T1D for 40 years now...I'm so tired emotionally

I was diagnosed at at 11. Was told that day I would not make it to see 25. But, here I am at 51 and still kicking. However, everyday is an emotional struggle. I’m so tired of dealing with t1d, even though I stay in pretty good control. everyday i just feel like it’s too much. Anyone out there experience the same?

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First off, congratulations on forty years! I am pretty young, so I am not in the same boat as you, but I want to say I am happy you are still here and doing well. Your story heartens me as a young person, even though you may be struggling at the moment.

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@RevChaos hi Mike, 53 here diagnosed at 13… they told me I’d make it to 30… overall it’s the same kind of math.

If I frame my day as : count carbs, test sugar, adjust pump, test sugar, correct or eat… count carbs, adjust pump, test sugar, correct or eat, count carbs, test sugar, change set… count carbs…

then my head will explode. so I don’t do that.

we’ve had this long enough so that the sugar control thing is like a reflex, another sense, a background operation program. I realize it’s not easy but by now… I just want to live, and find joy and experience things and places and people and do some good with my life.

a brilliant lady told me to get out of my head, because I don’t want to hang out there too long anyway. IF I do something…anything… I’ll feel better. and she was absolutely right.

so what good thing did you do for yourself today? or lately? It may be time to pay attention to that. And what good thing did you do for others?

If everything in life feels the way you describe it, you may want to get some therapy. I had to in order to get going in the right direction. it’s never too late and you can do many things to feel better. anyway Welcome to TypeOneNation and I hope to hear from you.

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Thank you for your response. You hang in there too my friend. Physically I am doing well. It’s just the mental toll that is getting to me

I too have been doing this since I was 11, now turning 54. There have been points in my life where I’ve felt overwhelmed and depressed because of all of the things I’ve had to do to survive. For the most part I’ve found it easier when I can develop a fairly steady routine with my sugar control and put it on more of autopilot. Do what you have to do and don’t dwell on the mechanics of it. There are so many other things to keep occupied with .

Congratulations Mike @RevChaos on doing well physically for 40 years while living with diabetes. I wish I could say the same - “still doing well physically”. Although 22 years ago when I reached my 40th living with diabetes I was still doing real well. And it was about that time that my family told me for the first time that when I was diagnosed that they were told I’d never live to be an adult - they never told me and I surmise that “my ignorance” saved me from that worry.

I just look at living each and every day to its fullest, maintain a positive mental attitude and being active. Yes, I manage my diabetes 24 hours every day and yet I have been
able to accomplish much in life and never let diabetes hold me back.

Mike, keep up doing what you have been doing to live well physically and just tell yourself that you are stronger than this thing we call diabetes.

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Hi. I have been feeling same recently. T1d at 19- now at 61 I too am tired of the 24x7 constant work at staying healthy and in control. I like what Mike said about ‘get out of your own head’. It has become a 6th sense for me but I don’t trust myself enough to not constantly keep checking. The alternative to not checking is definitely a good deterrent :wink:. Hang in there and talking it out will help :ok_hand:

Thank you all who have responded. I appreciate your words of encouragement and support. I just found this site and before now I didn’t really feel like I had anyone to talk with who “gets it”. If anyone is in the Austin area and would like to get together and talk that would be cool. Meet for a cup of coffee? Blessings, Mike

Joe,
Thank you for your response and support. I like your idea about getting out of my head. I believe I do for others quite often but ignore myself. I suppose it’s the definition of “selfish” but I think I do need to do something for “me” so that I can continue to be all I can for my family and those I love.
Blessings and Peace,
Mike

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@RevChaos hi Mike. I fly in airplanes… a lot. Please consider this: the safety instructions clearly say to put YOUR air mask on first. Selfish? no. it tells you to do that so you will be alive longer, to be able help others. So I think this is also true with diabetes. The point being that I often put myself last many times, Doing something good for me gives me more energy, puts me in a more thoughtful mood, and allows me to try to help more and more often… it’s the opposite of selfish really, because you deserve to be happy and you will be more available to your family. I am glad you are here. Cheers!

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Yes…T1D is like a full time job, mentally and physically exhausting. I’ve had it since age 10, almost 42 years. Tired off testing my bs 6 or more times a day, constant worry over highs and lows, stress level, exercise and whatever else life can throw at you. Had been doing 5-7 Injections a day and finally decided to get back on the pump. I’ve been on the 670G for almost 2 weeks and it has been kind of a nightmare. Didn’t like the Mio sets which kinked twice in one day and I became Ketoacidosis. Went back to quick sets, which I had used previously. Then last week had an issue w my sensor transmitter after wearing it for only 1 day. 6 days later ( today), put in new sensor and it didn’t work. I’ve called Medtronic so many times they probably know my number by heart. Tomorrow I get trained on auto mode and hopefully there will be no issues. If anyone has any suggestions that would be very helpful

Been dealing with mine since I was 3 and my earliest memory was in the hospital getting diagnosed. Maybe because I was so young I always feel towards it like taking a shower or brushing my teeth. It’s something I HAVE to do daily, it’s annoying because it’s taking time away from other things but I would never skip it. I can never complain even to other diabetics because they always try to tell me why it’s worse for them. I wish others could understand me talking about burnout without completing. I just had to accept that the effort is worth it, that my decades of experience count when making decisions, and that I can take an emotional step back and still stay in adequate control.

Sure easy to understand your situation. This summer it will be 68 years with T1D for me, so I started with urine sugar tests once a day, single insulin shot each day, blood sugar test at a lab every 3 months, followed by an adjustment of my insulin dose. Now on Medtronic pumps for decades with no new complications since that dramatic treatment improvement. Told I probably wouldn’t make it to 40, finished grad school, post-grad training, then retired at 70. I volunteer for non-profits, as a receptionist for food bank/thrift store and doing spreadsheet and database work to support fund raising for post-high school education for homeless kids. I do yard work at home, and serve my church. Have I ever quit? No. Have I had a bad day? No. Have I ever had a bad few hours? Oh yeah! This disease can consume any part of us but the treatment that is available to us now has the potential to give us a full life. I am so very thankful for my life and for the opportunity to serve others. I trust that you can find satisfaction in what you do while living with our disease.

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New here and Type 1 for 45 years…since age 5. I have struggled all my life with what I found out 2 yrs ago was depression disorder. I have not had knowledgable Drs and only two Endos that actually talked to me and did anything…thank heavens one is my current Endo. I have had a horrible time on my depression medication , as I’m in the 5% that it cause to have insatiable cravings and yes, I have succumbed at times. It also makes me spacey…so the depression is gone , but I blank during conversations, or forget I didnt test. Coming off med now…which isnt helping anything yikes!
After a total Hysterectomy two years ago, everything seems to have gone crazy. My eyesight changes, severe arthritis in knees and fingers and sudden BG changes when angry, or anxious, I have had to do prob 85% of my Diabetes learning through the years on my own through research and stayed with what I was comfortable with. I feel overwhelmed and tired and frankly not up to date on all the new verbage and care.
I know my Depression Disorder affects my T1D and some days I forget to test or just dont care about my food strictly enough.
Would love to here from any T1 who hav ed Clinicas l Depression and what does it do to your Diabetes and what have you found that you can take without crazy side affects

My Endo said her patients on the Medtronic pump you have, all complain of probs, esp with the CGM that goes with it. I have always had Medtronic, but in researching and talking to others who switched, I am going to Tandem TSlim 2 with a DEX com CGM…might consider looking into that. I hope you get it all worked out soon.

Hi there! I am 47 yrs old and have had T1D since the age of 16. Things have really started to get bad for me. Like you I have been diagnosed with Severe depression. It does effect everything, mainly because the depression causes me to not want to do anything, or enjoy anything, which makes everything twice as difficult. Not a good combination. Like you my doctors (even my endo) Have no Idea and really don’t seem to care to much. I am glad you now have an Endo that gets it. Best of luck to you, to get the correct treatment for both. The depression and the Diabetes! I do understand the difficulties. :frowning:

Hi Mike, I’ve been a type 1 for 66 yrs. and I understand the “Getting out of your head” I have found out that the more I stay busy the less time I spend wallowing. Depression sometimes is caused by a low BS, check your BS when you feel down and see if it is always in he same range. when you feel bad. As everyone knows I cannot stay in the suggested BS range, my Doc and I have decided that the 140 range is a good place for me to be instead of 100-110, I feel much better. Do you realize that your T1d has help to shape the person you ae today, you are loveable, fun to be with, interesting, compassionate, all around great person, you know how I know because you are willing to open your heart to others and ask for help, that is the sign of a person who cares. Your good control may be a little too stringent, I am not going to tell you to stop all I am going to say is that you may be able to be a little more flexible thus removing bit of pressure, as I said my life is flexible so is my diabetes, my a1c is 7.5 and per my docs the scale is changing, no meds if a1c is 7 and it looks like the scale may be moving up to 8. Look at my posting on “how I eat what I want” and you’ll see what I mean. I died in 2000 during surgery, I was gone for 12 1/2 min. the Man upstairs sent me back with a to do list, so all I can say cut yourself a little slack and see if you can be more flexible to remove some of the pressure. We’re all here to help, anytime you need it, Grace, Joe, Mike W., Dennis, Terrih, everyone. Try and relax, take one day at a time, if that is too much, take it 1 hour at a time, don’t overwhelm your self . When you are down , let us know., OK! bye Jan

Thank you. I might do that eventually, but willing to give this a try. I do like Dexcom cgms. They don’t seem to have quite the issues as the guardian. Is the tslim wireless?

I’ve only had ten years with this disease so far but I still resonate with what you’ve written. Please know that you’re not alone, and it’s amazing what you have accomplished. Sometimes, the 24/7 monitoring just feels like too much, and the fear about what’s to come can be paralyzing. (I had that experience just the other day; I was on a medication that was making me itchy, but when the side effect spread to my feet, I immediately worried that it was type 1-related and that I had an amputation in my future!)

When I’m feeling depressed about type 1, the best thing for me to do is go spend time with friends. When I’m around others and listening to them, my own problems tend to fade to the background. Sometimes, though, I just need to let myself be sad for a while, and if you’re a praying person, I think it’s healthy to say, “God, I need some help here.” No one can cope with this alone. I would let loved ones know that you are struggling. Appearances can be deceiving, and others might not know what you’re dealing with on the inside.

Thank you for your post. You made me feel less alone!

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Mike, I was diagnosed about 6 weeks before my 11th birthday. I’m now 56. I didn’t learn I wasn’t expected to live past 25 until a few years ago. Now, my husband and I celebrate that I more than doubled my life expectancy (you should see the diamond I got as a reward for turning 50!) Regarding being depressed, there are many studies that show that being t1d more than doubles our risk of developing clinical depression. If you’re feeling depressed, get yourself to a doctor - pronto!! We have a tendency to be shamed about mental illness by society, but I look at it this way: my body doesn’t make insulin, so I take a synthetic form of it. My body also doesn’t make enough serotonin, so I take a synthetic form of that, too. And if the first med you try doesn’t work, try a different one. My doctor just performed a genetic test, and we discovered I don’t react properly to the class of drugs I was taking (look up GeneSight for more info.) Living with a permanent disability, be it t1d, depression, COPD, whatever, is hard work and I think we all need to give ourselves a reward for making it through each day. So, find something that makes you happy and celebrate being alive and the contribution you make to the universe!

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