Hi Team TuD: After 15+ years of diabetes, my motivation needs CPR. I have been highly motivated for all these years, and maintained really good control. But lately I have become sloppy in my eating habits and lax in my exercise. I know several people who have had T1 for as long as I have who now have complications, and I really want to do my best and try to avoid that (I am complication free). I have been on an insulin pump for 12+ years. I had hoped that a CGM would help, but unfortunately I chose the Medtronic/Minimed Guardian, and I found it to be really inaccurate and very difficult to calibrate (and my insurance won't cover another CGM until the Guardian warranty is up). So I thought I would reach out to all of you and see what has helped you revive your motivation or maintain your motivation. Thanks in advance!
Several things kicked my butt into gear:
1.) Diabetic retinopathy - I had bad control for a few years as a late teen and it wreaked havoc on my eyes. I've been diabetic over 18 years but feel those two years were what really did it for me, retinopathy wise. I had a vitrectomy and laser, and thankfully now my eyes are stable and the retinas appear clear.
2.) I had an unplanned pregnancy, and lost the baby. No 'for sure' cause, but believed it could be related to my blood sugars. I'm taking BC pills, but in the case of another unplanned pregnancy (or in the future, when I DO plan to have a baby), I'd like to be prepared to be able to carry my baby by having an appropriate A1c level/healthy body.
3.) My boyfriend is motivating! He genuinely cares how I do and expresses how proud he is of me for doing all I have to do to care for myself. Having that special person really show that they're with you in it 100% helps a lot!
I think you can be sort of sloppy in your eating habits, as long as you test a lot? I got away w/ that stuff for years. The whole thing to me was that whatever I did (and I did all sorts of sordid stuff...), I still felt like I had to test a lot, although perhaps my diabetic 'career' was a bit longer as when I was dx'ed, 4 tests/ day were the standard but then it sort of transitioned from 4 to 7 and then a dozen and then as many as 18 (long story, some of that was when I started to exercise...). And, at least so far, I've gotten away with it, likely because of the testing and attention to BG levels, while also paying attention to BAC levels, playing psychedelic rock music, studying martial arts, etc. I have found the MM gizmo to be pretty 'accurate', in that it generally perceives a stable level very accurately. If my BG is changing a lot, it doesn't always have it spot on,as it seems to lag about 20 minutes behind but I know that.
Whatever I have been up to, I always try to have a non-diabetic hobby that sort of serves as a goal and I keep diabetes in line because I don't want to miss the party or the workout or the opportunity to meet my wife or whatever? Right now, I am 'using' running which is both boring, in that it is running and that's all it is but it works. I want to run so I get my BG in line first, get stuff done and then go and then I feel good. I dunno if you can find something to do that will help you beat up diabetes but, at least for me, it is worth it. Even if it's sitting in the basement with my guitar and headphones it is a ton more fun if I feel good and my BG is in line.
I'm another one that developed retinopathy. Though I had some rough times after that. Sometimes a body needs a little bit of a break from the strict compliance. Just keep the idea that you don't want complications in the forefront of your mind and make it a planned vacation rather than a guilt-filled slacking off. What motivated me was very different than for you. I wasn't nearly as good a patient as you have been.
I'm really sorry the CGM didn't work out. I'm finding it's the best thing I could have ever done. I use the one that starts with a D. :) It's a little raw that you can't trade in and get a different one given your valid concerns.
I read someone say, once... if someone had a gun to our heads, we wouldn't have any trouble doing what we need to do... And the reality is that we really DO have a gun to our heads... I think about that, every time I lose perspective... I also think about how I don't want to leave my family alone... and the loved ones who would be so heartbroken without me... the way I was heartbroken when I lost my dad. I try to focus also on how food is just fuel, and nothing more than just fuel... And that if I really want something, I can either have a little bit, or make a low carb alternative, somehow... That the experience is not the food itself... It's being healthy from the food I'm eating, and handling well... and the people I get to share it with... I honestly have to do a LOT of constant introspection to help handle my own self defeating moments...
Diabetes is a trying condition. It is not about just avoiding bad decisions, it is about having to constantly make the right decisions, and not just every once in a while, but all the time, every day of your life. I think everyone can feel the same way as you do after years of constant focused effort. I've often felt I've become sloppy and lax with exercise, I am currently struggling to get twice a week weight training sessions and I should be in the gym three times a week. I often find that I will usually think that I am in the right state of mind to make proper decisions, but in the end I don't make the proper choices and decisions. It is hard to find the right food, exercise in the evening, and stay focused.
Perhaps you can involved someone close to you in establishing your basic accountability. Whether it is a spouse, a close friend or family member. It is not their job to worry about your particular numbers, your diet, your exercise or any of that. But they should ask you whether you are being true to your own professed values. I can lie to myself quite easily, but I can't lie to those around me that I care about.
I haven't been diagnosed long enough to burn out, so I'll speak to motivation in general. For me the fear of negative consequences is a part of the package of why I do things, but only a very small part, for several reasons I won't bore you with. I do much better with carrots than sticks!
I love to cook. When I became a vegetarian 8 years ago I realized I needed to learn a whole lot more about cooking vegetarian food to find it satisfying and creative. When I finally realized that my "eating healthy" was not healthy at all for a diabetic, I balked a bit...I Liked the way I ate! But then I looked upon it as a challenge to reduce my carbs and still eat well and creatively.
In general I don't frame things in terms of what I have to give up, or being deprived of goodies. I frame it in terms of what new things I can discover that will be delicious and make me happy. I guess I'm something of a hedonist, so it's all about what gives me pleasure..lol. Growing up I got the message that life was a struggle and you just had to plow through it. I left that one behind in the 60s! If something is too much work, too much of a struggle, too much subtracting rather than adding to my life, I don't stay with it. So that is a guiding principal for me.
I think burnout of whatever type calls for a vacation! I don't just mean going somewhere and lying on a beach, but a respite from what we are grappling with 24/7. Unfortunately a "vacation from diabetes" for a Type 1 is a VERY bad idea! But to me vacation can mean a lot of things. I love to travel like you do and it always rejuvenates me. But unless you are a trust fund baby you can't always travel the world. I like the idea of mini-vacations, like a day at the spa, a walk in the woods, or even just wasting hours watching every episode of a favorite show. When I was working 12 hour days I worked in a beautiful rural area so I would just take ten minutes with my feet up on the window sill gazing out at the woods. When I worked in the heart of the tenderloin I would just find a quiet room , close my eyes and breathe. I believe in treating myself, especially when my life is hard (and hey, our lives are hard by definition). So buying something new, pretty and totally unnecessary, or sequestering myself in the bathtub with bubbles and a good book. Whatever takes my mind off things and makes me tranquil. Spiritual practice if you have one. I also agree with acidrock that doing something new and fun can counteract the drugery that 24/7 diabetes management can be.
Finally for me, I can be very obsessive about something (and some degree of obsession is required to treat diabetes), and I can be perfectionistic. That is a short road to burn out for sure! So I work on a daily basis to give myself a break and not let the numbers rule me. I hope some of my rambling is useful for you.
Melitta , I don't read anywhere , that your BG numbers are/have suffering/suffered.
Just taking a rest and accept , that's what you are doing .
I have also done less exercise ...still running around so to speak , but not with a goal in mind of completing an event as I have done in the past with Team Diabetes Canada. I needed " a rest " and seemed not to have suffered . Actually my BG's have been more stable , my last A1C lower than the previous one . As you probably know , I am a Medtronic , CGMS user . I seem to get better at " how to manage " , realizing that finger pokes are necessary , realizing to calibrate , when time is due , never had a problem with needle phobia, having a low pain threshold and needle does not cause me pain .I wonder, if you would reconsider trying again ...your transmitter maybe " out of order " by now ??
I had a severe depression the first half of this year, and my diabetes control went by the wayside. And I ended up in a coma that, if my friends hadn't come looking for me, would have killed me.
That has REALLY renewed my motivation -- I NEVER want to go through THAT again!
I have a MM CGM and you're right, the numbers are not that accurate. So I look at trends -- if it says I'm low, then I'm most likely at a decent number (I can feel my lows just fine). If it says I'm high, or going up rapidly, I test. The lows it reports are mostly lower than I actually am, and the highs are higher, but it does give me a good idea of when I need to test, and where I'm headed.
After my coma, it took a while to achieve good BGs, so I really concentrated on testing and correcting, and not as much on eating or exercise. Perhaps you could pick one aspect of your diabetes management and concentrate on it, and let yourself be a little lax about other aspects for a while.
I really hope you find a way through this!
I think we've all burned out on diabetes from time to time, so here's my advice.
- Volunteer with a group that help kids with diabetes. When you see these youngsters have to fight the same fight we do, it can be a very powerful and motivating force for people like us.
- Try an exercise regimen thats completely different than what you're used to...and have lots of fun doing it!
- Don't ever feel guilty about slipping up. I'm heading toward my 20th year with T1, and I still refuse to hate myself when my numbers or my eating habits aren't perfect. Remember, we're people first, diabetics second...and we all make mistakes.
- Live one day at a time. This thing isn't going anywhere, and you always have the power to change things at any given moment. Never ever look back, just keep moving forward...you know exactly what you're doing.
I wish you nothing but success on your journey Melitta! There is nothing stopping you from regaining the life you deserve.
Wow! All of you are so awesome, thank you. I read through all your posts, took a little break, then came back and read each post word-for-word again. Some great wisdom here. Just in the past few days, I have been trying out the mantra of "self-care," and I agree with trying one thing at a time, so right now I am focusing on just getting back into my exercise routine. But I agree with Dino, a change-up of the routine would be good. And I do have a passion that I am just gonzo about, which is yoga. Yoga is easy for a physical person like me, what has been harder is my meditation practice. I have monkey mind! Dino, any meditation tips would be appreciated. Then, I am going "back to the drawing board" and reading "Think Like A Pancreas" and using my highlighter on it. But as you all say, it must be done with self-compassion. Finally, in the new year I am thinking of just paying out of pocket to get the Dexcom. Many many thanks again to each and every one of you for your thoughtful comments, wisdom, and support.
I am so exactly where you are right now. Burnout is exactly what led me to this site. For me it seemed to hit around year 8-9 (I am now more than 10) and I have struggled since then. I look back at my commitment and single minded motivation of the first 5 years and I wish I could get back there, but I can't seem to. I was so committed to and satisfied by a fairly limited range of foods, exercise was regular, A1C's in the high 4's were a breeze to achieve (with they help of my honeymoon insulin, along with great habits). I had a lot of routines that worked for me. One would think that having kids would make me more motivated, but in actuality my diabetes care is no longer center stage as it used to be.
I think that having diabetes has a trajectory in terms of coping...a something mirroring a developmental component. Most long-term diabetics with whom I have had contact have had times of extreme struggle. When I read here about someone who sounds so confident and always motivated, I often see on their profiles diagnosis dates within the past few years. I hope for them that the motivation piece stays as high as it is, but I know that all of us with D do struggle at some time. I think that after the initial shock of adjusting, the earlier part of the disease was much easier for me. Part of it is that it is easy to stick to things for awhile, but eventually, it gets harder, this is just human nature. Part of it, at least for me, has been the changing demands in my life which has changed my daily life and routines considerably, and not in a way that has helped my management.
So I, like you, read these answers with interest. For me, I think my first step needs to be to limit snacking, which seems to have gotten out of control. I will start one step at a time.
I too have the MM CGM (minlink) and came back to it about a year ago, after a long hiatus. It seemed too inaccurate and was always beeping at me, stressing me out. It has gone much better for me this second time around. I appreciate it much more, and have gotten to the point that I really miss it when I am "between"sensors.
I find it seems more accurate as I only calibrate after periods of "fasting".....when i first wake up...about 4 hours later before lunch, and about 4-5 hours after dinner (I eat pretty early). If I am bolusing just going based on my CGM reading, I do not enter a BS number, but leave it as a -- and then just enter carbs. Inaccurate calibrations led to inaccurate readings. I ditched the one touch it came with (along with the auto entering of BS readings) and returned to my freestyle.
Overall, my accuracy has improved a lot and is now typically pretty good. If it is off more than a few times, I change the sensor.
Also, as soon as I start getting calibration error readings I ditch the sensor....before I would get frustrated and try to make them work if the sensor was less than 5-6 days old. I now find that once they start they usually continue. Also, I have fine-tuned the alarms so they are not annoying me as much.
Good luck, and I HEAR YOU on this struggle for sure.
I am willing to bet that you are being hard on yourself (remember what you keep telling me) How is your Yoga practice going? Maybe try a Ying practice for a bit. And how about some meditation to help with the stress of your thoughts? You know the Yoga side of me is going to say to ask yourself the root cause for why you might have become lax or the feeling that you have.
Most important be kind and compassionate to yourself! We all become "lax" in one way or another at times. (At least I know that I am guilty of this)
Fear of complications....although can be a motivator I am not sure it is the best way to follow because fear creates other problems.
I know for myself with the CGM my accuracy varies depending on where it is inserted and how long I have kept it in. My CDE has commented that she thinks MiniMed may have done something to the sensors lately because a lot of people are having troubles with accuracy after 3 days. Have you tried calibrating before meals if your blood sugars are stable? That has helped me with calibration issues sometimes.
I am not sure if any of this is helpful, but I know everything you have always said to me when I sent you messages about the same sort of questions...you always tell me not to be so hard on myself and you have always been right. So I am also going to send that same advice back to you! You already have the motivation in you! It is just hiding a bit right now. And also remember how much you enjoy life!
Self care mantra is a great choice Melitta! Hmmm...monkey mind me too. When those monkey mind thoughts come through just accept them and let them pass. Yoni mudra might help with quieting the senses and also some Pranayama exercises too!
I have low tolerance for sameness & become bored easily. To counteract the constant routine we're forced to shoulder, I change as many other things as I can. May sound silly, but doing anything new or different helps motivate me to deal with the diabetes burden. It doesn't have to be something grand to recharge my battery.
Oooh, I have to follow the advice I dish out?! You are right on target, Amy!
Well, you do dish out good advice! :-)