So I’m still testing, I’m still dosing as best I know how and eating how I’ve been eating, but I’m not recording anything (I’m usually a meticulous record keeper), and I just don’t care about it. I don’t want to do it, don’t want to see the records; I just want to do what I gotta do and move on. Since I’m learning how best to use the Afrezza, I need to be keeping better track of things. So how do YOU get past the days when you just can’t be bothered to do what you should?
@Pianoplayer7008, this is an excellent post. And a question with which I often wrestle too. I wonder in reading whether it’s true that you just don’t care about it. Perhaps it isn’t that you don’t care as much as it is that it is so much to manage. And that in recently having a baby, you’re managing even more than you were prior to your diagnosis. So it’s one overwhelming thing on top of another.
I once saw a segment on perfectionism that fascinated me. The segment was talking about how sometimes disorderly people are really perfectionists that can’t manage. So to look at this person’s mail pile looks like utter chaos, but man do they know how to meticulously organize a towel closet.
All of that to say, maybe baby steps could help. Like tallying carb counts in your head. I kept meticulous records while I was pregnant and haven’t recorded a thing since practically–in part because there’s just so very much to figure out–and so many little ones who need my help. I do rough calculations in my head for my meals which always target around the same number of carbs, and most of the time I wing it (as long as I feel pretty good about the carb ballpark) while keeping a close eye on my cgm.
It helps for me to stay below 100 g/day. I really hope you get your cgm soon. That makes life so much easier!
After my son was diagnosed, I went through long periods of time when I was totally neglecting my own health (I have a few issues I need to follow pretty much daily) – a bit the same syndrome as you I figure.
What I find, for myself, is that the way things work out for me is if I can have a routine, an MO, something I can always do the same way, day in, day out. Last spring, I had been able to get back onto a good rhythm for myself. The arrival of summer, which is totally unstructured with the kids, destroyed my MO, and I have been out of control all that time. Now, with the kids going back to school, I am starting to restart a routine again.
The other side of it is this forum. When my son was diagnosed, I went into a dark rage that did not leave me until a few months ago, after this forum coalesced. The interactions I am having with everyone here are the way I can find reason again: no more rage or feeling of powerlessness, on the contrary. I feel like this forum is giving me back both control (through knowledge) and serenity (through the empathy of my peers).
I wish I had the answers. For me, then, what works best is (a) an easy process to follow daily and (b) this forum
Remember that you have a group of four people here that will be cheering for you from the moraines of rural Wisconsin!
Are you managing ok when you do it that way? I am a big proponent of using instinct in D management. If you are still able to make adjustments and have good control without recording everything, I think that is fine.
Lots of diseases get progressively worse with time. I think diabetes is the opposite. We get smarter, so our management gets progressively better.
Don’t beat yourself up because you didn’t write down a number!
I agree with @Eric but will put another spin on it.
I flip back and forth between two modes. I’m either (a) actively experimenting, or (b) managing diabetes in the background while focusing on living my life.
In mode (a) (active management), I’m recording data. I record meals, exercise, insulin, take pictures, keep notes as a baseline, and then run experiments on top of that. “What happens if I eat sugar right before I exercise?” “What happens if over-inject for dinner and plan on having dessert?” Frankly, I find this exhausting and I can only keep it up for about 3 weeks at a time. It’s the data management that kills me.
the rest of the time I’m just (b) living my life. If I go high I inject, if I go low I eat - I’m paying attention and still have self control, but I’m not spending hours a day logging every little thing. In fact, I keep almost no notes at all. I’m not trying to learn during these periods - I’m focusing on my day job, or I’m at a conference, or I’m on vacation.
My theory is that if I do enough active management and experimentation, I can learn how to live my life and remain well-managed even while not taking meticulous notes.
In short, my recommendation is this:
DON’T try to get past those days when you just don’t care.
Instead, care very much when you’re learning, and then just manage your highs and lows casually without being a data scientist when you just aren’t in the mood.
If you’re going high or low all the time, then you haven’t really earned that freedom and you sort of have to care. Sorry, it sucks. But if you’re doing okay on average, then I’d just give up on record keeping until you’re in the mood.
@Pianoplayer7008 Your situation was my own for a very long time. What I found particularly difficult to do was to record everything, so I just didn’t.
What got me to start recording was the right technology. I started with a Palm PDA about 15 years ago and wrote a database app that made recording easier.
But the most impactful technology came to me about 12 years ago–a CGM. I firmly believe that if you use insulin you need a CGM.
Now, with further refinement of technology recording has become a breeze. Bg automatically goes to xDrip+, it’s quick and simple to add carbs and bolus info and notes, and the app massages all the data into great reports.
So, for me, technology was the key. Starting with a CGM.
I can’t have any of those kinds of days as the caregiver for my 3 year old because he can die if I have that mentality. I hope to instill into him the same type of mindset. Not caring can lead to death and deprive his parents and siblings of the love and relationship that we desire and need. Although I’m not diabetic myself, I feel like I kind of do since I’m a caregiver to one. I can imagine how rough it can be from time to time, but it’s “our lot” in life and it’s our job to not let it win.
I experienced, as @Michel, very dark times, very emotional times…many months of crying both around my family and behind closed doors. When I finally accepted this as “our reality”, I just decided that, as with everything I become involved with, that I would do whatever I needed to do, no matter what, to ensure that I do justice to Liam and don’t hurt him either now, or in the future, with the decisions that I make every second of the day. As such, even if I have the “don’t care” days, I can’t let that be my reality.
And I hope that the example I set as his caregiver will help him in making the correct decisions when he gets older. And if he’s having especially rough times coping, I hope he knows that we will always be here for him to help him through those rough patches that I’m sure he’ll have. But he will know that his parents are never OK with just giving up or not caring. Because to not care isn’t fair to anyone, including himself.
@EricH, I think this is a really great way to manage things! We do something similar though I never consciously thought about it. I am actually always looking at data but most of the time I just run with a setting or a protocol, and after X number of days of things being off I usually decide I’m in data-collection/experimentation mode and then set a specific period of time – say a week – evaluate the change.
It does help to know I will get to solving the problem eventually and that day-to-day we may just have to ride the waves.
I liked that you pointed out that it didn’t have to be data/collection and experimentation mode Every. Single. Moment.
Of course, yes, all the T1D folks/parents don’t actually get a day off or a true break from the disease. But being able to not beat oneself up about the uncontrollable elements is smart. And know that your hard work is recognized - I am so proud of people who work hard to make their lives better, and everyone here is certainly one of those people.
@docslotnick seems to have found better data management stuff than we have, and I appreciate the nod to technology as help. We are slowly working on that. It’s hard to not want everything to just work, and to have it all work right now. My shrink points out that most things take time, and it’s worth the investment. Bad days happen, but we move on.
Thank you all for your responses - they’ve been an encouragement to me reading over them throughout the day.
That’s a very good point, and very true. Just yesterday, my doctor walked in and said with a sympathetic sad face, “This is just too much for one person to handle.”
LOL wow, that’s me exactly. You should see the piles and boxes of papers I have everywhere (ok, maybe you shouldn’t see it ), but I am SUPER organized. Fascinating…
Routine is something I’m missing…I have tried to get back into some semblance of routine since baby was born, but it’s slow going. And thanks for the cheering on - this forum DOES help a lot.
I am managing ok, actually. The only high I had today was a “new” food (trying waffles with Afrezza - yum). And @EricH, that really makes sense and you both may have hit on where I’m at - maybe it isn’t so much just not caring as I just am focusing more on other aspects of life and just feel guilty for putting the constant tracking and calculating to the side.
I literally cannot wait until I get mine. I feel like it will make all the difference for me as well, especially with now using Afrezza.
First off, I just want to say again how in awe I am of parents of CWD - I cannot even imagine handling that (and I pray often that I will be spared that, but especially that my children will be spared living with this disease). And to your point, I think that’s part of why I feel so guilty when I’m not constantly “on alert,” checking, recording, calculating, reviewing, etc etc. I want to be here as long as possible for my family’s sake as well as my own, so anytime I’m doing less than EVERYTHING I can to manage things, I feel like I’m failing them (and myself).
Ugh, it is so hard. I get discouraged very easily when things don’t go right (and currently having some emotional issues that exacerbate this part of my personality exponentially), so it’s hard for me to move on past the bad days, which is why I get so easily burned out. I’ve joked about this many times since my diagnosis - I’m too much of a perfectionist to have diabetes LOL
At some point I accepted that A + B doesn’t always give the same answer.
But I remember those days when I asked, what did I do wrong, instead of what can I do differently to maybe predict which outcome I might get from A + B.
Then add in C,D,E,F and G.
With the tools we have today, it’s easier to react/adjust on the fly sometimes, rather than be frustrated by unexpected outcomes. Jelly beans to go up, Afrezza or bolus to come down.
One of the members of a FB support group I’m part of always reminds newbies (like me…) that there aren’t good/bad numbers - there are just numbers that point you toward what to do similarly or differently next time. If I could only remember not to think “bad” and “what did I screw up” when I see those numbers!
All we can do is the best we can do. Every day I screw up something…if I dwelled on that, I’d go insane. I just make mistakes, try my best to learn from them and continue moving forward. No one can do everything right all the time. Just today when I was at work my wife fell asleep and Liam dropped “LOW” for about 20 minutes before she realized and corrected. Then an overcorrection took him to nearly 400. Definitely not perfect…but we aren’t going to beat ourselves up over it. We talked…come to find out, Liam (since he’s sick) just wants to cuddle with us…she didn’t even want too - she had things to do, but to make him feel better, she laid down with him…and you know how that goes when you’re tired. You doze off. Things happen. Lesson here is (her take away)…he’ll cuddle all day if we let him, but we’ve got other things we have to do…so we just have to tell him cuddle time is later (unless he’s REALLY really sick.) Also, I would have been able to call her as I was in the office today, but coincidentally my wireless was out in the office so I didn’t even know she dropped low until I left and headed for my truck. Funny part is that she knew something was wrong either with me, or my phone…because I call every time, as soon as they get into the uncomfortable zone. But today I wasn’t able to track the numbers, and I didn’t call her.
The point is…never beat yourself up over it. We don’t. We try to learn where we can and just keep on trucking…trying to make tomorrow a better day than today.