Living with Type 1 Diabetes: Feeling Like a Failure Doesn’t Help

I got my A1C back a couple days ago. It wasn’t where I wanted it. I am going to disclose it here for the first time because I know so many of you understand the frustration I’m going through. The nurse wasn’t going to give it to me. She only mentioned that my doctor wasn’t happy with my diabetes control. I asked what my A1C number was and she said “Oh, I’ll have to look at that. It will be a moment while I pull it up”. I waited and wondered why I had to ask for such an important number. I’ve had Type 1 diabetes for 22 years. I always want to know what my A1C is.

She got back to me and said that it was 7.2. I was saddened because I was sure in my mind that it would be in the 6’s. At the same time, I had been struggling to get to 7 with all the gluten problems with undiagnosed celiac and my general bit of depression during those hard times of weird symptoms and no answers from the medical community. I had been at 7.4 just a little while ago.

I probably sounded shocked that they weren’t a bit nicer about it since it had gone down. The whole “the doctor isn’t happy with your diabetes control” bit seemed a bit harsh to me considering it had gone down. It would have been nice to hear “You are doing better. Keep working at it, we would like it a little lower”. The test is hard enough. Feeling like a failure doesn’t help. I was happy that it had gone down, albeit a bit sad that it wasn’t enough. At the same time, I have had some rough patches with all the recent health issues.

They increased my morning and bedtime long-lasting insulin. I protested a little and mentioned that the nighttime lows scare me so much that I run it a little higher at night. I know it is probably a good portion of the reason my A1C is higher, but I’m scared, big-time. I want to wake up each day! I told her this and she just passively said “Oh, yeah”. I also know that with my day job I tend to have a lot of lows. I am physically active at my job and so my blood sugars drop often and I snack frequently. I was worried about taking more daytime insulin too but thought I’d give it a try.

The first day I ended up really low twice by 5p.m. My husband worried. He said “I wouldn’t do it! They aren’t realizing how often you go low”. I felt the same, but I do want a lower A1C. At what cost does this low number come? I take 7 or more daily insulin injections to try to stay as tightly controlled as possible.

I haven’t done the nighttime increase just yet. I have gone low enough to be unconscious once in my life and it was overnight. I’ll never forget the voices of the paramedics trying to reassure me and waking up in the hospital sick from the glucagon. I was scared and battle scarred after biting my tongue while being combative in my sleep. I never want that feeling again. Doctors just see a glimpse of our numbers with an A1C. He doesn’t know that story from long ago that has haunted me for about 20 years. I think sometimes we need to decide for ourselves what is doable. We need to try to balance this fine line of high and low without getting hurt. I am trying not to feel like a failure. I am proud of myself for getting that number lower. I’ll just have to keep at it.

 

4 thoughts on “Living with Type 1 Diabetes: Feeling Like a Failure Doesn’t Help

  • December 8, 2016 at 10:04 am
    Permalink

    Thank you for sharing your powerful story! Congratulations on bringing your A1C down. I have T1 and celiac too, and I can relate to the struggles with lows and managing BGs in general. Two things have really helped me. Getting a Dexcom continuous glucose monitor has totally decreased my frequency of lows and how severe they are. The alarm is loud enough to wake me up at night. I’ve been able to keep my A1C below 7 with much much less time in low blood sugar land. The second thing is the tudiabetes.org social media group. It is for people with diabetes or family members. I’ve gotten a ton of good information and support there. (As for your medical team…maybe time for a switch?) Thanks again for your powerful honesty.

    Reply
  • December 8, 2016 at 7:15 pm
    Permalink

    Maybe it is time for a new doctor? I have been a type 1 for 35 years now and your 7.2 A1c is pretty darn good!! Keep on it and keep doing the blood sugars. Is your doctor an Endocrinologist?

    Reply
  • December 9, 2016 at 7:30 am
    Permalink

    I totally sympathise with you. I face the same problem of knowing how low should we risk in order to get a nicer A1c. I am battling it for the last 47 years. We (all diabetics) cannot lower our arms or give up because the alternative is far worst. Therefore keep up your efforts and aim for that 6.X ( a handful of 7.x are not meaningful in the long run). Best regards, Fernando

    Reply
  • December 10, 2016 at 5:57 am
    Permalink

    First of all, congratulations on lowering your A1C! As you said, you lowered it from where it was previously, so the next step is to fine-tune what you’re doing to get it even lower.

    After I understood the basic mechanisms of basal/bolus, I moved my endocrinologist from the driver’s seat and I took over. IOW, I make most of my dosing decisions and my endo/CDE team are my professional advisors. I also let them explicitly know that the appointments are to discuss action plans and NEVER to pass judgement on my worth as a patient/person.

    Your post opens up a lot of questions.

    Have you performed any basal testing (especially for your overnight basal dose)?

    Have you considered using an insulin pump?

    Do you use a CGM?

    Do you ever adjust your insulin:carb ratio based on your activity level?

    Wishing you continued success!

    Reply

Leave a Reply

Your email address will not be published.