Worried about my future

New here and have recently been feeling down and anxiety riddled Hoping to connect with some people who can understand- I am type one. I was diagnosed when I was 23. I’ve been diabetic for six years and I gained very good control and quickly got my a1c from 14.1 to 7. Something and continued to reduce it but as of my last checkup my a1c has increased (7.1) and I overall feeling extremely anxious about hypoglycemia and my future and health complications. I have two beautiful babies and I worry they’ll be diagnosed and sometimes the fears are daunting. I am always so strong and never let diabetes get me down but lately I am struggling greatly. I don’t feel I am living to my fullest potential and my control is certainly not the best it can, and has been- Any advice or insight is appreciated!

Hi! I have had T1D for over 30 years and yet I also feel some of the same things. I’ve also been feeling very down lately. A couple things - first of all, you’re not alone even if people don’t want to reply here. I was recently in a diabetes weight loss program and it was very normal for everyone to feel a range of emotions. I’m here for you. Secondly - I have had T1D for over 30 years and have only had A1Cs under 8 in the last few years. This has been considered good health. Don’t be too hard on yourself - having an A1C under 7 is the the goal for T1D so really staying under 8 makes you a champion. I also struggle with feeling down and trying my hardest, and I don’t have kids to manage :stuck_out_tongue: Would love to chat more with you! xo ~Anna

Hi Michelle,
We sound very much alike. I am new here and I came here because I am having more breakdowns as well. I was diagnosed 12 years ago when I was 23. I spent 3 nights in ICU with a A1C of 16 now down to 7.1 and for the most part I’m doing pretty good. I’ve had some scary hypoglycemic occasions and I understand your fear especially being around your sweet babies. I have a 10yr old that knows what to do when I start acting low and has helped me on more than one occasion. It has been comforting to know that I have more eyes watching out for me. I worry a lot about my future. Mostly what it will look like, what affects it will have and what my husband will have to watch me go through. Sometimes I feel like I’m falling apart… like it’s the beginning of the end. I get so tired of all the stuff that goes into it…every…single day… Like, I would love to have a freaking cup of OJ without going into a coma or I wish I could go on a bike ride without worrying what my #s are/will be/active insulin/do I have something to pick me up if I drop low? etc… I’m just tired of it…but I move on and I try to focus on good days with my family, that I’m blessed with insurance, good doctors and technology that allows me to live a some what normal life. I look forward to seeing what advances are made in my life time and one day I would love to be able to say “I had diabetes”. Who knows…Maybe someday…but today was a rough day.

Michelle, I’m sorry your having a down time. I just wanted you to know I understand somewhat of what your feeling. I came here for support and your post was the first I saw… thank you for showing me that I am not alone in my struggles. Keep up the good fight.

@Mlp1124 hi Michelle,

7.1 is a number. only thoughts and words, can make it anything but a number.

an HbA1c of 7.1% when your pancreas is shot and you have to rely on crappy blood sugar meters and “the best man-made insulin” available is nothing short of a miracle. Think about it: food nutrition labels are biased and sometimes inaccurate, when you account for stress and how many times you blink your eyes and +/-20% sugar meter accuracy and whether or not you still have 45 minutes of “fast acting” insulin in your system from 3 hours ago.,… AND realize that from the very bottom to the top of “normal blood sugar” is 4 skittles wide… you start to get the picture.

this thing can take up all of your energy, especially if you fight with it. diabetes can melt self-esteem as we struggle with the “why” or “why me” or do the “family history head-count” looking for clues or for some root-cause.

ok so you’re feeling burnt out. I get it. just realize that you are already doing the best you can. if you could do any better… you would do better. diabetes is relentless, demanding, and the reward for doing the very best job means we get to feel normal for 30 minutes to an hour. the penalties range from panic attacks to “flu-like” symptoms and the anxiety of permanently damaging ourselves.

the first step in reclaiming your energy is accepting you are human, that you didn’t do anything wrong, and you are doing an awesome job because you’re not dead.

give yourself some credit. this is very difficult. if you like to read there are some decent books on diabetes burnout. please consider doing a little research.

refinements can be made, and that dumb a1c number can be anything you want it to be, but do it because you want to , not because you’ve scared yourself or shamed yourself that it should be different.

cheers and good luck - we are rooting for you!

Hi Michelle @Mlp1124, I’ll start off with saying that the HbA1c might be one of the better single markers in diabetes management - but that it does NOT give a complete picture. I have a long history, and respect, with glycosylated hemoglobin - now called the HbA1c - as I was part of the originating study for this metric in the early 1970’s. And as @Joe said, your 7.1, is just a marker. I’ll give two “personal” examples to help clarify my above inference as to why I believe we need to look at more than just a number, such as your “good” 7.1.

The A1c percentage is the average Body Glucose Level [BGL] over the preceding 2,160 hours - 90 days with 24 hours in every day.

  • For about 15 years I maintained an A1c range, with only two exceptions, of 5.9 to 6.1% meaning my average BGL over those 2,160 hours was about 120 mg/dl. An average BGL of 120 is fine, but in looking at my statics I could see that my standard deviation was over 60 meaning that my readings, hour by hour, ranged on average from 60 mg/dl to 180 mg/dl. This range did not reflect the many severs lows [two required EMS to awaken me] or the many extreme “party” highs. The swing like that wasn’t good for me.
  • At the suggestion of two endocrinologists I’ve been attempting to increase my A1c to 6.5% which is equivalent to about 139 mg/dl. I’ve gotten it up to 6.3 which is equivalent to 129 mg/dl and my independent statistics indicate that the SD is down to 24 which indicates a BGL range of 105 to 153 mg/dl. Much more comfortable for me and my wife isn’t as worried and hasn’t needed to summon EMS for me. The “target ranges” on my pump are all between 100 and 140.

Also keep in mind that there are causes other than diabetes that may cause an A1c to be elevated.

Now, just a suggestion: concentrate more on having a good life and enjoy your kids and follow what it appears to be the “healthy” life you have been leading. although during the last 35 years I’ve made diabetes my science project I’ve found that during my 60+ years living with diabetes that “good diabetes management” will follow nicely with good living while being aware that everything you do [activities / food] enters into the package - in time it will be an automatic part of you.

Thanks so much for the response! Anything in particular getting you done more recently?

Thanks so much for the kind words and I can totally relate with the orange juice thing as well as the exercise concerns. I always have to pack extra stuff to go to the gym with the fear of the lows. Totally sucks- I am glad you sought out some support to it really makes a big difference to connect with fellow diabetics!

Thanks so much for your input you made me chuckle lol! You’re right a1c is a number which is why it has been so helpful to connect with people who live it everyday- thank you!

Your knowledge and information/input is remarkable and I appreciate you taking the time to reply! I will do my best to try and focus more on my future with my lovely babies and not so much on all the fears I associate with type one-

I’ve had type 1 for 28 years. I’ve felt the way you do off and on throughout the years. What you are feeling is normal and you aren’t alone. I overall have had good control but there are those times where anxiety and worry creep in and consume me. For me keeping in touch with my diabetes team, running, and journaling all help me cope with the stress of this. Just know that all you can do is your best and it sounds like you are doing a great job!

I have had diabetes for 17 years and it never gets easier, so I completely understand the feeling . I sometimes break down and just cry because I don’t want this disease anymore. I want to wake up and just say “I don’t have diabetes anymore” but unfortunately it’s not going to happen .

Hi Michele
I am new to communicating on this forum. And have had this disease for 24 years. It has helped me a lot finding others out there with the same issues. This forum helped me realize I was having a bad reaction to insulin aspart. This has helped me feel not so alone and I don’t cry everyday just wishing this was over. I hope this will rest your mind, I have 3 biological kids 21,18 and 14 none have developed type 1. Prey for a cure in our lifetime and keep working towards seeing that cure. I hope you feel better soon.