So I’ve been diagnosed for the past 5 years and I feel like I’ve never had any real control over this “condition”.
I was 15 when I was diagnosed and I’m coming up on my 5 year mark and I feel like I’m not really getting any better. I don’t totally ignore the diabetes but I never check my blood sugar because I get anxiety about what the numbers may look like. I know it’s mental but it’s hard for me.
I also don’t take my Lantus at night because I’ve read about people that pass away through the night due to lows so that shakes me up too much. I do take my novolog after every time I eat but I never learned to carb count so I “wing” it and use an average of 10-11 units and wait to see if my BS drops and if so I’ll just eat a snack.
I’m currently doing the bare minimum to get by at this point and I know I could be doing better. I feel like mentally I’m just DRAINED. So I guess what I’m really asking is, what are some tips to look on the brighter side of diabetes?
p.s. I’m a first generation diabetic between my family and friends so they try to help and give words of encouragement but I feel like they really don’t know what it’s like so they only say what they think I’d like to hear…
Hi @Jvermilya. It looks like you just posted a couple of hours ago and I hope you get lots of responses to help you through. I’ve been Type 1 since 1963 myself, and there are lots of us on the forum who have had diabetes for a long time and can relate to your frustration. That’s not to say we feel this way all the time, but it does happen from time to time.
I completely understand your fear of overnight lows. Continuous Glucose Monitors (CGMs) are relatively new - we didn’t have BG meters much less those when I was your age(!) - and when my family went out of town and I had the house to myself I always set my alarm to go off every 2 hours so I could “see how I felt” and determine if I needed a snack. Is that an option for you? You might find it give you great peace of mind, especially overnight and when driving.
Regarding carb counting, I would suggest you consult with a nutritionist to get some guidance. There are some excellent apps to use as well - my personal favorite is MyNetDiary and I’m sure other responders will share theirs. I’ve found that MyNetDiary has a huge database of foods, including ones you find at chain restaurants, so you can select what you’re planning to eat, note the quantity and size, and it calculates the carbs for you; and if you’re preparing something yourself you can plug in the portion size (oz/cups, etc.) and it will give you the count. Once you have that you’ll need to know your carb ratio to determine how much insulin to take. I’m probably not telling you anything you don’t already know, but from time to time it helps to get a refresher (my endo is sending me to see a nutritionist in a few weeks).
Hopefully you will be able to find a good endocrinologist, nutritionist and diabetes nurse educator to work with. The guessing game itself can be dangerous, but working with a good team should get you back on track and give you some confidence. My final piece of advice (at last!) would be, be brutally honest about what’s going on as you work with them to put a plan in place. You probably remember there is some “tweaking” involved once you get started; so keep tight and records (those trackers are a huge help!) so they’ll know how to adjust. Looking at the numbers may be frightening but as I said, it will help them with any necessary adjustments to keep you in good control. Wishing you the best.
I’ve been doing this for just over 40 years now and I don’t really have “control” over this either. but let me try to explain the context
for the first 20 years or so I was so wrapped up in “how can this happen to me” I believed that “control” meant making this bad dream go away. To this end all I found was failure and frustration and despair. Then I believed I was the failure, and that kept me exhausted and beaten and down on the floor. Now you can go down this road if you really want to, but for me it was literally a dead end.
I took some time to work on my self-esteem and with therapy and self help, came to a decision to treat myself better, not just because it’s the right thing to do, but because I deserve to be happy. This was a new concept for me.
This is very different than wishing that I didn’t have diabetes.
type 1 does not necessarily run in families, so most of us don’t have family history. I don’t either. this is not an exception, it’s the general deal. I didn’t know anyone else with Type 1, in my family or out, until I was in my 30’s.
you can have any kind of control you want, and you can make changes and treat yourself better when the time is right for you. as soon a you want something more, as soon as you forgive yourself for getting sick, you can start to make changes that will make you feel better and that will give you the energy to go further.
Hi @Jvermilya
I can totally relate on how "burnt out you are feeling. I have had t1d 21 years of my life. & the last 5 years alone have been the hardest years of my life. I am so sorry you feel like its hard for you. & i am just hear to say DIABETES DOES NOT CONTROL YOU! YOU are in charge of Diabetes. I know how much easier that is said then done. But you are still young with a full life ahead of you! take control. YOU GOT THIS