we do or choose not to do in our lives that might make our D management harder (such as travel or specific work environments), etc.
We talk all the time on here about all these choices and none of them (with the possible exception of totally neglecting our D or being placed in a psych hospital for Diabetes OCD) are right or wrong, just different. But I always think about Quality of Life when I make a choice, not just quality of BG control. Kind of like some people only consider financial success when choosing jobs, others weigh that against job satisfaction and free time, etc...quality of life.
I think perhaps the equation is different depending on age. I am 66 now, diagnosed at age 58. That's very different from someone who was diagnosed at age 5, is now 35-30 years in with hopefully another 50 to go. The difference to me is that I have way less time to worry about accumulating complications. I'm not saying that means I go "whoopee!" and test every other day while I eat pizza a la mode. My last A1C was 6.3 and I'm fine with that. I work hard for my control, test ten times a day, eat medium low carb (generally under 75), log and review/tweak doses on a regular basis. But I don't eat true low carb which would necessitate serious revamping of my diet, probably to a place that couldn't tolerate remaining vegetarian or a foodie. I don't have or want a CGM. I'll never be a member of the flatline club. I don't exercise. All choices. There are several more I can't think of right now that we talk about on here. It's sort of like I'm willing to do the work to get a "B" in a course, but not the greater amount of work for an "A". I don't need an A or want to do what it would take to get one....quality of life.
I think you nailed it when you said it depends on each individual's situation.
I am one of those who was diagnosed at 9 and just turned 33 - I would like to live another 50 years with diabetes and have already lived for 23 years with it currently. The older I get the more scared I get that, at my current level of control, I'm not at all certain that I would live another 50 years - every adult that I've known who has had Type 1 since childhood has died by their mid-50s. So I am getting ready to pay out of pocket for a Dexcom. That is something you would never do because it might decrease your quality of life, but for me I think it will increase my qualtiy of life.
But our situations are totally different. I work full-time and my work is not only varaible from day to day (though less so than previous jobs) but also involves a fair bit of travel. My blood sugar has huge, unexplained (at least so far) swings. Why is it that last night I bolused for an orange and ended up completely crashing and having to eat a bunch of food to recover as if I'd done a double bolus, while today I ate lunch and shot up to 329 as if I hadn't bolused at all? There are periods where I literally have no idea what my blood sugar will do, which is stressful, especially when my blood sugar crashes low or shoots high with no provocation on my part. I worry sometimes that I sort of slip into a helpless mode with my diabetes, but I think part of that is because I don't have enough data. If my A1c were 6.3 and I wasn't having major highs and lows on a weekly basis (at least!), I'd be totally happy. As it is, my A1c has never been as low as yours in 23 years, and I'm hoping a CGM might change that.
I do have things I am willing or not willing to do. I will probably never eat less than 80-100 grams of carbs per day because I have food allergies that restrict my diet in addition to diabetes. Exercise is something that I think is really important (for everyone, not just people with diabetes) but that I sometimes struggle to do. I am willing to weigh all my food at home but when eating at potlucks or eating out (which isn't a problem since I don't eat at potlucks or out much at all due to food allergies). I don't think I will ever be one of those who aims to be in a non-diabetic range at all times - but this is partly because I don't know if that's even possible (for me). I am sure my techniques will change as I get older - maybe when I am 66 I will be tired of all the technology or will decide that I want to go on a truly low-carb diet or will be able to keep an ultra regimented schedule - but in the meantime I have to manage diabetes for another 33 years before I'll even get there.
I think if you are satisfied with your diabetes control and with how you are managing it, then that is what counts. If you are not satisfied with it, then you should do something to change it. Why get something like a CGM just because everyone else seems to be getting one, if you don't feel it would help (same with a pump)? Where it gets hard is when we all get online and compare ourselves to others and feel like we should be doing this or that or using this or that piece of technology or this or that technique. I am bad at this myself - I used to look at people calling readings of 140 high or complaining about an A1c of 6.6 or restircted their carbs to 30 a day and feel bad that I didn't have such standards. Recently I have been trying hard to not compare myself to others. But, in the end, I have to find a way to be healthy but to do so in a way that will work for me for the next 50 years or hopefully more!
Thanks for your response, Jen. In my effort not to go on and on, I totally forgot the variable of how busy our lives are. I actually remember saying that I didn't need a pump because I had enough free time to deal with MDI. But I like my quality of life now that I have one. But so many people have ultra-busy lives with careers and travel and families and those things have GOT to impact the choices in so many ways. We may have totally different circumstances but I think we agree that hearing other people's situations and choices can be helpful, but comparing can be discouraging. I think in your situation I would make very similar choices. When do you think you'll have your CGM?
I don't have a family - that would add a whole other level of complexity!
I'm going to call next week to order it. But first I'm going to give one last stab at my insurance plan to see if they will cover at least part of it (not hopeful, but worth a shot).
I think your approach is very sound and balanced. That incremental percentage point of A1c improvement should always be balanced against the level of effort and stress involved. Diabetes does impact our quality of life, but everyone should find their comfortable and safe equilibrium where the burden is minimized.
A few things. 1. Personally, I believe that my quality of life will be improved with a CGM(getting one in February).I worry so much about my hypo-unawareness that I obsess about my numbers all the time. It is so frustrating and I believe the CGM will help me with this. Call me an over-achiever. I enjoy looking at my numbers and challenging myself to keep an A1c under 7. 2. You're point about age is an interesting one. I was diagnosed at the age of 9 and I am now 40. I believe I have another 50 years to go. BUT, accumulating complications, as you put it, can come no matter the length of time you've had D. There are studies out there that say if you reach the 20 year mark complication free, the odds of developing complications significantly decreases. Not saying you will NEVER have them, but it helps. So, with that being said, I am determined to stay within the best control for me and try to beat the odds.
You're correct that these are all personal choices. Maybe instead of trying to get an "A" in the course we should opt for pass/fail. Because, in my opinion, no matter how hard we each work at managing diabetes....it comes down to a lot of luck.
Thanks for sharing your perspective, Sarah. I actually don't obsess or worry about numbers, though outsiders would think I do because I test 10 times a day and correct and re-test if I'm out of range. But I just kinda do it without much emotion attached. For me (different than most I guess) a CGM would cause me to obsess too much. To give you an example I've never worn a watch as i figured I'd be staring at it every couple minutes. Of course now (I'm traveling) I realize I have the time on my meter, my kindle and my laptop!
You're right about the trying to get an "A". I teach and my students are well aware what is expected for each grade. With D you can work your butt off and end up with a C! I took Mandarin pass/fail because I knew how hard it would be. Ditto on D.
Not wanting a CGM is another way that we're similar. For the past few years my blood sugar has begun to show much more variability. As recently as two years ago, I could count the number of times I hit 200 (after achieving basic control post-diagnosis) on the fingers of one hand. Now I'm neither pleased nor surprised to see them a couple of times in a single week. I'll think about a CGM if the stress of beating back those highs or avoiding severe lows gets too much but until it does I'll just go with finger sticks and try to run out the clock.
I agree with both sides of the equation. I have 39 years in so far and plan on at least another 35-40 good years. My CGM has basically given me back my life. I sleep better, I exercise better, I work better, I live better because I am no longer petrified to close my eyes at night and I am no longer worried every time I get on the tennis court or go for a swim. My husband can go out of town without concern for my safety. Since my insurance covers both pump and CGM 100% without any co-pays I'm happy to have this device. In fact even if I had to pay for each and every single sensor I would without batting an eyelash because it has had such an impact on my day to day life.
Yes, I agree I should never say, "never". If I got to the point where I felt I was treading water controlling my BG I would think about it. On the other hand, not a lot of point to that for me at this point unless Medicare changes their policy. Even though Medicare isn't my only insurance, I believe they have the right of refusal as my primary.
For me, it's not just the "obsession factor" (and it seems that too is opposite of most people). it's the having another thing sticking into and out of me and something else to worry about/shlep. :::Looking at my suitcase with one large compartment overflowing with medical supplies for just a 2 week trip:::
Re the CGM, I actually find it allows me to go for many more hours without thinking about my BG at all than I did before I got it. I thought it would make me more obsessive and for a few months it did, but now I find myself forgetting about my BG for long stretches of time and it's so nice!
I have to say that while I agree with the whole Quality of Life perspective that you have presented, I don't see where ruling out a CGM comes into play, but you are welcome to have your own view.
Very similar to Shadow Dragon, I find the CGM gives me the ease of mind to "forget" about my D for longer periods of nano-seconds (LOL!). With the newest CGM upgrade, I can test less and be fairly confident that the number is pretty accurate (unless I'm low, but that's another story/post). As a result, I don't have to cart the meter with me everywhere and/or guess at what's going on between tests.
I am 60 now, diagnosed at 19, and I fully hope to have another 30+ years to go, so let's have more Time in Range. My test numbers are just datapoints for me, with very little emotion involved. I'm a bit like Sgt. Joe Friday, "Just the facts, please."
I never log, in part because each day is so different, what would be the point? But mainly because logging makes me feel like a cog in a machine, and for me does NOT represent Quality of Life.
The discussion has kind of gotten stuck on the topic of CGM's which I hadn't intended. But for me a CGM would, I believe, be the opposite of what it seems to be for most. It would make me obsessive, needing to worry about another thing, etc. For most it seems to be freeing, which is the whole point of QOL. Logging makes me feel grounded; almost as if I put things down on paper and so don't have to keep them in my head.
The answers to this topic definitely are bringing out that we all define "quality of life" differently, but that it is an important baseline for us all.
I agree about the shleping and not wanting one more object sticking into me. We took a two week vacation to London and Israel and there was just so much stuff to carry. My endo gave me good advice about the trip - don't worry about running a little high for a few weeks - avoid the crashing lows and have a good time. I listened and am glad I did. When I tried to maintain my normal level of control on a trip to Rome about 4 years ago, I was constantly going low and was so snarly at times that my wife despaired of ever being able to travel with me again.
We all look at things from different perspectives. CGM for me is hands down, a lot more value than its cost, in terms of quality of life. It's reassuring to me to watch a BG in the 90s go sideways for hours. My BG variability is better post-CGM.
I don't know what it is. If a watch it, I want to make it better. It's a mind-hook that works on me.
Everything is balance. It's just that we each weigh things differently.
I've watched this discussion closely. I've been on MDI for four years. I am very diligent about my lifestyle and my MDI regime. I've had good results. Studies on average show that an insulin pump can reduce your A1c by 0.5% on average for patients with A1c in the 8% range. As I've considered the pump I know that I would be unlikely to get much improvement and that improvement would come at some significant cost. Not just the dollars but the time and effort in having all these additional measurements and controls. And a CGM would be the same way.
I think a good philosophy is to set a good achievable goal for your blood sugar control and then spend the absolute minimal amount of effort achieving that goal. If you just cannot achieve your goal, maybe a pump and CGM can help you do that. But also you may need to modify your goal if it is just unrealistic. In the end what good is achieving perfect blood sugar control if you have no life because all you do is look at the CGM and try to control your blood sugar every minute of the day. Sometimes we just have to walk outside and just relish the joy of the day and the sun on our face without worrying about things.
Thanks for weighing in on this somewhat abstract topic, Brian.
First on pumps: I feel the way people with cgm's seem to about how it has reduced my stress, not added to it. Yes, there are other objects to obtain and fiddle with, but then basically I forget about it for 4 days. My basal is taken care of and when I bolus I just push some buttons. (I have a meter remote). No need to get insulin and syringe or pen and needle and inject. I love my pump more for how it eases my life and lets me not think about D for x hours a day. (Oh and I no longer pay anything for my supplies with Medicare + my Anthem so money is out of the equation.)
But most of all I like your last paragraph which kind of gets to the balance and the spirit of what I am talking about, whatever means you use (or don't use) to get there.
