I belong to a few FB groups for diabetics and just wanted to put forth this topic and discussion. Some of the posts were:
I hate all the pricks in the day.
Inability to eat all the carby foods.
Unsupportive, ignorant, misinformed “friends, family members”.
I thought long and hard about this. Prior to diagnosis, I ate very poorly and less mindfully, succumbing to all the advertising : Oreos, Milky Way, Twinkies, Donuts (My company used to serve coffee and doughnuts at EVERY meeting. I typically attended at least two meetings daily. Can you imagine??!!!) Since diagnosis, I’ve changed my eating choices SIGNIFICANTLY, and my lifestyle. I was resentful initially. I couldn’t have a cappucino without my BG rising. On my recent trip to Italy, I learned that Italians generally don’t have cappucino’s after 10:30 AM ish anyway. The emotional and psychological aspects of dealing with diabetes is something that healthcare providers generally don’t spend much time on because it’s much easier to deal with numbers, data, blood test result. However, it is our ability to “cope with” the emotional effects of diabetes that can have a huge impact on diabetes management. Along with the way, I’ve also learned who are my real friends.
What are some of your least favorite aspects of diabetes?
My absolute least favorite aspect is dealing with the ignorant folks who say things like:
“Too bad you can’t have that”
“Your poor eating habits must have caused diabetes.”
“You ate too much sugar as a kid.”
I also hate all the pricks in a day, but I’m not sure we’re talking about the same kind. :D. I don’t mind finger sticks at ALL.
And my FAVORITE line is when someone asks what my pump is, I explain it’s for insulin, then “oh, you have diabetes?” Followed by, “my [insert loving family member] died of diabetes!”
I don’t want to come off as insensitive, but the constant reminders of my mortality and the associated risk of death with the disease, well, they’re tough.
When/If I hear this, I plan to reply with something like, “Oh, really? I’m sorry to hear that their management wasn’t that great!” Did you know that if diabetics maintain proper management that they can live as long, or longer than you? AND complication free? I know, crazy, right?"
When I see my son’s body all marked up from infusion sets/site changes. Lots of red and healing marks that break my heart.
Treating lows in the middle of the night
Seeing my son feel low
Poorer eating habits for my son. Before diabetes, we never really ate candy and only ate real desserts as a treat. i made sure the kids ate veggies with each meal and that they had home-cooked everything. After diabetes, I didn’t have the mental bandwidth to cook, and seeing my son spike from foods I cooked lovingly was kind of heartbreaking. So I stopped cooking as much. Combined with all the sugar to treat lows, and both my kids have become much less healthy eaters.
Whenever you can pull yourself back up again, give that healthy love-filled cooking another chance. I’m 41, and my mom started cooking for me about a year ago. I fill up on her food now and save the snacks for when there’s really no other option. It’s meant the world to my control. I hope you don’t ever confuse what’s happening in his numbers with what he’s getting in his mother’s homecooked meals. There is nothing in a package that can beat it. Unless you’re frying up ho ho’s… Pan-fried ho ho’s might be the exception.
I mean I do cook more now than when he was first diagnosed…but while the idea of mom’s home cooking appeals to them, they complain BIG TIME when I cook anything that is remotely healthy. They of course super duper my pancakes, biscuits or challah or various desserts. But if I try to make lentils or soup or veggies, or salad, complaints on all fronts. And I don’t think it’s because I’m a bad cook because all the adults like it.
This is very true. The emotional effects and indirect side effects can be much more frustrating than the actual management of diabetes. Such as having to think about when/what I should eat for lunch at work to ensure my levels are good in the afternoon. If I eat a food I don’t know as well and things don’t go as planned (high sugar level), then I have to worry about how sharp I’ll be for that important meeting an hour after lunch. Afrezza has helped with this considerably though because I can bring my levels down much quicker than I could with Humalog. I think that if I ever can’t use Afrezza again, then I might consider IM injections. A few people on here have mentioned how well these work for them, and super fast-acting insulin has been so beneficial to my quality of life.
Also, I’m currently interviewing for jobs, and I’m not really sure how to navigate the process of reviewing the health benefit plan before I’m hired (though I suppose people with any medical condition worry about this too). I have an in-person day-long interview coming up soon, and hopefully I’ll figure out how to broach this topic before that. With my CGM and Afrezza, I don’t have to worry too much about staying in range for the interview. That’s nice!
I think perhaps the most frustrating thing for me is worrying about always having access to the tools I need to take care of myself. However, this site has actually helped a lot with that. The thread that @Michel and @Sam made about insulin costs in Canada really helped me worry less about temporarily losing access to good insurance coverage.
@lh378 I have to say that your positivity in writing about the things that improved for you was really inspiring! EH and I often discuss how much of a difference diabetes has made in the way that we eat, and we really think that it’s going to help both of us to be healthy into our ancient years. Honestly, without EH getting T1 in his 20’s I’m positive I’d have gotten T2 as an older adult.
The positive things aside, there are certainly plenty of negatives, and I think in our house it’s both the feeling that you never get a day off from diabetes, and the knowledge that you never get a night off. The lack of sleep is a killer. We decided against having children because we both really like to sleep, and now we don’t get very much because the Dex is going off. Can’t really ignore a 60 though.
I feel sad that it’s a lot of thought and effort and oftentimes he’s at 250 or 45 anyway because we guessed or calculated wrong, or because dinner took 45 minutes longer to hit the table than I expected.
I think EH has managed to avoid the misinformed populace. I am sorry for those of you who run into that! Wowza! Things that come out of other folk’s mouths shock me! Often we do explain the differences between T1 & T2 to people who don’t understand. But I think EH has the thickest skin of anyone I’ve met and people don’t tend to mess with him.
And he’s always so proud to show off his pump and Dexcom to inform others. Happened this weekend while he was showing an apartment that was up for rent - soon he was showing his Dex and OmniPod off too! The prospective tenant’s brother was T1, and they’d never heard of either device. I sent them here to FUD.
I wish management was easier and worked better and that there was a schedule/program/rules to follow that would make it successful again and again. But life isn’t like that, and neither is diabetes. So I tend to remind us both that tomorrow is another day and we can try again then.
I understand this completely I used to use a CGM but decided against it. (I used to set the alarms between 70 and 180 and I used to always be awakened with a false low because I rolled over it, compressed the Dex…etc, maybe insufficiently hydrated…etc)
How much effort do we want to spend on managing diabetes and BG? My endo and I did have that discussion. It was helpful in that at one point, I was spending an enormous amount of effort on counting carbs, managing the I:C, tried the Dex CGM, tried the omni pod; and still not getting great numbers. The biggest impact was the food choices that I made and the frequency of “snacking”. Once I made the decision to eat “more predictably” the BG management became easier. No, I can’t eat whatever, whenever. The lack of spontaneity is something that I truly miss. Yes, I can take an IM shot instead of pre bolusing. That may come with some calculated risk, if I incorrectly estimated what’s in the mystery food. One very useful tip that I learned here is that if I over bolused slightly, it is easier/faster to correct with the fast carb of your choice than to underbolus and chase the high BG. It all depends on if I would be free to monitor the situation closely. If I’m out socially, the last thing that I would want to occur is to forget that I overbolused too aggressively and suffer hypoglycemia. So social occasions are always a bit tricky and I tend to be conservative in my bolusing. BTW - I’ve often spoken discreetly to the catering staff explaining to them that I am a diabetic and I would like to know what foods will be passed around. They have been generally so accommodating that my BG is mostly ok.
I’ve also pretty much made breakfast to be always around 15 g, lunch about 20g and dinner around 20g. This has made BG management SO much easier.
Gah. I know you’re right. Like, I’m sure if we ate at home often and knew what we were eating it would be so much easier. But that’s not our life now.
That’s a fascinating question. One that we haven’t asked ourselves in far too long.
There was another thread here recently about invasiveness in diabetes care which I felt like really touched on this. Our assumption is that the Dex and the pods and all of it are so helpful (which they probably are for most folks). But sometimes it’s too much data and too much work and so many moving parts!
Maybe questioning effort from time to time is a wise choice.
Personally, not much. Which is why I look forward to a totally closed-loop system where maybe all I have to do is change insertion sites every few days. All the rest of the management just happens in the background, please and thank you.
In the meantime, though, in the real world, I still prefer to minimize it. But it takes some effort not to obsess over things, to try to live a “normal” life. If I wake up in the night, I don’t have to check my Dexcom just because it’s there on the bedside table. There’s a glass of water on the table, too, but I don’t have to drink from it just because it’s there.
On the weekend I was up and down stairs much more than usual. I didn’t really think about it beforehand: I didn’t think at breakfast, “I expect we’ll forget something and so I’ll have to come back upstairs a few extra times so let’s either (a) reduce the bolus now or (b) program a lower temp basal to cover the busy period.” I didn’t think, midway up the stairs for the umpteenth time, “This is more trips than I expected, I’d better grab a couple hard candies to suck on so I don’t go low.” No, I just lived through it the way a “normal” person would, and so of course I went low a couple times.
Do I want to be the person who predicts and plans and charts the course all the time – whose life is dominated by his diabetes? Or do I want to be the person who sometimes goes low, oh well, that’s life, carry on – whose diabetes is in the background, fading in and out of focus as the need arises? I’ve spent a long time trying to find a happy in-between, but it’s pretty elusive! Unless I’m already there and don’t know it.
For me, it’s the mental energy I have to put in day in and day out with no breaks - because what’s happening right now is between regular life with several health issues, managing a household with a baby and toddler, lingering PPD/PPA, my daughter having a medical mystery, and my own current medical mystery, I just don’t have the mental energy to do more than “my best,” which isn’t the attention I would like to be giving to things right now, so I feel guilty often for not having my stuff together.
That, and I’d love to make adjustments to my diet to allow for easier control, but, again, energy to devote to that, plus my food intolerances restricting things a bit, that’s frustrating, too.
It was getting to the point whereby I was checking and looking at the Dexcom too frequently, during the daytime and possibly at night time if I happened to have awakened. That’s why I said goodbye to my Dex. If anyone would like a spare one, I’m happy to send it your way.
my pancakes, biscuits or challah or various desserts. But if I try to make lentils or soup or veggies, or salad, complaints on all fronts. And I don’t think it’s because I’m a bad cook because all the adults like it.
Honestly, without EH getting T1 in his 20’s I’m positive I’d have gotten T2 as an older adult.
I used to use a CGM but decided against it. (I used to set the alarms between 70 and 180 and I used to always be awakened with a false low because I rolled over it, compressed the Dex…etc, maybe insufficiently hydrated…etc)
