Sometimes I seriously wish I could hire someone to follow me around for a week and tell me what to do each time I have a diabetes decision to make. I would follow their instructions exactly.
Not because I'm tired of diabetes or want a vacation, but because I wonder if I'm doing something wrong and they'd be able to do a better job than I'm doing.
This isn't even a particularly bad day for me. But I woke up high and corrected and then a bit later ate breakfast. Then I went back to bed because I was tired.
I woke up three hours later to the phone ringing. It was my mom. I talked to her and then tested. I was 1.7 (31 mg/dl).
I don't like going high constantly. I also don't like not even feeling those kinds of lows.
I didn't test before eating breakfast because it was only a little while after I bolused. I didn't test prior to going back to sleep because it was just after I ate. I ate the exact same thing yesterday and was high all morning ... except I woke up low, instead of high. Even though I ate the same food for dinner and nothing before bed.
But even when I do test more, when I test 12 times a day, it's the same type of results.
I can handle doing all the daily diabetes stuff. But I get so tired of the daily ups and downs. Constantly. So. Tired. THIS is what seriously burns me out.
Anyway. Just had to vent. Sometime, somehow, I'm hoping I will find a solution.
I left my camera at work so can't take a pic, but the main difference I see in my meter that could help you is to TEST MORE!! (I assume you don't have a CGM). I test about double the amount you do, and it makes a HUGE difference.
I also wonder if you are getting enough exercise? I can have a hard time getting out the door (though I do enjoy exercising once I'm doing it), but I think it keeps my insulin sensitivity in a fairly narrow range. I usually exercise for only 20 min at a time (if you exercise hard you don't need to do it as long to get the same effect), though I'm doing longer runs these days because of the good weather.
So if I was following you around, the main thing I would do is nudge you every hour or so to tell you to check your BG - and maybe kick you in the shins every other day to get you out the door to exercise.
(One other thing I noticed - you really shouldn't go to bed soon after eating - give your food time to digest so you know where your BG is when you're ready to go to bed and can correct if necessary. It took me a LONG time to learn that too).
I exercise 30 mins a day (that's what causes some of the lows). I also have a second meter so I do test more than this displays. Most days I test 8-10x a day, though at the moment it's probably a little less.
My endo really wants me to get a CGM, and I really want one. There's just no way I can afford one in the near future. :(
Partly why this burns me out so much is that this has been my diabetes pattern for years. I have never had stable blood sugars for more than a few days at a time and have never had more than a handful of A1c's below 7 in 23 years.
I have read a lot about diabetes management and am not a newbie or someone who wants to do the bare minimum to get by ... I have gone through periods where I've exercised an hour a day, where I've tested 15x a day, where I've eaten very low carb, where I've tried to keep things as exactly consistent as possible. The low carb did help but that is proving impossible right now because I have a dozen food allergies. Exercise just seems to give me more lows and less highs - it doesn't seem to make things any less variable, it just lowers the amount of insulin I take and lowers the range into which my BG falls. I have huge difficulties not going high or low surrounding exercise (for example if I cut my basal back too much or eat too much I go high, but if I do either too little I go low with even mild exercise ... I haven't found a balance yet).
I feel like hormones and weather and the slightest stress or change in routine have huge impacts on my blood sugar that I am constantly trying to adjust to and that cause a lot of the huge swings or changes in my insulin doses.
I do agree I probably shouldn't have had breakfast and gone back to bed (I just got back from three weeks of travel so have been sleeping a lot). But the previous two days I ate the same thing and bolused the same amount and ended up high. Today I did put my pump settings up a bit, but not THAT must (like I changed the carb ratio by 1).
Thanks for your suggestions though, I'll make sure to test more and exercise more.
Also, part of the reason I stopped testing so often (15x a day or so) is because I'd often test an hour after eating a meal and be high and correct, and then end up low an hour later. Or I'd on the low side an hour after eating and would eat and then end up high. So I decided that I'd only test at times when I thought I was high or low and would actually take some action. (That, and my endo at the time thought I tested way too often, he thought testing 7x was a lot ... I have a better endo now so I don't think that would be a problem, but my prescription right now is only for 10x a day).
Thx for writing. Relate to the up down frustrate exercise BG uncontrolled. Imagine getting bionic pancreas. BG stable 100 round the clock. Could happen.
Even if you can't afford a CGM for the long term, could you do a trial of one through a local hospital or diabetes center? My insurance let me do a week-long trial after the endo OKed it. I was doing it for both the data and to see if I really wanted it attached to me all the time. In your case, you might get a better picture of trends or be able to tweak your insulins without as much fear of mega lows or highs.
Jen, I had this exact conversation with my endo this week. Gary Scheiner recommends 15g of carbs for every hour of exercise we perform. I have tried this, and it works. I was suffering the bg roller coaster severely and ready to give up. I agree with Jag, try not to go to sleep so quickly after eating. DANGER WILL ROBINSON.
I wouldn't say you are doing anything wrong. You are engaged and want to take care of yourself. That's HUGE. If I were you, I would be on the phone with that endo and express to him exactly what you have said here. Then together you two can create a goal, develop an action plan and get there together.
I know a lot of people think there is no such thing as brittle diabetes, but in reading a lot of your posts it seems like you just end up with a lot of bizzare BG readings that don’t make a lot of sense.
I’m sure you’ve done this but what helps me is limit carbs and increase protein. That helps me inject less insulin and more stable BS. I also try not to eat after 7:00 pm which helps my overnight and fasting.
I wonder if all your allergies is also impacting your BS. A lot of stress on your body that might be causeing your BS to have wild swings.
If you're exercising that much already, then I wouldn't increase it. Somehow you need to get to a stable day to day regime so you can find the underlying patterns. So maybe try to make your exercise about the same length of time and same exertion amount on the days you do it? And maybe every other day is more predictable than every day (I *think* it is for me but this is mostly conjecture). Also, I exercise right before eating dinner, long after my previous lunch injection; that may help prevent the exercise hypo you're seeing - I know that morning exercise can be very unpredictable for me.
Have you tried eating the same thing every day for a while? That helped me a lot when I was trying to figure out basal rates and I/C ratios. It's easier and much less tedious than writing down and weighing every little thing you eat for every meal.
I hope you can find some way to make sense of all the data that seems to point in different directions. I know that several years ago my meter results looked just like yours and I know how crappy that made me feel.
Jen - Your BG variability is enough to burn anyone out. Your case seems particularly difficult. I'm sorry you're having a rough time!
Have you ever been able to accomplish a successful basal rate test? Something like Gary Scheiner's protocol? Just a thought.
When you've had to fast for a medical test, were your BGs better or worse than typical? My experience is that they're much easier to control. If you respond to fasting like me, perhaps you could try a 24-hour fast to see if that can calm things down BG-wise. If 24 hours is too much, maybe just try missing one meal. It's not the solution for your situation, of course, but maybe it could offer some respite.
Good luck with your struggle. I know you put a lot of effort into controlling your BGs. You deserve better rewards for all those efforts. I wish you well!
I did a trail of one in 2009 but they still made me pay for the sensor which was (at the time) $50 and not covered by my insurance or even the province. Something I may ask my endo about, though.
My insurance (or the province) doesn't cover CGMs at all, which is why I'd have to pay for it myself.
Right now I exercise ever day either walking on a treadmill or riding a stationary bike for 30 minutes. So the exertion is pretty similar. I also try to have it around the same time each day (usually in the afternoons since I'm on summer break).
I am allergic to practically everything so right now I'm eating essentially exactly the same meals (with some daily variation but the same meals/foods each week) because my diet is so limited so I don't have a lot of choice.
I think that my basal rate/pattern is okay because if I need to I can usually skip meals without going high or low. It's just that my actual doses seem to change so often I feel like I'm constantly either going high too often or going low too often and, sometimes, there are a handful of days where I'm able to stay in range for most of a day. But whenever that happens even when I repeat the same thing the next day and the day after that, it never lasts.
Thanks for all your suggestions! I think if I can get my hands on a CGM that would provide a lot of insight.
My endo is great and fantastic - he has Type 1 himself and our appointments are always 45 to 60 minutes of going over numbers and coming up with ideas. I've told him that I feel like every little thing that changes in my day to day life has an impact on my blood sugar. Sometimes, if I get a few days of good readings, I get all excited and vow that I'll continue doing exactly what I've done on those days ... but it never lasts more than a few days before things go *completely* out of whack again. At my last appointment my endo basically said he thinks I need a CGM to get more insight into what is going on, and I think that would help a lot, but waiting in the meantime until I can afford it is frustrating!
For exercise I usually exercise for 30 minutes a day, not hugely intense. I've been eating 10g of carbs before exercise and that helps in that I don't crash really low, but usually I still end up dropping a fair bit. If I try eating much more than that I end up going high. I think that it would be easier to figure out if my BG were more stable to begin with. I think part of the reason that I sometimes drop a bit and sometimes drop hugely from the same amount of exercise is that my BG is heading up or down to begin with and I just don't realize it. Lately I can test an hour apart and get utterly different readings even with no IOB or a ton of IOB (as in I correct and an hour later test to find I've fallen from 13 to 6 and the correction hasn't even really kicked in yet). Oy, yeah. So exercise has about as many patterns for me as the rest of my readings. But yes, I have read Pumping Insulin and Think Like a Pancreas and do find their guidelines a helpful starting point.
I have thought about the whole brittle diabetes thing. I don't like the term but I can honestly relate to it. Sometimes I have no idea what my blood sugar will be from one test to the next, and it's not like I'm off ignoring diabetes and just doing whatever I want to do.
I agree with you, I would LOVE to eat lower carb and I think it's one of my frustrations right now. A while ago I was eating 90-100g a day and tried to limit meals to 20-30g and that seemed to help my BGs a bit and was also totally sustainable. I mean my BGs were still out of range daily and my A1c was still high but I feel like it was better than what's happening now.
I'm very allergic to dairy (so no cheese) and my immune system is also being triggered by peanuts, tree nuts, eggs, and soy, so I've been instructed to avoid them by my allergist (I have both food allergies and eosinophilic esophagitis). The upside of this is it means I prepare *everything* I eat myself so I have complete control over what's in my food (the very rare time I do eat out I get salad). But the downside is it's almost impossible to eat low-carb because the only source of protein I have is meat and maybe some low-carb veggies.
I've wondered if allergies impact my diabetes, but my allergies are under much better control now than they were six months ago and my blood sugars are still crazy. The one issue that might be affecting me is that about a year ago I switched from plastic infusion sets to metal ones due to intolerable irritation that was seriously interfering with my control. Now the metal sets have started to get itchy as well so I'm wondering if I'm becoming allergic to them. But htat would leave me with only one choice of going off the pump, which I might discuss with my endo. My control eight years ago on MDI was even worse than my control is on the pump, so I can't think that would help, but I think it might be worth a discussion with my doctor.
Thanks for your comments, though. Writing here and having people give some suggestions does really help me feel less frustrated, which is half the battle with diabetes.
Fasting usually works great for me. If I never ate I'm sure I'd have much better control. But one problem I do have is that although I think my basal pattern is fine, my actual insulin needs seem to change a lot with changes in hormones or changes in weather. So I'll have a string of mornings where I wake up fine and then out of nowhere will suddenly start waking up high or low. Heck, I find waking up itself makes my blood sugar go high - I can sleep in for hours and my blood sugar is fine (if it was fine to begin with) but if I wake up I end up rising quite a bit. My endo thinks this is from stress on days I'm running late, and after he pointed that out I think he might be right since it doesn't happen to the same degree on weekends.
I've done basal testing in the past but it usually comes out as needing "no change", at least until a week or two has passed and I need to move my settings up or down due to hormones or stress or something else. I do like the idea of fasting for 24 hours - too bad I already ate breakfast or I'd do it today since I woke up at 3.9.
Yes I have that problem too, I was told to try no corrections now until at least 3 hours after the last fast acting dose, but then I end up staying high for hours sometimes and then still crashing when I finally have to eat and bolus more to lower myself.
It is so frustrating. I'm also struggling a lot too, ever since I tried changing my basal regime things have gone crazy and even though I've switched back pretty much to what I was already doing, I haven't normalized whatever normal is for me.
One suggestion my cde gave me worked for one night at least: for dp: eat 1 T flax/chia seed with fat added before sleeping with no bolus and my am basal dose. I stayed flat all night at 78 but then I was high all night last night and didn't think eating would be a good idea although sometimes that is the only thing that will lower me.
