Some of you have gone decades with T1/Lada
What are the usual mistakes and what is the secret to doing this right ?
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The secret is that there is no secret to doing it right. And no one way of doing it right. There are a zillion variables. I suppose one way to do it right is to figure out the way it works for YOU at that moment in time. And keep your eyes open to changes.
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Probably the most important factor to âdoing it rightâ is simply to care about your health and longevity. My doctor is burnt out after more than 30 years of being an endo, due to so many patients caring less about their health than he does. I know I could never be an endo as it drives me nuts when I talk to diabetics who claim âwhat I donât know wonât hurt meâ when asked why they donât test their bgâs. He is going to take a 3-4 month break, because of the stress.
Most will probably say âthere is no âdoing it right,ââ and I agree. But âdoing it betterâ is always possible. And as a T1D since 1983, I can testify that the tools for âdoing it betterâ are vastly better than they used to be. Mostly, handling this disease is a matter of data, and the more you have to work with, the better. Fortunately thatâs the area where weâve been seeing the most rapid improvement, in part because of the advent of CGMs with sufficient accuracy to be useful, and in partâas a consequence of the formerâbecause of the proliferation of apps and devices that let you monitor, capture and analyze the data from those CGMs.
At the granular level, too many to number (just about everyone on MDI accidentally switches their basal and bolus doses at least onceâWait, did I just take 40 units of Novolog???) but I assume you mean something more general than that. In that regard Iâd say the answer is, again, that phrase âdoing it right.â You have to somehow cultivate the attitude of trying to keep things in line while accepting that sometimes your BGs wonât behave according to plan, without having it drive you nuts. Iâm struggling with this right now, matter of fact. For no apparent reason my BG is heading up and up this a.m. even though thereâs no change in my usual routine and nothing wrong with my insertion site. And hereâs a fun mistake: I just got my low reservoir notice, which is set for 12 hrs but if I keep taking correction boluses Iâm not going to have enough insulin to have lunch without running on fumes before itâs time to leave work, and I forgot to bring a Novolog pen with me today, which Iâm supposed to do when my reservoir is on its 3rd dayâoopsâbecause day-3 absorption fade is a thing, and thatâs probably whatâs causing the BG rise in the first place. Damn. So I am currently not doing it right at all, but Iâm trying to ignore the voice in my head that is saying âbad diabetic! bad bad!â because there just are going to be days like this and you canât let it get to you. Though I suck at that (somewhere I have a post here on the topic of the âRage bolusâ).
In less immediate, more helpful terms, probably the single most frequent advice Iâve seen around here that has implications for just about everything, is that the narrow-focused obsession with A1C that is so deeply ingrained in the whole system around D treatment needs to be reexamined, at least among those of us using CGMs. A1C was all we had back when there were only fingersticks, which only provide little snapshots a few times a day, so an âaverageâ of BG over the last three months was better than nothing. But with CGM we have so much more data available that we can attend to the much more meaningful statistic of Time In Range, compared to which A1C is very crude (you can get a really âgoodâ A1c by having lots of hyposâitâs an average).
One other attitude thatâs characteristic I think of this site: you are the expert on your disease. Doesnât mean you already know it all, of courseâthereâs always more to learnâbut itâs more about taking ownership of your treatment and learning what works for you. Because what works for you⌠works for you. Kinda like what Duke Ellington said about music: âIf it sounds good, it is good.â Or as we put it, YDMV: Your Diabetes May Vary.
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Short bit of advice that @David_dns notably likes to repeat: Diabetes is a marathon, not a sprint. Some days just re better than others, but the goal is success over the long term. Having more on-target days than not helps. Individual deviations.
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56 years. It is always a marathon , Thas. T1 changes. Dose requirements change. Treatment changes.
It is what it is.
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My thinking is there are no mistakes, and not to expect 1+1 to always equal 2.
We can control or influence only limited inputs, and many known or unknown things we canât predict each day.
One analogy I have shared with family: when you drive to the same store on the same route, could you close your eyes and get there safely, since you have driven it thousands of times?
Of course not. Each time will be slightly different, and you adjust as you travel. Some days you may take a detour, or drive slower due to bad weather, etc.
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Wow, the list could be so darn long!!! The things one learns over decades. But my biggest and easiest and where I get the biggest bang for the effort is pre-bolus. Learning how to time it based on current blood sugar and type of food. It can cure most post meal spikesif done correctly?
@Sally7 when you said that, I was reminded of another post I had recently seen. Amazingly, I found it!
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Pre Bolus as much as possible and then donât forget to eat. I kept my Lantus as a vial/syringe and my Humalog as a pen to try to make sure I never mixed them up. Try not to be distracted when taking your insulin, for so many reasons. And going on a CGM and then a pump!
Drops in the bucket, so many things to still always learn!!!
This connects with a philosophy of diabetes management offered by Chuck Eichtenâs Book of Better: Life with Diabetes Canât be Perfect, Make It Better. No practical value in beating yourself up for a recent mistake. Just acknowledge it, learn from it, and make your next attempt better. This way of thinking has helped me, a lot.
My diabetes journey now exceeds 300,000 hours. You can not got very far, be very healthy, or very happy if you beat yourself up along the way. Pick yourself up, dust yourself off and move on! If you learn from your mistakes (Iâve made them all and have even invented a few new ones!), the knowledge you accumulate will be awesome and greatly enhance your quality of life. It permits you to win way more than lose, which then stokes your motivation engine.
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Stay insured. If you have insurance, make sure you donât lose it. I was continuously insured until the recessiom hit. I lost my job, as many did⌠Iwas newly divorced and exhausted my COBRA coverage, and the only insurance I could buy would have cost $4,000 per month. For the next year I was uninsured. I had to cash in all my savings to stay alive and I ended up without a car, without a home, underemployed, and with an additional $65K of hospital bills. Itâs no fun to have T1 with no way to pay for insulin. Makes me want to scream that Novo Nordisk is a sponsor of this site since it was the price of Novolog that made it impossible to live. $74 / vial in 2007 and $317 / vial now. It put me in drug addict mode, where I was playing musical chairs with money for my next fix which translated into 18 more days of life.
Thas,
A life long marathon⌠with no end in sight.
Hello TerryâŚ
Interesting description⌠have to give that image some thoughtsâŚ
I agree with the person who stressed data and technology⌠since my diagnosis in 1981, where I had to wait 1 minute for a glucometer reading, to my new cgm watch using the freestyle libre, and taking pictures of my food using the bitesnap app, technology really does help. The most important tip I can offer is to find an endocrinologist or registered nurse practitioner that you trust and figure out your important numbers⌠daily basal amount (roughly based on weight), your carb to insulin ratio, and how many mg/DL will 1 unit of insulin affect youâŚonce you have those numbers, youâll be much better off.
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Which came after the days of testing urine in a test tube, and then the convenience of urine testing with test tape and strips to see the color change. Meanwhile your blood sugar may be back to normal.
I remember waiting 2 minutes for the first blood testing. First waiting a minute with blood on strip, wipe it off, then wait another minute. Initially visual compare to colors on bottle, and then later read by meter to produce an exact number. (Not necessarily correct!)
And not get distracted by anything so as to miss the 1 and 2 minute marks!
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I needed your example of how your day was going and I love that I understand what youâre going through! Iâm new to this site and to sharing experiences and this whole support group thing but Iâm starting to see that Iâm not alone in my frustrations. Some days Iâm just fed up with everyone and have a short fuse but I think that I have a lot of bottled up emotions about little things that come with diabetes management throughout the day and I donât have anyone to talk to about it or who understands. I donât know anyone with a pump or anyone else with type one who needs to take insulin so Iâm literally alone on a daily basis. I need to continue to visit this site because posts like these help me remember that I can do better and to stay on track and to not get so worked up on every mistake.
as a funny side note reply to your âwait, did I just take 40 units of novolog???â the other day I wasnât paying attention to where I was typing my blood sugar in on my pump and It gave me an error message saying something like exceeded the limit to the amount of insulin at one time kind of message and I had plugged 200 into the carbs section instead of the bg section SMH I was just like what is going on with me today???
I like that analogy and I have never thought of it that way. I like it and that really gives me a new perspective on how I look at my daily routines.
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So true. This is something I am working on - not being driven nuts by it. Yesterday I ate bread for breakfast. BG went down perfectly afterwards. Today, same type of bread, same hour, BG was fine post-meal, then all of a sudden it shot up to 140. I suspect that perhaps the carb concentration in these slices of bread were higher than usual, or maybe some of the Humalog didnât make it, or ⌠well, who knows.
I want to take this opportunity to ask the veterans something. You have seen your fasting, pre- and post-meal numbers, with fingersticks, with CGMs. Do you have general ranges where you say ânah, doesnât concern meâ? For example, you ate some bread just like me, and thereâs a late spike ~3 hours after. Up to what value do you not bother, or when do you feel concerned etc.? The official recommendations are strictly about pre- and postprandial values, but BG control is more than about these.