How am I supposed to deal with this forever?

I was diagnosed with Type 1 Diabetes almost 2 years ago when I was 18 years old. I’m almost angry that I got it so late. It flipped my whole world upside down. I had 18 healthy years and then all of the sudden I was forced to change all these things about my life. For 2 years I’ve been in denial. It got so bad sometimes I forgot that I was ever diagnosed. When I think about the fact that this is my life now, the diabetes is never going away, I get so overwhelmed. I get overwhelmed and then I ignore it completely. Usually if I do check my blood sugar it will be so high my meter won’t even display a number. A week ago I decided to try to take care of myself again but I’m already starting to get frustrated. How do people manage this long term without getting too overwhelmed??

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Hi @vstillman07 welcome to our club- the one where no one wants to be a member. Grieving is a process and it takes time. You had physical and mental trauma so, in my opinion, don’t expect to be fine. Don’t expect to shrug and be able to accept that this is your life now, and not have any problem with it or anger. Thus takes time and patience and you have to treat yourself with kindness and respect.

It took me a long time to get to acceptance. I’m so stubborn and it just took me forever. I fought and fought and then realized I was just fighting with myself because of something I didn’t cause and can’t cure. The only thing I got is an ability to do something about it.

I sustain by not striving for perfection. I survive by getting angry and talking about how crappy it can feel. I try to help others and that helps me too. You’ll get to peace if you keep talking about it and try to be around others who have it too. So again welcome to TypeOneNation and I hope to see you around here.

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Hi @vstillman07 and thanks for writing in. You’ve only just started trying to get back on track, and it will take some trial and error to work out what works best for you. They say when you set goals to make them manageable so you can see achievements, rather than so large they are frustrating. So don’t expect perfection, but work towards improvements. When I started with a new doctor many years ago there were a number of things I needed to change, but he said to work on one at a time, and that was helpful. So you might want to work with your doctor to come up with a plan that works for you.
Yes, you will have this for the rest of your life - so you may as well make the best of it. At least that’s the way I view life. There was a time when a diagnosis of diabetes was an automatic death sentence. But now we have knowledge and tools at our disposal to help us lead fulfilling lives if we are willing to do the work. Does that mean you will avoid complications down the road? Not necessarily. You might, or you might not. But even if you do develop some we know much more about how to manage them now than we did when I was diagnosed in the early 1960s - and there are people on this forum who were living with diabetes before I was born, and are doing quite well.
There are all sorts of discussions on this forum from people wanting to connect with others their own age, discuss frustrations, get and give encouragement, and provide suggestions of things discuss with their doctor, or try on their own if they are experienced, if things aren’t going the way they want. It happens, and yes it’s frustrating, but we can often figure things out together.
Since you’re starting to get back on track you might want to (re) visit a nutritionist as well as your endo, of course. And it’s not unusual for people to see a counselor to help them with adjusting.
Although we Type 1s are the minority, we’re out there, enjoying our hobbies, careers, being parents. There are professional and Olympic athletes with Type 1; warrior athletes who enjoy marathons, mountain climbing or hiking the Appalachian Trail; and everyday ones who have found an exercise program they enjoy, can commit to, and that helps them keep their glucose in line - whether it’s working out independently at the gym, taking an aerobics class, or simply enjoying a refreshing walk. Your goals may not be on the more extreme end, but think about how you would like your life to look, and work with your care team to keep you in good health to make it happen. Then take this one day at a time. Think of the things that make you, “you”: you may be a student, pet lover, sibling, too-much-tv-watcher, an avid reader, a volunteer, [???]'s biggest fan, an avid reader, an aspiring writer… the list goes on and on, and “diabetic” or “person with diabetes” if you prefer will be in there somewhere. But it’s one of dozens of things that go into making you who you are, and with the and practice will help you with the discipline to be those other things.
Wishing you the best.

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Hi Victoria, and a Warm Welcome to the JDRF TypeOneNation Forum! Here you may find many people who went through what you are now feeling; in the 1950’s and 1960’s I fit very closely to the bit of your post I just quoted. I just didn’t care.

May I suggest, that YOU CAN live a happy and enjoyable life now just as you did for your first 18 years, and lead a productive and fulfilling life even though you have diabetes. Think about what you want in life, and try to achieve that goal and MAKE diabetes fit into your plan; do not set hard and fast “number goals”, but please do use the numbers produced by your BG Meter and lab test HbA1c as “markers” along your pathway to give you guidance.

Know that every day can not be perfect - your body is not a machine programmed to continuously make identical widgets - you are a unique individuat with personality, with emotions, with hormones and stress.

Be yourself, a person who you like; live and enjoy life!

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Dear Victoria,

I empathize so incredibly hard along with everyone in this with you that fight this disease.
It isn’t fair, it’s an injustice that can feel so unbearably isolating. I struggled for years from the age of diagnosis (14) till about 23… I’ll spare you the details but I want you to know there is hope. I like you especially at 18 allowed the denial to grow and ultimately consume me.
It’s a journey not to be cliche… it get’s better… One day you will have less of the bad days…
You’ll decide that you have had enough. There will be people that come into your life just at the right time to give you strength to keep moving forward. You will conquer this but as with anything new it takes time. I know it’s not the answer you want to hear right now and I would be lying. If I didn’t say that I still have days were I have so much anger towards this disease. You’ll find your balance and everyone with this disease is a little different…
Remember for as much as this freaking sucks in so many ways its unfathomable… Reframe for your own peace and to build on the positives. You’ll need this to fight… You are strong now and you will only get stronger. I went to therapy for 7 years to a psychologist that specialized in type 1 and eating disorders. I was in exactly the same boat when I started going and honestly only went because my parents forced me. I would highly highly recommend this route as having coping skills for the mental, emotional, physcial, spiritual challenges type 1 throws your way strengthens you to get through those terrible days… and provide the catalyst on the good. In the mean time… it is absolutely okay to be freaking pissed the hell off… Fuel that energy into something don’t let it take you over. Go throw a plate, write aggressively in a journal… lol but seriously write down the hatred you have for this disease. Get it out in other words and if you can hopefully find something to focus that anger into. It feels like you are 5 steps behind everyone else right… I promise adversity builds more growth than most things… You can expect to fall down many times but you will stand up more… When you take the reigns of how this disease effects your life and you’ll figure that out don’t worry. It will empower you and you will refuse to let it define you or your life. I know there is no light that can be seen now… and again I know the bleakness of that overwhelming feeling… It will get better because you decide for it to be. I am here if you ever need support.

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Victoria, you’ve received some excellent comments from veteran diabetics. Living with it can seem daunting at times. I’ve used some of the suggestions that you’ve already read, and they do work. Recently, I found a YouTube channel, “Between Two Lines” by a type one diabetic named Levi. He offers a humorous perspective about this illness, and it’s helped me when I feel discouraged. Maybe you’ll find it useful.

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@vstillman07
Reading your message gave me flashbacks to when I was 20, and I was trying to take care of my diabetes, and it just seems impossible. All I know is living with diabetes I got diagnosed at the age of 7, and it’s been over ten years, and I’m still figuring things out. I don’t know how it is for others, but I still get overwhelmed because there are days where nothing seems like its going right. And there are days where I just want to throw in the towel when it comes to dealing with diabetes because I am just tired of it. Something I wish someone would have told me to take it easy on myself, and this disease is a bit different for everyone. Learning to take care of diabetes is a skill that you’ll learn. And you’re just starting, so it makes sense that it is frustrating you. Congratulate your self for every day that you tried with your diabetes, whether you reached all your goals or not and think about one thing that you can work on for the next day, even if its the same thing over and over again. I hated how having diabetes made me feel like something is wrong with me. I had a lot of animosity and hatred. My therapist suggested I try writing a letter to my diabetes and express how I feel, it’s really weird, but it made me feel heard and gave me some sort of control. I promise that it will get better. If you need anything, I’d be happy to help you. You got this!!!

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I sympathize with you. I was a healthy 22 year old when I was diagnosed. I have now been diabetic for more years than I was non diabetic. I still have those days where I get angry that I have to cope with all the associated things that come with being a T1. I really struggle around the holiday season when all the rest of the family are piling away all the sweet treats . I have found that routine helps me deal with the stress. I tend to eat many of the same foods and try to eat at the same time frame. I have been a pump user for a long time and have discovered that I process insulin differently at different times of the day. My carb ratio at dinner is quite different from breakfast. I learned these things working with a good endocrinologist and keeping notes. The one suggestion that I give everyone that I talk to is to make sure you are working with a good specialist to help you learn about all the variables in life that you will need to deal with. I personally find that a pump and cgm ease a lot of the stress of managing my bg. I really like knowing if my 135 bg is 135 trending up or trending down. I took quite a while to process that extremes in my bg caused me to feel physically bad. Once I finally processed that, I let that drive me to keep myself on an more even keel. I also don’t let my T1 stop me from doing anything that I want to do, except pigging out on sugar. That is also a very important thing that I took quite some time to process. Don’t let T1 get in the way of your dreams. Coping does get easier with more experience. Just remember to reach out for help when you need it.

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