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Diagnosis really hitting me almost 6 months later….need help

I was diagnosed with T1D in December 2016 at age 26 (two months after my wedding and just before the holidays!). I had been feeling “funny” for months and the diagnosis answered some of my symptoms.

I was pretty calm during my diagnosis and the few months that followed but I feel that the reality of the diagnosis is starting to set in. Lately I’m feeling pretty down and very alone in all this. I don’t know anyone else with type 1 other than a co worker of my mom’s. I have a very supportive husband and family but in the end I still feel I am dealing with this alone.

I got a CGM 4 weeks ago and it has been helping me control my BG greatly, but I think it has also caused me to face the day to day reality of living with T1D. I wasn’t doing well controlling my BG before the CGM and think I was able to escape the reality of being a T1D.
Now I am realizing what it takes for good, sustainable T1 management and that I will have to do this everyday for the rest of my life. I feel overwhelmed and sad that I will never get a break from this.

I would greatly appreciate and wisdom/tips for helping me overcome this mindset and learn to accept being a T1 Diabetic!

Thanks 🙂

  • #122746
  • Hi @Jessica65,

    Congratulations on being a new bride, I wish for you a long and happy life with your chosen husband!

    You are not a diabetic; you are a vibrant, loving person with much to show who also happens to have diabetes. First and foremost you are still the person you have been for the past quarter century, and there is much you have accomplished; don’t forget that just because you bow find out that you have the additional task of managing T1D. Continue to live a full, active and productive life; I for one worked over 50 years [often receiving the perfect attendance awards], marred 50 years ago, we raised a family, traveled, skied almost every weekend during the winter and I still bike-ride and walk miles every day. Your diabetes does not have to limit what you do, you just need to keep a watchful eye and know what you are dong. Study what you can and figure out how your body responds to various foods, a variety of activities and insulin. Mostly, enjoy life!

    There are now a ton of tools to assist you – yes, “Self Management” is key to your success. Just knowing your BG is a treasure, 60 years ago it took two days to get a result of a blood-draw even when in hospital.

  • #122747
  • Dennis is right–although it can be overwhelming in the beginning, diabetes is something that eventually just runs in the background of the rest of your activities. Yes, you have to account for it and have a backup plan (tip: buy bigger purses for yourself), but otherwise life goes on as usual. I’m 33 and have had T1D for 32 years. I’m loving life right now alongside my husband and our lively 2 year old boy. You will go through phases over the years where you have better control than others–it happens to everyone. You can’t be 100% on top of your diabetes game every single day for decades on end without getting burned out at times.

  • #122757
  • hi @jessica54, Dennis brings to my mind something I had to learn the hard way: there is no thing that is good or bad, it’s the thinking that can make it that way. In other words, the world is how it is, if you want to be happy, you can change how the world is, or change how you think about it. and yes @Dennis, I can’t imagine the frustration of finding out how your blood sugar was 2 days ago. I started with “Clinitest” where you took 5 drops of pee and mixed it with water in a test tube, then dropped in a fizzy pill and it would boil like mad and then change color. then you compared the color to a chart. This would tell you if your blood sugar was unknown, or bad, or horribly bad about 45 minutes ago. a vast improvement over the hospital blood test for sure. the moral: even at the worst times we do have stuff to be thankful for.

    I also agree with @ksmerk12, but for me, diabetes doesn’t get easier it just gets more routine.

    if I had a wild guess, you are comparing life before with life now – and it can get you pretty down if you frame it like that. When you have a trauma, your body shuts down to protect itself. A mental trauma, such as suddenly losing your good health or even the announcement that “you now have diabetes” and your brain will do things to protect itself as well. when you are strong enough, you will allow a realization of “holy [insert favorite bad word here] this is not going to go away…ever”. 1 of 2 possible things happen here, you can re-wire your brain to become accustomed to the new reality, or go into denial. for me it was too scary, I had no support system and I took the left into a decade of denial.

    please talk about it often and with people that understand. talk about what scares you, and what makes you angry. it’s more important than I can tell you. please reach out and get a support system. any system will do. we are rooting for you!

  • #122764
  • Thank you guys so much for the kind words of encouragement @Dennis, @ksmerk12, @joe!

    It is always nice to hear success stories about the possibilities of travel and having a family with T1D, these are my two main worries!

    @Dennis- It sounds like you have been able to do both with great success! I am glad to hear travel and ski trips have not been taken off the table for you and your family. I hope to improve my management (ridding myself of denial being the first step!) and eventually resume traveling and a more active lifestyle. I would love to hear any tips you have for maintaining steady BG while doing the intense exercise you do, I have had to stop running due to BG crashes.

    @ksmerk12, I am SO glad to hear that you and your husband have a lively 2 year old! I always knew parenting can be challenging, as will pregnancy, but now having T1D has furthered my worries. Knowing there are people like you who have dealt with the challenges of T1 for their entire life and still live happy, full lives is very encouraging!

    P.S. I have invested in a mega purse 🙂

    @Joe- thanks for the advice and encouragement! Hearing about living with T1D before the technology we have today makes me grateful for the late-in-life diagnosis. Although living 25 years as a healthy person gives me a lot of “back when i felt better and didn’t have to do all of this” memories for comparison, I cannot imagine waiting 45 min to know what my BG was!
    I think we are blessed with the management tools available today but, as you said, I still need to get my biggest management tool,my mind, in check.

    I did get some good news from my Endo yesterday, while getting a CGM has made me face of the challenges of good management, my A1C went from 9.7 in May to 8.6 for June 🙂 My goal is for at least another 1.0 drop in July!

  • #122767
  • If you decide to start a family, there is a pregnancy support group here on Type 1 Nation that can be very helpful. I’ll also suggest the book “Balancing Pregnancy and Pre-Existing Diabetes”. Also, whether you’re planning a pregnancy or not, I’ll suggest reading Think Like a Pancreas. Even after 30 years with T1, that book changed my management style and helped me lower my A1c. I’d highly recommend it, as do many people on this site.

  • #122768
  • Awh, in such a similar boat here! I’m 25 and was also diagnosed late 2016. My husband and I were hoping to get pregnant again at the time (we already have a toddler) so the first thing I asked my endocrinologist was “so…..can I get pregnant again now or….?” I did not realize the weight of the diagnosis! We did end up getting pregnant right away, and NOW it has hit HARD. It’s so much to manage. And what a damper on the newlywed life newly diagnosed diabetes is!

    For me, when I look at my friends’ lives they seem so carefree in comparison to dealing with this high maintenance condition! Everyone has different struggles to deal with, just never expected to have this one. So, I wish I had something helpful to say, but all I’ve got is “right there with ya!” <3

    Bethany

  • #122774
  • @KSmerk12- Thanks for the recommendations! My dietician also recommended Think like a Pancreas, I plan to read it soon!

    @bethybus- We really are in a similar boat with our timing and ages of diagnosis. Isn’t it amazing to compare how carefree my life was before T1?! I’m glad to hear you were able to get pregnant quickly, and I totally applaud your ability to manage a pregnancy with a new diagnosis! Its been a lot for me even without the pregnancy factor. I also appreciate your words of support 🙂 I wish you the best with the rest of your pregnancy!

  • #122809
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