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I'm a type 1 diabetic, and this was a helpful post at showing non diabetics why it is so. hard. Non diabetics typically think the difficult thing must be the sh

I'm a type 1 diabetic, and this was a helpful post at showing non diabetics why it is so. hard. Non diabetics typically think the difficult thing must be the shots and the finger pricks, right? Not really. The majority of diabetics get used to those things quickly (of course there are some of course that deal with a major major needle phobia that can make it even harder). The hard part is that it never ends. Almost every moment of every day, your brain has a background process running that's evaluating every decision in context of your diabetes. There are no breaks. Your prefrontal cortex now has to take the place of a previously complex and automatic bodily process. It's the last thing you think about when you go to bed and it's the first thing you think about when you wake up. It's what you think about when you want to go on a walk, are about to enter a meeting, go into an interview, get on a plane, take a shower. It's usually little things: "okay, where am I at now? which direction is it going? when did I last eat? do I have snacks ready? do I have enough insulin for the day? what if I start to go low during this meeting? should I pop some carbs and run high for this interview, so I don't risk a hypo partway through? why am I going low right now when I took the same dose I took yesterday for the same meal? why am I now skyrocketing for no discernible reason, I didn't even eat anything? shoot, I'm starting to hypo out of nowhere in the middle of this great conversation, which I now have to interrupt to eat a snack and recover for 15 minutes. I fell asleep with a perfect BG, but now I'm awake at 2AM half delirious because my BG fell all the way down to 50, and I'm in the kitchen shoving cookies down my throat because hypoglycemia activates a survival instinct to EAT EVERYTHING that's extremely hard to control, and I know that I'm gonna shoot all the way up to 250 shortly, which I'll have to treat with insulin, and I'm basically not going to get any sleep tonight". And then the math often doesn't make any sense. There are so many factors that effect it. One day the same number of carbs + insulin may make you go high, and the next low, because of other environmental factors. (See the "42 factors that effect blood glucose" chart in the post.) You're constantly having to adjust. I'm literally crying while writing this post, because it's so exhausting and it never ends.

The_rationalist 5y ago
jacquesm 5y ago
Continuous delivery closed loop delivery systems are in the works, are they not?
brainlessdev 5y ago
Although I haven't experienced this first-hand, my partner has T1D and I can see her reflected in everything you say. I'm hoping for a near future where technology paliates some of the dread of living with T1D. Some lines of research, such as implantable insuling-producing islets [1] seem promising, at least to someone without the chops to judge what's going on. [1]: https://www.clinicaltrials.gov/ct2/show/NCT03513939 https://www.clinicaltrials.gov/ct2/show/NCT03513939
- Trasmatta 5y ago
  Thanks for the kinds words. The primary problem with those types of treatments is you have to be on immunosuppressants, or the immune system just kills the cells again. That type of treatment is typically not recommended unless the patient is already on immunosuppressants, or has extreme hypoglycemia unawareness, or extreme needle phobia. Immunosuppressants are typically considered a worse outcome than properly treating T1D with insulin + CGM. For the same reason, sometimes T1D's will get a pancreas transplant if they are also getting another required transplant that will require immunosuppressants. I think the best hope in the next 50-100 years or so is continued development and improvement of closed loop systems. Eventually we should get to a point where highly sophisticated closed loop artificial pancreases can automate much of the process away. This will improve treatment and long term health outcomes, but will still require a fairly significant level of maintenance and oversight on the part of the patient (or their parent). There's a lot of really promising work being done there.
  - brainlessdev 5y ago
    I've been following the press about closed loop artificial pancreases closely, too. Currently, the open-source solutions there are require using insulin pumps that are pretty big and for some, that's not a choice they're ready to make. I too hope this tech continues to advance quickly.
    - Trasmatta 5y ago
      The Omnipod 5 just received FDA approval, and looks really cool. I'm going to wait a bit and see reactions from other diabetics, though, before I jump onboard.
coldpie 5y ago
Same here. 100% dead accurate description. > what if I start to go low during this meeting? should I pop some carbs and run high for this interview, so I don't risk a hypo partway through? Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times.
- Trasmatta 5y ago
  Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds. When I spot somebody else in public with a CGM or a pump, it's just that instant feeling of "hey, we know nothing about each other, but we have a very intimate understanding of each other's suffering". > Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times. Haha, yeah, this is one of those things that every T1D has had to do at some point, that non diabetics would probably be shocked by. There are just times when you can't risk going low. Going high ain't great, but it at least doesn't involve the immediate danger that a hypo at just the wrong moment does...
  - baseballdork 5y ago
    I did this applying for an internship at Microsoft. First big company interview for me and I didn't realize they would be taking me to lunch. The interviews after lunch were miserable as I was dangerously high.
  - coldpie 5y ago
    > Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds. On that note, feel free to send me an email if you want. Or not, no pressure. (I would've sent you one, but your profile is empty :) )
FunnyLookinHat 5y ago
I've been diagnosed with gastroparesis [1], and reading this gave me the exact same reaction! Almost all of my day is consumed with "what did I eat most recently? when should I eat next? How much? What am I short on for today? Protein? Carbs?" It's mentally exhausting. I'm thankful though that I only have to be concerned with "how much I can eat in a day" and there is no upper threshold. Lately I've been thinking about T1D and similar issues that have a high focus on managing food intake, and I completely empathize with you and everyone else who has to do this. If anyone reading this struggles with gastroparesis I'd love to chat about diet choices that have worked for me. Contact info in my profile. 1) https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787#:~:text=Gastroparesis%20is%20a%20condition%20that,food%20through%20your%20digestive%20tract https://www.mayoclinic.org/diseases-conditions/gastroparesis....
peterb 5y ago
This.
berkes 5y ago
> a survival instinct to EAT EVERYTHING that's extremely hard to control T1 here too. The weird part about this, is that it happens while you are aware of it. My brain: "hey, you're doing it again. stop it. You know it'll end bad". my hand: "nope. here's more cookies".
- Trasmatta 5y ago
  100%. A minor low doesn't cause this reaction from me, but at a certain point the survival instinct kicks into gear so heavily there's almost nothing you can do until your BG starts to rise, even when you know you've overdone it. It's the real life experience of this Frog and Toad meme: https://i.imgur.com/YdSSscE.png https://i.imgur.com/YdSSscE.png
- Sharlin 5y ago
  And of course, those are both your brain. The self-aware rational parts just aren't always in charge (heck, I'm not sure if they're even in charge most of the time, no matter what they would like to think).
- lolc 5y ago
  Eh, don't feel bad about the inevitable. My conscious self knows well to just count the carbs when I'm too low to behave. At least then I'll know how much insulin to dose when the curve ticks upwards again.
KetoType1 5y ago
The secret to managing Type 1 Diabetes is a ketogenic diet. You will observe extreme stability of blood glucose (low variance) and because the brain uses ketones as fuel, occasional hypoglycemia will be an easily-managed non-event. You should get most of your calories from olive oil and nuts. Protein intake should be just as much as you need. Excess protein causes blood glucose instability. Carbohydrate intake should be as low as possible. Here is a sketch of a ketogenic diet that works long-term: - 2 eggs over medium with 4 tablespoons of olive oil - walnuts/almonds/pecans with a little cheese - hazelnuts, peanuts, macadamias for hunger - a little chia seed (2 tablespoons) - salad with avocado (14g of fat) and 9 tablespoons of olive oil, with vinegar The salad is by far the largest meal of the day should include wide variety of vegetables. Leafy greens, broccoli, brussels sprouts, zucchini, tomato, etc. Add walnuts. Get a lot of salt. Take a multivitamin and fish oil capsules. Once a week, eat a burger with no bun. Cheese and meat. This should be eaten after hard exercise (e.g., a hike). You might eat other cheat foods (e.g., seafood, steak) but avoid carbohydrates.
- com2kid 5y ago
  I'm vouching for this because there is indeed a community of type 1 and type 2 diabetics using keto for management. Obviously it isn't a one size fits all approach, and the above poster could have been a bit more diplomatic, but IMHO it is worth discussing treatments that have been demonstrated to work.
  - KetoType1 5y ago
    - jacquesm 5y ago
      > It will solve all your diabetes problems. This is an overstatement, to put it mildly, at best you can say that it works for you and for those for whom it also worked after they have put it to the test. But it does not work for everybody and you shouldn't make unqualified statements like that. Here is a much better (and much better qualified) picture: https://www.healthline.com/nutrition/keto-diet-diabetes-type-1#insulin https://www.healthline.com/nutrition/keto-diet-diabetes-type...
barbazoo 5y ago
This all sounds really really hard, I'm sorry you have to go through that.
pixl97 5y ago
Continuous blood glucose monitor and insulin pump. It's reduce the stress and the nearly dying incidents dramatically. The bigger concern for me in my life now is having a backup carbohydrate supply on me so if I go do something like hiking that I have enough glucose to make it back to the next carbohydrate source. Of course being able to even afford this in the US requires a certain level of privilege. Supplies are very expensive.
- gowld 5y ago
  If you have an insulin pump, can you also have a glucose pump?
  - pimeys 5y ago
    No. But a hormone called glucagon is used in some pumps. It puts your liver to produce glucose.
  - cadr 5y ago
    Or a glucagon pump: https://beyondtype1.org/future-artificial-pancreas/ https://beyondtype1.org/future-artificial-pancreas/ (causes your liver to release its glucose)
    - kelp 5y ago
      Thanks for sharing this. I wasn't aware of this, going to keep on eye on it.
      - DavideNL 5y ago
        In The Netherlands there’s a group of a few 100 people using a device like this already: http://inredadiabetic.nl/en_GB/ http://inredadiabetic.nl/en_GB/ It’s sort of in a testing phase…
csnover 5y ago
One of the scariest experiences of my life was going on a walk after lunch with someone who had T1D and miscalculated their insulin dose. They went from totally fine, to saying “I don’t feel well, we need to head back”, to sweaty and sheet white and barely conscious within just a few minutes. The terror I felt as we waited for the doors of the lift to open so he could get to his emergency food is burned into my brain. 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.
- 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.)
arka2147483647 5y ago
I have had Type 1 for 30 years. To be honest, i don't do the math. I choose the amount of units to inject by feel. I mean, i know by eating a banana, i get something like 20g of carbohydrates, and i should take 3u. But if i feel, that the correct dose is 6 units, then i take that. I cant really explain it. But i kind of feel the state, where i am going, and can adjust instinctively. Works more often than not. I have never passed out. Edit: I measure blood sugar A LOT, though. Most important things are what i think as the Morning Gate, and the Night Gate. For Night, must have blood sugar under 10mmol/l. Preferably without pending effects such as food or recent injection. If i get that right, the night blood sugar is steady. In the morning, must account for the morning blood sugar raise phenomenon.
- Trasmatta 5y ago
  I'm at 10 years, and this is basically how I do it as well. The math just doesn't work, because there are too many factors at play, most of which you don't even know about, and can't plug into a simple equation. You might have the exact same meal and the exact same insulin dosage on two different days, and go low on one and high on the other. You eventually gain an instinct for it. Doesn't always work, but for me it works better than the formulas...
- emj 5y ago
  > I measure blood sugar A LOT, though. That is the most important part, you can really live a good life if you have that. I hope we get more powerfull and cheap way to do that continously. At the momemnt it's at least 300 USD a month for a CGM device that can measure every five minutes. It's abit like monitoring traffic load and adding more servers as you go, except too many servers kill you. That with knowing how you react to changes in life works wonders, e.g. exercise, eating fat foods, sitting all day.
  - arka2147483647 5y ago
    Well, I have had the incredible luxury of being born in Finland, so state/municipality pays everything. Insulin, Glucose-test-supplies, Doctors. I truly fell sad when i hear what US based persons have to go through. Though, i suppose i pay it in taxes :) About devices.. The first Glucose-test-device (what are they even called in english) took 5min to process the results. Current one is 5sec. A massive improvement in both speed and accuracy in these things. I hope a good non-invasive device is developed, though i'm not sure it is essential, for me anyways.
grahar64 5y ago
Having an 18 month old means we are in full control of everything he does and eats and doses and even with all that control we see wild swings and weird shit every day. Having all the energy needed to manage T1D and the self control to do it is superhuman. I wrote this post mostly because I didn’t know that before and I want more people to know. You are doing great.
- aarondf 5y ago
  I'm a dad to 9 month old twins and I'm a Type 1 Diabetic. The picture of you and your son in that hospital bed broke me. You're doing great.
- Trasmatta 5y ago
  Thank you! Being a parent of a T1D (especially an infant) is also a monumentally stressful task, and your post shows you're doing a great job. Keep up the good work, and please take care of yourself as well.
osrec 5y ago
My sister is T1 diabetic (diagnosed at 11). Your description is extremely accurate. I used to think that if you control all the parameters, then you can control diabetes. Thinking in this way is incorrect, and my lack of understanding caused a bunch of arguments between me and my sister. I wanted her blood sugars to be better, and assumed her bad blood sugar days were caused by poor control. They weren't, and quite honestly, only God knows the real cause. I was pretty ignorant about what I didn't know. My sister is 32 now, and I feel like she's got a very good handle on her condition in the last decade or so. It is a continual struggle, but I'm proud of the fact that she now has mostly good days, with the occasional bad day here and there.
richie5um 5y ago
Thank you for sharing. As a T1 diabetic too, I was reading this nodding my head all the way through.
FalconSensei 5y ago
I wake up at the same time and eat the same thing every weekday morning. Still, my bg at noon will range from 3 to 12. This after having this thing for 17 years. Yeah, it's hard. Edit: On the 42 factors, during-sleep BG is either stable or up. For me it's either side or down (but occasionally up). I do have the 'pre-sleep' BG that usually goes down, right after brushing my teeth (is it post-brushing then?), which is a well-known factor on Reddit. Basically, doesn't matter if I'm going to sleep at 10pm or 1am. I check my BG, it's 8, arrow straight or even up (CGM indicates the trend). Brush my teeth and check again, 7 with arrow straight down to the floor :/
shadowtree 5y ago
Non-zero chance you might see a cure for type-1 in your lifetime. https://www.clinicaltrialsarena.com/analysis/vertex-stem-cell-therapy-diabetes-cure/ https://www.clinicaltrialsarena.com/analysis/vertex-stem-cel... It's a stem cell therapy, in human trials (not the usual "in mice" crap). A single patient already had their diabetes disappear: https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-therapy-vx-880-restores-islet-cell-function-single-patient https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-t... The downside of stemcell therapy is that it is essentially an organ transplant, aka requires immunosuppressants, for life.
- westoncb 5y ago
  I wonder if there's any good reason to reduce my pessimism about it: I can't help but think there are such strong economic incentives against having a cure (vs ongoing treatment) that it's very unlikely to become available during my lifetime.
  - R0b0t1 5y ago
    I don't want to feed your pessimism too much but I think the general culture of being too reserved with funding and testing is going to do more harm than that.
  - kelp 5y ago
    I don't know much about medical research, but I've looked into some of these trials. They are generally being done by startups and not the established players who sell the diabetes management stuff. So think disruptive tech. A new player comes into the market with something that obsoletes the old tech, and maybe destroys a whole market. But that new player makes their own money off it. So yeah, maybe Tandem, Dexcom and Medtronic don't have a big incentive. But someone else can make some real money if they can find a cure or novel treatment that obsoletes all those others things.
- mnw21cam 5y ago
  The reason for the immunosuppressants is not the same as for a classic organ transplant. For a normal organ transplant, you need immunosuppressants because otherwise the body will recognise the new organ as being a foreign body that it doesn't recognise as self. For a stem cell transplant, the immune system has already gone around destroying every pancreatic beta cell it can find. The immune system is primed, and it absolutely recognises beta cells as something to destroy. The end goal is to encapsulate the inserted beta cells in a membrane that allows glucose in and insulin out, but keeps the immune system away.
prmph 5y ago
Is it not possible to have a device always connected to the bloodstream, with a replenishable supply of glucose and insulin in different compartments, that periodically checks the blood sugar level, and injects what is appropriate to keep it normal?
- jacquesm 5y ago
  This is either in trial or already in distribution, it is essentially a metered insulin pump coupled with a continuous glucose monitor. https://www.diabetes.org.uk/guide-to-diabetes/diabetes-technology/closed-loop-systems https://www.diabetes.org.uk/guide-to-diabetes/diabetes-techn...
- deleted 5y ago
  [deleted]
- kelp 5y ago
  This kind of exists, and here is one such system: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pump/control-iq https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu... The pump delivers insulin and gets blood glucose readings from a CGM (continuous glucose monitor) over bluetooth. Then the pump can make decisions such as stopping insulin delivery if you're going to go low, doing small correction boluses, and adjusting basal rate. However it's far from perfect and still needs a lot of management. My wife has T1D and was recently pregnant, which really raises the bar on how tightly you need to control your diabetes. She ended up mostly micromanaging it all herself rather than trusting Control IQ to do the right thing. The other issue is CGMs are not that accurate, so these systems are making decisions based on not great data.
  - code_duck 5y ago
    I have a tandem pump. The problem I see is that you still have to wait an hour for the insulin to take affect. And like you say, it’s based on CGM data which is not always accurate enough. Perhaps in the future there will be implants that deliver insulin in a more direct route, such as intravenous or intramuscular. That would also make an overdose more dangerous, though.
Mezzie 5y ago
> I'm literally crying while writing this post, because it's so exhausting and it never ends. If it helps (?), I also broke down crying reading this, because I have MS and it is so true to my experience. I've never been able to communicate well how exhausting the constant mental load is, and I imagine it's even worse for people with T1 diabetes since blood glucose can get out of whack a lot more quickly than my immune system can make more holes in my nervous system. You nailed it on the head exactly with the constant balancing. "Okay, so I didn't sleep for crap last night due to symptoms. Do I have some caffeine and spend the rest of the day in pain due to the increased muscle spasticity? Maybe if I have 3 cups of coffee instead of 1 and also take some of my muscle spasticity medication, I'll be able to stay awake but not be in too much pain. Except if I dip into what are supposed to be nighttime pain meds too often, I might run out of Tizanidine. When will my insurance refill? How much will it cost out of pocket when I have a bad pain month?" And then I get stressed out about the MS, and we're supposed to avoid stress, so then I stress about my stress. Fantastic. And all until the day we die.
- mkrecny 5y ago
  I'm sorry
- mst 5y ago
  Oof. Even without any physical issues if I get stressed about stuff in a way that makes it hard to concentrate I usually then manage to do the 'stress about my stress' thing on top of that and damn but that's no fun at all.
  - Mezzie 5y ago
    Are you tired of boring, old stress? Try new and improved META-stress: all the worrying and none of those pesky resolutions or good things!
btowngar 5y ago
One further thing - the article doesn’t talk much about the physical response to wearing a CGM such as the extreme skin irritation some people get from the adhesive. Or the fact that the CGM reading could be way off the reading you get from a finger prick test - which can in turn vary significantly from a lab test result!
- consp 5y ago
  I did the test once with most meters I still had laying around: ballpark correct but according to them my blood sugar level was between 3.8 and about 7 mmol/l. I have one which is very finacky in the 4.0 and lower range which is annoying if you want to know if it really starting hypoglycemia or you are just tired.
sdze 5y ago
Would it not be better to eat only once a day so the potential for errors is minimised? Skip carbs altogether?
dot1x 5y ago
A solution to this (from a non-diabetic) would maybe to always be eating a keto-like diet. It's not easy, but far easier than having to constantly juggle 100s of carb combinations. "Diet" might even be the wrong word, more like a lifestyle.
spanktheuser 5y ago
It’s just insane. I had no idea until Covid triggered the onset of type 1 diabetes in my niece. I was fortunate to spent time with her a year later. Her mother and father seemed to have aged a decade from the stress. I can only hope that the AI monitored artificial pancreas tech currently in testing is approved for general use soon. The cognitive load of monitoring and treatment is insane; the impact of any unanticipated variance so severe.

The_rationalist 5y ago

jacquesm 5y ago

Continuous delivery closed loop delivery systems are in the works, are they not?

brainlessdev 5y ago

Although I haven't experienced this first-hand, my partner has T1D and I can see her reflected in everything you say. I'm hoping for a near future where technology paliates some of the dread of living with T1D. Some lines of research, such as implantable insuling-producing islets [1] seem promising, at least to someone without the chops to judge what's going on. [1]: https://www.clinicaltrials.gov/ct2/show/NCT03513939 https://www.clinicaltrials.gov/ct2/show/NCT03513939

Trasmatta 5y ago
Thanks for the kinds words. The primary problem with those types of treatments is you have to be on immunosuppressants, or the immune system just kills the cells again. That type of treatment is typically not recommended unless the patient is already on immunosuppressants, or has extreme hypoglycemia unawareness, or extreme needle phobia. Immunosuppressants are typically considered a worse outcome than properly treating T1D with insulin + CGM. For the same reason, sometimes T1D's will get a pancreas transplant if they are also getting another required transplant that will require immunosuppressants. I think the best hope in the next 50-100 years or so is continued development and improvement of closed loop systems. Eventually we should get to a point where highly sophisticated closed loop artificial pancreases can automate much of the process away. This will improve treatment and long term health outcomes, but will still require a fairly significant level of maintenance and oversight on the part of the patient (or their parent). There's a lot of really promising work being done there.
- brainlessdev 5y ago
  I've been following the press about closed loop artificial pancreases closely, too. Currently, the open-source solutions there are require using insulin pumps that are pretty big and for some, that's not a choice they're ready to make. I too hope this tech continues to advance quickly.
  - Trasmatta 5y ago
    The Omnipod 5 just received FDA approval, and looks really cool. I'm going to wait a bit and see reactions from other diabetics, though, before I jump onboard.

coldpie 5y ago

Same here. 100% dead accurate description. > what if I start to go low during this meeting? should I pop some carbs and run high for this interview, so I don't risk a hypo partway through? Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times.

Trasmatta 5y ago
Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds. When I spot somebody else in public with a CGM or a pump, it's just that instant feeling of "hey, we know nothing about each other, but we have a very intimate understanding of each other's suffering". > Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times. Haha, yeah, this is one of those things that every T1D has had to do at some point, that non diabetics would probably be shocked by. There are just times when you can't risk going low. Going high ain't great, but it at least doesn't involve the immediate danger that a hypo at just the wrong moment does...
- baseballdork 5y ago
  I did this applying for an internship at Microsoft. First big company interview for me and I didn't realize they would be taking me to lunch. The interviews after lunch were miserable as I was dangerously high.
- coldpie 5y ago
  > Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds. On that note, feel free to send me an email if you want. Or not, no pressure. (I would've sent you one, but your profile is empty :) )

FunnyLookinHat 5y ago

I've been diagnosed with gastroparesis [1], and reading this gave me the exact same reaction! Almost all of my day is consumed with "what did I eat most recently? when should I eat next? How much? What am I short on for today? Protein? Carbs?" It's mentally exhausting. I'm thankful though that I only have to be concerned with "how much I can eat in a day" and there is no upper threshold. Lately I've been thinking about T1D and similar issues that have a high focus on managing food intake, and I completely empathize with you and everyone else who has to do this. If anyone reading this struggles with gastroparesis I'd love to chat about diet choices that have worked for me. Contact info in my profile. 1) https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787#:~:text=Gastroparesis%20is%20a%20condition%20that,food%20through%20your%20digestive%20tract https://www.mayoclinic.org/diseases-conditions/gastroparesis....

peterb 5y ago

This.

berkes 5y ago

> a survival instinct to EAT EVERYTHING that's extremely hard to control T1 here too. The weird part about this, is that it happens while you are aware of it. My brain: "hey, you're doing it again. stop it. You know it'll end bad". my hand: "nope. here's more cookies".

Trasmatta 5y ago
100%. A minor low doesn't cause this reaction from me, but at a certain point the survival instinct kicks into gear so heavily there's almost nothing you can do until your BG starts to rise, even when you know you've overdone it. It's the real life experience of this Frog and Toad meme: https://i.imgur.com/YdSSscE.png https://i.imgur.com/YdSSscE.png
Sharlin 5y ago
And of course, those are both your brain. The self-aware rational parts just aren't always in charge (heck, I'm not sure if they're even in charge most of the time, no matter what they would like to think).
lolc 5y ago
Eh, don't feel bad about the inevitable. My conscious self knows well to just count the carbs when I'm too low to behave. At least then I'll know how much insulin to dose when the curve ticks upwards again.

KetoType1 5y ago

The secret to managing Type 1 Diabetes is a ketogenic diet. You will observe extreme stability of blood glucose (low variance) and because the brain uses ketones as fuel, occasional hypoglycemia will be an easily-managed non-event. You should get most of your calories from olive oil and nuts. Protein intake should be just as much as you need. Excess protein causes blood glucose instability. Carbohydrate intake should be as low as possible. Here is a sketch of a ketogenic diet that works long-term: - 2 eggs over medium with 4 tablespoons of olive oil - walnuts/almonds/pecans with a little cheese - hazelnuts, peanuts, macadamias for hunger - a little chia seed (2 tablespoons) - salad with avocado (14g of fat) and 9 tablespoons of olive oil, with vinegar The salad is by far the largest meal of the day should include wide variety of vegetables. Leafy greens, broccoli, brussels sprouts, zucchini, tomato, etc. Add walnuts. Get a lot of salt. Take a multivitamin and fish oil capsules. Once a week, eat a burger with no bun. Cheese and meat. This should be eaten after hard exercise (e.g., a hike). You might eat other cheat foods (e.g., seafood, steak) but avoid carbohydrates.

com2kid 5y ago
I'm vouching for this because there is indeed a community of type 1 and type 2 diabetics using keto for management. Obviously it isn't a one size fits all approach, and the above poster could have been a bit more diplomatic, but IMHO it is worth discussing treatments that have been demonstrated to work.
- KetoType1 5y ago
  - jacquesm 5y ago
    > It will solve all your diabetes problems. This is an overstatement, to put it mildly, at best you can say that it works for you and for those for whom it also worked after they have put it to the test. But it does not work for everybody and you shouldn't make unqualified statements like that. Here is a much better (and much better qualified) picture: https://www.healthline.com/nutrition/keto-diet-diabetes-type-1#insulin https://www.healthline.com/nutrition/keto-diet-diabetes-type...

barbazoo 5y ago

This all sounds really really hard, I'm sorry you have to go through that.

pixl97 5y ago

Continuous blood glucose monitor and insulin pump. It's reduce the stress and the nearly dying incidents dramatically. The bigger concern for me in my life now is having a backup carbohydrate supply on me so if I go do something like hiking that I have enough glucose to make it back to the next carbohydrate source. Of course being able to even afford this in the US requires a certain level of privilege. Supplies are very expensive.

gowld 5y ago
If you have an insulin pump, can you also have a glucose pump?
- pimeys 5y ago
  No. But a hormone called glucagon is used in some pumps. It puts your liver to produce glucose.
- cadr 5y ago
  Or a glucagon pump: https://beyondtype1.org/future-artificial-pancreas/ https://beyondtype1.org/future-artificial-pancreas/ (causes your liver to release its glucose)
  - kelp 5y ago
    Thanks for sharing this. I wasn't aware of this, going to keep on eye on it.
    - DavideNL 5y ago
      In The Netherlands there’s a group of a few 100 people using a device like this already: http://inredadiabetic.nl/en_GB/ http://inredadiabetic.nl/en_GB/ It’s sort of in a testing phase…

csnover 5y ago

One of the scariest experiences of my life was going on a walk after lunch with someone who had T1D and miscalculated their insulin dose. They went from totally fine, to saying “I don’t feel well, we need to head back”, to sweaty and sheet white and barely conscious within just a few minutes. The terror I felt as we waited for the doors of the lift to open so he could get to his emergency food is burned into my brain. 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.

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.)

arka2147483647 5y ago

I have had Type 1 for 30 years. To be honest, i don't do the math. I choose the amount of units to inject by feel. I mean, i know by eating a banana, i get something like 20g of carbohydrates, and i should take 3u. But if i feel, that the correct dose is 6 units, then i take that. I cant really explain it. But i kind of feel the state, where i am going, and can adjust instinctively. Works more often than not. I have never passed out. Edit: I measure blood sugar A LOT, though. Most important things are what i think as the Morning Gate, and the Night Gate. For Night, must have blood sugar under 10mmol/l. Preferably without pending effects such as food or recent injection. If i get that right, the night blood sugar is steady. In the morning, must account for the morning blood sugar raise phenomenon.

Trasmatta 5y ago
I'm at 10 years, and this is basically how I do it as well. The math just doesn't work, because there are too many factors at play, most of which you don't even know about, and can't plug into a simple equation. You might have the exact same meal and the exact same insulin dosage on two different days, and go low on one and high on the other. You eventually gain an instinct for it. Doesn't always work, but for me it works better than the formulas...
emj 5y ago
> I measure blood sugar A LOT, though. That is the most important part, you can really live a good life if you have that. I hope we get more powerfull and cheap way to do that continously. At the momemnt it's at least 300 USD a month for a CGM device that can measure every five minutes. It's abit like monitoring traffic load and adding more servers as you go, except too many servers kill you. That with knowing how you react to changes in life works wonders, e.g. exercise, eating fat foods, sitting all day.
- arka2147483647 5y ago
  Well, I have had the incredible luxury of being born in Finland, so state/municipality pays everything. Insulin, Glucose-test-supplies, Doctors. I truly fell sad when i hear what US based persons have to go through. Though, i suppose i pay it in taxes :) About devices.. The first Glucose-test-device (what are they even called in english) took 5min to process the results. Current one is 5sec. A massive improvement in both speed and accuracy in these things. I hope a good non-invasive device is developed, though i'm not sure it is essential, for me anyways.

grahar64 5y ago

Having an 18 month old means we are in full control of everything he does and eats and doses and even with all that control we see wild swings and weird shit every day. Having all the energy needed to manage T1D and the self control to do it is superhuman. I wrote this post mostly because I didn’t know that before and I want more people to know. You are doing great.

aarondf 5y ago
I'm a dad to 9 month old twins and I'm a Type 1 Diabetic. The picture of you and your son in that hospital bed broke me. You're doing great.
Trasmatta 5y ago
Thank you! Being a parent of a T1D (especially an infant) is also a monumentally stressful task, and your post shows you're doing a great job. Keep up the good work, and please take care of yourself as well.

osrec 5y ago

My sister is T1 diabetic (diagnosed at 11). Your description is extremely accurate. I used to think that if you control all the parameters, then you can control diabetes. Thinking in this way is incorrect, and my lack of understanding caused a bunch of arguments between me and my sister. I wanted her blood sugars to be better, and assumed her bad blood sugar days were caused by poor control. They weren't, and quite honestly, only God knows the real cause. I was pretty ignorant about what I didn't know. My sister is 32 now, and I feel like she's got a very good handle on her condition in the last decade or so. It is a continual struggle, but I'm proud of the fact that she now has mostly good days, with the occasional bad day here and there.

richie5um 5y ago

Thank you for sharing. As a T1 diabetic too, I was reading this nodding my head all the way through.

FalconSensei 5y ago

I wake up at the same time and eat the same thing every weekday morning. Still, my bg at noon will range from 3 to 12. This after having this thing for 17 years. Yeah, it's hard. Edit: On the 42 factors, during-sleep BG is either stable or up. For me it's either side or down (but occasionally up). I do have the 'pre-sleep' BG that usually goes down, right after brushing my teeth (is it post-brushing then?), which is a well-known factor on Reddit. Basically, doesn't matter if I'm going to sleep at 10pm or 1am. I check my BG, it's 8, arrow straight or even up (CGM indicates the trend). Brush my teeth and check again, 7 with arrow straight down to the floor :/

shadowtree 5y ago

Non-zero chance you might see a cure for type-1 in your lifetime. https://www.clinicaltrialsarena.com/analysis/vertex-stem-cell-therapy-diabetes-cure/ https://www.clinicaltrialsarena.com/analysis/vertex-stem-cel... It's a stem cell therapy, in human trials (not the usual "in mice" crap). A single patient already had their diabetes disappear: https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-therapy-vx-880-restores-islet-cell-function-single-patient https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-t... The downside of stemcell therapy is that it is essentially an organ transplant, aka requires immunosuppressants, for life.

westoncb 5y ago
I wonder if there's any good reason to reduce my pessimism about it: I can't help but think there are such strong economic incentives against having a cure (vs ongoing treatment) that it's very unlikely to become available during my lifetime.
- R0b0t1 5y ago
  I don't want to feed your pessimism too much but I think the general culture of being too reserved with funding and testing is going to do more harm than that.
- kelp 5y ago
  I don't know much about medical research, but I've looked into some of these trials. They are generally being done by startups and not the established players who sell the diabetes management stuff. So think disruptive tech. A new player comes into the market with something that obsoletes the old tech, and maybe destroys a whole market. But that new player makes their own money off it. So yeah, maybe Tandem, Dexcom and Medtronic don't have a big incentive. But someone else can make some real money if they can find a cure or novel treatment that obsoletes all those others things.
mnw21cam 5y ago
The reason for the immunosuppressants is not the same as for a classic organ transplant. For a normal organ transplant, you need immunosuppressants because otherwise the body will recognise the new organ as being a foreign body that it doesn't recognise as self. For a stem cell transplant, the immune system has already gone around destroying every pancreatic beta cell it can find. The immune system is primed, and it absolutely recognises beta cells as something to destroy. The end goal is to encapsulate the inserted beta cells in a membrane that allows glucose in and insulin out, but keeps the immune system away.

prmph 5y ago

Is it not possible to have a device always connected to the bloodstream, with a replenishable supply of glucose and insulin in different compartments, that periodically checks the blood sugar level, and injects what is appropriate to keep it normal?

jacquesm 5y ago
This is either in trial or already in distribution, it is essentially a metered insulin pump coupled with a continuous glucose monitor. https://www.diabetes.org.uk/guide-to-diabetes/diabetes-technology/closed-loop-systems https://www.diabetes.org.uk/guide-to-diabetes/diabetes-techn...
deleted 5y ago
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kelp 5y ago
This kind of exists, and here is one such system: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pump/control-iq https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu... The pump delivers insulin and gets blood glucose readings from a CGM (continuous glucose monitor) over bluetooth. Then the pump can make decisions such as stopping insulin delivery if you're going to go low, doing small correction boluses, and adjusting basal rate. However it's far from perfect and still needs a lot of management. My wife has T1D and was recently pregnant, which really raises the bar on how tightly you need to control your diabetes. She ended up mostly micromanaging it all herself rather than trusting Control IQ to do the right thing. The other issue is CGMs are not that accurate, so these systems are making decisions based on not great data.
- code_duck 5y ago
  I have a tandem pump. The problem I see is that you still have to wait an hour for the insulin to take affect. And like you say, it’s based on CGM data which is not always accurate enough. Perhaps in the future there will be implants that deliver insulin in a more direct route, such as intravenous or intramuscular. That would also make an overdose more dangerous, though.

Mezzie 5y ago

> I'm literally crying while writing this post, because it's so exhausting and it never ends. If it helps (?), I also broke down crying reading this, because I have MS and it is so true to my experience. I've never been able to communicate well how exhausting the constant mental load is, and I imagine it's even worse for people with T1 diabetes since blood glucose can get out of whack a lot more quickly than my immune system can make more holes in my nervous system. You nailed it on the head exactly with the constant balancing. "Okay, so I didn't sleep for crap last night due to symptoms. Do I have some caffeine and spend the rest of the day in pain due to the increased muscle spasticity? Maybe if I have 3 cups of coffee instead of 1 and also take some of my muscle spasticity medication, I'll be able to stay awake but not be in too much pain. Except if I dip into what are supposed to be nighttime pain meds too often, I might run out of Tizanidine. When will my insurance refill? How much will it cost out of pocket when I have a bad pain month?" And then I get stressed out about the MS, and we're supposed to avoid stress, so then I stress about my stress. Fantastic. And all until the day we die.

mkrecny 5y ago
I'm sorry
mst 5y ago
Oof. Even without any physical issues if I get stressed about stuff in a way that makes it hard to concentrate I usually then manage to do the 'stress about my stress' thing on top of that and damn but that's no fun at all.
- Mezzie 5y ago
  Are you tired of boring, old stress? Try new and improved META-stress: all the worrying and none of those pesky resolutions or good things!

btowngar 5y ago

One further thing - the article doesn’t talk much about the physical response to wearing a CGM such as the extreme skin irritation some people get from the adhesive. Or the fact that the CGM reading could be way off the reading you get from a finger prick test - which can in turn vary significantly from a lab test result!

consp 5y ago
I did the test once with most meters I still had laying around: ballpark correct but according to them my blood sugar level was between 3.8 and about 7 mmol/l. I have one which is very finacky in the 4.0 and lower range which is annoying if you want to know if it really starting hypoglycemia or you are just tired.

sdze 5y ago

Would it not be better to eat only once a day so the potential for errors is minimised? Skip carbs altogether?

dot1x 5y ago

A solution to this (from a non-diabetic) would maybe to always be eating a keto-like diet. It's not easy, but far easier than having to constantly juggle 100s of carb combinations. "Diet" might even be the wrong word, more like a lifestyle.

spanktheuser 5y ago

It’s just insane. I had no idea until Covid triggered the onset of type 1 diabetes in my niece. I was fortunate to spent time with her a year later. Her mother and father seemed to have aged a decade from the stress. I can only hope that the AI monitored artificial pancreas tech currently in testing is approved for general use soon. The cognitive load of monitoring and treatment is insane; the impact of any unanticipated variance so severe.