The psychological 'drain' of the semi-constant xDrip 'alert' beep

[john_coburg]

Greetings all… not been here for a few years, i hope all is well. As usual, managing my T1 is an unmitigating bore/hassle, and as someone with Asperger’s, an anxious/stressed disposition, and a high pressure job in the City of London, i find i struggle mentally with the constant management of it.

I have recently started to find i am becoming increasingly angry and frustrated by the near-constant beeps from my Libre/xDrip+ set-up, helpfully warning me i am below 3.5 or above 12, and that i need to drop everything and do something about it. Yes, i know i shouldn’t be going that high and low every day (but i do, and have done for 20yrs, and i just can’t find a way not to), and yes, i should be ‘grateful’ for the advances in tech that alert me more quickly and without fingerpricks, and have avoided a roughly annual visit to A&E owing to an unnoticed hypo that suddenly floors me…. but such is the human condition, i have priced all this in, and now find that my stress levels are going through the roof when for example i am managing multiple things at once (e.g. running to a meeting while already late/losing money on trades at the office/trying to manage a failing relationship while trying to keep my house organised/tidy/keeping fit with running/going to gym etc…. ) and then at the worst conceivable moment : <beep!>, xDrip gives me a kick in the groin, to just make it clear i cannot forget how utterly useless i am at managing my disease, and how inescapably miserable the rest of my life will inevitably be trying in vain to manage it.

And so i find on a receiving a beep (on average around 4/5 times per day) i am resorting to hitting my desk hard, or cursing at inanimate objects, or throwing my phone across the room in sheer frustration/anger…and of course this serves no purpose, just pushes up cortisol and pushes my sugar higher if high or lower if low. i feel i am burning out/my brain feels as if it is being squeezed like a sponge. it is no way to live, and so i have to somehow rectify it.

How do other members manage the psychological torture of these beeps? How do they get out of this toxic trap of ‘personifying’ them as i seem to, and treating them as a metaphorical taunt from your worst enemy?

Thank you for your help.

[ClaudnDaye]

I’m really sorry you’re dealing with this — reading your post, the exhaustion and anger come through so clearly. What you’re describing isn’t a failure or weakness; it sounds like classic “burnout.” Having a T1D son, diagnosed at 2yo and currently only 12yo, this is what I worry about most, as a parent, for him, when he’s an adult.

Living with T1 for decades is relentless, and layering that with anxiety, Asperger’s, and a high-pressure job would push anyone to the edge. The beeps aren’t neutral for you anymore — they’ve become emotional triggers — and that’s completely understandable.

One thing I want to say very clearly: you are not “useless” at managing this disease. The fact that you’re still here, still trying, still engaging with others about it after 20 years is proof of the opposite. T1 is simply an unfair, noisy, demanding condition that doesn’t respect mental bandwidth.

A couple of thoughts that might help — offered with respect, not judgment:

1. Consider whether lower-carb eating could reduce the roller coaster.
For some people, especially those who feel constantly jerked around by highs and lows, reducing carb load can dramatically flatten the swings. Fewer big glucose excursions often means fewer alarms, fewer urgent corrections, and less emotional whiplash. It doesn’t have to be extreme or permanent — even experimenting for a few weeks can be informative.

2. Deep dive on dosing fundamentals (basal, ISF, I:C).
If you haven’t already, spending focused time really dialing in basal rates, insulin sensitivity factor, and carb ratios can be transformative. Even small misalignments can create daily chaos. There are people in FUD who genuinely love helping with this —
@Eric, in particular, has helped many folks untangle stubborn dosing problems. You don’t have to solve it alone - we are a community that does everything we can to help one another live unlimited lives.

3. Re-evaluate the tech — especially how it alerts you.
If the alarms themselves are a major source of distress, it may be worth looking at tools that give you more control. Devices like SugarPixel, for example, let you fully customize alerts and thresholds, choose when they’re on or off, and tailor them to what actually matters to you. That flexibility has made a huge difference for my son and for me — the data is still there, but it feels far less punitive.

4. As a last resort, consider stepping back from the tech — temporarily.
This may sound counterintuitive, but if the alarms are actively harming your mental health, it might be worth taking a break from constant alerts. Some people find that periodic fingersticks and intentional check-ins (rather than constant surveillance) help them reconnect with their body and BG trends without the sense of being scolded all day. This doesn’t have to be forever — just long enough to reset the emotional relationship with the data.

Most importantly: you’re not broken for feeling this way. The tech is meant to serve you, not torment you. If it’s become psychological torture, then something needs to change — and that doesn’t mean you’ve failed.

Thank you for being honest about this. You’re not alone in feeling it, even if not everyone has the words (or courage) to say it out loud.

[Boerenkool]

I wish I had the solution. Sometimes these alarms, particularly when they disturb my sleep, ■■■■ me off so much.

[RachelMaraii]

@ClaudnDaye

3. Re-evaluate the tech — especially how it alerts you.
If the alarms themselves are a major source of distress, it may be worth looking at tools that give you more control.

Does the Libre let you turn off certain alarms? When I’m feeling burnt out, sometimes it does me good to turn off my high alarm and just keep the low alarm on. My endo has encouraged me to (try to) let my AID handle the upward trends on its own too.

Regardless, you’re not alone. I was in a tough place last winter with burnout. I hope you’ll find some strategies that help alleviate some of the T1 stress.

[john_coburg]

@RachelMaraii

Does the Libre let you turn off certain alarms? When I’m feeling burnt out, sometimes it does me good to turn off my high alarm and just keep the low alarm on.

Thank you - good shout. i have done this. The problem is, i will go high overnight and wake up sky high, feel awful (mentally and physically) and set myself up for a rollercoaster of a day. Is that a lesser evil than the mental torture of a beep in the night? Maybe off during the day (when i am overwhelmed by the juxtaposition of it) and on during the night is a good balance….and just try and keep my eye on the ball during the day.

@ClaudnDaye

I’m really sorry you’re dealing with this — reading your post, the exhaustion and anger come through so clearly.

thank you for this.

Thinking about AI, i understand i should be able to use it to write a program that can take a big annoying weekend chore off my list…which is updating my monster ‘T1’ spreadsheet, which i have kept since 2011, containing data from various sources, all manually input:

• xDrip+: daily mean BG, daily SD, bolus/basal units, PGS
• Oura ring: daily resting HR
• TrainingPeaks: daily TSS, miles run
• My own records: mood score (out of 10) for morning/afternoon/evening

Attached a little snippet of it below.

The idea is to be able to chart the data to see trends/correlations etc, and supposedly help keep me on the straight and narrow. Ideally, i should do it each weekend (should only take 30mins or so) and that way i can address an upward drift (or other bad trend) the following week…a metaphorical ‘glance at the scales’, as if to prevent the onset of weight-gain.

The problem is, i get busy on other things in life and i let it slip…and beyond a month, it becomes a real pain to update as it takes ages.

Can ChatGPT help me write a program that can ‘do it for me’? It feels ambitious, as it would need access to apps on my phone etc, but almost anything feels possible these days. Any thoughts?

Alternatively, is there a way to quickly download data from these programmes (xDrip, Oura, Trainingpeaks) into an Excel sheet? then i can fairly quickly play around with it.

Or… i could learn to just not give a ****. Perhaps that’s a better, if defeatist/nihilistic, idea.

[john_coburg]

Interesting to see daily mood (inverted) and daily mean BG plotted together.

There is clearly two-way causation on that one.

[RachelMaraii]

@john_coburg

Can ChatGPT help me write a program that can ‘do it for me’? It feels ambitious, as it would need access to apps on my phone etc, but almost anything feels possible these days. Any thoughts?

Anything does feel possible these days… I’m AI curious, but not really AI literate haha. I follow the Rundown AI newsletter and the folks who run it sometimes talk about making health logs though. Might be a starting point.

@john_coburg

Thank you - good shout. i have done this. The problem is, i will go high overnight and wake up sky high, feel awful (mentally and physically) and set myself up for a rollercoaster of a day.

What type of insulin delivery are you using, MDI or pumping? The overnight automation is probably my favorite part of AID pumping, though I know it’s not for everyone. I can go to bed high and know that most of the time I’ll be back in target when I wake up. Honestly the AID handles the overnight highs way better than I do when I wake up at 1:00 a.m. annoyed about it and subsequently make inadvisable choices.

[ClaudnDaye]

AI is replacing Software engineer levels 1 and 2, in many organizations. In our own, we use Cursor and ChatGPT. If enterprise version, the data remains yours.

[TomH]

@john_coburg Lot’s of good ideas and recommendations above. As the responses show, you’re not alone in the feelings you have. I too, with pretty good control, experience the exasperation of alarms (particularly lows, but also highs) to the point of wanting to raise the alarm levels. That said, I don’t because of discussions on TCOYD.com by Drs Eddleman and Pettus. They encourage trying to look at alarms as an opportunity (something I fail at regularly…apparently just like yourself). My wife, while encouraging me otherwise, lets me get it out of my system and move on. But if you can’t move on, the by all means silence the alarms, but take action as well to add insulin if you’re high. Is it possible your ICR, ISF, etc. have changed? If so, test them and adjust as warranted. Have you been dosing for or become more sensitive to fat and protein? You may want to test this as well.

Just knowing you’re not alone in the frustrations will probably help some, but it wont cure the issue. It sounds like a lot of work and effort, and I wont sugar coat it, it is a lot of effort particularly given your other tasks. But, the benefits are worth trying the testing and adjusting your dosing.

We’re all here for the moral support and recommendations, so feel free to participate and don’t be a stranger!

[jbowler]

@john_coburg

helpfully warning me i am below 3.5 or above 12, and that i need to drop everything and do something about it.

Maybe, but I do that every day and I never get a beep out of xDrip+. I’m using the Dexcom kit but I don’t think it makes a difference; I thought xDrip+ has direct support for the Libre too (i.e. not via the woody the woodpecker companion app approach.)

When I dealt with the Dexcom app I simply turned the volume on the 'phone to 0. Possibly not an option in the City.

I have to admit I don’t know how I did it but this is my current Alert setting:

So far as I can tell the 'phone is not in silent mode, but this is perhaps the explanation:

Works for me, YDMMV.

IRC it comes from the “Snooze Alerts” menu entry here:

[jbowler]

@john_coburg

Interesting to see daily mood (inverted) and daily mean BG plotted together.

Yes, there’s a very clear correlation of mood and low/high BG. I always new about the low side, that’s obvious, but it took many years until my wife pointed out how bitchy I am when high.

@john_coburg

The problem is, i get busy on other things in life and i let it slip…and beyond a month, it becomes a real pain to update as it takes ages.

xDrip+ will download data to both NightScout and TidePool, which happens automagically in the crudcloud as well as to CSV (maybe?). I’ve yet to work out how to get exercise data exported, or added to the dataset. It’s perhaps the single most valuable thing NightScout or TidePool could add, well, after agreeing on a common data format…

That doesn’t help much. I’ve never used the xDrip+ in a way that is amenable to spreadsheet upload. I thought CSV upload was there somewhere but I can’t find it ATM.