Lately I’ve been feeling like I don’t know anything about diabetes. Well, no, I guess I’ve been feeling more like diabetes has changed the rules. Specifically, the low blood sugar rules. I’ve always felt lucky that my body handles lows really well. Even in the 30s and high 20s, I’ve been able to do what I needed to do without much of a problem. Lately, that hasn’t been the case. I had that scary bad low last month when I was home alone. Thinking back, I also had a weird low in the middle of the night while at Friends for Life. I tested somewhere in the 30s and ate four GlucoLift tablets, and then sat there trying to figure out if that was enough. I was so confused that I had no idea how many carbs I needed to treat a low. I picked up the box of Canadian Smarties that Scully had gifted to me earlier that evening and saw that it contained 40 grams of carbs. I pondered if 40 grams was what I was supposed to treat a low with and scarfed them all down. That’s right . . . . I treated a low with a total of 56 grams of carbs and thought that sounded right. Clear-headed, I was not.
Then there was another scary bad low last week. Pete worked late and picked up dinner for us on his way home. He noticed I wasn’t talking much, but assumed I was mad that he had worked so late. (Poor guy.) He said he realized something was wrong when my hand started shaking so badly that I kept dropping my food. I don’t remember that, but I do vaguely remember him bringing me a juice box and telling me to drink it. Things went kind of dark and fuzzy for a while, but I eventually realized I was covered in sweat and that Pete kept taking furtive glances at me with a concerned look on his face. I had to ask him what happened, and as he filled me in he admitted how scared he was.
I don’t know what is going on. I don’t know why my body isn’t handling lows well anymore. I don’t know anything except that, for the first time in my life, going low really scares me. I’ve lived with diabetes for a very long time and I’ve made lots of adjustments over the years. This will be another one. I’m making sure to test the second my CGM sends me a “low predicted” alarm. Earlier this week I started to feel as if I might be slipping toward another bad low, so I treated and treated and treated some more. Sure, I ended up near 200, but I will gladly correct that back down if it means avoiding another instance of realizing there is a chunk of time I can’t account for. I will do what I have to do. But it is important to know that even after 32 years and 8 months, I sometimes feel like I don’t know what I’m doing. It’s important to know that diabetes keeps changing the rules And that I do have a nagging fear deep down inside that any minute, diabetes will win.
We need a cure.
Sorry you are having such a hard time. It's truly bizarre how our tolerances can just change at the drop of a hat.
ReplyDeleteI have noticed that if my bg is 10 (180) or higher I feel like I am in DKA! I guess it's a good thing to be correcting so quickly, but still, it's hard to adjust to what feels like a new disease all the time.
Solidarity!
Something's in the air chica, same thing's been happening to me. {{{{hugs}}}}
ReplyDeleteKaren, that's awful... sorry you're having a tough time. I went through this a couple of years ago, and my endo suggested a couple of adjustments to my basals to avoid lows that were happening at the same time of day.
ReplyDeleteOf course, that alone doesn't help with the awareness of lows. But I agree that you have to do what's safe first, and concentrate on everything else second.
Oh, and you know a lot more than you think. I reread your post, and I think you're already making positive changes! Besides, no point in beating yourself up over this stupid disease which seems to have a mind of its own.
I find the notion of diabetes "control" to be unrealistic when the disease keeps changing the rules all the time. Be glad you have a CGMS; some people don't have tools like that!
ReplyDeleteSo true, Scott. I am extremely thankful that I'm fortunate enough to have a CGM to help me through this.
DeleteMy BG has only gotten slightly predictable in the last year (and now I'm terrified of jinxing myself). Apparently besides going after my pancreas and thyroid, my immune system was taking out my ovaries at the same time. At any rate, early menopause would change my insulin sensitivity on on hourly basis; it wasn't unusually to see my BG jump 150 points in half an hour in the middle of the night.. sometimes up, sometimes down. My CGM traces looked like the EKG of someone having a heart attack: 30 to 400 at least a few times a week, and there was nothing resembling a pattern to be seen. Now nine years into T1, and four years after the female parts shut down for good, I am finally seeing some kind of rhyme or reason to my BG.
ReplyDeleteI do still notice sometimes that my hands seem super-sensitive to heat (like when holding a cup of coffee) and when that happens my insulin sensitivity more than doubles - I bolus for 20g and end up eating 90 to keep from passing out...If I have hot flashes I usually need about 50% more insulin basal and bolus... Just thank goodness I have a CGM.
How terrifying Karen! Thank heavens for your husband and your CGM. I keep praying the my son will have someone wonderful in his life who will be able to take over when he can't...and then I hate that I even have to think about that for him or any other person living with diabetes. Hoping for a cure along side of you!
ReplyDeleteDiabetes doesn't have the dignity of a winner.
ReplyDeleteYou will prevail until there is a cure.
I know the feeling...when your body starts playing by a different set of rules. What should raise your blood sugar, doesn't. Lows no longer feel like lows. I hope you'll be able to figure out what's going on (the tendency is to try to fix everything right away, but that just makes it HARDER to figure out!) and find your comfort zone again. Maybe try a new vial of insulin... sometimes I get a weird, not just a weak, one. Think of this as a wake-up call, keeping you away from complacency after 30 years. You'll get back to the way things were, I'm sure of it.
ReplyDeleteoh karen, i'm sorry this is happening to you. lows are the things i fear the most, and have for years. and i've had people say "you've been diabetic for 37 years? you must know it all by now" to which i answer "no, not really. diabetes doesn't play fair and the rules change without notice".
ReplyDeletethey don't get it. i too, am lucky, i have my own "pete", who has been through all but the first 4 years of diabetes. he sees things (lows) before i do! now if i would only listen to him!!!
(((hugs))))
I <3 you Karen. You'll figure out this new wrinkle but it sucks that you have to at all. Yes, a cure...please!
ReplyDeleteIve been away for so long - Ive missed almost all blog posts by all my favorite bloggers for the last month almost. Im sorry your lows are being stealthy. I hope the new adjustments and plans keep you safe. Hugs.
ReplyDeleteUgh I hated reading this ... not only because it was relatable, but because I hate it for YOU. :/ Hang in there, my friend ..... adjust your basals and keep your GlucoLift nearby :) And I pray every single day that we WILL have that cure someday -- preferably in our lifetimes.
ReplyDeleteKaren, I was recently dx'd a month ago with type 1. I am 29 years old. The lows you are experiencing are what I have gone through. The severe trembling, not know what the heck is going on and the sweating, my goodness the sweating! Anyways, I feel your pain and want you to know there's others out there who have similar symptoms (although this is obvious, I know for myself it's nice to see it or hear it). Sending you best wishes. Together, we will find a cure.
ReplyDeleteI think you nailed it when you say diabetes changed the rules. That is the hardest thing for me, when I feel like I know what's up, then BAM something changes. It doesn't help that lows cripple the one thing we need to get out of it safely, our brain.
ReplyDelete