I am new to this site. I wanted to find out if other type ones feel the same way I do, I do not know anyone else with T1D.
I’m been a T1D for 4 1/2 years now and frankly it sucks! Try as I might I just can’t seem to get it “under control” My days are filled with lows & highs! I’m on a roller coaster it feels like and I feel like crap most of time. I’ve tested first thing in the a.m. and my lowest recently was 45! Ate a gram cracker and a few sips of apple juice and 2 hours later its 225! Then I take fast acting insulin (which my doctor wants me to take alot) to bring it down, then I crash low again, then eat and its high - I just can’t find a good range!
Appreciate any advise.
I know that I have to do my part and work harder at exercising and eating right but even when I think I’ve done really good at both my numbers are all over the place.
Hi, do you do carb counting? I have found with carb counting it is easier to manage my sugars. And measuring everything you eat and drink. I noticed some food I have to give extra amount of insulin.
controlling diabetes is part science and part experience, and that’s about all. you can read all the books you want (like "think like a pancreas, which is a really goo done in fact) but there is still a personal experience part that takes a long time and endless patience to figure out. I’ve been doing this for over 30 years and I get all messed up sometimes too. see if you can get back in touch with a CDE and go over what you are seeing and what you are doing and maybe they can be a coach for you.
anyway, there is a couple things I try to do. “the law of small numbers” is simple, big meals and big carbs with big shots of insulin = big mistakes, small meals small carbs small amount of insulin = smaller mistakes. the other thing is long acting insulin. if your long acting insulin is wrong you’ll never ever feel right. IMO it’s really important to try to get your basal insulin (lantus, whatever) as best as you can get it. yes it can be tough. sorry you are having a tough time. good luck.
If it is any consolation to you I’ll start off by suggesting that you will never get T1D “fully under control”; the best you can do is study how YOUR body reacts to foods and to insulin and how long supposedly fast-acting insulin starts working with you. Yes, trying hard and learning from one’s own experience id the best tool I’ve found during my 58 years with T1D. YES, it will be very frustrating at times but you will find reward.
A couple of suggestions to follow until you feel that you are gaining moderate control:
A. Try establishing a nutritious diet of say three meals to fit your activity level and allow for between-meal snacks.
B. If possible try to keep the same carb value in your various meals consistent from day-to-day.
C. Decide if you REALLY need insulin for a 225 after a 45 two hours earlier - I would not have taken insulin at that time. And was the finger where you got the blood for the 225 really clean? [a Paramedic story involved here]
D. Know your insulin sensitivity level [how much 1 unit of insulin will drop your BG level in one hour, two hours] and be aware that you could be giving yourself too large a correction. If you are treating with MDI (Multiple Daily Injections), delay your correction until your next scheduled injection and adjust your meal bolus accordingly if you are still high.
If you are anything like me, your frustrations will be many. This is a good place to “vent”, and share frustration; many people here have experienced what you’re feeling and have been able to prosper. Feel free to post and see how your “compatriots” respond - message me any time.
Wow, thank you all so much for your advise. I feel better already just hearing from other type ones that I’m not alone in how I’m feeling. I’ve been so hard on myself, blaming myself thinking I can’t do anything right. It makes me feel better, seeing that so many of you have been living with T1D for a long time - I was feeling so down thinking I can’t make it another year like this! But I know I can change for the better if I just keep working hard at it. I’m the happiest I’ve ever been in my life at age 47 and I want to stick around for a long time
Again really appreciate all your tips and advise.
Look forward to talking to you guys soon.
Thank you! Your right, I know that I need to start counting carbs more. I will definately work harder on this.
Hi, quick question. Is anyone on the insulin pump? What’s it like? Is life easier? I’m thinking about talking to my doctor about one.
My insulin pump has been a new lease on life for me! After 18 years of MDI shots, I switched to the pump 13 years ago, and I would never go back unless I had to. Trying to simulate what our pancreases do is hard enough with a pump, but with shots it’s so incredibly imprecise and inflexible. With my pump, I can set different basal rates for different times of day (such as to cover my dawn phenomenon in the morning), and different insulin-to-carb ratios for different mealtimes. If I’m high, I can program a correction bolus. If I’m having a stubborn low day or I’m exercising, I can turn down my basal rate for a while. I even have a different basal rate for when I have PMS. The flexibility is just amazing, and my A1C’s have been between 6.1 and 7.0 ever since, which I rarely achieved with shots. I guess you can tell that I love my pump.
Yes, I’m a pumper and like angivan, I’m a pump lover and I can readily second everything [except one point] about the benefits of a pump and how it has added freedom for my lifestyle. I’m able to select between three different patterns programmed on my pump or select a temporary basal rate automatically infusing a plus or minus percentage of the basal rates in my selected pattern.
I got my first pump about 11 years ago after being on MDI for 30 years and prior to that 5 years of two shots per day and 12 years of 1one shot per day. All the combinations of shots I employed never came close to providing the background insulin requirements like a natural pancreas. The pump, when properly programmed comes close.
I’m much newer than you are to t1d but in the past 4 weeks my daughter has been within range for all 5 daily checks everyday except 1 high in which I slipped and let her have a morning snack. I think what keeps her glucose in such a tight range is we are on a VERY strict meal/meds schedule.
She eats 45-60 carbs at exactly 7am, noon, and 630pm and gets a 15 carb snack at 3pm and 9pm. She takes her insulin ONLY 5 mins before her meals (6:55am, 11:55pm, and 6:25pm) and she takes her long acting at 8:55.
We ALWAYS stick to that plan… No more or no less carbs. And we always eat at our planned… from the first post it seems like you are not on a schedule with carbs or times… this would be the first change I made…
It is alot of work but we’ll worth it.
That is amazing and you are getting wonderful results; congratulations on achieving an effective balance between insulin, nutrition and exercise. Her diet sounds just about how mine was laid out during my first few years, but back then we didn’t have blood tests other than at hospital, fact-acting insulin or background insulin. You got it, my occasional blood test were all over the board and my urine testing was, shall we say, very colorful with lots of orange-red [worst possible] results.
Keep up the good work! Hopefully she will avoid some of the complications. My diet regimen lasted until I started college and then practically disappeared - in retrospect, that is or was the cause “problems” which thankfully have now been reversed through much effort and caring.
@Boo1968 on insulin pumps, I switched to a pump after many years of shots and after a long struggle to get all the settings right, I find it to be better for me and my lifestyle when I compare it to shots.
in the 1970’s the “eat exactly the same thing at exactly the same times” was pretty much the only meal plan choice available. While it did tend to reduce unpredictable results, it did also (for me) lead to an awful case of burnout. I think that when you are trying to set up a pump, or a new regimen of shots, the “military plan” is a good one. The nice thing about the pump - if I decide to (or need to) skip a meal, or if i decide to eat more carbs than usual, or if today, I am more (or less) active than I usually am, I can easily adjust my pump and compensate. so for me I need flexibility for both my head and my work schedule - because for me it’s closer to how my life is.
pumps sometimes get advertised as automatic, time, and effort saving devices. for me, pumping takes more effort, requires more testing, more intervention and because it has more moving parts, it takes more troubleshooting to figure out than shots! all these things considered, it has still been a good choice for me.
Thanks Joe! I think I’m ready for a pump, I have an appointment with my endo in a couple of weeks to discuss my options. Again appreciate it.
Does anyone take meds for nerve pain in their feet? I take gabipintin (sorry probably missed spelled). It makes me feel incredibly drowsy sometimes. Just wondering if anyone else feels that way. Or any suggestionson other meds? Thanks