Do you give diabetes its due?

Mental and Emotional Wellness
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This post was inspired by a comment @Jen made in the Canadian tax thread.

Thanks, and no offense taken. I just read your post on my lunch hour and it touched a nerve, not only because I spend a lot of time managing my diabetes, but because I don’t think it’s a “bad thing” if someone needs to spend more time on diabetes, especially if that’s what’s needed for tight control. Whenever I’ve slacked off and spent a more “average” amount of time on my diabetes my A1c creeps up into the 7-8% range (instead of 6% range). It makes me wonder how many people in “average” control would benefit from upping the time they dedicate to diabetes.

I’ve mentioned this topic before, so please excuse my repetition. When I retired six years ago and soon received a diabetes complication diagnosis, I made a personal commitment to give diabetes whatever it required in terms of my time and effort.

That extra effort delivered many personal health and emotional dividends I enjoy to this day. I basically told myself that I would do whatever it took to rein in my out of control blood glucose. One of the things I did was adopt a lower carb way of eating that I had considered and procrastinated about for more than a year. I would do as many finger pokes as I thought necessary. I committed to walking every day and also going for a walk at almost any hour if I thought it would help my blood glucose. I consulted with a diabetes educator to help me overhaul my pump basal rates. I spent hours every day reading and writing about diabetes. (To readers of the Canadian tax thread, during this time period I could have easily documented 40 hours per week on my diabetes.)

Realize that I had the luxury of making this commitment since I was retired and my time was my own. I know not everyone enjoys this luxury. I certainly didn’t when I worked for a living.

What I discovered with this exercise surprised me. I wasn’t too surprised that my health improved but I was surprised by how much it improved. I lost weight, dropped my A1c, reduced my average blood glucose and variability, and felt better, both physically and emotionally.

Prior to this real-world experiment, I viewed diabetes as a nuisance in my life. I knew I couldn’t ignore it, but I steadfastly refused to give it everything it demanded. I wanted to “protect” my other interests in life from a bottomless pit of diabetes neediness. There’s a natural tendency to do this since most of us need to work and we also have important family and social commitments that we don’t want to short-change.

My most surprising discovery in this trial was that diabetes is not a bottomless pit of neediness. I found that as my health improved, my energy and emotional capacity increased. In addition, my new activities like low-carb eating an walking became integrated into my life as habit. Their “footprint” in my life diminished in reality and in perception. What I was left with was a diabetes habit that consumed no more of my life than before I made these many changes.

My n=1 anecdote convinced me that it is totally worth the effort and I could have done this before I retired, albeit in a more limited way.

My question to you is this:

Are you willing to devote more time, energy, and personal resource to your diabetes demands in exchange for better health, more energy, and a brighter attitude?

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I had been very involved and dedicated to getting my A1C down and improving my health. Then I had trouble getting my insulin, and that started a downward spiral. My A1C went from 6.8 to 9.3. I didn’t care because I couldn’t get insulin prescriptions in a timely fashion, doctor’s office “lost my medical records”. They changed EMR software 4 times and that is how they were “lost”. I now have managed to “stockpile” a decent supply of insulin, so even if the doctor’s office “loses” my medication list, I will be okay for a few months.

I have subscribed to OneDrop service and that has helped me enormously. I test frequently, log food and insulin and activity in the App. My BG’s have improved significantly and this motivates me to do even better. (I am a data, numbers, driven person.) I have increased my exercise to 6-7 days per week and include strength training. I am back to following a Low Carb diet.

I just had labs drawn at doctor’s office and am anxious to see the A1C result, should be much better. The PA I saw also had my TSH, Free T3 and T4 drawn, as the last TSH was 9.25, and I have been having symptoms of hypothyroidism. This visit was much better than previous visits when I saw the doctor. She actually listened to me and looked at my blood glucose data.

So in answer to your question: I am absolutely willing to, and have, devoted more time and energy into the demands of diabetes. I hope to see better health, more energy and a sunnier attitude going forward.

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Congrats on regaining control! Your experience with losing dependable access to insulin is the reason why many of us build up a safety cushion of insulin. This truly means life or death to us. It’s a reasonable fear.

For me, the mere observation of my BG data will make it better! It’s a strange personal phenomena that you seem to share, too. Keep up the good work!

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I currently do not give diabetes its due. What seems worse is, I don’t really know why.

I’ve been doing this for 24 years total, pumping for 11. I know what I need to do.

12 years ago, I crawled through H#!! on my hands and knees blind (a much less metaphorical statement than it sounds) due to complications, and by the grace of Flying Spaghetti Monster and the amazing skill and talent of two eye surgeons to whom I literally owe my entire life as I know it today, I came through the other side upright. I know what not obeying this disease can cause.

So why? Why do I not make darn sure I get every single BG check in every day? Why do I casually estimate carbs at the end of a meal and Easy Bolus an approximation, instead of never failing to use Bolus Wizard? Those two things alone would bring my A1c into the low 7’s instead of 8+ or worse. I know, because I’ve done it before. I once brought my A1c down a full point in 4 months by simply being dedicated to the BG checks and then acting accordingly.

So again, why? Why do I keep cycling back to this place? Is it because I’m still in the working world and I think that makes me too busy? Is it remnants of my old rebellion against the machine that is this disease? Have I let myself forget my blindness because I see 20/30 from my good eye today and can drive? Am I just lazy and unmotivated?

I need to figure out how to re-motivate myself, but I’m not sure where to start.

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We are all different, so you’ll need to reflect on what motivated you in the past. I’m motivated by numbers so when I start following my numbers, things start to naturally turn toward the better.

Identify one small, yet significant, thing that you may do that would help. It could be using the bolus wizard for breakfast. Starting small and steadily building on it is a good strategy.

Or you could do just the opposite and throw in with both feet, like @Laddie, in this comment in the Flatliners thread. She’s doing the Whole30 program which I think is a 30-day plan. She says it is “boot-campish” but she felt she needed a reset.

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I don’t give diabetes as much attention as it demands. I know that I could get better control if I did so, but there’s a balance that needs to be achieved between diabetes, other health needs, and the rest of life. I need to find a balance where I give diabetes enough attention that I’m in satisfactory control, but not so much attention that I feel it’s controlling my life. I think that, were I retired and could devote all the time I wanted to diabetes, I’d probably do so. But I find right now, in the midst of working full-time and doing part-time graduate school, with the prospect of starting a Ph.D. in the not-too-distant future, in the midst of building my career in a field I am passionate about, with wanting to travel and work, I can’t control all the aspects of life that help with diabetes management. My activity level varies greatly from day to day. My stress level varies. My exercise varies. Other chronic conditions interfere at various times. I find it difficult to stick to a very low-carbohydrate diet. I went through a period where I ate a very low-carbohydrate diet and, though it did help my control, it also sucked any enjoyment I had out of eating, because I had to prepare absolutely everything I ate from scratch myself. There was no such thing as eating out or eating any type of convenience food. I bring my own food almost everywhere as it is because of multiple food allergies, but there are some convenience foods I’m able to purchase, and there are a handful of times a year where I do eat out. At times when I do eat out, sometimes carbohydrates are the only food available that I can eat. For example, when I go to conferences, I request a special meal from the hotel because I can’t eat food from the buffet (due to risks of cross contamination), and most of the time the meal they provide is rice or quinoa or something similar. At a trivia night several months ago, the a quinoa salad was the only item on the menu that I could eat, and it was delicious. Turning that rare opportunity to eat food I didn’t prepare myself down just because it was higher in carbohydrates felt like I was letting diabetes control me. I also don’t have a consistent, daily exercise schedule, though this is something I’d like to change. So, no, I don’t give diabetes its due. But I do give it enough attention that I believe I’m in “good enough” control (and in fact “excellent” control compared to the average person with Type 1, keeping in mind that TuD does not represent the average).

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It wears me out just reading about your activities! Striking the right balance is the key. Good luck with your ambitious career goals.

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Man Terry4 you are spot on start to finish here. I adopted the same “no option to fail” attitude towards my diabetes. I spent at least 30 to 40 hours a week studying and learning for the first year. This was while I was still working. But I knew nothing and was starting from scratch. I was motivated to reverse my complications. Had it not been for them, I don’t know if I would have done the same.

And you are right, once you figure out what works and understand how to keep figuring these things out, it becomes more second nature. You create new habits based on your new realities. And life goes on.

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Incidentally, part of the problem with the Disability Tax Credit criteria in Canada is that likely you couldn’t count 30 or 40 hours towards diabetes, even if you did spend that much time towards diabetes. This is one of the major issues with the tax credit. The criteria is picky and doesn’t allow one to count things that may take considerable time and be very important to good diabetes management (like carbohydrate counting, recovering from highs and lows, reading books or forums to learn, or time spent exercising). It literally only allows you to count time spent directly engaged with your diabetes equipment. Anything beyond that is moot as far as they are concerned.

I do agree that once you have a routine down, your time dedicated to diabetes does tend to then decrease a bit. But it still takes a ton of time! The challenge is finding the balance in time between diabetes and other committments. I found that I had to put diabetes at the top of my list and keep it there in order to make the time it needed. The biggest thing I could do to help with my control that I don’t do is sticking to a low-carb diet. Mostly because of the cooking aspect, which takes hours every week. I’ll be starting an internship in the fall where I want excellent control, though. I do not want to have to worry about going low while out and about teaching. So I’m going to try to start eating a lower-carb diet again and see what I can make work. Things are obstacles now, but part of the initial time committment is sorting them out. Once that’s done, it becomes more of a routine and less tine-intensive.

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Have you considered getting a CGM? It makes it a lot easier to stay on top of everything, because you can just glance at it during the day even if you are busy or with other people, and correct before things get out of hand. The Dexcom is so accurate you really only need to test when it needs a calibration too. I’m using the old model, the G4, which is still so accurate I only test 2x/day - when I wake up and go to sleep. There were so many times I would guesstimate my blood sugar before I got a CGM, or not test out of laziness before I went to bed, often waking up with crappy morning blood sugars. It’s harder to be lazy with the Dexcom, and I find it a good motivator because it’s like a game where the goal is to keep your numbers between the lines at all times. I’m lazy too though and love the easy bolus feature, but found a way to use it effectively for corrections. You can figure out approximately how many units bring you down 1 mmol/L or 18 mg/dl, set the easy bolus preset to that amount, and then push it the right number of times to bring your BG back to target when you see it go high on your CGM.

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I have been putting in a lot of time and effort since late last year. A lot of people struggle with lows, but for me highs are way worse. I always had “acceptable” A1Cs (though I wouldn’t find them acceptable to me any longer) but I couldn’t take high blood sugars making me lethargic and unable to think clearly. I need to be focused and able to think and speak on the fly for my job, and it’s not easy to do when your mouth is all dry and feel like your head is the weight of a bowling ball, which is what blood sugars over 9 feel like for me. I think I’m fortunate having been diagnosed in 2006, being put on a modern regimen of NovoRapid/Levemir immediately, getting a pump approximately 3 months after diagnosis, and in the age of glucometers and mandatory nutrition fact labels. Even at my laziest my control was never that bad, and like Jen would always have been considered excellent compared to the average t1. I can’t imagine how it would’ve been on 1 shot of Lente a day in the 1970s like my dad had to do - though he has no real complications still, so maybe it’s just luck!

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My endo has been wanting me to. I’m super skinny and have always been of the mindset that I have enough trouble getting one good site at a time let alone two–that I could be more excited for a CGM if/when it can all be done from one site. I’m still toying with the idea, but again it seems like more work than I already don’t get done everyday, if you know what I mean. If best laid plans fail because I don’t stick with it or can’t make it work for me, that’s a big waste of money, time and energy. I am still contemplating though.

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I don’t have much fat on me and struggle with pump sites sometimes as well, but I don’t have trouble with my Dexcom. It’s a very thin wire, much thinner than a cannula, and seems to work even in sites where I know I have scar tissue and wouldn’t dare infuse my pump. You can also use it on your arms or legs. Lastly, it’s less maintenance than the a pump - even though they say you have to change it every 7 days, which is still better than 3, I can usually get 2-3 weeks out of a sensor.

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Thank-you to all for your thoughtful and genuine comments to this rhetorical question. There is, of course, no definitive answer to what I’ve asked. The value in each of us posing this question to ourselves is that it invites us to take a fresh look at our underlying assumptions. It’s about the most vital discussion we take part in every day – the one with ourselves.

I think this kind of exercise is just as important as visiting the opthamologist regularly. We put so much of life on auto-pilot so that we don’t drown in the minutia. I get that. But doing that can prevent you from candidly examining your life from time to time and making good choices in a timely way.

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This is a very engaging and helpful conversation. You are right Terry4, we each need to find that sweet spot for our management. I know that I could do even better to make my blood sugars more stable, more of a flat profile. But, like you (and everybody else) there are just things that I do not want to completely give up.

Going low-carb was easy for me for a couple reasons. I already ate a relatively limited carb diet. I just did not eat a lot of breads and starches (except for chocolate chip cookies of course). Then when I found out I had diabetes I just dialed it up and dropped almost all carbs for a while.

Then I found out that I also had celiac disease. That made low-carb even easier to do. But it made me, absolutely with no exceptions and no freebies, leave a number of foods that I absolutely love, never to eat them again. Still, I have assembled a diet that works for me. It is very low-carb and contains little or no grains. I have also found things that I can replace my pleasurable foods with. Mostly fruit and nuts.

This is why I tell people that in order to do this successfully your diet means to be one that you have created. You are not going to find an off-the-shelf diet that fits you completely. Eventually most people will regress.

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It does take a lot of time to do this. Along with that, it takes a lot of knowledge. Both of yourself and diabetes as well as any other health or dietary issues you face.

I have found that the only way I can stay on the straight and narrow is to have the right kinds of foods on hand and ready to go. When I cook a meal I try to make enough to have some leftovers. I usually spend part of one day (usually Monday) prepping food for the week. But I am at home all of the time. That means there are a lot of variables that are not part of my routine. This does make it easier to do, that is for sure.

Jen, in my humble opinion you are doing exactly what you need to do in order to stay healthy and still engage in life. Your goals and ambitions are impressive and important to your well-being. You inspire me. I have read many of your posts over the last several years. They are no small part of the reason that I stayed on course while battling my complications and learning how to do all of this.

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Wow, @Randy5, thank you. I’m glad that my posts have been helpful to you over the years.

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Change your mindset, please!

Real estate is at a premium for me too, and I was also resistant to the CGM for the same reasons. However, once I started with the Dex CGM sensor, I realized that it’s different than an infusion set. As @Scott_Eric pointed out, it’s way thinner than a canula, plus insulin isn’t streaming out of it into your body, which I think is one of the significant factors in scar tissue build-up. Also, I wouldn’t want to have them combined and then be faced with pulling out both the canula and the sensor every two/three days.

That doesn’t mean that sensor insertions all work perfectly, however. I had a stretch last summer where I had been bike riding for many consecutive days and I had to go to a completely new area before I could get a sensor to work.

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It doesn’t matter how much time I devote- a lot- I still never feel well anymore with this disease. It saps all my energy and more. There is never a moment free of worry about what’s coming next.

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Speaking entirely personally, I do put a fair amount of mental effort and concentration into maintaining good enough control, but I don’t find that the actual total TIME spent out of a typical day is very great. In fact if I add up how long I spend doing fingersticks, pressing pump buttons, changing infusion sets and pump cartridges, changing sensors etc., I doubt it adds up to more than an average of 15 mins per day. I do look at my CGM trace pretty frequently but how long does that take? A few seconds maybe, plus a few more if a correction is needed.

I probably wouldn’t eat very differently if I were miraculously cured tomorrow. I know most of my carb-count information and tend to work by eye anyway so not much time saved looking at labels.

So it is not actually the total time spent that is a problem. It would be really nice to have a functional AP system as this would save the mental effort but it wouldn’t save me much time.

Joel