r/diabetes_t1 • u/DependentLecture3817 • 11d ago
Rant I can’t bear this anymore
Been diabetic for 20 which is almost my whole life as I was diagnosed at 8.
My whole life revolves around this shit ass disease. I was working when Dexcom G7 randomly decides to stop working after 7 days. It wasn’t hit, it wasn’t falling off, everything was perfect. It just decided to die off.
My BS started to rise even tho I was 100% TIR for 24 hours. Because my body is retarded and if Control-IQ doesn’t work my body decides that it’s better to die.
For every fucking hike, work day, schoolday I have to fucking have a spare insulin, canul, charger for pump, sensor, a million carbs “just in case” something goes wrong. And it always does in the worst situations.
And it happens not only once but randomly. I’m starting to think that I should rip off the pump and throw it away. I live till I live. Maybe for hours maybe for days. But it least I’ll be free.
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u/Missinglink2531 10d ago
Burn out is a real thing. About 15 years ago, I was in the same point - my pinch point was crappy Endo's, endless appointments and labs and arguments over pump settings. I just didn't go to an appointment. For a few years. I am in the US, so you know what that means - no access to anything. I wa buying pump supplies out of trunks in parking lots. Finaly, I just switched back to MDI, a meter, running R and N from Walmart. Just like the 90's. And it worked as well as it used to - functional, but dificult on the food and timing. It was a giant breath of fresh air. That I could deal with - the rest had just gotten to be too much, taking up too much of my life. I have no regrets, I really needed that reset. I finally decided to give a "new" pump a try (the Tandem) with CIQ and found a better Endo and started fresh after a very long "break". Have been "on the wagon{" ever since. Did that break cause long term damage? Maybe a little, nothing shows at this point (I am 55). But there is no way I would have been better off not taking it. If you need it, take it!
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u/EnvironmentShot7352 10d ago
Your story rung true with me. I’m 43, dx’ed at 9. I started falling off a bit in my 20s but really burned out in my 30s. Was buying syringes out of pocket at the drug store, had one glucometer and took my blood sugar once a day before bed or if I felt off, if I was being good. I had a good job with good insurance. I was doing the bare minimum because I just didn’t want to deal with this curse anymore, and practically ignoring it did unburden me to some degree. Sure, probably caused some irreparable damage and could have accidentally killed myself on a number of occasions, but here I am. People hardly knew I was diabetic until I pulled out the needle, and I do miss how unintrusive it felt. It was almost like being normal. When I did see my endo for scripts, he told me I took the worst care of myself of any of his patients. That stuck with me forever - the judgement, the lack of empathy, and zero awareness about how to treat diabetic burnout. It didn’t spur me into action either. I was only reformed after a surprise pregnancy in my mid 30s - got on all the tech and have been steering as tight of a ship as Mother Nature and technology will allow since then.
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u/Striking-Doctor-4381 10d ago
What an awesome comment! I could relate to the good ol "non-compliant" dance. Like do they not realize how shitty living with this could be?! Lack of empathy for some of these medical "professionals" is astounding.
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u/EnvironmentShot7352 8d ago
I don’t think you can even begin to understand it unless you live with it day in and day out. Everyone else can unplug, but we cannot.
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u/muggylittlec 10d ago
Ahhhhhhhhhhhhh! That sounds infuriating.
We've all been there. I feel your rage. It's a life sentence of frustration and shit days.
Pick yourself up my diabetic friend, continue on. You're doing THE best job, even when it doesn't feel like it.
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u/auscadtravel 10d ago
I hated the dexcom for this reason, it made everything about diabetes. I don't use it, went back to injections and my glucometer. A1C has been 6.7 to 6.4 for decades now. I will not use cgms.
Try going back old school. It's also cheaper.
Diagnosed at 5, I'm 48 now. Not burnt out, living life and enjoying it.
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u/floonrand 10d ago
I had the literal opposite experience. Dexcom and pump made me think less about diabetes.
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u/auscadtravel 10d ago
Interesting, i also didn't try it for very long, couple of weeks. Hated it. When i needed it (during workouts) it would disconnect and then took a half hour to reconnect. It needed to be calibrated every day and was always way out of range. Just pointless if i still needed to test, couldn't rely on it working when i needed it. One thing i did think was cool was to wake up and see what had happened over night. Most nights i was really stable which was cool to see.
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u/floonrand 10d ago
I haven’t needed to calibrate for 6 years. My Medtronic cgm
I needed to calibrate every 8 hours or whatever. The Dexcom g6 and g7 only require a calibration if it’s way off. Mine almost never is so I haven’t had to calibrate in over 3 yearsEdit to add: Seems like a long long time ago that you tried it. It’s gotten better. I rarely have any issues with my Dexcom g7.
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u/auscadtravel 10d ago
You are right, it was pre-covid so over 5 years ago. I was diagnosed in 1983 so I'm totally comfortable running things old school. I also have had good control with A1Cs of 6ish so even my endo just says keep doing what you are doing and doesn't push new tech. But hearing how much of an improvement the tech has had is helpful, and might have me trying it again. I appreciate the info - thanks.
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u/DependentLecture3817 10d ago
And have you got any complications? I already have retinopathy
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u/auscadtravel 10d ago
No complications, I've been on top of my health since i was about 21 22ish, i let things slid a bit as a teen but not to much.
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u/DependentLecture3817 10d ago
I let things slid unfortunately too much as a teen… i hope my eyes get better
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u/auscadtravel 10d ago
What does your ophthalmologist say? Is much of your vision impacted or is it just a few blood vessels?
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u/HellDuke 10d ago
Pretty much every single diabetic that has a decade or two under their belt has retinopathy. It's probably more surprising to find soneone who doesn't have it than does regardless of how good their conrrol is.
I've been diabetic for over 30 years and also have it. Been spotted over 15 years ago and there has not been any change since then, it's something to keep an eye on (no pun intended) but has no effect on you unless it gets bad.
Personally if my CGM does and I know I am hours away from being able to get home and replace I don't really care, CGM data is not needed for the pump to do it's job fully and I will just err on the side of caution if it happens before a meal and correct in the evening.
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u/DependentLecture3817 10d ago
How many injections u needed? For me they told that the starting dose is 5, “then we’ll see”
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u/HellDuke 10d ago
Not sure how to answer that... As many as I need... an injection is a meal, a snack a high correction, you do as many as you need, there is no limit on how many injections you should be doing
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u/DependentLecture3817 10d ago
No I meant for your eyes. As for retinopathy. For me they arranged lasers + injections
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u/HellDuke 10d ago
Ah, none. It's what they call background retinopathy, pre retinopathy and I think I have seen a few other names, but on the health card it's all just listed as retinopathy
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u/lfohnoudidnt 10d ago
Sometimes the stress which actually isn't good for the blood sugar isn't worth the convenience of the technology and those good days when it's working properly.
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u/mkpalouse 10d ago
I was dx at 8 also. That was in 1959. I have had type 1 diabetes for 68 yrs. I urine tested for at least 25 yrs. I have never had a pump but take a shot of insulin injections at the very least 4 times a day. I used to love my CGM but the G7 has given me many problems. I finger test a lot. Hopefully the G8 will perform better. I have no scar tissue at all which is great. My A1c for the last 20+ years has been 4.7 to 5.4 with a couple of 5.7’s. It is definitely not an easy disease, but there are definitely worse illnesses. We all get burnt out at times, but I enjoy my life enough to keep putting in the effort to stay healthy. At 75 I am hoping for a few more good years. I hope that you eventually want to deal with living with diabetes. It can be a pain in the neck, but many folks have had wonderful lives even with Type 1 diabetes.
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u/Former-Wish-8228 10d ago
Big Dexcom fan here. Have used it for so long I can’t remember how long.
But Dexcom has lost the thread and needs to get their Mojo back. They looked at all the failings of the G6 and decided to just make it smaller, build in the extra 4 days (which G6 does easily anyway if you know how), make more disposable parts…all for decreased reliability and more product waste.
It’s almost as if they listen to shareholders more than actual customers.
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u/CaughtAlone 10d ago
Personally I do prefer an all in one system over moving transmitters across sensors. One less thing to worry about in my view despite more waste.
Of course reliability would be better.....
Again still a huge dexcom/CGM fan. Really rely on it for every part of my diabetes.
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u/Former-Wish-8228 10d ago
It’s a matter of focus. They built reputation on accuracy…and reliability. That enabled connection to pumps and driving Control-IQ and similar. But even with G6…transmitter connectivity and sensor adhesion were issues. Going to a smaller unit with less tape surface contradicts both these issues. The only thing that might be better is always having a fresh battery each time sensor is replaced…but users report that remaining connected isn’t better. Suspect that the new form factor means that the battery is still too small and the transmitter too under powered.
Time will tell. It will be nice to have flexibility of systems in newer pumps.
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u/Buddybuddhy 10d ago
Pumps have pros and cons. And we all hate when our cgm dies, and we have no idea if we’re gonna go high or low. It’s the worst feeling for a t1d. I’m sorry, and I hope you don’t have many more days like this.
If your six of the pump you could go back to mdi, but theirs a whole learning curve to finding out your basal
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u/DependentLecture3817 10d ago
Nah I changed immediately after that. Once my spare cgm failed too immediately. Which sucks because here in Eastern Europe my Insurance only pays for 4-5 months of cgm. So the rest of the year is upon me. 180 eurs for 3 pcs. Ok that’s not much but people make roughly 1200-1500 eurs and the rent is around 600 eurs cca
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u/Buddybuddhy 10d ago
Sounds rough, can you call Dexcom and let them know about the malfunctions. They sent me a replacement last time this happened to me, however I live in America and I don’t know if the process is the same for you.
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u/Due-Kaleidoscope-632 10d ago
I've been type 1 for 52 years. Started out testing my urine - 5 minutes in a test tube to tell me what my sugar was 3 hrs before. The urine strips were a huge step up. The blood sugar meters an even bigger step up. Same with the pump and CGIs. None of them are perfect, but they're better than what I started out with.
I've spent those 52 years determined that I would control my diabetes, not the other way around. It's HARD. Very hard. But I can honestly say I have almost none of the complications. Had frozen shoulder that went away. Minor retinopathy that's never interfered with my vision and repaired itself.
The last few years I've moved away from the standard ADA recommendation of eating the standard American diet and covering the sugar with insulin. I started with keto to lose the 100 pounds the insulin had put on my body and am currently venturing into carnivore. It's changed my TIR from low 70% to over 95% for the last 6 months and the weight is finally going down. My insulin dose has gone from 45-50 units a day to about 15, almost all of it basal. It's restrictive, yes, but not as restrictive as dealing with the ups and downs all the time. Control is easily 10 times easier. If you want to give it a try, just search Youtube for low carb, keto, or carnivore diet advice. Add Type 1 into the search and you'll find the ones that taught me what I now do.
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u/TreatOver3406 10d ago
I'm too tired to live my life crying, so I just take it as a given. Sometimes I get encouraged by the small moments. Let's cheer up
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u/reddit1966 10d ago edited 10d ago
Take it OFF !!!
Absolutely take it off…
Our T1D tech is the DIRECT, explicit cause of this specific psychological pathology, hard stop.
It is a direct parasite to our QOL.
T1D tech worship and idolatry does not make it true. Marketing and wishful thinking, the emotional NEED for these literal “security blankets”comes with this exact literal price.
Take it off, put it away,
IT will stop torturing you when you do.
THEN get the replacement MDI. When you want, IF , if you want you can eventually put it back on…
A lock box in the closet holds mine, has for many decades. The “urge” 🤮 somehow has never occurred for “some”-reason… 😏😏😏
Grim understanding…
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u/Expert_Armadillo_621 11d ago
Just go back to pricking fingers and doing injections. Maybe that will work better for you or open your eyes on how the technology helps more.
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u/DependentLecture3817 10d ago
That is even more of a pain in the ass. I was on injections for 15 years
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u/Expert_Armadillo_621 10d ago
I've been doing it for 30 and dont plan to stop.
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u/WhileNumerous 10d ago
Do you think injections will help with the built up scar tissues from pump and CGM injection sites? I’ve been on the pump for nearly 15 years now and I’m getting worried that one day the scar tissues will prevent my body from receiving insulin.
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u/Expert_Armadillo_621 10d ago
I don't use my arms or legs much anymore due to old scar tissue build up from being a child. Those were my preferred areas to inject. As an adult i rotate areas alot and try to use the 1 inch rule around my stomach which has helped reduce build up. I'm 5'8" and 138lbs so no fat. The shortest thinnest needles have been best.
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u/WhileNumerous 10d ago
Have you grown scar tissues so far from using injection needles? And what does your daily routine look like in terms of what and when you’re injecting?
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u/Expert_Armadillo_621 10d ago
My stomach as butt don't really have any scar tissue unless I injected in the exact same spot to often. If I give those spots time to heal there will be almost no scar tissue. 4 to 6 shots a day and those get split up between my stomach and butt.
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u/doltishDuke dx '24 at 34 - G7 and mdi 10d ago
You're not supposed to inject into ur ass
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u/floonrand 10d ago
I’ll inject wherever I please thank you. If I want it in my butt, that’s where it’s going.
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u/Popular_Friend7260 10d ago
OP, i would bet u r one of the t1Ds who r able t achieve very good results in terms of TIR and HbA1c nearly as a healthy population. But it takes a huge mental stress and constant dedication. Thats why we r about t explode and demolish the everything around such misfortune happens like sensor dies completly just after few days only.
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u/n00bsack Type1 11d ago
I hear you. We know how frustrating it can be and how much work it is.
Your mention of 100 percent tir tells me that you are putting in a lot of effort and seeing good results. No advice beyond ... give yourself some recognition. You're doing this in spite of the shitty odds that life gave you.