Accepting t1 28 years later

Hello all,
New to this Forum but having a LOT of trouble. I’ve had type 1 for nearly 28 years (diagnosed age 1) and suddenly feeling that I don’t have the strength to continue on… how does one find motivation again? I’ve always been in fairly good control, but am increasingly struggling with anxiety and depression. I feel that I need to “re-accept” t1 but have no idea how. Any suggestions would be wonderful.
Thanks so much,
Jane

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Hi @Jane_greene Jane. Welcome to Type One Nation and the club no one wants to be in! Hey I’m sorry to hear you are having a tough time. When I am having a tough time these days, it’s usually because of a similar loss, like the death of a loved one or a dear friend moving far away. At least for me, when I have to grieve another loss, it always brings up all the losses that came before it. Is something going on in your life? Did some new stressors recently enter your life?

Acceptance isn’t a destination for me. There are plenty of times I take my will back and get mad that the universe decided to punish me with this awful disease, only to remember that my anger is futile and only makes things worse. So even after 43 years of T1 I still go through it, but it doesn’t last long. It did take me 20 something years to grieve and accept diabetes, and for me I started to feel better when I forgave myself of this embarrassing failure of getting sick. Then I kind of got the idea that I deserve to be happy, and then with many years work in therapy, repairing my self esteem really helped me put it all in perspective. Hope this helps, we’re always here for you. :shamrock:

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Hi Jane,
I have lived with T1D a long time. I never felt depressed about it, so I’m probably not the best person to respond here. For me, diabetes was always part of my life, or almost always. I was 2 1/2 years old when diagnosed, so I had to adjust at a very young age. When I was in my teens, I sometimes felt awkward, but I would joke about it and tell people I had to “do my drugs,” when I had to take my insulin. I’ve also worked places, one in particular, where my coworkers/managers did not understand what diabetes entailed. Much as I tried to explain it to them, they just didn’t get it. That was very frustrating, but I wouldn’t say I was depressed. Perhaps it’s just my outlook on life. I’ve always been an upbeat person. My mother taught me when I was young that every cloud has a silver lining. I’ve lived my like knowing this was true. Without insulin, I wouldn’t be here. So, while I’m not happy that I have diabetes, I am very happy that insulin was discovered so that I can live a long, healthy life.

I hope the last thought helps! If you need, there are therapists trained to help with “diabetic depression.” Contact your local ADA/JDRF/other diabetes group to find out who in your area is trained in this. I’ve heard they are a great help. You can also talk to the doctor who helps take care of your diabetes. They may be able to help, or to suggest someone you can talk to.

Hoping you feel better soon!

Pam K.
T1D 58 years and counting!

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@Jane_greene Hello Jane, welcome to the JDRF TypeOneNation Community Forum!

I think that you may be close just by hearing you say “find MOTIVATION again”; at least for me the many times I’ve lost my way is having something fall in my path that gets me return to managing my diabetes. And, at least for me during my six and a half decades living with this difficult condition, is that “the motivation” or inspiration has been something outside of me that has inspired me to live and care.

Your life most probably isn’t similar to my life so my kick-starts [or kicks in the butt] may not be open for you, so unless you want I won’t add long stories here. What I do suggest is that you step back, look at your life and know what you want, a goal - or look at something that your diabetes may be holding you back from achieving - able to work for 50 years, marriage for 56 years, children, grandchildren and now a very pleasant and active retirement with sunshine. I’m fortunate that most of those events came along when my diabetes management - NON-management - was at its lowest and just happened to give me the necessary “kick”.

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Hey there Jane! Like you I’m 29 and have been going through the exact same thing for about the last year. I’m slowly getting back to normal but for me a new diagnosis really drove the diabetes grief front and center. When I was 11, I was diagnosed. I remember being sad and even though it was with best intentions, my dad took me for a small walk when I got the okay in the hospital when I was recovering from dka and he took me to the cancer wing. He said your life is going to be harder but at least you know you get to live. And in a huge way I applaud my dad because it really did make me just get up and tackle diabetes right away. But on the other hand, any time I’ve had feelings of anxiety or depression around diabetes I think of that and feel guilty because diabetes sucks but it could be worse. Anyway, I was diagnosed with AFIB(a heart arrhythmia) that is kind of serious because afib can cause a stroke if you don’t know you’re in it, but I can feel mine and know about it so it’s not super serious. This new diagnosis though flipped my life upside down. I became so bitter and so angry because I’ve always taken care of my diabetes and getting slapped with another medical thing that’s out of my control just felt so unfair. Over the past year, I’ve been so rigid with control because there has been this intense fear that I already was given two things out of my control so I have this underlying fear that I will get a complication and I don’t know if I will be able to forgive myself if I’m “at fault for it”.

Anyway to the happy part (sorry for the rambling of backstory). When i really noticed these were my feelings which are not my general feelings, I brought it up to my endo. I had a full on crying session with her just about how I’m 29 and I don’t want to live my life with diabetes being a burden. So we came up with a list of a few things.
-to look at numbers as data and nothing else. I hit 300 today. Okay. What did I do to troubleshoot? Did I do everything I felt comfortable doing and know will help? If yes, then I need to remember I’m doing my best and not get overwhelmed by the one number.
-find an outlet- what’s something I love that has nothing to do with diabetes? For me I picked reading, writing and Pilates. When I start feeling worried, I pick one of those to do and dedicate 15-30 minute to it. Journaling has been an excellent resource for me!
-talking to someone. I am working on finding a chronic illness therapist. It’s harder than I thought it would be but it’s important to me that I find someone who can actually understand. I’ve also found just chatting with others with diabetes, following diabetes accounts on IG and little things like that that make me feel less alone have helped changed my mindset again. When I have a tough diabetes day that makes me feel like I can’t handle diabetes anymore, I log on here (today was actually a good day just wanted to see what’s new) or I go on Reddit and follow the T1 group there. Even people asking questions that to me seem like a no brainer questions helps me, because I realize I really know a ton about this disease
-lastly when I’m feeling really annoyed by it, I think about all the things I thought diabetes was going to take from me and how it hasn’t stopped me yet and remind myself I’ve had plenty of bad days with it but I’ve probably had even more amazing days with it.

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Hey Jane!
No you are not the only one :slight_smile: I have had T1 Diabetes for about 20 years and I was just stating the other day how I feel like I dont have the energy anymore. I get tired alot more easily and there are alot of days where it is just hard to keep going. I guess I just tell my self that I do not have a choice and to continue going… and I make a little joke like OK IM NOT A DIABETIC TODAY IM DONE LOL!!! IDK I always laugh whenever I get uncomfortable or try to bring light to a situation. Lately this past year has been especially hard because I have lost 2 doctors and my sugar levels have not been that stable so its literally been a roller coaster ride. I am sorry you are going through this! If you need to reach out and need support let me know I will send you my email and we can chat <3 I hope you have a great day and we are here for you! Stay strong my friend!

God Bless!

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I was diagnosed in 1945, when I was 6. I have been t1 for 77 years and I do not have any serious complications. Getting to know other T1 people was very helpful. The best are people living near you so you can see them in person. There is a Diabetes Center in my small city, maybe you can find one near you. I have joined several online T1 support groups. They are very helpful. I have also attended T1 conferences. The best is the annual conference in Orlando every July, attended by more than 1000 people each year.

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Hi Jane, I could really relate to your post and sentiments about frustration and lack of motivation as it relates to living with TI. I’ve been TI for over 20 years and at times I’m surprised I’ve made it and have pretty good health. Still, sometimes, I feel like I don’t do a very good job at it.

I garner inspiration in multiple ways. I pray and do gratitude lists. I have had acupuncture to help with the whole body and stress. I listen to music a lot, as it feeds my soul. I try to talk with friends throughout the week and share my feelings. I try to volunteer to help someone with something every week, even if’s small. I attend conferences by Taking Control Of Your Diabetes. They have a website and virtual seminars. It’s so informative and funny! People there get me and it’s like a family. The leaders are TI.

And perhaps my biggest inspiration is my great aunt. She lived with TI for most of her entire life and passed away in her 80s with no long term issues from diabetes! And, this was during the times when they didn’t have pumps, CGMs or even BG meters to use at home. She took her shots and just went by how she felt! I marvel at her courage and patience. I never heard her complain, though I know she must have struggled. What a hero, she is to me.

You’ve gotten some great responses on your thread. I find them extraordinarily inspiring. I wish you all the best.

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Jane

Good morning and welcome to T1N. I’m celebrating 49-yrs with T1 in December. No diabetic complications. We each have our own path in dealing with T1 very similar to anything significant in life. I have good times and bad where frustration due to things outside of my control impacts glucose. A community like this is great. We are in this together. Feel free to reach out to me directly if I can help, listen, support.