FUDiabetes

How difficult teen life is w/o a CGM

We have been without a Dexcom for over three weeks and just got it going again yesterday: we lost all of our Dexcom related electronics in our kayak camping trip 3 weeks ago, and it took up that long to get the tool chain running again.

The last three weeks have been a bit overwhelming. My son has multiple hours of sports practices every day, every day at a different time, including 7-9pm practices twice a week. These, in particular, are really difficult to deal with without a CGM: we often stay up until 5:00am due to the risk post exercise lows, and, sometimes, due to actual post exercise lows. So we both feel rather exhausted, and getting our Dexcom back is a true relief – being able to have alarms turning on instead of having to stay up makes a huge difference.

Of course, this would happen at a time when other work is particularly demanding. I am in such deep sleep deficit that I am worried about not waking up when I need to. This summer is quite hard on us.

I feel you Michel. Our summer is also chaotic, hectic, and fun, but the D doesn’t care. We are trying to get control in time for our County tournament on Friday. It isn’t easy. But remember, school is just around the corner…when the schedule can reign supreme again and A1c’s will plummet.

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Sorry to hear you’re having a tough few weeks. I can only tell you I think it’ll get easier over time.

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When you’ve been using Dexcom for a while, it becomes very easy to rely on it. Even now, those 2 hr warm-ups bring on a little stress. Incredible to remember when we didn’t have it at all…

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Yeah, it’s a little funny in a way as someone who survived an entire teenager-hood with diabetes and no CGM, but I also wasn’t in as tight control (part of how we did it was not running as high a risk of being low by not running as low all the time). But it was really tough. That said, I never stayed up waiting for potential lows—does he not wake up for them? We were always told, and it seemed true, that I’d wake up for lows and to the best of our knowledge, I did (sometimes it would take me a moment to realize why I’d woken up, but usually I knew and sometimes I’d be having a dream about eating right before, ha) and I’d treat and go back to sleep. I wonder if a downside of the Dexcom might be that it trains people’s bodies/brains that they don’t have to be sensitive to that?

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My opinion, I think there is a risk of becoming too dependent on it.

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@Michel Hope things settle down for you soon. We were about to send out a search party :joy:

@cardamom You are so right. CGM has only been around for 11 years, SBGM had only been around for about 36 years. I would challenge any T1 to get by without a glucose monitor today, even though we used to do it years ago. Heck, I can’t even get along without CGM anymore even though I spent my first ten years with only pee sticks.

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For what it’s worth, I don’t think I could ever achieve as tight control as I currently have (A1c 6.3 and continuing to drop, aiming to 6 by the end of the year—something I never imagined possible for me) without my Dex. I also think that having used it now, I’d be somewhere between where I was before and where I am now if I suddenly had to go without. It’s been interesting on random days (or few days) I’ve had to go without it, because I think my internal sensitivity has largely improved, because I get so much feedback to fine-tune my awareness with. But I would be worried too if I didn’t have that, especially for lows. I wonder if it’s similar to bed-wetting in a way, where most people’s brains naturally get trained to wake when they get the signals they need to pee, but for some people, their sleep is deep enough that they miss them. For the diabetics who for whatever reason miss the cues, might those folks benefit from some sort of behavioral protocol to make the brain slightly more vigilant when sleeping? Seems like if you could address that it might remove a lot of anxiety for a lot of people.

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Glad you got a functioning CGM again. Will you all do anything differently next time? I don’t know how you really could have prepared anymore than you did. Will you, during your next Kayaking trip, only use the basic tools and save the expensive devices for home use? I know that’s risky, but if you check sugars often in the wilderness, he should be OK.

Your experience has made me a little hesitant about planning anything over a day with my boys in the woods due to this happening. It seems that everything that could have gone wrong, did…as far as malfunctioning devices is concerned.

Glad you have him hooked back up to the CGM data now because, like you, I’ve become so dependent upon those alarms, and seeing those dots.

Stay strong buddy! This too shall pass!

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Hope you’ve tried tresiba by now, for quite a significant portion of those who try it it seems to make their life much easier

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So sorry you are going through this. Sleep is so important for well-being, it’s really tough when we must always be ready to wake up on a moment’s notice.

Glad to hear your son’s gotten the Dexcom back. It really is crazy flying blind after getting so used to it!!

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You are right – this was a bit of whining :slight_smile:

He often wakes up – but when he is really tired he may not. I don’t wait long enough to find out. I have had to give him sugar for a low 50s low without his waking up when it is after heavy sports practices. So I am not sure what would happen.

That is possible and worrisome.

That is definitely true for us.

Also true for us!

This is really genius. It must be possible to do biofeedback. What a great idea.

Yes. I am already planning the next trip, probably in late fall. I am rethinking what we did – it was not a matter of not planning enough, but of not planning the right things. I am rethinking the equipment we brought and how we used it. I will share our lessons learned soon.

I know! I think you should not be hesitant! But definitely, whatever could fail did. So I think redundancies are critical. I will have a better way to deal with and protect equipment next time.

We’ve been out camping for a few days and the receiver/phone/transmitter/etc. held up fine. It really seems to be all he moisture from the kayaking, from @Michel’s description. i wouldn’t let the possibility totally stop you from going out into the woods, but that’s just me. Of course, we started small with camping – an hour away so that if disaster struck we could always go home. Maybe try an overnight and see how that goes.

Also, I’m not totally familiar with this, but my memory of summer in Milwaukee was that it was unbearably humid. I can imagine in the Great Lakes area it’s even worse. So that may have been an issue too.

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We have a few acres so we already camp out…it’s just usually in our own back yard! We live in the boondocks so we can enjoy camping right at home. Still, visiting national parks and camping at other location makes it more enjoyable!

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Yes: I don’t think we would have had these failures if we had not been kayaking, canoeing or river-rafting. The primary issue was the water damage. I think I can deal with that better next time.

There is a simple thing everyone can (and should) do. Before you glance at your CGM, or look at your BG number, take a guess. What do you think your number will be, and what will the arrows show?

Process everything - last BG number, recent activity, recent food, IOB, how you feel, everything. Connect the dots.

There is no downside to doing this, and the benefit (eventually) can be tremendous.

I want to encourage everyone to make sure their CGM is always a tool, but never a crutch.

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