Hi, happy to be a part of this little community. For starters, I’m 25, i was diagnosed when i was 6, and have been on a pump since i was 11. Currently using dexcom G6, tandem tslim pump. My younger sister (now 22) was diagnosed at 13, and my boss (now 59) was diagnosed at 34. I connect with them regularly, but they both manage very well (my little sister recently had an A1C of 6.4, i’m so proud of her).
On my end, I have struggled with poor management for almost 10 years now. Getting a CGM was helpful because I would otherwise go days without checking, I rarely remember to bolus when I eat i typically just see the spike and go “oh crap” and do a correction. I’ve seen A1Cs range between 8.7 and 14.1 in the years of this. I had an A1C of 7.0 ONCE in 2020 (i just got the dexcom and I was unemployed due to covid, i had nothing better to do except helicopter my BGs). I battle with depression, anxiety, and EDs, all of which are heightened by poor management of t1d. I proactively treat the above issues, I’m active as can be, go to therapy, take my meds as prescribed, and work with a dietitian. I’ve definitely been through “diabulimia” before i knew what the phrase was.
For context, the catalytic event(s) that led me to join were 1) monday evening i had a sudden drop from exercise and almost fainted, then overcorrected and ended up in the 300s (a regular number for me, sadly). 2) tuesday morning i forgot to bring a site change with me to work and i ran out of insulin, and luckily my boss had a spare pen, so ive been jabbing myself with that. 3) i got home prepared to do a site change and i have zero bottles of insulin. (I have the pen so I used that to fill the cartridge, I will be okay!) I’m never this disorganized. I’m scared. I’m embarrassed. I need help.
I’m coming to this community to ask for accountability. Someone who doesn’t know me personally who can check in, someone whose idea of me won’t change for the worse when they learn about my management or lack thereof. I’m really embarrassed by and ashamed of all this, I know I would feel better if I took care of myself better.
Hi @greenlabradoodle (love the name you chose, by the way!) and welcome to the forum. I’m glad you found is and decided to join. I’m approaching the 60 year mark with diabetes and your probably want buddies your own age but I did want to encourage you to keep working. You started by acknowledging the issues you’re having and that you know they’re a problem - so you are not in total denial. You’re going to counseling, which is great: is your counselor helping you with diabetes as well as the other issues? I’m not sure but I think there are ones who handles diabetes specificslly, and you might find some resources on the link at the top of the page.
You may get discouraged comparing yourself to your sister and your boss. Try not to do that. If possible use them to inspire you to internalize better care of yourself.
I forget to bolus now and then. The pump has “missed meal” reminders you can set. You can also set CGM rise and fall alerts which would remind you to check something when the rise is just beginning. I don’t mean to over simplify what you’re going through but of what you need to do may be developing good habits. The more you do it hipefully the more natural it will become.
Have to go, but I hope you find lots of encouragement, friendship and accountability here. You’ve taken the first step by reaching out.
Hi, I’m pretty new to this as well. I am 21 now and I was diagnosed last year. I don’t have any friends with diabetes and my dad hasn’t discussed my health with me since my diagnosis (he is t2d) so it can be a little lonely. I am not an expert on insulin or keeping my health in check either. I just try to get enough exercise and eat 3 meals (still a struggle). I might not be the best choice for an information resource since I am still struggling to learn but I can definitely hold you accountable. It’s harder than it seems so I understand your fear (because I feel it too) and I definitely won’t judge.
@greenlabradoodle Welcome J to the JDRF TypeOneNation Worldwide Community forum! This Community Forum is a place to read and see how so many people have learned to take responsibility for managing their own diabetes, and offer suggestions in a non-medical professional manner. Oh, and this forum so not really a “small community”; so far today, 11,264 persons have come on board to read and learn.
I don’t think that an “anonymous buddy” is the place to go, effectively managing autoimmune diabetes, T1D, is a very personal matter as each one of us is unique in body and manner of living. And as Dorie said, don’t try comparing yourself with others - other than attempting to emulate the other person’s effective attitude for managing.
The “battle” issues you mention, as well as the forgetfulness issues you later mention could well be made less traumatic for you, at least as starters, if you follow this wonderful menu:
Welcome, @greenlabradoodle. I don’t know that I have help for you, but I certainly sympathize. Not saying this is where you’re at, but most of my life I have been allergic to doing things the same way twice, including daily schedules. (I’m a dreadful cook. Recipes??). Also to listening to anyone tell me how to do anything. Also to paying attention all bloody living day long to diabetes, diabetes, diabetes lemme just focus on something else for awhile.
So I used to wind up in some really not-great highs and lows. I don’t know if it’s because I was - we all were - on one shot a day for much of that period, but I didn’t pay nearly as high a cost for my inconsistencies and I do now for much smaller slipups. I consider myself to have been mentally 13 years old until I was 35, and about an angry, rebellious teenager’s amount of cooperative and resigned to being diabetic.
Don’t be me. I’m not as sick as some who have had diabetes less long than me, but thanks only to some REALLY good health genes. But I’m not having the easiest time of diabetes in my retirement years, either. I don’t know what to recommend to you. Someone who will listen to you talk about what makes it hard to think about your diabetes with every thing you do, eating, exercising more than usual, sleeping, watching TV for hours, existing, every bleeping minute of the day OK so yeah my inner 13-year-old is still alive and kicking. I’m just more scared of losing my life now, I think, so the inner 65-year-old can rein me in. Most of the time.
Hi @theNoz . On a bit of a side note, you asked for recipes. I’m not a good cook either - it’s not something I enjoy - but I found an app called Yummly that has tons of recipes. I prefer ones with not too many ingredients and that can be prepared quickly, and I save the ones I like so I can find them easily.
Ohhhh I didn’t ask for recipes! My problem is how obstinately my brain refuses to follow them quite exactly. “Never do anything the same way twice.” Most of the time it isn’t too much of an issue. I did once try to make my own version of Manhattan chowder, except there were a few too many ingredients I didn’t have - nearly all of them - and so substituted. It tasted godawful. Even last night I fixed buckwheat, and after reading the box again, put in 1/3 cup instead of 1/2 cup grain and 2 times the water, and didn’t “realize” it until the instant the 2 were mixed and the inner 13-year-old sneered her presence at me.
Hi all, thank you so much for taking the time to read my thoughts and respond. Since posting (~48hrs ago) I’ve made a long overdue appointment to see my nurse, and by chance saw a good friend of mine who also has T1D, which was super helpful. For further context, I am a professional dancer and personal trainer, I dance 2-3x a week and workout 3-4x a week, in addition to my training work being active and on my feet. I know that remaining active is likely helping avoid major issues. I also know that not managing is definitely impacting my physical performance and mental health. I’ve been more diligent the past day or two and hope to continue this path. More direct/specific responses below:)
@wadawabbit no, my counselor is not diabetes specific, she is an ED specialist. my dietitian understands the T1D pretty well, though. I use the missed meal reminder for dinner, but my other meal times are hard to predict so I don’t feel that the reminders would be effective for me. I’m also one of those people who can dismiss a reminder/notification with ease. like a snooze button.
@BobBelcher I appreciate the offer and would love the accountability. would love to connect more
I notice you said in your post that you got home and found you didn’t have any insulin left. Some organizational approaches you might try include seeing if your pharmacy offers automatic refills (many do, and you’ll get a message when your order is ready for pickup), putting a refill in when you get to a certain point in your stash, or putting regular reminders on a calendar for yourself.
You also mentioned that you often forget to take your insulin when you eat. Maybe you could do something like make a bright colored note that you put in your lunch bag each day that reminds you to bolus when you eat. I know the schedule of a professional dancer can be quite hectic (I’m one myself too!), so perhaps finding a way to give yourself “automatic” reminders for all these things you are struggling with would be helpful. Take these as ideas of course–you need to figure out what works for you!
Hellow! @greenlabradoodle and welcome to t1d community, diabetes is 24 hours daily job which we can sometimes not be able to manage perfectly all the time! We all have good and bad time, don’t give up we can fix it you are on the right community right people, everybody has something special to offer! Am 24 i maybe the right buddy you are looking though am not used too much to technologies, am also a personal trainer (calisthenics) feel free to reach any time🙏
Hey I’m 20 and was diagnosed at 7. I recently went through something traumatic that triggered something to go off and now I have schizoaffective disorder bipolar type. I deal with all the basic anxiety and depression, disassociating. It’s been extremely hard because I have no support or anyone my age that is also type one. I now have numbness in my fingers probably neuropathy so I also feel bad about my health. I just was in dka a month ago for the first time in years. My sugar was 1,038 so that has caused some kidney problems for me most likely but I can’t get in with a kidney doctor because of the long waits. Anyways I would love to talk more . My snap is @emilylluv
