Diabetes, a huge task added to already busy lives

#1

I participated in another thread today about the external world’s perception of our “obsessive” diabetes habits contrasted with the reality that we who actually live all day, every day with diabetes, experience in our world.

Layered on top of what most people would consider a full life of family, work and attention to typical physical health issues is a whole other dense, demanding, and fastidious requirements that diabetes ceaselessly exacts.

My diabetes day

The first thing I think about in the morning is my diabetes. What’s my number? Do I need to add insulin or glucose? Did I take any overnight insulin corrections and what effect, if any, is still in play. What and when will I eat breakfast. How much insulin will that require? How much pre-bolus time will be optimal? What was my glucose experience the last time I ate that breakfast? How old is my insulin infusion site? Is it getting stale? How do I feel? Does my perception of well-being square up with my glucose measurements?

I’ll then assess my intended schedule for the day and verify that my diabetes “kit” contains everything I might need while away from home. Do I have enough test strips, insulin, extra infusion sets, insulin cartridges, a spare CGM sensor, and the all-important emergency glucose tablets? Did I forget to bring my CGM receiver with me and leave me blind to the dynamic glucose trace that can often move in unexpected ways?

Diabetes supply manager - a thankless task

Some days (more than I care to think about) I must put on my diabetes supplies manager hat and figure out which supplies I need to replenish. I wish it were just a matter of putting in an Amazon order and then things show up in 48 hours. Instead we must negotiate with the doctor’s office regarding an appropriate prescription order, deal with the supplier and often the pharmacy benefit manager.

For me, it is the rare supply order that doesn’t hit some kind of snag. When an order stalls, the party failing to act often does not raise an alarm. The process simply stops. You are required to get on the phone, spend an irritating session negotiating the phone menu system trying to simply get a responsive human being to answer a supply status question.

Since there are more than two parties to this transaction, when the process breaks down, the accountability finger-pointing proceeds in a circular fashion, delaying identification of where the snag exists and who must step up to fix it. Of course, no one else, neither doctor, nor supplier, nor pharmacist, nor pharmacy benefit manager suffers the consequence like the person with skin in the game. If you don’t manage the needed supplies before they run out then an additional layer of crisis and emergency get injected into an already distressing and frustrating mix.

Attention to survival

Every day contains events that absolutely require knowing your glucose status before proceeding. Fingersticking before driving is one such event. You need to examine and analyze your blood glucose status before exercise and develop and execute a plan that requires customization each and every time.

You need to think about what you’re going to eat and when. Then develop a plan to answer those needs. The plan must include insulin dose size and timing. Insulin dose size is influenced by the carb, protein, and fat content of the meal, current glucose trends, and your last glucose experience with that meal. You have to take into account whether you are coming down with a cold or you notice some developing insulin resistance.

You don’t have to pay attention

You are free, however, to ignore this level of attention and “fly blind.” Uncontrolled diabetes, however, is chaotic, unhealthy, and seriously degrades quality of life. Playing it by ear and improvising often sets the stage for a metabolic disaster.

This entire “daily diabetes script” is not visible to coworkers, friends, and other outsiders. They often see diabetes management in terms of simply taking an insulin shot before eating. They’re not likely to understand the stressful dynamic that can take place after you’ve delivered and timed your meal insulin dose and your restaurant meal gets delayed. To them it’s just an irritation and inconvenience, not a metabolic crisis!

The perceived important issue for most outsiders is our having to dose insulin with a needle. I wish that were my biggest challenge. Injecting insulin is the easiest thing I do to treat diabetes!

Every meal and snack requires deliberate and appropriate decisions and action. Get distracted by the 101 other things that life can throw at you and you can miss delivering your insulin far enough in advance to give your metabolism a reasonable chance to match you post-meal glucose absorption curve.

Falling asleep - no time to let your guard down

Even going to bed at night requires analysis and planning. Is my glucose level safe enough to fall asleep? Did my exercise (or lack thereof) having any influence on my metabolism? Do I need a precautionary snack before retiring or is doing so a threat to driving my overnight glucose to the high side? What have my overnight BG trends been recently?

As people with diabetes, we don’t necessarily want to take a deep conversational dive into diabetes management with our social peers. We just want it to remain in the background and behave itself.

No one can get it right every time

Good diabetes management doesn’t just happen. It requires forethought, analysis, continuous execution, patience, and persistence. If your plan is ill-conceived or incompletely executed, diabetes will make its dissatisfaction known. No one can get it right every time and we make dozens of consequential decisions every day.

The questions I’ve raised here are just the tip of the iceberg and there are actually many more that demand that we think about them. And this is just one day of the 12,837 days that I’ve lived with diabetes so far!

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#2

Man, I got tired and a bit stressed just reading this! Since I have been doing this for 60 yrs, on most days this is just second nature. It is a language which I speak with extreme proficiency. I just except it for what it is not really remembering a life before diabetes.

BUT on some days like today, it all bothers the heck out of me. The fact that my husband and I can’t just happily go out for a meal with out wondering if the restaurant will have any food I can eat and if they do will the food have an excessive amount of oil. If the food does have oil how many days will it take to clear from my body. How much insulin will cover the meal?

My sister is taking off for a trip to Italy. She doesn’t have to worry about not being able to eat what Italians eat. She can enjoy the food she is served without having to worry about the ingredients. She doesn’t have to pack all the medical supplies she will need. She won’t have the worries about traveling with insulin and all the devices that go with it.

She won’t have to worry about becoming hypoglycemic or even think about her glucose levels. I can’t imagine living a life which does not include the moment to moment thinking about diabetes.

Am I obsessive about my diabetes? Yep, I am but I am also obsessive about living a life that is free of diabetic complications and I will do anything to stay as healthy as I can be. I really want to live another 20 yrs. Sometimes though on a bad day, I do wonder if it is worth it. The stress alone can be overwhelming.

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#3

I am also a long timer and while this list is exhausting to read and think about, it is our reality. And yes, I do all these things and probably more, especially when you throw family members into it.
But I have been doing it for so long, I don’t really think about it item by item, like it was listed. I like most of us just do it. It’s our norm, it’s our daily habits, it’s our brushing teeth and taking a shower, which we also do in addition to all the diabetes stuff.
There are days I feel exhausted with these the constant never ending diabetes. Days where I feel like I just can’t anymore, but habits are habits. And while some of those days, I might not look at the CGM as often as I might or walk as far as I usually do or eat the right food at the the right time. But as always, those habits that were drilled into me and yes back in the 70’s, scared into me, they take over and it gets done.
But as stated, I just wish people would understand how time consuming diabetes is and that maybe that is way I am not as attentive as my family or friends think I should be in that moment. So many diabetes things running through my head.

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#4

Like both of you, I have incorporated much of this demanding routine into habit. I wrote this piece as a reminder of all the things that we need to address whether covered by habit or a more deliberate nature.

While most people reading this likely are also dealing with diabetes, I’m hoping the occasional gluco-normal can read this and appreciate what goes on behind the scenes in our daily lives.

Sometimes it’s hard to appreciate just how much effort and attention goes into an activity, especially one harnessed to habit. Recently I enjoyed the good fortune of my gastroparesis going into remission. I didn’t fully appreciate how much GP dragged down my quality of life until I was relieved of the symptoms.

As humans we tend to see things in a relative nature. If today is perceptibly no harder than yesterday, we downplay its significance. In absolute terms, however, good diabetes treatment management is a heavy burden. Congrats to us who are able to subsume out daily tasks into a strong habit but we needn’t discount the significant chore that these tasks represent.

I think only someone who has had to live with a diabetes burden for decades can fully appreciate the ability to change food plans on a moment’s notice without any concern about consequences. I think you and I would relish a restoration of the happy-go-lucky serendipity that life without diabetes comprises in a way that non-diabetics can’t appreciate.

It’s just basic human nature. It’s the embodiment of the sentiment that “youth is wasted on the young!”

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#5

I wish at times that people without diabetes realized the effort we have to put into daily living just to stay healthy.

I had a boss who when leaving the office told me he was going to go see a friend who was in the hospital having his leg amputated. The friend had type 2 and didn’t have tight control.

My boss told me his friend, unlike me, had the bad type of diabetes. I was too busy, thinking about how hard I was working to stay healthy, to reply.

#6

This made me feel quite stressed, but also determined to help my husband develop healthy habits and find ways to ground ourselves and make this lifestyle seem less invasive and more intuitive. I am trying to think about all the positive things that being aware of the food we eat can bring. I think that if you get right down to it there are countless things that can force individuals to pay attention to daily habits. We can all do this, it doesn’t have to feel like a life sentence if we view it as a pathway for health and wellness.

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#7

I had this conversation with my husband last night. He was like, I just don’t understand how you know what to do, when to do it, and how you keep it all together. He does understand the eating part very well which is half the battle.

It really does become second nature after accepting you have diabetes, committing to being well, and planning, planning, and more planning!

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#8

At least your hubby acknowledges what kind of effort it takes. Of course somewhere along the line, all of us realizes the alternative is premature death, and as often as not, suddenly.

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#9

I generally don’t find this to be an issue diabetes-wise. I sugar-surf through the meal and it’s not a big deal. But with allergies, yeah. It’s probably the most frustrating part of allergies. You do not realize how much a part of social life food is until you can’t take part in it. Or pets, or outdoor activities, or travel…at least not without tons of preparations, medications, and anxiety, and likely reactions. Being able to go grab a nice meal at a restaurant, or get some quick fast food when you’re tired, or participate in a potluck, or travel without packing a food suitcase, or sit outside on a balcony to read, or cuddle with a dog or cat, or visit a friend’s house, or shop for a product, or fly on a plane, or stay in a hotel, or attend a conference without worry about reactions are all such luxuries that I seriously miss.

I’d say diabetes annoys me most when my blood sugar is extremely high or low and not responding to treatment, or when it’s on a rollercoaster and interrupting my life multiple times a day. I don’t generally get annoyed at the effort much. It’s when the effort I put in does not at all match the results that I get frustrated.

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#10

I would give anything to get rid of this c***. I think even a transplant and anti rejection drugs may be better than this.

#11

This has been my life for 55 yeas, but add the gastroparsis beast the last 25 years. Really, really sucks!

#12

No wonder I’m tired all the time!

I just had an evening that reminded me that I normally pay close attention, and what can happen when I’m not on full autopilot. Gave myself a couple of units of insulin before dinner, and then started writing an email that will be in the public record on a contentious subject. An email should be quick, right? Wrong. By the time I finished writing, my bg was almost off the scale, I carefully and I thought conservatively corrected, and of course overcorrected, and then counter-corrected…

By the time I got to the office this morning, the numbers were OK, but I was exhausted from all the sleep I missed. Not paying enough attention is as exhausting as paying constant attention. After 50 years, I haven’t found the perfect compromise, because the change is constant.

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#13

This is really good and demonstrates so well what we do everyday, often without really thinking much about it. Of course those bad days when t here’s a “demand” from our bodies to correct and monitor, we are more than aware! In some cases, I do point out what I have to do. For me, it’s kind of a patient advocacy thing to keep people conscious of what this diagnosis requires. Even then, they don’t hear all of it…Terry, this piece should be aletter to the editor, or letter to our congressional folks. Brings everything into focus.

Speaking of congress, my US house rep has a daughter with T1, and so the topic is high on the priority list. Finally, would you mind if I copied your writing and send it to her and maybe others? thanks so much for taking the time to lay it all out there.

#14

Feel free to copy and use as you would like.

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#15

Fantastic. It most likely involve those working on healthcare re-design. (e.g., like improved medicare for all and so forth). Our new governor is working on a state based healthcare for all program — probably will send it to the Lt. Gov. because she is the expert on the issue.

Thank you, thank you!

#16

P.S. Do you want your name attached to it?

#17

Not necessary to attach my name.

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#18

Okey dokeys ;0)

#19

If I can add a different perspective … I have lived in Italy, and return to visit frequently, and I have never “worried” about what I’m going to eat, for two reasons:

First, Italians eat pretty darn sensibly – the much-lauded and heart-healthy Mediterranean diet, with moderate portions and no seconds.

Second, if you’re so inclined, it’s very easy to avoid pasta and other carbs (although I find pasta easy to bolus for, and of course Italians don’t serve it in the huge main-course sizes we’re used to in North America). Despite the abundance of pasta and pizza to be found in North American “Italian” restaurants, Italians themselves put an emphasis on vegetables and fruits and proteins, and one can eat easily and enjoyably in any restaurant or home while consuming a minimum of carbs.

I’ve also seen plenty of travelers packing waaaaay more toiletries, makeup and hair products than I need to pack in diabetes supplies.

#20

Emphasis added above is mine

and proteins, aka frutto del mare (fruit of the sea)! If I could only get my husband to eat fish that isn’t breaded!