Hello All…been reading for a while but never posted and thought I would throw out a few words tonight.
I have been a T1D for about 20 years. I use the G6 CGM and I was using a pump for 10 years until about a month ago. I’m on a “pumpcation” trying to let my body take a break from feeling the constant tug of the pump. I was in range about 60% of the time with a A1C in the range of 6.8 to 7.5 over the last few years. Taking a bit of getting used to shots again…but have added Jardience and that seems to be helping.
I suppose my topic for tonight is how come our Dr’s and Endo’s never talk about the mental side of Diabetes and the toll it takes.
I am successful in just about every aspect of my life…I have an incredible wife (way way better than I deserve) three incredible kids and a stable and rewarding career.
However, the one thing that eludes me is controlling Diabetes like it should be controlled. The excuses are endless, there is always tomorrow, this quick snack won’t hurt anything, I’m to tired to change my site, and it goes on and on.
I have tried to talk to my endo about this and she says things like, “Diabetes is a mechanical disease. Just put in the work and you will be fine.”
My last visit I tried to give her an analogy…I said “when you are diabetic when you wake up your “battery” is at about 70% on a good day…and it runs down faster than a normal person. So by 5 or 6 at night you are winding down…by 8-9 you are flat out tired and exhausted.” I told her it was hard to try and get my wife and kids to understand, (who are all in great condition and very active). And I feel like I’m letting them down when I’m not up for constant activity.
Again, she pretty much says it is a maintenance issue.
I guess I’m just curious how others manage the “mental” side of being a diabetic. I have always put so much effort into my family, friends and job…to the point where managing diabetes is not the priority it should be. I know it has to be…but to do it right I feel like it would a huge undertaking with time I don’t have. The odd thing is…my logical mind tells me I don’t have a choice…my other not so logical side…says you are to tired to do it.
Okay, my rambling is over…would love to hear how you all make diabetes the priority it should be.
I think mental fatigue, depression, etc come easier with diabetes one reason that helps that happen is because sugar levels affect moods easy.
I also think that someone that is not a type 1 can really never truly understand being a type 1. My husband who is really supportive in so many ways will say something that I know he really doesn’t “get” it sometimes. An endo sees a lot of people, to her unless she’s a type 1 she sees it as you have to do this in response to this…but she doesn’t have to live it. She doesn’t have to live with if I decide to eat this, I have to take this, as a constant all day. She can grab the bag of pretzels and just eat. She can just grab the protein shake when she’s tired and her body will work and process it properly and give her a boost. It would be hard for her to understand the 24/7 of being a type 1. If you swam longer for the day, you will drop more that night, if you had higher fat for the day you will have to calculate insulin to take later and maybe even the next day. She can tell you do this but she doesn’t have to live it.
And don’t get me wrong, “normal” people get tired too, some a lot more than others. But for her purposes you take this to get this result. “The mechanics” like when you get taught to bowl, you hold the ball like this, you step like this. That will not make you an excellent bowler, you have to learn and practice and get a feel for it. And maybe someone that bowls to give you tips along the way.
I’m not sure you want diabetes to be a priority? Maybe you are expecting something that is not the best for you? My feeling is, yes I pay a lot of attention to it. But I want to do what I want to do, I want to eat what I want to eat, I don’t want diabetes to stop me. So I figure out how to make it work so I can do what I want. And sometimes it takes practice, sometimes it requires more attention and sometimes it is very annoying and irritating. I pride myself on how well I do, but when things aren’t right I sigh and go there goes my perfect TIR but it was worth it and maybe eventually I will figure it out.
For me the glass is half full, not half empty. Savor the half full and don’t be unhappy it’s half empty. That has worked for me in all aspects of my life.
Oh boy, I dunno about you, but my burnout on dealing with illness is at a peak during this period of covid.
I suspect that a lot of us are kinda ‘trained’ to perform all these actions.
I suspect that because when I started on a closed loop (automated) system, I found it VERY difficult to stop performing certain actions.
You ever considered tslim pump? Maybe some system automation would be better for you than it was for me. Your #s aren’t that bad. You do an OK job of it - could be better, could be worse (like everyone).
My personal strategy (just something that I find works for me) is that I like to get everything perfectly tuned. That might take 2 weeks of effort. But, then once all my settings are set so the system performs adequately (whatever that means at the time), I pretty much ignore it and can rely on the fact that as long as I take insulin when I eat and occasional correction, I can run comfortably without a bunch of effort for around 3 - 6 months before I need to re-configure things.
That tends to give me the highest quality of life for the least amount of effort. Its a lot of effort to tune the system, but then at least its done and I don’t need to worry about it for a while.
I agree that the Endos are really disconnected from the mental commitment is takes to be a high functioning diabetic. They are really the mechanics. They keep the oil changed and tires rotated. But the pt is the real brains behind everything else. You almost need a reset! So that you have a win or 2 so that you can reconnect to diabetic success! If only for a a while…
And the break is often needed. Btw that pump tug sucks! Wishing u a recharged battery.
I feel that taking care of my diabetes is priority ONE. If I don’t do it, I can’t take care of my next 9 priorities, which are very important to me. I don’t obsess about A1cs nor TIR. And my range is probably a bit broader than the most strict forum members’. But I do know my limitations and the effect on mood and stamina that highs and lows have on me. So I rein them in and do what I need to when I need to do them. Changing sites, inserting new sensors, correcting highs and fixing lows come first with me. It is a state of mind not ever enforced nor debated with my health professional, a CDE. I do what I have to so I can do what I want to.
Welcome to TuDiabetes, @Nctides! You write about the crucial ingredient of good glucose management for diabetes. In fact, I think the mental game is at the heart of it. This paragraph resonated with me.
I’ve been living with T1D for 37 years now and it wasn’t until year 28 that I finally made a meaningful breakthrough in the mind game. You’re right, doctors who don’t live with T1D don’t get this aspect. It is not just a mechanical disease! In fact if you believe this, I think you will be endlessly frustrated and unable to sustain well for the long run.
Diabetes is a dynamic disease and the rules seem to change every day. What worked yesterday does not always work today. If you expect consistency, it will drive you nuts. If your mindset allows for the inevitable variability, this wisdom can serve you well.
My breakthrough at year 28 involved a stark realization that I was failing myself miserably. I was 30 pounds overweight, taking double the insulin doses that I did in years prior, and facing a diabetes complication diagnosis that forced me to face up to the cold hard facts. I was poorly managing my diabetes. At that point I could have given up, fallen into depression, continue the trajectory of diabetes certainly headed soon for pain, disability and dying before my time.
Instead I chose to fight! At this point I took full ownership of my diabetes. Neither my doctor nor close friends and family were going to save me. I had to accept my complete responsibility and take concrete actions to turn my diabetes management around.
I chose to inform and educate myself by reading diabetes management books. These books, written by people who live with T1D, contained an assortment of tactics ready to try. I also read many articles online, limiting myself to credible sources and people who participate in forums like TuD.
My main tactic that was crucial to my success was to limit carbohydrates in my diet. I know this point is controversial and may not work for every person, but I was desperate to rescue myself. I learned about Berstein’s law of small numbers: fewer carbs = smaller insulin doses = smaller mistakes.
My turnaround was dramatic! While I used carb-limits to regain control of my glucose levels, I found that I started to lose weight, something I directly tried to do unsuccessfully many times before. I lost 25 pounds in a few months and I did so with little willpower beyond sticking with limiting carbs in my diet.
My total daily insulin dose fell to half of what it had been and the insulin I did give had more predictable effects. I had restored my insulin sensitivity.
Limiting carbs was only one aspect of my turnaround. I also walked everyday and tracked my miles with a FitBit. I wore an insulin pump and a continuous glucose monitor (CGM) and reviewed my diabetes data everyday. I learned the meaning of my diabetes statistics. I discovered that simply watching my data everyday engaged me subconsciously to care about the direction of the data and then behave in ways that helped instead of hurt my ability to succeed.
We’ve all heard the cliche, “Nothing succeeds like success.” My daily monitoring of my improving diabetes data fueled my motivation to continue the many things that helped that data. Each day provided motivation for the next. It was a virtuous cycle that fed itself.
It feels much better to play a game that you’re skilled at than one that you suck at. In short, winning is much more fun than losing! Sorry for that tired cliche, but it is true. No one gave us any choice about whether we wanted to play the diabetes game or not. But since we’re forced to play, we may as well play it well!
Diabetes is not some side aspect of our lives, one that requires our attention so that we can then pay attention to our real lives. Diabetes is our lives. Without good health, the ability to participate in our jobs, families and friends are all diminished. If you pay more attention to diabetes, make it a priority, it will surprise you when it becomes a smaller part of your life and gives you the energy to participate in life with family, job, and friends.
This mindset and the tactics I employed permitted me to sustain my initial weight-loss and even subtract some more weight, cut my insulin dose in half, boost my time in range to more than 90%, reduce my hypos, reduce glucose variability, and drop my A1c from the low 8% range to under 6% for the last several years. In short, I was able to restore metabolic sanity to my everyday life.
That meant feeling better physically and a return to mental clarity that surprised me. I didn’t realize how much I became accustomed to the brain fog that poor glucose management produces until that fog lifted!
Marie makes an excellent point in her comment. Not giving up on yourself is a key to resiliency. My metabolic life is far from perfect and when I fall down, I take stock, see what I can learn from this setback and recommit myself to do better now. You will never arrive at the perfect diabetes solution. But you can put in place a mindset that enables you to adjust and roll with the punches that diabetes delivers each day.
I went through a long period of burn out. It is far longer than you are describing. My burn out resulted in total denial. I refused to see even a doctor of any type. It was bad.
I lifted myself out by going to extensive therapy and medication. it took a long time and to get back on track it might take you a long time. But there is no escape from the reckoning. If you do not deal with one of two things will surely happen.
you may get terribly ill and be forced to do it, or
you will lose the ability to make a decision.
Likely some combination will occur.
I hope you pull it together, you deserve to pull it together, you are worth it
Wow! This is one of my biggest suggestion to diabetes treatment plans! If you are not in a good place mentally, no amount of number management will help.
Finding a doctor who gets the fact that we all have lives, is very hard. And I have had some that are only about the numbers not my life. But I will say there are doctors out there that get live needs to come first.
I feel, if your Doctor isn’t asking how you are doing? How is the stress in your life going? How is the family dynamics going? What kind of support do you have?
I have had doctors that remember what is going on in my life, like my job, my child going away to school, my vacations, my football team, my sport favorites etc. It is super great when you have a Doctor or CDE who understands that while I have diabetes, I am not a diabetic. I am a person with many aspects beside my diabetes.
Sorry I don’t have an answer expect to keep trying to find a doctor that gets it. And just a side note, my favorite doctors did not have diabetes but they seem to get how hard a chronic disease is.
Behavioral Diabetes Institute is a super great resource! The doctors there helped me through some very tough times!
My best mantra came form a doctor. He said rick “you will take care of your diabetes when you are sick and tired of being sick and tired” Yes that is true. I did finally get sick and tired of being sick and tired.