Sorry to read about your health troubles. I’ve had milder shades of those symptoms and appreciate what you’re up against. I’m sending positive thoughts and virtual hugs your way!
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Thank-you for your perspective. Going through this exercise does not depress me. Instead, it makes concrete the size of the task that I’ve taken on, even though I know I had no choice. I thought by writing about it that others may take some comfort in the cumulative enormity of what they’ve endured and accomplished over the years.
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The only reason I noticed is because I’m only five years into this and I’ve already poked my poor fingers more than 17,000 times.
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Of course. As mentioned, it’s a very subjective thing.
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One can look at the “perfectionist” label with different definitions in mind. If it means constantly seeing your daily efforts measured against a perfect standard, never meeting that standard, and berating yourself due to always coming up short, then I reject the perfectionist label.
But if perfectionist is instead defined as beacon or goal that drives you to continue reaching for something better combined with a healthy dose of self-admiration for reaching for the perfect with honest acceptance of the perfectly human condition of falling short, then I could accept that label for me.
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I see the truth in what you write here. At the same time I’ve observed in myself, during times of horrible control with substantial effort that I did, at times, relaxed my effort just to maintain some semblance of sanity. I went through a period of about five years where I was much more focused on career projects and gave up full effort with my diabetes. Maybe that’s not a necessary trade-off but I made it just the same.
In the last four years, since I’ve made large changes to my eating style and exercise, I’ve enjoyed a diabetes renaissance of sorts. As my blood sugar control returned me to a modicum of normality and restoration of good daily energy, I felt that trade-off disappear. I could do both and sacrifice neither.
When blood glucose is more often in a normal range with reduced variability, life provides plenty of energy to both pay attention to both non-D projects as well as the D-minutia. I agree with you. Placing this tension between life and diabetes as a binary choice, while perceived true in some circumstances, falls short of the fuller truth that you cite.
Thank-you for making me think more carefully about this!
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I don’t necessarily see it as which should take priority. For me, it’s better summed up with the statement “Manage your diabetes to live. Don’t live to manage your diabetes.” My management of my disease doesn’t come second, but I do my best to view it as a means to an end, rather than the end or goal itself.
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Of course, this a philosophic argument that has no right or wrong answer. I agree with your position. As I wrote to @Dragan1, the fuller truth is that this is not a mutually exclusive binary choice. Completely ignoring diabetes will lead to a slippery slope where quality of life fades quickly. That’s a bad trade-off where none is needed.
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It is a real scary thought about how much of our lives revolve around diabetes. I am not even going to think about how much time and energy goes into my diabetes care. For me 46 years ago next month I was told I could lead a perfectly normal life. And I can say, nothing about this is perfectly normal. My response back to the nurse who said that to me in one of the many classes my parents and I went to during my two week stay in the hospital was, "what normal person plays with their urine four times a day!"
In all those years I gave up hope on the cure in five years, but things are so much better now than they were back than. I continue to volunteer for trials of all kinds and am very hopeful something will happen in my life time.
In one big study right now and hoping when the bionic pancreas goes to trial I can get in. And I have put it out here, if I could get a machine that would do all that thinking I do every day and every moment, I would put all the brain power that I currently use to maintain my diabetes for something else. So if and when that day happens, I have said I will use all that free brain power to learn a second language or a musical instrument. Because wow I use a lot and I do mean a lot of brain power to do my diabetes. (My son gets the biggest kick out of me when we go out to eat. I have to get everything out, meter, reciever, pump, phone for carb apps. Than test, mental math to figure carbs, input everything into all equipment, manually calculate adjustments as my pump doesn’t do that. Major chore to eat out or to eat anywhere for that matter! But it can take 5-10 minutes). So I am feeling really good about that cure or temporary fix until the cure happens. So I think piano or Spanish. I want to put the Brian power to use for something fun!
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That balance has as-yet eluded me. I find that I spend a great deal of mental energy managing diabetes minutia, and still find this quite invasive in the rest of my life/activities/family, etc. Reaching that balanced approach is a worthy goal to seek.
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From reading your comments and posts on this site, I think your blood glucose control is excellent, better than mine. Excellent, that is, for someone with diabetes. Do you really think it excludes/degrades the other things that are important in your life? Do you see your life as a “diabetes pro” with little energy for other things?
When I see the amount of time that other people spend on amusements like TV and spectator sports, it makes me realize that my diabetes management is not a bottomless pit of needs.
It isn’t so much the amount of time that bugs me as the fragmented nature of it. It’s not so much that I spend an objectionable percentage of my life dealing with it as the fact that it continually interrupts my train of thought. Whatever I’m doing, I can never go more than a very few minutes without at least thinking about it, whether that thought is about what I have to do next or just a mental review of how well it’s going at the moment. It’s a relentless, inexorable attention sink, and that I do resent.
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Sally, everything is relative. Your career with diabetes eclipses mine by 14 years! That’s hard for me to grasp, but you’ve done it!
I say, life is short. You should take steps to start your study of piano and language now. Maybe just take some small steps like finding out about what’s offered at your community college in these two topics.
Whenever I read stories about staying cognitively active as we age, I see mention of music and language study as being two excellent ways to stay in good intellectual shape. Anyone that’s managed diabetes for 46 years can certainly start to learn a foreign language or music. Tomorrow is promised to no one!
You’re right. If we could somehow corral all our diabetes responsibilities into a fixed period, like from 10 a.m. to noon every day, that would improve our lot. Interruptions are not so easy to manage well.
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I think one thing to keep in mind is that, if I recall, the idea about life coming first and diabetes coming second was directed at parents of kids with diabetes, not adults with diabetes. I’ve said this many times, but the experience of managing a child’s diabetes (or growing up with diabetes) can’t be compared to the experience of having diabetes as an adult. As someone who grew up with diabetes, my diabetes did sometimes get in the way of normal kid things such as sleepovers, field trips, birthday parties, and summer camps. Parents of kids with diabetes have a harder job than we as adults do: they are trying to manage another person’s blood sugar. And, for a kid, the integration of diabetes into life without providing an undue burden on their childhood experience can be a very delicate balance.
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Well, certainly, there are big time-wasters that people indulge in - and it’s OK for that time to be eaten by diabetes management; however, I find that for me, diabetes and all that goes into managing it is always in the forefront. Does it stop me from doing things I want to do? Sometimes – a low can put a big damper on a planned workout. A high spike is a great way to ruin an otherwise pleasant evening. Even today, I forgot when I packed my lunch that we’d planned on taking my son out for dinner (he’s going back to school on Sunday) – so now, I’m busy trying to figure out how to go out without going overboard on a day that’s already had my “fill” of carbs…
It’s never-ending, and always in front, for me…
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T1D is such a big part of my daughter’s life (and therefore an even bigger part of my life) that I find it difficult to separate “diabetes” and “life” into two different categories. I’ll attempt to explain this. I feel like there are two separate parts of my life: work and home. I am the same person in both locations, but I wear a “different hat” at work than I do at home. However, regardless of what “hat” my daughter is wearing at any particular time, whether it be high school student, daughter, sister, doggie mom, color guard member, T1D is with her at all times. No, she doesn’t think about it every second of every day (I probably spend more time thinking about it and either doing something about it or instructing her to do something, e.g. correct a high, treat a low, set a temporary basal rate, make sure everything you need is in your D-purse, etc.), but speaking for myself, I am never not aware of it. Every thought I have about my daughter now includes D. Don’t get me wrong, I haven’t “accepted” T1D as a companion or a part of who my daughter is. We both still view it as a wild animal that must always be kept at bay. But it is just so constant, so ever-present, that I can no longer view our lives as separate from it.
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What strikes me about all of this, is that these things don’t seem to be improving with improvements in the technology that should be changing these dynamics. For example-- you have a CGM, but I don’t think it’s reduced the number of times you poke your finger. You have an insulin pump, but it doesn’t reduce the burden of management. Inhaled insulin that works for many better than injected is widely available, but people are largely disinterested. I think we all have a little more say than we are really taking advantage of in how much of a role in our lives this condition really needs to be allowed to possess-- I personally have realized that I need to start owning that, or this condition will destroy me mentally long before it does physically.
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You bet it has!! Whew! But…
…after reading posts from members diagnosed 20 and more years ago, I have realized that the new tech has made things more predictable even if PWDs still spend a lot of time (way too much time?) managing everything. I never in a bazillion years would have predicted that I’d join an online support group like this but I am sure grateful for the DOC!!
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You make a valid point, Sam. I could reduce the number of finger-sticks I do but I like the data it gives me. I use a bluetooth connected meter and have been following another app that has some interesting graphics. This is Vigilant by InSpark technologies. They have run through the big data of a cohort of an automated pancreas system study and identified some predictive modeling data that can warn when there’s an increase in the likelihood of a severe hypo in the next 24 hours.
Here’s a couple of the graphs they produce:
This one graphs variability on the y axis and average BG on the x axis. The green rectangle is the most desirable.
This app generates its own variability and average BG data and graphs it. I keep an eye on this because I like to look at the data.
The time I spend doing these task are such a rote part of my life that they do not burden me.
I do plan to ease up on the finger-pokes going forward.
I use a FiBit, too. It tells me I’ve walked over 500 miles since my move to Portland in the middle of April and over 3,000 miles since April 2014. I’m a data nerd. It fuels the fight.
I love my Afrezza insulin. My fresh supply seems to pack more punch and allows me to rein in any post-prandial surges. It’s amazing! I would not want to live without it.
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