Mental struggles

Hello,

I just joined today—I felt like it was time that I connected with people that actually understand what we deal with on a daily basis.

I have been diagnosed for about 18 years, since I was 4. Both my parents are in the medical field so they definitely stayed on top of my management.

But once I left for college, I (stupidly) took a “vacation” from controlling my sugars…I am still struggling to get that control back.

It’s not that I don’t know how to do it, but rather finding the motivation to. It’s like I’m just tired of it…I know how bad that is, I’ve already started paying the consequences for it.

But have any of you struggled with that? What did you do? I have so much to live for and I miss the way I used to be/look. I feel so discouraged.

Any advice or help is greatly appreciated

Welcome aboard:

Are you on a CGM? If not you should consider one because you can establish baby step goals to reach and slowly get yourself back to where you really want to be. Looking at the big overall picture ahead, with all its tasks. can be not only discouraging but overwhelming as well so anything that helps you make small incremental improvements all of a sudden feel like huge accomplishments and motivate you to take another step.

1 Like

I had a sort of opposite experience.
I was diagnosed at a time when fingerstick glucose testing was brand new and I did it twice a day. I was on NPH and regular insulin. If you haven’t heard of it, you are lucky because it was horrible at best and I basically had no control. I am lucky to survive those days.
I spent a lot of time wanting better tools to control it. And slowly they came.
I’m at the point now that I feel like Would be lost without it.

I know you are young and I wouldn’t have wanted a pump at your age, however it might be what you need.

If you get one of the hybrid closed loop ones with cgm, it will manage everything for you, however in a rough way.
I think you still need to be on top of it, but at least the basics are taken care of.
It will keep you in range when you are not paying attention to it. Well at least better than when you just don’t take care of it.

You will be happy you grabbed this bull by the horns now, so you might not get the complications later on.
It will become a habit and will be come part of your day to day, like brushing your teeth

2 Likes

Here are a couple good books that I found helpful, T1D 55+ years.

Diabetes Burnout by William Polonsky

Bright Spots and Landmines by Adam Brown

Info on authors.

https://www.cardiometabolichealth.org/william-h-polonsky.html

4 Likes

I am not currently on a CGM; I’ve used them before though and am thinking about getting one again. Which do you recommend?

Thank you, I have talked to my mom (she’s now a diabetes educator) about the closed loop systems and would like to get one eventually. I realize I just need to suck it up and get it done, so I can be healthy again

Positive incentive is always more effective than negative. It sucks to feel sludgy and tired all the time, and tight control just makes you feel better all around—clearer and more energetic. So yeah.

Pumps are fine, but I’m with many others in thinking a CGM is the most important tool to come along since analog insulins let us get off of that horrible R/N stuff and actually start making sense of how we were doing things. Finger sticks are like little freeze-frame snapshots from a movie you can’t see. CGM is the movie. People I know who didn’t think they needed one were shocked and amazed to see what was going on with their BGs in between finger sticks. Probably the single most important thing about having one is that it allows you to “pre-bolus” for your meals, meaning that you can dose for whatever you’re having 15-30 minutes before and wait until you see your numbers start to drop before starting to eat, so you’re insulin is already working when the carbs start to hit. A lot of other advantages, like warning you when you’re dropping in time to do something about it and just generally eliminating those trap-door surprises that make Type 1 so much fun to live with.

Which CGM? Dexcom is the industry standard, so other things being equal I’d go with it. One thing is that different CGMs integrate with different pump systems, so Dexcom goes with Tandem and Omnipod, while Medtronic has their own CGM called Guardian 3, which only works with their pumps. Dex also has 3rd-party integrations, so for instance I have a widget called Sugarmate that gives me my Dexcom reading in my laptop status bar, and also my Fitbit smartwatch. Guardian doesn’t do anything like that. Kind of a long topic but those are a few highpoints.

And welcome to the forum—tons of info on these topics here and lots of people eager to share their experience. Hope you stick around!

2 Likes

I would recommend an automated system for @Katiemw. I think she is exactly who such systems are built for and it could make a big difference. But, it matters A LOT which system you get - I’m gonna recommend Tandem pump WITH a sensor, but you should talk to other people on here to figure out which model is right for you.

I think @CJ114 might be right that its better to just start with the sensor and move up from there after a while…when your ready.

1 Like

@Katiemw The good thing? Tomorrow is a new day and you can start and change every day going forward. Any small improvement is an improvement, just start. Maybe it’s just testing when you first get up for a few mornings to figure out how your BG levels are doing, or counting carbs better for that meal. Every small thing you start will help.

But I highly recommend a CGM. Dexcom is the best. But depending on your insurance it can be a little more complicated. A Libre is about $35 a sensor for 14 days so it’s more affordable if you don’t have insurance or insurance that covers a CGM easily. You can have your doctor call in a prescription, most pharmacies have it in stock, it’s easy to apply and get started on one right away.

It will tell you 24/7 what your BG is (you still should do some checking) But it would be a major step in helping you get better control. Game changer for anyone that wears a CGM.

I do wish we could ignore it and it would go away, unfortunately it doesn’t work like that. Think of being around for the future and being able to do what you want. Make a push and just start! Many hugs, we all care and are always here to talk to and understand.

2 Likes

Dexcom CGM is the current gold standard and the one to have if at all possible. No CGM is perfect, so you will certainly hear some gripes about all of them and their manufacturers on this board but over the long run this is the one you will be happiest with. Other options are out there but their only advantage is that you can get a lesser CGM at a lower cost. So if you can’t afford Dexcom either outright or with insurance, then look at a lower cost option as even a lesser CGM is 10 fold better than no CGM at all.

I don’t agree with the pumpers who think you should go on a pump right away as I was diagnosed over 30 years ago and have yet to move to the pump. For certain people, they are better than MDI (Multiple Daily Injections) and for others like me, they are not. Your lifestyle, discipline, and commitment to Blood Glucose control should all be used in your decision to pump or to go with MDI.

The technologies to merge CGM and pump are getting better every day but may or may not be what is best for you quite yet. So start with Dexcom, if able, learn and then you can truly decide what is best for you both short term and long term,

In the meantime, we are always here and always ready to share our personal diabetic successes and failures. Let us know anytime we can help.

2 Likes

I know several people like you who are thrilled to have the safety and control a CGM gives them but are happy with the relative simplicity of MDI. Pumps have a lot more components that all have to work, and a more elaborate learning curve to master. In the end you get better control and they can be indispensable for solving specific problems that are hard to address with an inflexible basal insulin. Overnight lows/highs, Dawn Phenomenon, e.g. But not everyone needs to have one. There’s an emotional aspect to it as well. They take up a greater “mindshare,” especially at first, than some people are ready for. That’s why I resisted getting one for a long time, back in the pre-CGM era. Whereas CGMs are really quite straightforward—they have their glitches but basically are just there giving you better information about what’s going on so you can handle it better. That’s a win/win.

2 Likes

Hello, yes, I’ve been struggling also with “diabetic burnout” after 15 years of tight control. I’m a T2 and was able to control it with diet alone but covid came around and I just wanted to forget I was diabetic and eat like a “normal” person. Well… I can blame it on covid, but the truth is, I was getting that way even before so that threw me over the edge. I don’t have advice, but in my own experience, just simply working at it one day at a time, I’m getting my motivation back, especially after having gained weight, and really not liking what I did to myself. I had to have a little talk with myself, “Ginny, do you want to keep your eyes, your feet, your kidneys, your heart…?” and “Ginny do you want to turn into a person whose skin you are not comfortable in or do you want to get back to some self-control and like yourself again?” I’m working on it one day at a time. I’m tracking more what I put in my mouth again. I’m checking myself more and doing something about the high blood sugars. I’m on insulin now but hoping to get myself back off it again some day… hoping… but who knows. I don’t know how much damage I did to myself.

1 Like

Your circumstance and history is much different than mine. I was not diagnosed until the age of 30. I am certain that if I was diagnosed as a child, my teens and 20s would have been a diabetic disaster. Your situation is very common.

Congratulate yourself for addressing these issues now instead of denying reality for another ten years!

Motivation (and persistence!) is definitely the secret sauce for good diabetes management. The key event that enabled me to take charge was when I decided to take ownership of my diabetes. I decided the blame game was over for good and I was responsible for making good decisions, not the doctors or my spouse.

I soon realized that my opinion about what worked and what doesn’t was the most important perspective. I realized that doctors are simply fallible human beings who don’t know everything about my diabetes. I embraced my diabetes and found that my patient-perspective contained insight and knowledge that the medical community did not have.

Once I started making the key decisions about what I ate and the level of vigilance I would pursue, there was no stopping me. I felt love for my future self and a determination that burns to this day.

I know various medical providers and some of my peers have looked at my practices and deemed them obsessive. It doesn’t matter what they think. What matters most to me is the regard I have for my health and my future.

I must admit that some of what motivated me was to show my medical providers that people like me are capable of so much more than they gave us credit for. You could call it “inspirational dissatisfaction,” but it’s kept my motivational desire burning for nine years now. That and the fact that I manage my diabetes well. I take satisfaction and pride in that because I know it’s hard yet I overcome the difficulties involved, day after day after day.

Wear a CGM and learn as much as you can about your diabetes. Life unfairly dumped this chore on you; it’s how you respond, however, that makes all the difference. You are only 22 and have your whole life ahead of you! Be well.

4 Likes

This is where we have a strong disagreement. I am keeping my A1C at 5.5%, TIR 98% with 55-150 range during the day and 55-130 at night. My std deviation runs 20-21. How much better control, in the long run would I get with a pump? I believe that a pump is good for people that don’t have the discipline to do what needs to be done to properly manage their BG, however, a pump can tend to mask symptoms where MDI forces one to face the root causes or suffer the consequences. In your example, Dawn Phenomenom, in my opinion, is totally self-inflicted and a pump can keep BG in control during the Dawn Phenomenon period. If you are MDI, you either need to fix Dawn Phenomenon root cause, suffer nuisance of getting up at 3 or 4 am to inject or suffer high BG’s. In my case I addressed my Dawn Phenomenon through diet and adjustment of timing of meals and don’t get it anymore unless self-inflicted by eating a late meal which will bring it on. Dawn Phenomenon is a double whammy because not only does it cause an un-necessary rise in BG, but I know any morning I get Dawn Phenomenon, I will have gained a few tenths of a pound when I weigh myself as there is a direct relationship between DP and Weight.

For the past 15+ years, I have used a smart pen that doses in 0.1 units and keeps track of all my injections and that is certainly much easier than regular pens or vials.

1 Like

Ahhh Katie, I am so sorry that you have been stuck with this disease and are suffering burnout. You are at an age when having to control this disease is very difficult and makes you different from others who don’t have to put all of this work in. But I know that you realize the consequences you will have to pay if you continue to not respect this illness.

It sometimes helps me to realize how much worse some people suffer with other much worse illnesses. At least with diabetes we can choose to do anything we want to do with our lives. Yes, we have to work harder, but we still can succeed. Other people, with more difficult illnesses aren’t that lucky.

Wearing a Dexcom CGM again can really help you. My a1c isn’t any lower with it, but my time in range is now excellent. I find it really convenient.

Katie, I was diagnosed at 8, so just a little older than you were.

I wasn’t in control until I was 30, and I paid a price for that. Unfortunately diabetes can be very unforgiving. I have worked very hard since I was 30 controlling this illness and I am now 70. Believe me it is worth the effort to not get complications. Life is still good. Sometimes I still resent having diabetes, but hey, I am stuck with it. My life has been good and I am very proud of the way I have lived with this disease.

I have always just used MDI’s and my control is as good as it gets. I don’t mind insulin injections at all, I have never wanted to wear a pump. I also like the simplicity of injections. Some people love their pumps and that is wonderful for them. Just do what feels the best to you. My control at night is as good as it is during the day which is excellent.

Katie, I hope that you feel better and more motivated soon. You are stuck with having diabetes, so I hope that you will soon want to take care of yourself. Please let us know what we can do to help you.

3 Likes

I don’t know if this conference is of interest to you or if you can access it after the fact, but they discuss drugs for type 1 that allegedly produce the same positive benefits that equivalent to automated pump systems.

See the section titled, " Fight Night: An SGLT SmackDown" at this conference: https:

//tcoyd.org/tcoyd-feb-2021/

I think the discussion is accessible here: Fight Night: An SGLT SmackDown - YouTube

1 Like

Glad you’ve found a method that works so well. But of course everyone is different, and where they find the right balance between quality of life and ease of managing the condition is widely variable (YDMV). I eat low carb, rarely if it all have carbs in the evening, but DP was a battle for me on MDI and it’s one of the things using a pump has made simple. I don’t think it’s a matter of inadequate discipline, it’s a matter of where you want to expend your time and energy and what things ultimately lead to the best quality of life. I spent 20 yrs under the old regimens where you ran your life to fit your medication rather than the other way around and quality of life wasn’t even on the list of considerations. I used to call the R/N regimen ENOD: Eat Now Or DIE. For me, Basal-bolus MDI with analog insulins was the first step out from under the shadow of that mindset, and almost literally like being released from a two-decade prison sentence. So I tend to evaluate things from that perspective. I myself resisted pumping for years because it wasn’t clear to me which side of the balance it was going to come down on. On the whole it has been the right choice but I totally respect others who find that for them it tilts the other way. There are times when I’ve wanted to throw the thing hard against the nearest brick wall and go back to MDI with its far fewer failure points. The key is what the regimen is going to do for you in terms of all the priorities in your life, A1C among them but not the only one.

2 Likes

As always, sir, very thorough and thoughtful response which covered pretty much all the bases.

2 Likes