The scary part is potentially getting caught out somewhere entirely alone and without an emergency snack.
So she had a low in the middle of the night, in the middle of nowhere. She was still verbal, but barely, and sent me to get her some snacks out of the bear canisters. However I didn't know where she'd hid them. After looking in the dark for a while I had to go back to the tent and try to get enough of an explanation out of her to find the hidden canisters. Fortunately she was abele to give me enough context that I was able to find the canisters and get her something to eat.
After that, I kept my own hidden stash of snacks in the tent and make sure she told me where the canisters were.
First thing I do every morning is A) put on pants B) put my keys and a tube of glucose tablets in my front pants pocket.
You can probably guess the expensive way that became ritual.
I’m a Type 1 diabetic (diagnosed in my 30s) and have been living with it for about a decade now. This really isn’t a “what if” situation. I know what will happen. I will die or hopefully just become incredibly ill.
It’s not really scary at all.
It’s just something I live with and prepare for as best I can. The one thing that I’ve learned from living with Type 1 is that all you can do is make the best decision you can in any given moment. My favorite doctor told me that diabetes is a disease that is all about making decisions. So is life, I guess.
"Identifying most people with T1D continue to secrete varying amounts of insulin and C-peptides for decades after initial diagnosis:
https://www.healthline.com/diabetesmine/dr-faustmans-controv...
See below for my deeper response on these and other issues:
It takes a genetic predisposition and a trigger - perhaps a virus? - for your immune system to start eating your pancreas' insulin-producing cells.
The old labels of "juvenile diabetes" etc. are as unhelpful as the notion it's caused by obesity.
I guess this is somewhat similar. Especially in places where your health insurance isn't a given.
I did, got him some OJ, and moved his car out of traffic. He went from incoherent and “drunk” to “seemed pretty OK” in just a couple of minutes before the medics even arrived. (He still took the ride, but it was none of my business at that point.)
I once walked home from work and apperantly didn't notice it, walked a few busy intersections and finally sat down somewhere where someone noticed me and called an ambulance who game me a glucose iv and everything was back to normal in a few minutes. So everything was still somewhat working and the "go home" signal was set but everything else was broken. Not everyone responds the same though and concerning cars I have at least some dextrose with me at all times and some in the car as well, as well as hidden at work and at home and in all my coats and backpacks and everywhere... OJ works quite well since it is readily available.
They did teach my parents one thing when handeling people with hypoglycemia: never try to stop them from consuming your entire fridge. Motor control is lacking and a young adult can easilly hurt you badly if you try to intervene.
The glass half-empty is...
I'd be much happier if I actually had an information device that I wore on my wrist that gave me all the data I need to manage T1D at a glance without igniting arguably the worst alert fatigue ever seen in healthcare when I have a smartphone, a pump, a CGM, and a watch which all go off in a discordant concert with one another with no clue that the other is alerting or any mechanism for stopping the noise save for turning off the device. In short, my wish is that the companies making these devices would give more care to the _design_ of the ecosystem around them, not just their individual device. I know, this is an emergent problem, but one that I've dealt with nightly at 3 AM when the devices go awry, not my diabetes, which is actually quite stable. The vast majority of my disease control and management issues arise from technology. Like insulin, it's the exogenous nature of the device that indicates there will be side effects, whether we design for them and manage them, or not. Unfortunately, patients pay with their user experience, all day, every day. There is no greater use case for the design of a killer app for the smart watch, i.e. wrist-worn information device, because I don't actually care what time it is. Rather, I'd be happy if the device actually made BG and related information the primary data currency of the device, not time. Time is actually secondary to the primacy of BG in this particular use case. I wear two watches to account for the fact that I need BG at a glance and the sensors for tracking exercise and metabolic impact. I've not seen a single device or interface that gives me what I want on one device at a glance without a byzantine UI.
https://i.imgur.com/Iv6V3ap.jpg
Date, time, glucose graph, steps, pulse, time from last value, last glucose value, delta from previous value, current pump basal rate and units of insulin from the base.
More than enough to understand your current situation. Battery life after few years of use about three days.
- mis-calibrate (first day's readings are garbage after new sensor insert)
- UI on the app will sometimes mis-render by 10-15 minutes. On several occasions I have been watching the graph while dosing, didn't see any change whatsoever after 30/45 minutes, and gave more insulin because of that information. 5 seconds later the screen changes and displays 15 minutes of BG going steeply down as I would expect, but now I have 2x the dose in me -_-
While I'm swimming in sensor readings the actual impact on my treatment quality has been close to nil, but it does make the people around me feel better. I feel as if my ability to sense my own levels has worsened because I default to trusting the graph over how I feel.
If my body wouldn't dislike those I would agree. But my experience is after about a day the results get so mixed up and unreliable that it's pretty much worthless. Hopefully they get better over time.
A bizarre phenomenon: feeling stuffed because you ate a huge meal, but having a hypo anyway. You don't want to eat anything because you're not hungry, but feel an overwhelming urge to stuff your face with sweets anyway.
I've been told that it can come on more suddenly and acutely for cyclists. As a marathoner I find that I feel it coming for several miles, which is tens of minutes. The activities are somewhat different so it's not impossible that they manifest differently.
But the basic idea is similar. You've got so much readily available glycogen in the body, and when it runs out, you have to shift to a different metabolic pathway -- and your body starts sending up warnings that you are rapidly running out of reserves and must stop now.
It's as much mental as physical at that point.
Unmanaged heartburn can lead to esophageal cancer, you shouldn't take it too lightly.
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.
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.
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.
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?
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.)
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.
Here in Europe we can simply get them from Abbot/Dexcom an ship them.
I can't make any promises, but I'm positive that I'll be able to develop a product that takes care of finding the correct insulin doses when giving activity and CGM data + meal information withing the next year's.
Only for under 21s, and only recently. Once you hit 21, the rug is pulled out from under you.
https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-d...
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.
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.
Wow. There is no need to dismiss the plight of cancer patients in relation to that of diabetes patients.
As a diabetic, if you go through the (granted, horrible) grind, you can be fairly certain you'll live for quite some time.
If you are a cancer patient, even if you are currently in remission or even 'cured', you don't know if the cancer will come back. And if it will respond to the same treatment and if not if there is an alternative. Your survival timeline basically becomes one giant question mark.
What I read in that comment about "being perfect every day" -- and what I notice about having T1D compared to the awful experiences of family w/ cancer -- is the distinction b/w experiencing suffering caused by some terrible external force (cancer) vs experiencing suffering that can be interpreted as caused by yourself. Or suffering for which it's always easy to partially judge yourself.
The reason this post (notice even the 'defensiveness' in its title) resonates so much w/ those w/ T1D is because this condition presents one with non-stop, 24/7 complicated problems to solve w/ serious consequences...and yet, any time something goes wrong, it still feels like it's kinda your fault. Like you made a mistake.
That is a non-stop mental grind that is unique to T1D and a small set of diseases. The uniqueness certainly does not make cancer less awful.
I had cancer, it was shit, and yes, there's always a chance its not done with me, but at least the cause of death won't be "finally forgot a snack".
I’m ashamed that I spent so much of my life ignorantly thinking that diabetes was some nuisance like heartburn where you moderate what you eat and maybe take some medication, rather than the endless grind of counting units and risking your life every time you need to eat, or exercise, or sleep.
I can’t imagine living like that, and I’m so, so sorry to you and to everyone else that has no choice. A cure for cancer is often held up as the holy grail of medicine, but even cancer patients don’t have to be perfect every day just to keep living.