I have had diabetes for about 22 years, and for the most part have considered myself very pro-active in my care and trying very hard to maintain the balance. However, I continually feel like I can't get my blood sugars good enough. I do not feel like I have the most helpful Dr, but really am not sure who else there is locally. I am an active person, and am frustrated because maintaining a regimened schedule just isn't going to happen. For work some days I am in the office, others out putting fires out (literally). Such a broad spectrum. I work out regularly and eat very healthy to try and maintain some consistency, but it never works. I get frustrated when I hear non-diabetics tell me their friend is so good at maintaining their diabetes because their A1C is 5.5. I know they do not mean to but it makes me feel like a failure. I just got a cgm, which is a neat tool and hopefully will help. I am just wondering if there are others that try really hard, but just struggle? Anyone else just not have a regular schedule either, or feels like as soon as they get everything perfect something happens?
I have also been exceedly frustrated with the financial aspect of diabetes. It seems as though everything is so expensive!
I have read that studies seem to show that the likelihood of suffering complications does not change noticeably with super-tight control as opposed to control that leaves the a1c at slightly under 7. That's the magic number to try for, and an a1c of 5.5 doesn't protect much more than that according to what the latest tests I have read about seem to indicate. So there is no proof that the super low numbers help.
Furthermore, likelihood of severe hypoglycemia that can kill increases when the medium range lowers. Type 2 people can achieve this kind of a1c without risk of severe hypoglycemia since their own bodies are functioning to help regulate the insulin levels, but we can't turn off that insulin as easily. Even with a pump, once the insulin has caused a hypo episode, turning off the pump won't fix us all that quickly and we can get in real trouble with a hypo episode. I have read that instances of severe hypoglycemia have increased a lot since tight control became achievable. Did you know that once a person dies, a blood sugar reading cannot be had to show if hypoglycemia was the culprit or not? I wonder how many type 1 folks have died because of hypos but the autopsies cannot show this as cause. A bit scary.
Especially for an active person, hypoglycemia is a danger, for our muscles continue burning carbs for long after the activity has stopped. A "couch potato" type 1 is going to have an easier time maintaining a low a1c than an active person because there is little change in the body's carb requirements. But the couch potato is going to not be in as good physical condition and this will eventually cause health issues as the person ages. So you are trading the 5.5 a1c for a healthy lifestyle. Methinks you are probably better off this way.
As for a regular schedule, I would like to point out that non-diabetics don't have regular schedules either. Their bodies just correct all day long to keep the levels in the healthy range. But our bodies cannot adjust themselves, so the only hope we have is to increase carbs or increase insulin when we see test results that indicate that we need to change something. Since our bodies don't correct themselves, I feel that good control is testing often and correcting often. This is what I do, and I don't worry about whether the number is perfect or not -- it is merely a number that tells me how to correct things for the next few hours. I test and adjust every 2-3 hours and this brings my levels often into the normal range for optimum health. Try seeing the number as neutral information that tells you whether you need to change anything for the next couple of hours rather than as a goal. It eases the frustration, and the result of living this way is that my own a1c stays stable at an almost normal level -- but my levels swing just like other type 1 people's levels do. I just correct them often. The frequent adjustments are the key, not the perfect glucose tests. I need to test when my levels are NOT perfect, not when they are, if you see what I mean.
This helps my attitude a lot so I don't see it as a struggle -- it is just a constant adjustment to help me live a normal life since my own pancreas cannot adjust for me. Testing often and adjusting often helps prevent severe lows, too, for we catch the swings before they get serious this way. Your CGM will do this for you, which will be wonderful. But you still need to adjust when you see the numbers swinging. But don't be frustrated. It sounds as if you are doing everything right. We heap unnecessary guilt upon ourselves when we pin our success or failure on perfect glucometer numbers. Those numbers are just information, not a goal. Tell yourself this over and over until you believe it and the change in attitude will be tremendous.
Thanks for the encouragement! It really helped to hear that others struggle as much, and have the diabetes guilt. Seeing my blood sugar patterns on the CGM have been both encouraging and discouraging, on one hand it is great to see the effects of my actions over time, but on the other, I feel like I have worse control than I thought I did. I think with that though, I need to be patient and see what happens for a little bit, then re-assess.
One of the smartest young type 1 diabetics that I have known through JDRF once emailed to me that she thinks Type 1 is the only disease whereby a normal working pancreas is exchanged for GUILT! True, so true. I used to feel guilty, too. But then I just sort of stumbled upon the test-often-and-correct method and the results have been amazing. And easy. I really have learned to see the numbers as technical, scientific information, as TOOLS rather than as a goal. I guess I feel that if a level goes up or down too much, it can't cause much damage if I correct quickly. For ME, the goal is staggering into that normal range as often as I can while living a normal life. Do we STAY in the normal range for long periods of time? Nope, no type 1 can do that since nothing is happening in our bodies to respond to the changes of each day and even each hour. We are just so fortunate that we can live so healthily as long as we deliberately take over the functions that our brain-pancreas team is supposed to be doing for us.
I have heard both good and bad things about what a CGM does for you -- certainly makes you more aware of the many times your levels go out of the normal range, and so probably adds to guilt feelings. Articles I have read suggest that a CGM is greatly helpful if you use it to adjust things only every 3 hours or so, the length of time that it takes for quick-acting insulins to peak. The danger is if we get so paranoid that we start correcting before the LAST quick-acting insulin had a chance to do its job and peak. Then we get double peaks and can end up hypo with double whammies. The truth is that no matter how wonderful our quick-acting insulins are, they don't PERFECTLY match our digestion times, which vary. A non-diabetic's body does this amazing calculation all day, adjusting to every nuance of change in digestion and activity. There is no way you can achieve that just because we have to work with tools that absorb regularly for about 3 hours instead of tools that work exactly as we need them. We women also have to deal with hormones that mess everything up -- all the doctors I have ever seen have been pretty much oblivious to that issue. So don't be too hard on yourself, Gina! I suspect you are doing a wonderful job.
And the new technology is amazing. Now we just need to see a company that manages to put the CGM in communication with a pump with only one insert site so it corrects all day just like a non-diabetic body does. I think this will be the next wave of technology, and if that happens, I will move to a pump for the first time. I currently don't use one because I seem to do so well with shots and I fear the scar tissue issues that some small women develop -- scarring that makes insulin absorb poorly. I am a tiny woman and just don't have much skin and fat area to deal with, and if I live to be 90 as I plan to, I need to be able to absorb insulin for many more years.
By the way, I thank you for the support you offer to so many on this web forum. You are one of my "favorites" here on this site. :o)
I have had T1 diabetes for 50 years. I am occasionally "tired" of being diabetic, but it is part of who I am now. I, too, dream of not having to worry about it. I'd like to get just one day off, but no such luck. It will be very tough to have the insulin injector and interstitial fluid sensor in the same poker. Currently, you need two sites to get accurate readings, separated by at least 2 inches.
I dream of being able to turn stem cells from my own bone marrow into beta cells, then inject them into my liver to deliver insulin perfectly in my system. I already take anti-rejection drugs because my son gave me a kidney last Christmas, so I won't even have to change the dose of those medications.
As a suggestion, you may want to check out the Behavioral Diabetes Institute - a group of psychologists who deal strictly with the mental aspects of diabetes. It is run by Dr. Bill Polonski, who wrote the book Diabetes Burnout. They offer classes, seminars and counseling, as well as speeches around the world. Go to their website and check it out (BDI.org). They offer a Diabetes Etiquette Card you can share with parents and friends, questions they should not ask, like "Are you sure you should be eating that?" It's a great group. BDI is located in San Diego.