4 ms·

Now imagine what it's like for someone with T1D to live alone, if you haven't yet been to a funeral for that. Every single time you go to sleep is a roll of the

by gowld 5y ago

Now imagine what it's like for someone with T1D to live alone, if you haven't yet been to a funeral for that. Every single time you go to sleep is a roll of the dice.

deleted 5y ago
[deleted]
gruez 5y ago
>Every single time you go to sleep is a roll of the dice. Isn't that the case even if you have someone sleeping beside you? I suppose it mitigate some risk on the off chance that your partner wakes up and notices you're sweating or whatever, but what if they're sound asleep? Does someone who's high/low on blood sugar exhibit symptoms that are easily picked up by a sleeping person?
- Trasmatta 5y ago
  The good news is that for most diabetics, your body will automatically wake you up for a hypo. It's a survival mechanism. But some people suffer from hypoglycemic unawareness, and their body doesn't wake them up. Most diabetics have CGMs these days, though, and somebody like that should be setting hypo / hyper alarms so that either them or their partner wakes up. (The problem there becomes false alarms and the subsequent alarm fatigue that results in you turning them all off.)
  - richie5um 5y ago
    “Most diabetics have CGMs these days” - not where I come from :-(
    - Trasmatta 5y ago
      You're right, the truth is probably actually that only a minority of T1Ds have CGMs. My post was a bit insensitive, not everyone has easy access to them.
      - techsupporter 5y ago
        What's even more frustrating is the disparity in who can get them and how even if they are cleared for use in your country. The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does. In Ireland, the Dexcom G6 system is available but the FreeStyle Libre 2, an updated version of the FreeStyle Libre with more frequent reads and better alarms (Libre vs Libre 2), is not. CGMs are available over-the-counter, just like finger stick machines, in a variety of countries like Canada and Ireland. But in the United States a prescription is required for any CGM even if insurance doesn't pay for it and insurance generally only pays for it once you are actively on full-time insulin treatment, so type-2 diabetics can't avail of insurance to reduce the cost of potentially not needing to go on recurring insulin by getting a handle on being pre-diabetic. (Plus many doctors won't write a CGM Rx for someone who isn't type-1 or very symptomatic type-2. This has resulted in nutritionist businesses springing up whose purpose is to turn a credit card charge into a prescription for a CGM.) But of course different countries have different regulatory systems, we all know that. This is to say that even when you find a system and method that has worked for others in your online community, that method might not be available to you, and it causes even more stress to have the idea, right or wrong, that a useful tool is just out of your grasp. And carbohydrates help you if you dare move between countries.
        tagh 5y ago
        >The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does. Only for under 21s, and only recently. Once you hit 21, the rug is pulled out from under you.
        smnrchrds 5y ago
        My province (Alberta) in Canada is just starting to cover CGM costa and only for under 18s. https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-devices-now-covered-for-alberta-children-with-diabetes-1.6346383 https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-d...
        5y ago
    - UnpossibleJim 5y ago
      My doctor had to fight to get me one. I workout and was highly insulin sensitive (she made me workout less and gain some weight by doing less cardio - drives me nuts, I liked running). The insurance companies didn't want to fork over for the upfront cost, even though I had been to the hospital several times for low blood sugars. This included a stroke caused by a severe low blood sugar (yes, I lived alone at the time, pre CGM. Coworkers called a friend who had a key). Granted this was 4 years ago, so I'm unsure how things have changed. The CGM is a game changer. I wish I had had it earlier. Would have kept me (hopefully) from a lot of issues and putting my friends and family through unnecessary pain.
      - sah24 5y ago
        Hi, do you live in the USA? I had a similar experience to you. I am considering doing a research project for grad school about patients in the USA who experienced insurance denials for CGMs.
        UnpossibleJim 5y ago
        I do live in the US. Yes. And actually, my endo is probably a better person to chat with. Let me drop her an email and see if she A) is allowed and B) has the time
        sah24 5y ago
        sweet, thanks!
      - sah24 5y ago
        P.S. feel free to email me at t1dresearchproject@gmail.com -- thanks
  - kelp 5y ago
    The alarm fatigue is no joke, and CGMs get less accurate the lower ones blood glucose goes, so false alarms on the low end are common. My wife has a Tandem T:Slim and Dexcom G6 and she can't turn off the urgent low alarm. The alarms drive her totally crazy. Though I'm happy to know at least the system will disable her basal rate if she's heading low.
noodleman 5y ago
This is a bit melodramatic. I've lived alone with T1D for the better part of a decade without any problem. I went to uni, alone, without any problems. Frankly, I think depending on other people is a liability. I can't count on my hands how many times I've had to explain to people that you don't give an unconsious diabetic insulin, you call an ambulance and follow the instructions you're given. I just don't trust the average person enough to burden them with the responsibility. The only people I would trust to look after my unconsious body during a severe hypo are medical professionals - and there are medical professionals that I still wouldn't trust! Yes, the maths is unavoidable. Diabetes burnout is real. But if you've it had for nearly 3 decades, like I have, then you learn coping strategies. My advice is to spend some time finding a specialist who listens and answers questions. Use the devices available to you and learn them well. Don't make changes to your insulin regimen when you're angry or hypo. Most importantly, don't strive for unattainable perfection.
- paulcole 5y ago
  Everybody’s T1D experience is different and it’s not that melodramatic. Before I had a CGM I went so low at night my partner had to call 911 in the morning. Sure I bounced back and got a CGM, but only because I could afford one. I was terrified of going to sleep at night without a handful of alarms set to wake me.
- lolc 5y ago
  Yes living alone with diabetes is fine given modern treatment and some robust habits. Here's the instruction to the people I know I will be spending longer stretches of time with: When I look very tired, disoriented, or talk incoherently: fetch orange juice or some other sugary drink. Make sure I drink it. When you find me unconscious: roll me on the side, call an ambulance. You can put sugar under my tongue but do keep watching me. If you feel confident, apply the syringe from the orange box in the fridge. Thankfully, none of this has played out so far. Except that I had to rely on friends a few times when my sugar ran out. That's already plenty scary.
1123581321 5y ago
It’s about a 3 in 100k chance you’ll die from hypoglycemia in your sleep over a year. So the die you are rolling every night has about ten million sides.

by gowld 5y ago

Now imagine what it's like for someone with T1D to live alone, if you haven't yet been to a funeral for that. Every single time you go to sleep is a roll of the dice.

deleted 5y ago

[deleted]

gruez 5y ago

>Every single time you go to sleep is a roll of the dice. Isn't that the case even if you have someone sleeping beside you? I suppose it mitigate some risk on the off chance that your partner wakes up and notices you're sweating or whatever, but what if they're sound asleep? Does someone who's high/low on blood sugar exhibit symptoms that are easily picked up by a sleeping person?

Trasmatta 5y ago
The good news is that for most diabetics, your body will automatically wake you up for a hypo. It's a survival mechanism. But some people suffer from hypoglycemic unawareness, and their body doesn't wake them up. Most diabetics have CGMs these days, though, and somebody like that should be setting hypo / hyper alarms so that either them or their partner wakes up. (The problem there becomes false alarms and the subsequent alarm fatigue that results in you turning them all off.)
- richie5um 5y ago
  “Most diabetics have CGMs these days” - not where I come from :-(
  - Trasmatta 5y ago
    You're right, the truth is probably actually that only a minority of T1Ds have CGMs. My post was a bit insensitive, not everyone has easy access to them.
    - techsupporter 5y ago
      What's even more frustrating is the disparity in who can get them and how even if they are cleared for use in your country. The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does. In Ireland, the Dexcom G6 system is available but the FreeStyle Libre 2, an updated version of the FreeStyle Libre with more frequent reads and better alarms (Libre vs Libre 2), is not. CGMs are available over-the-counter, just like finger stick machines, in a variety of countries like Canada and Ireland. But in the United States a prescription is required for any CGM even if insurance doesn't pay for it and insurance generally only pays for it once you are actively on full-time insulin treatment, so type-2 diabetics can't avail of insurance to reduce the cost of potentially not needing to go on recurring insulin by getting a handle on being pre-diabetic. (Plus many doctors won't write a CGM Rx for someone who isn't type-1 or very symptomatic type-2. This has resulted in nutritionist businesses springing up whose purpose is to turn a credit card charge into a prescription for a CGM.) But of course different countries have different regulatory systems, we all know that. This is to say that even when you find a system and method that has worked for others in your online community, that method might not be available to you, and it causes even more stress to have the idea, right or wrong, that a useful tool is just out of your grasp. And carbohydrates help you if you dare move between countries.
      - tagh 5y ago
        >The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does. Only for under 21s, and only recently. Once you hit 21, the rug is pulled out from under you.
        smnrchrds 5y ago
        My province (Alberta) in Canada is just starting to cover CGM costa and only for under 18s. https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-devices-now-covered-for-alberta-children-with-diabetes-1.6346383 https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-d...
      - 5y ago
  - UnpossibleJim 5y ago
    My doctor had to fight to get me one. I workout and was highly insulin sensitive (she made me workout less and gain some weight by doing less cardio - drives me nuts, I liked running). The insurance companies didn't want to fork over for the upfront cost, even though I had been to the hospital several times for low blood sugars. This included a stroke caused by a severe low blood sugar (yes, I lived alone at the time, pre CGM. Coworkers called a friend who had a key). Granted this was 4 years ago, so I'm unsure how things have changed. The CGM is a game changer. I wish I had had it earlier. Would have kept me (hopefully) from a lot of issues and putting my friends and family through unnecessary pain.
    - sah24 5y ago
      Hi, do you live in the USA? I had a similar experience to you. I am considering doing a research project for grad school about patients in the USA who experienced insurance denials for CGMs.
      - UnpossibleJim 5y ago
        I do live in the US. Yes. And actually, my endo is probably a better person to chat with. Let me drop her an email and see if she A) is allowed and B) has the time
        sah24 5y ago
        sweet, thanks!
    - sah24 5y ago
      P.S. feel free to email me at t1dresearchproject@gmail.com -- thanks
- kelp 5y ago
  The alarm fatigue is no joke, and CGMs get less accurate the lower ones blood glucose goes, so false alarms on the low end are common. My wife has a Tandem T:Slim and Dexcom G6 and she can't turn off the urgent low alarm. The alarms drive her totally crazy. Though I'm happy to know at least the system will disable her basal rate if she's heading low.

noodleman 5y ago

This is a bit melodramatic. I've lived alone with T1D for the better part of a decade without any problem. I went to uni, alone, without any problems. Frankly, I think depending on other people is a liability. I can't count on my hands how many times I've had to explain to people that you don't give an unconsious diabetic insulin, you call an ambulance and follow the instructions you're given. I just don't trust the average person enough to burden them with the responsibility. The only people I would trust to look after my unconsious body during a severe hypo are medical professionals - and there are medical professionals that I still wouldn't trust! Yes, the maths is unavoidable. Diabetes burnout is real. But if you've it had for nearly 3 decades, like I have, then you learn coping strategies. My advice is to spend some time finding a specialist who listens and answers questions. Use the devices available to you and learn them well. Don't make changes to your insulin regimen when you're angry or hypo. Most importantly, don't strive for unattainable perfection.

paulcole 5y ago
Everybody’s T1D experience is different and it’s not that melodramatic. Before I had a CGM I went so low at night my partner had to call 911 in the morning. Sure I bounced back and got a CGM, but only because I could afford one. I was terrified of going to sleep at night without a handful of alarms set to wake me.
lolc 5y ago
Yes living alone with diabetes is fine given modern treatment and some robust habits. Here's the instruction to the people I know I will be spending longer stretches of time with: When I look very tired, disoriented, or talk incoherently: fetch orange juice or some other sugary drink. Make sure I drink it. When you find me unconscious: roll me on the side, call an ambulance. You can put sugar under my tongue but do keep watching me. If you feel confident, apply the syringe from the orange box in the fridge. Thankfully, none of this has played out so far. Except that I had to rely on friends a few times when my sugar ran out. That's already plenty scary.

1123581321 5y ago

It’s about a 3 in 100k chance you’ll die from hypoglycemia in your sleep over a year. So the die you are rolling every night has about ten million sides.