Hey everyone I am new to this forum but I have been a Type 1 for almost 18 years now. I am the only one in my family and back when I was diagnosed at age 11 was the only kid in my whole school who had this. I am 18 years in and I feel so damn alone in this world when It comes to my diabetes I have no one in my life or even know anyone in my town or area who has this disease. And I am finding myself in a burn out stage where I don’t want to do anything diabetic related. I need help getting back to being a good diabetic and getting my A1C down and living a good life. I am on a Medtronic pump and always have been but I am starting to think about changing any advice there, also I need advise on my cgm I can’t wait Medtronic cgm the adhesive literally burns my skin so I am on a dexcom how do y’all get these bad boys to stay on the whole time it’s supposed to ? All and any advice you can give this struggling diabetic would be appreciated… everyone around me just tells me to be better and stop with the excuses
While I’ve only been a diabetic for nearly a year (December, 2022) something that’s helped me is making jokes not about, but using my diabetes. Some (Most) people don’t understand diabetes, especially not type 1. The trick I’ve found is that laughter truly is the best medicine, and to be the best you can be. For me, I aim to be a beacon of hope. As cringy as it sounds, sometimes the cringy and the corny is what makes you the happiest. My opinion? As hard as this is, vs. how easy it sounds, don’t care what others think, it’s not worth it. They don’t know what it’s like. Heck, they’re not even as strong as you! Diabetes doesn’t define you. I do a lot of writing to help me cope usually, and my message in my writing is usually heroes and villains have the same backstory. For example, in Batman, Batman and the Joker both had tragedy strike their personal lives at a young age, at the hands of somebody that didn’t even mean to do much bad in some cases. Difference being, Batman took it and strived while the Joker used it as an excuse to do harm to others. Both of them had bad pasts, yes, but they did not follow the same path. My point being, what you do with your struggles is always part of your development. So, with all that, my best and only advice to anyone struggling with burnout is, diabetes is not your life. Be everything you can DESPITE diabetes.
Hi @Azoll65 and welcome to the forum. Go to the Resources tab at the top of the page and enter your zip code in the search box, and you may find some activities and in person groups where you can meet others with Type1.
As for keeping my Dexcom on, I use a Dexcom shield and a Simpatch - sold separately. The shield has no adhesive but the patch fits around it and that sticks to your skin. I don’t swim or work out in the heat but for my use I’ve found it lasts the full 10 days. If it does start to come off you can remove the patch without pulling off your sensor. Dexcom has their own patches you can get on request but I find they peel easily and dirt gathers around the edges - that does not happen with Simpatch. They come in packs of 25 so if you’re thinking of switching to the G7 soon you might want to wait.
@Azoll65 Welcome Ashley to the JDRF TypeOneNation Community Forum! Although meeting people with diabetes isn’t as powerful as meeting in person, this may be a good beginning. Here you will be surrounded by folks who can relate to what you are saying and some will offer suggestions based on personal experiences of living with diabetes. When I was diagnosed 66 years ago, I had never heard of diabetes and it was many years before I met another person living with T1D; thankfully now I can get together to “share and learn diabetes” every month at the JDRF Cups of Hope coffee gathering.
Is this your first-time hitting Burn-Out? by 18 years in, I had that experience a couple of times. A couple of thoughts on your questions:
- Meeting other people with TypeOne - your doctor may be able to offer assistance; perhaps even by putting you in touch with the representatives that visit him from Medtyronic, Dexcom, Tandem, etc.
- An insulin infusion pump is just a device, whether it is Medtronic, Tandem, or several other brands - the key is how you use the device - basal rates, carb ration ISF, etc., and how you choose to integrate the information from your Dexcom, the most accurate CGM available.
- Dexcom CGM - I don’t have difficulty keeping it on for the entire 10 days. I believe the key to sticking is preparation; make certain the site is “clean” and free of shower-soap and shampoo. Clean with clear water after washing and rub hard with a towel abrading the skin getting off “dead” layers of derm. Dexcom has free-for-asking, with an on-line form or phone call, sticker tapes that hold the device on tight - Dexcom will also replace any faulty sensors including those that fall-off.
Struggling with diabetes deserves a book by itself and even that wouldn’t help because what I see is that there aren’t two people whose experiences match - each of us is unique. What has helped me cope is to think positive whenever possible and accept that “numbers” will not always be where they should be, but accept that I’ve tried. You know and I know, and other people living life with T1D know that diabetes has a life of its own and doesn’t follow the Rule Book - people not living with diabetes, including too many doctors, do not understand this fact, so I try to let unsolicited advice roll off my back - like water off a duck. One piece of advice [and a few other] I learned from my wife a few decades ago is: ‘you are trying, you do what you think is right most of the time so when something goes wrong, forget about it and try again - or something different’. Since I’ve accepted her wisdom a few decades ago - we’ve been married almost 57 years - my diabetes-life and from that my entire life has been much more comfortable.
This disease sure is lonely. I can only second everything everyone else has said- get in touch with other T1Ds (I’ve had T1D for 3.5 years- finally went to a conference this winter and made some friends with T1D and it was amazing!), find ways to laugh about the craziness, take the curveballs as they come, and make sure you’re getting as much as you can out of your devices! Sometimes that does entail switching devices if you’re really having a hard time with your current system.
For the dexcom stuff, I use patches and dex never fails to send me a free sensor if it falls off or dies early (about 1/3 of them do). I know lots of people have posted or started threads about this topic, so you should go look up “dexcom falling off” in the forum search bar and I bet you’ll find a wealth of information!
Good luck with all this- I’ve yet to experience full out burnout, but I can occasionally start to slide in that direction. It’s tough. Keep going!
Hi @Azoll65 welcome to T1N. All good stuff above so I’ll only add that my next pump will likely be a tslim or omnipod, and it’s mainly because I like Dexcom. As far as burnout, for me it passes. I don’t try to be perfect. I don’t try to have a super restrictive diet. I don’t try to write everything down. I strive for manageable handling of diabetes. If I have a good basal rate, then all that’s left is to bolus for meals and maybe add walking. When I feel stronger, I add more exercise. Good luck picking a new pump and dealing with the burnout.
Hi again @Azoll65 . If you stay on the forum for a while - and I hope you will - you will find that my thoughts come in bus and pieces so I post them as they come to mind. In other words - I’m baaack😊!
You said there are no other students at your school with Type1 but sometimes people go by what they see and there are actually other “hidden diabetics” there - maybe you even share a class! So if you have not already tried this, ask your school nurse if there are others they could put you in touch with. If course they won’t be able to share someone else’s infirmary but you could ask them to pass on yours. If you see other young people your age when you go for your appointments you could reach out there; or your endo’s office - like your school nurse - may be able to put you in touch with other patients.
Apologies - when you were asking about the CGM staying on I overlooked what you wrote about being allergic to the adhesive and my response was about holding a device in place. Have you tried a skin prep wipe? It’s supposed to help the device sick better but might provide a barrier. Benadryl might help. Am allergist might be able to prescribe something to help with your allergy to the adhesive.
I’m guessing you may be heading for college soon so you might want to check out the College Diabetes Network:
Discovering that there were no support services available to college students with diabetes spurred Christina Roth, then a junior at the University of Massachusetts Amherst, to create the College Diabetes Network in 2009.
https://thediabeteslink DOT ORG /join-the-community/college-chapter-network/
Be better and stop with the excuses? Ugh. I am so sorry. That feels so uncaring and insensitive. An obvious sign those people don’t and can’t understand T1.
I’m only 1 year in, so I haven’t struggled with burn out yet. I do know it’s an unpredictable struggle and just plain HARD. I’ve had my share of people’s ridiculous comments but it just proves their ignorance and lack of understanding and knowledge. I doubt it will change but I try to briefly explain some of what T1 is.
I hope you find some support here. It’s been really helpful to me being on this site.
Thinking of you …
Whoops! I made the same mistake as dorie and thought you meant keeping dex on. I haven’t had any issues with dex irritating my skin. You should ask dex to replace if you have to pull them off early and search the forum- lots of other people have issues with that!
One of my T1D friends with extreme adhesion allergies actually peels the fabric backing off of the plastic and techy part of the sensor (while it’s still in the applicator), cuts a hole for the inserter needle and wire in a new patch that doesn’t irritate her skin, and superglues that new patch to the plastic. This made no sense to me until I switched my sensor. After pulling it off my arm I pulled the fabric off the plastic housing for the transmitter and figured out what she meant. Very precise work and I don’t know how she does it exactly but I thought it was a creative solution!
Following up on @6yGodsGr 's post, I wonder if this might work? Same type product as the Simpatch but less exposed area.
Or this one - if your aim isn’t good you could enlarge the hole.
@Azoll65 You’ve received a lot of comments already and I hope they’re helpful to you. Our experiences are vastly different, you’ve been at this 9x as long as I have, you’re young and I’m 68. I live in the DC area, lots of people, and have met very few others with T1. What’s helped me is finding a couple of good forums for contact with other T1’s that understand, relating to what’s common finding out what’s not, and being willing to share experiences. It’s not the same as “in-person” but helps, sometimes to rant a bit, sometimes asking questions like you have, sometimes offering advice. The people here are good as well as FUD (https://forum.fudiabetes.org/), Loop and Learn (https://www.loopandlearn.org). We don’t always agree on life or T1, but sharing what has/hasn’t worked (like adhesives not working or burning) helps break the psychological isolation as well as sometimes providing a different approach to treatment (search here and FUD for adhesive issues/solutions). Stay in touch, find a confidant that you can talk with (T1 or not) and let us all know what you find works for you…it might help someone else.