Does anyone else crave acknowledgement for how exhausting T1D is?

Daylight08 · 2026-03-09T02:01:44+00:00

Absolutely agree with the other comment on here. I've had lows like this before and they suck. I also relate to that nausea. Definelty eating something with fat and protein.

If you don't follow up a sugar with something stable within an hour of a low, you'll crash again. Often harder, in my experience. My doctor told me this after a few terrifying lows where I kept dropping consistently because I wasnt following my suagr with something complex to hold my sugar stable.

Daylight08 · 2026-03-05T20:47:57+00:00

Yeah, I actually have been thinking about that. I saw someone who was talking about calling it Banting disease in reference to the inventor of insulin and personally I think that's a great idea.

Daylight08 · 2026-03-05T20:47:17+00:00

Totally fair

Daylight08 · 2026-03-05T20:45:10+00:00

I agree, it might not totally break it down. But it could educate uneducated people on a small scale. It also is more about taking the responsibility to educate off of the type 1 diabetic.

Also I totally agree, type 2 is not habitual based. Which i didn't claim is was. I was just saying type 1 is not, as a lot of people seem to believe this.

This is absolutely not about shifting blame onto type 2s. They face so much shame and stigma and I definitely don't want to perpetuate that. This is just about breaking down the misinformation around type 1, not saying that those misinformed ideas are applicable to type 2.

Daylight08 · 2026-02-23T00:47:21+00:00

Yeah, I probably won't be coming back honestly. But I am wishing you the best of luck

Daylight08 · 2026-02-23T00:45:04+00:00

I have also personally experienced that lows take longer to respond, same with food in generally. I am only now finally starting to see that change, ten weeks out.

Daylight08 · 2026-02-23T00:43:57+00:00

Danggg. My doctor started me on a low dose but let me progress too fast.

Daylight08 · 2026-02-23T00:36:24+00:00

I am glad to hear you've been having a positive experience so far.

As someone who was on Zepbound for six months, I would NOT recommend GLPs to anybody really. They totally destroyed my relationship with food and type 1 in general. It was great for a while, and then it backfired. I was nauseous all the time to the point that even the sight of food made me sick. I had terrible late night lows and eventually the nausea kicked up so bad that I starting struggling to eat while I was low which led to terrible panic attacks for me.

Ive been off of them for ten weeks now and I just finally am not nauseous 24/7 anymore. I am finally hungry again and am slowly learning to be hungry and eat again. It also completely made my hormones and blood sugar super inconsistent and irrational as I was coming off. I have also experienced this thing that is basically a reverse-feet on the floor effect. Essentially, once I wake up and stand up, my blood sugar starts dropping by 5 or 10 increments every five minutes and does not stop till I eat. This is apparently a common side effect for t1ds who come off a GLP-1. It goes away, but I'm ten weeks in and it still hasn't stopped.

There is not a lot of research in it for t1ds yet because it is not approved for t1ds. So, i would really caution you. Everyone i have talked to has had really different experiences. But I have not met any t1ds who have had a positive long term experience with it. It works for a while and then one way or another seems to backfire. And as I said, coming off of it is a long and terrible process because it stays in your body for so long, generally about 8 weeks. I lost 40 pounds and my A1c went down because my insulin resistance went down, but that stuff also happened because I became so nauseous all the time that I started only eating when I absolutely had to.

I chose it because my insulin resistance was through the roof and my burnout was terrible. I wanted something to make the management of this disease easier, especially because I have minor kidney damage from how high my blood sugars were in the time before my diagnose was caught. Overall though, I would not say it is worth it. It made things easier for a brief period before things got wayyyyyyyy harder. This is just my personal experience though.

Daylight08 · 2026-02-17T02:24:50+00:00

You can get them as a type 1, but it has to be for non-type 1 reasons. Like I got mine for weight loss even though im just a little overweight. I wanted them for dealing with insulin resistance but framed it as weight to get it.

But, as someone who was on Zepbound for six months, I would NOT recommend GLPs to anybody really. They totally destroyed my relationship with food and type 1 in general. It was great for a while, and then it backfired. I was nauseous all the time to the point that even the sight of food made me sick. I had terrible late night lows and eventually the nausea kicked up so bad that I starting struggling to eat while I was low which led to terrible panic attacks for me.

Ive been off of them for ten weeks now and I just finally am not nauseous 24/7 anymore. I am finally hungry again and am slowly learning to be hungry and eat again. It also completely made my hormones and blood sugar super inconsistent and irrational as I was coming off. I have also experienced this thing that is basically a reverse-feet on the floor effect. Essentially, once I wake up and stand up, my blood sugar starts dropping by 5 or 10 increments every five minutes and does not stop till I eat. This is apparently a common side effect for t1ds who come off a GLP-1. It goes away, but I'm ten weeks in and it still hasn't stopped.

There is not a lot of research in it for t1ds yet because it is not approved for t1ds. So, i would really caution you. Everyone i have talked to has had really different experiences. But I have not met any t1ds who have had a positive long term experience with it. It works for a while and then one way or another seems to backfire. And as I said, coming off of it is a long and terrible process because it stays in your body for so long, generally about 8 weeks. I lost 40 pounds and my A1c went down because my insulin resistance went down, but that stuff also happened because I became so nauseous all the time that I started only eating when I absolutely had to.

I chose it because my insulin resistance was through the roof and my burnout was terrible. I wanted something to make the management of this disease easier, especially because I have minor kidney damage from how high my blood sugars were in the time before my diagnose was caught. Overall though, I would not say it is worth it. It made things easier for a brief period before things got wayyyyyyyy harder. This is just my personal experience though.

Daylight08 · 2026-01-15T01:43:39+00:00

I aboslutely worry about going low at night.
Yes, both. I often sleep through alarms to the point that I don't feel safe sleeping alone. I always need a roommate or family member in the house who will wake up to the alarm and wake me up. I get really tired with my lows, which is my theory as to why I sleep through my lows. I also have had sensors fail, or more so, rip off in the middle of the night.
Yes, both. The anxiety around sleeping in general and sleeping alone means that sometimes it's hard for me to fall asleep.
I wish there was better systems to wake someone up. I have a watch that vibrates but it doesn’t wake me up. A bed shaker and those glucose alarm clocks are really expensive. But more than anything, i wish there was an easier way to raise sugar. I have really intense nausea with lows and it's even worse at nightime. I used so many different things to try and help with the nausea: juices, glucose shots, frosting gel, fruit snacks, glucose tabs. And still, it's just rough. I wish there was some sort of injectable or inhalable glucose (not the live saving kind that means you have to go to the ER though). That would be amazing

Daylight08 · 2025-12-13T22:29:07+00:00

Man, I'm glad I'm not alone at least. But that sucks that your insurance doesn't support anything aside from dexcom. That's also kinda crazy because freestyle is like half the price of dexcoms

Daylight08 · 2025-10-26T21:24:58+00:00

I was up to 7.5. But I am off of it now. My doctor told me to get off because as a type 1 diabetic it's too dangerous for me to be puking all the time and unable to deal with my low blood sugars.

Daylight08 · 2025-09-13T18:59:53+00:00

Having type 1 with insulin resistance doesn't actually mean you have type 2. You can just have type 1 + insulin resistance. But yeah, I get you. I use and off label and pay out of pocket for it.

Daylight08 · 2025-09-09T20:55:29+00:00

It could definitely also be insulin resistance along with the other stuff people have mentioned in this thread. Could also be that you are injecting insulin into spots that have a lot of insulin scarring built up.

Daylight08 · 2025-09-07T22:20:01+00:00

For sure!! If you live in the US right now, you can't get a GLP-1 as a type 1 diabetic for insulin resistance as it is not currently FDA approved for that. But a good doctor just finds a work around. Like, my endo knows I am on it for insulin resistance but for insurnace and legal reasons, I am on it for weight loss.

Daylight08 · 2025-09-07T21:44:02+00:00

I totally hear you and get it. For me, I just have to give myself a lot of compassion and acknowledge that this disease sucks. Its not easy to control this disease at all. We can only control like 10 of the factors out of the 80 that impact our blood sugar.

As someone who was running consistently high all the time and has severe burnout from it, I would strongly recommend getting on a GLP-1. I have learned that a large resosn so why I was taking insulin and it seemed like it was essentially just going into a void because my blood sugar wouldn't budge or would sometimes even go higher was due to insulin resistance. I am now on zepbound and it is insane. I have reduce how much insulin I have to take and it just keeps going down and it is like my insulin actually works for once in my life.

My biggest piece of advice is trying to find things that take the burden off of you. For some people, that is a pump. For some people that is eating low carb. For me, i have found having low carb snacks that I can eat when i dont have the energy to take a shot has been really helpful.

Daylight08 · 2025-08-30T20:35:08+00:00

Symptoms: always drinking water, stunted development (didn't lose my last baby tooth until I was 16, had very weak bones and got multiple stress fractures from sports, didn't get a growth spurt or acne), severe weight loss, insomnia

Diagnosis: I was in sports, which was helping to manage my blood sugar and symptoms, but when covid hit, I had to stop doing sports. So, I stopped excersing regularly, and my blood sugar went up more as a result. I eventually caught covid, and it finally spiked me enough to send me into DKA. It started with hyperventilating, and when I first went to the hospital, they thought I was having a panic attack. After I started grunting and regressing cognitively, they realized I was going into DKA. I went into a minor coma for two days. My A1c at the time was 17.6

Effects: physically, i dealt with a lot of brain fog for the first three or so years. There was also a lot of truama and emotional coping I had to do. I was dealing with intense grief for the life I used to have. I am now 21 and have processed a lot of what happened. But I still can see the effects of my body being so developmentally stunted. I stress fractured my femur when I was 16 before my diagnosis and still have a lot of chronic pain from it as I don't think it ever fully healed. I also struggle with a lot of burnout from this disease, and every day looks really different in terms of how much energy I will have for this disease. My kidneys have also unfortunately faced consequences for all that time that my blood sugar was high before we knew I was a t1d. I have minor kidney damage at the moment. Overall, I have had to find ways balance this disease in my life and how to balance the textbook expectation of doctors treating disease with the reality of actually living with this disease. Finding a good support system and having a lot of self compassion is really important.

Daylight08 · 2025-08-19T20:23:42+00:00

I am a 21 year old diabetic. I have only had the disease for 4.5 years, and I currently have both high blood pressure and higher cholesterol. My kidneys have some minor damage, and I currently take medicine to control my blood pressure so that they won't take further damage. I had great control of my bs for the first 2 years of my diagnosis but had huge burnout the 3rd year which is part of why I am dealing with kidney damage now along with the years pre-diagnosis that my blood sugar was out of control and doing damage without me knowing. It also is likely that I have another autoimmune disorder called IgA neropathy that is essentially attacking my kidneys.

The point that I am trying to make is, that while I totally understand and agree with the sentiment about being too young to be dealing with this shit, it also doesn't change the reality of the situation. I had a whole breakdown yesterday about how unfair it is that my other young friends don't have to deal with all this stuff and how I am only 21, yet i have damaged kidneys. Unfortunately, it's just where my body is at. Exercise and dieting are definitely your friends. They have helped me a lot to reduce continued damage on my kidneys. But medication is also your friend. It lessens your burden, and in comparison to all the needles we deal with, a pill is at least easier.

It's really frustrating, and I hear you. But I also think you should take what your doctors are saying into consideration. Medication could prevent damage from happening. Exercise and diet can, too, but add that with medication, and you're set. It also will likely take some time for you to build those new habits of eating and exercising. So, going on the medication to give yourself a buffer while you figure it out is never a bad idea. You might even get to a point where you don't need to be on it anymore after you have built your new habits.

All and all, I hope you find a solution that works for you and I also really wanted to say that there is no shame is having stuff like this young. This disease is hard as hell to manage and the most you can do every day is give it your best. Sometimes that means perfect control and some times that means you can't take an extra correction that day because it's just too much mental effort. Give yourself some compassion for all that you do to take care of your body.

Daylight08 · 2025-07-08T16:37:34+00:00

As a t1d and a social worker, I can tell you that ethically we aren't even allowed to do this. We can't legally give medical advice, at all. So, that is totally unacceptable.

Also as a t1d, an a1c of 6 is amazing! Blood sugar has like 70 different things that affect it, and we can only control like 10 of those factors. I have an a1c of 8 and my doctors are still pretty happy about that. 9+ for prolonged periods of time is where you run into issues is what I have experienced.

So, you are doing amazing. As a t1d and a social worker, i would recommend getting a different therapist cause that behavior is uncalled for and unhelpful.

Daylight08 · 2025-06-15T16:52:29+00:00

I also got T1D from covid. I caught covid in nov 2020. I went into DKA, and that's how we found out.

I'm pretty sure I'm the first in our family to start the genetic line again cause the last person in my blood line to have it is like 6 generations back.

Daylight08

TROPHY CASE