I am having a serious "I hate diabetes" day.
For the past week or so my control has just been horrible. I'm taking more insulin than I did before (using a 1:4 breakfast ratio!) and often STILL going high. Yet up until a week ago, things were great.
I am really beginning to think my problem is hormones. I will have a week or two where control seems almost "easy"—the rules work (mostly), as long as I don't mess up I have relatively good numbers, I can go days staying between 70-180 or at least close to that.
And then I go through periods like this, that last a week or two, where I spend DAYS without being able to stay below 200 for more than a few hours. Where NONE of the rules that worked just a week before work. Where I can go high at the drop of a hat for no reason. Oops, ate 1g of carbohydrates too many ... let's go over 250!
And then, for no reason, it will just settle back down again.
Well, I'm currently in one of those bad periods. I've upped all my pump settings and am still spending hours and HOURS in the 200-250 range. It seems like once I go above 200 it takes half the day or more to come down. Except then, when I do come down, I crash way too low. It's like all the corrections I've been giving over the previous six or eight hours store up and then kick in all at once.
It happened last night. From noon until bedtime I was stuck in the 200-250 range. So before bed I gave a correction and went to bed two hours later (not doing any more correction, even though I was still 200+). Woke up at 4:00 AM with a blood sugar of 48. Corrected, NOT TOO MUCH, and woke up this morning at 202. Was still 239 after breakfast. Corrected. Was still 229 at lunch. Corrected and ate lunch. Was still 189 after lunch. Corrected.
Literally half an hour later? 108. With a TON of insulin on board from a correction that hasn't even started to kick in yet. I will not eat until I actually go low, because I've been high so much that I do NOT want to do anything that will provoke a high.
Sometimes, like the other day, I will have a few readings in a row that are in range. And I'll get all excited that I've finally figured things out. Until I go from 180 to 250. After a correction. Without eating a thing. And then the hours of highs start all over again.
I am not on some crazy new schedule. I'm not eating crazy new food that I've never tried before. I'm not eating out or eating food that other people have prepared. I'm not eating SUPER low carb, but I am eating around 100g per day, and keeping meals to 30g or (usually) less. I'm exercising almost daily. I'm testing 10x a day. I'm reviewing logs regularly. I'm weighing/measuring and using a calculator to count carbohydrates exactly. I'm eating the same meals at the same time almost every day.
It's not my pump or infusion set or my insulin, because I've tried eliminating each of those and it changes nothing.
Sometimes I wonder if I'm just missing something really obvious that everyone else knows about and I don't.
Sometimes I wish someone else could take control of my diabetes, just for a few days or a week. Just so I know that it's not something I'm doing. So I know that I am not crazy. That the rules DO seem to change at a moment's notice. That I can go from 100 to 250 or from 200 to 45 for NO reason. Or at least nothing I knowingly did.
Because it really drives me crazy. It also drives me crazy that my CDE basically acts like I'm non-compliant, and my endo has basically shuffled me off to the "brittle" category and acts like I just have to live with this kind of control because he is unable to spot any patterns in my readings. Over the past few years he's made all kinds of comments that seriously make me want to get a new endo. Things like this level of control is "good enough for me" because my risk of complications "isn't too high" as long as I keep my A1c in the low 7s and that if I'm randomly 200 "it's impossible to tell why" and if we could just manage to keep 50% of my readings in range "that might be the best we can do."
Maybe I would be okay with this kind of control if I wasn't exercising and was eating 300g of carbohydrates per day and wasn't keeping logs and was just guestimating the carbohydrate counts of foods I ate and had a schedule that was completely different every day ... But I'm not doing any of those things.
I keep looking back at a CGM I did for about five days in 2009. For that week I put even more effort into diabetes than I usually do. I kept detailed logs of everything I ate, of exact exercises I did. I stuck to a schedule that was as consistent as I could possibly keep it, because I wanted to get as much out of the experience as I could.
It didn't really show me anything I didn't already know. I'm catching nearly all of my highs and lows (or at least was back then, but I doubt anything has changed). My CDE and endo couldn't spot any patterns (as usual). But what it DID show is that I had three days where I kept 88%, 82%, and 95% of my readings between 70-180. And the next day? Only 32% were within that range. And the next day, only 23% was in that range. And everything was recorded and there for my endo and CDE to see that I had changed nothing.
At least it "caught on tape" so to speak, EXACTLY what drives me crazy about my diabetes. That, and as of late my increased insulin needs. Which I'm sure aren't helping matters, but I can live with taking more insulin if I at least was able to keep consistent control.
But, I know in a few days or a week, things will probably go back to "normal" just as quickly as they changed. My insulin doses will go back down. Corrections will bring me down properly, food will send me up predictably. I'll actually feel like I can predict where my next blood sugar might be. I'll be able to stay between 70-180 most of the time. Little tweaks might be needed, but if they are they will work! Things will seem "easy" (relatively speaking) again. Looking back at my logs, it really does seem to be a two- or three-week cycle. Two weeks of easy control, two weeks of complete chaos, repeat.
I seriously wonder: Is that relatively easy period ... is THAT what most people's diabetes is like a majority of the time? Because if so, maybe that's what I'm missing. I'm just not sure if there's anything I can do about it.
As for a new endo, I am looking into it. My main hesitation right now is that due to where I live, the next closest endo is an hour commute away. Meaning I would never be able to go after work, I'd always have to miss work to go. And I am wanting an endo who is seriously willing to work with me. I am willing to go once a month, I am willing to e-mail in weekly logs, I am willing to do anything they ask. I just really need an endo who is going to recognize and appreciate that, maybe unlike a lot of their patients, I am WILLING to put in 110% effort, and I want them to take advantage of that. I will be moving in the near future (hopefully within the year), same city but to an area where public transit is better, and was planning on waiting until then to switch endos. But I see my endo next in mid-April, and I think if that appointment is more of the same, I'm going to make thw switch sooner even if it does mean missing more work.