Fear - highs and lows

Type 1 and LADA
#1

So, I've noticed recently on TuD there have been posts from pumpers going DKA, in ICU for nearly 3 days. Someone posting about 'dead in bed'; very low blood sugar and unconscious (a new pumper). We've read Bret Michaels going down and out on stage the other night, needing to be hospitalized and this is just stuff recently posted on this site. I read this, I know it's a reality...but how does one get past the fear in all this? It's stuff like this that makes me never want to go on a pump. How do you all manage the fear, if any, with all this.

Thanks!

#2

Test, test, test, and Xanax low dose

#3

Check, check, check, or get a CGM; like everything else with D, adapt, evaluate, re-adapt, re-evaluate.

#4

My pump and CGM have kept me out of the Hospital...and alive!!!

I suffered many Hypos on MDI using NPH and later Lantus, night after night after night I would go low..time release insulin was going to kill me.......I spent many years, up most of the night worrying about low BG. Going on a pump, and getting my basal insulin requirements under control has reduced my nighttime lows to zero, I have had some high BG from failed infusion sits and some errors I have made but nothing that's going to kill me and I don't think my pump is going to malfunction and kill me. I have had many low blood sugars during the day but if your on a intensive insulin regiment with a target that is only 30 points from a low, it's going to happen. We just need to stay alert, test or BG on a regular schedule, and be prepared to treat our lows effectively.

My legacy is not going to be defined buy Diabetes.....

#5

with the pump most of my highs and lows are from bolusing

#6

I remember when I was in college seeing "Steel Magnolias" with my girlfriend. (Obviously a chick flick, I would never admit to having gone see that movie by myself!). I was scared silly from the hypo scene and the ending.

But of course I had only been a diabetic for less than a decade at that time.

Since then I've been in ER a couple times with extreme hypos and survived just fine. Don't worry so much anymore.

There is a nice chapter in one of Malcolm Gladwell's books about "remote misses". During the Blitz on London in WW2, the Nazis assumed that daily bombing of a major city would completely demoralize the British people. Indeed bombs were succesfully being dropped and blowing up houses and killing people. Yet those who survived, maybe with some scuffs and singes, just went on living through it for the whole duration and somehow the vast majority weren't demoralized, and in fact Gladwell goes on to claim that the fact that they had lived through extended campaigns gave them the courage to go on through the rest of the war. I think diabetics go through the same thing. How many daily shots and bg tests? How many hypos and unexplained high bg's and lab tests and eye exams have we gone through? Huge numbers! Every hypo was a remote miss, yet we survived. Every time we got the flu or infusion set messed up and we went into DKA, we survived. Here we are, decades later, some of us more than half a century later, in many cases having outlived the docs who told us that we would die before we got old.

#7

I decided that I wasn't going to let fear hinder me from doing anything I truly wanted to do. I have a few conditions that could paralyze me with fear on a daily basis or even waste an entire lifetime to being afraid—a severe visual impairment, severe allergies, Type 1 diabetes—but I refuse to let that happen. Instead I am proactive, I am careful, I am prepared, I double-check a lot, and I never take anything for granted.

#8

It really doesn’t slow me down much or play that large of a role in my life, I do not significant hypos or runaway highs. I just watch what I eat and keep my insulin requirements as low as I reasonably can, there’s not much for me to be afraid of

#9

I should add that it's not that I never get scared. I do. But when I do, I do something like post to a forum, or write a journal entry or a blog post, because it helps me get my emotions out and feel better. If it's really scary and I feel like I really did come perilously close to dying, then I might feel scared for a few days. But after that, I move on.

#10

yeah...thanks, jen. i've had some 30's and thought..OK..this is it, just totally out of it. i've had some high highs and felt so sick - nauseous, thinkin' I'm going to go DKA. ugh! I try not to let the fear get to me...but then I read stuff on here and know, almost feel, like a really bad one, either way is going to happen. DKA less likely..but ugh! thanks for your reply. you're a fighter with all you have to manage. :)

#11

Yeah, extreme highs and lows feel terrible. But, even if you do need the hospital for a high or low, remember that these things don't kill most people even when they are serious. I think one of the most important things is to not be afraid to get medical assistance if you feel like a situation might be getting out of control—something I am extremely bad at in spite of all my advanced preparedness.

#12

I've got a specific answer and a general one. The specific one: Shortly after I started insulin and neither I nor my doctor had a clue (he was treating me as Type 2), I basically had way too much insulin and had a low that caused me to lose consciousness. I came out of it, realized what happened and was able to treat myself, though barely. It was like moving through molasses to test and treat, but I did it. My liver apparently chimed in with some glucose to wake me up and I survived. But it scared me. So I worked on learning more and nothing like that has happened since (it was in 2009). But the good thing to come out of it was I knew that even with a bad miscalculation like that, I survived. I've since had lows (though not like that) and I've handled them. Not fun, but not the end of the world. Ditto highs. I correct and move on or come on here for help in figuring something out.

The more general answer: I'm frequently aware how lucky I am to not be diagnosed until age 58. First of all, obviously is not having to deal with D through all those years of a busy life. But it's more than that. By the time you get into your 50s, unless you have lived a very sheltered life, you have been through a lot. And you have not only survived, but, hopefully grown from the things you went through. So you gain a belief that you can deal with anything - not that it will be easy or without obstacles, but that you can and will do what you need to do to get through it.

Some people are just naturally pretty fearless and take life in their stride. I've never been one of those people, but for that very reason I know the dangers of letting myself give in to fears. If I thought of all the things that could happen, and do happen to people on a daily basis, I'd literally be paralyzed with fear. Not how I want to live. So I look at the possible dangers and do what I can to prevent them. Sometimes. I have also discovered that you can't prevent every "what if" because you'd a very dull life, or one where you spent all your time "preventing" instead of living.

There have been times in my life when I was too fragile to deal with all the dangers and fears. And there are still short periods where I get overwhelmed and need to reduce the stress. At such times I've been known to limit reading about certain things, set aside some issues for later, stop watching the news, tell people "I don't want to hear it". I've never had to (or wanted to) stop reading TuD posts, but there have been times I see threads I don't want or need to read.I have trains of thought I realize are unproductive, leading not to solutions but dwelling on problems, so I cut them off. I always limit drama and negativity around me and have had to cut some long time friends out of my life to do so. Bottom line? I do what I do for me to stay positive and move forward without a lot of time spent in fear or regret.

#13

I don't want to go on a pump for many reasons, I'm not sure which is the main reason, the pain factor etc. or the possible malfunction/blunder factor which could cause dka or overdose. Yes it's rare, the pump malfunctions, but that doesn't matter if it happens to you and your family. For me, yes, the fear of that is enough to say no, as well as reading accounts here and elsewhere of pump caused dka. I went through a horrible dka, with a dvt, damage to my eyes and multiple other complications and I don't ever want to go through that again. I consider myself lucky to have survived it all. I do envy people who get better control and more freedom with a pump though, I would really love to be able to adjust my basal because I think that would help stop a lot of my spikes at least. However I don't know if I have the mindset for a pump and the constant monitoring it would take even if I could tolerate it and the cgm and If I felt safe with it. I agree that some zanax/valium may help you if you feel really anxious about this. And I hope that it works well for you too.

#14

Not that I'm pushing pumps on anyone for whom they aren't right, but since it's a part of this topic:

Some reasons why I feel safer on my pump than I did on MDI: My basal on MDI was an imperfect science at best and there often wasn't any relationship between the number I went to sleep at and the number I woke up at. Now it is much more steady. With long-acting you're kind of bought in to the dose, so if you take too much you can't do anything about it for 12-24 hours. I never actually made the switch of fast acting instead of long acting but almost did and that's pretty scary! As for DKA I know that we are more at risk on pumps and I don't have any official stats but it seems that most cases of DKA happen at diagnosis. Ones that happen later often occur when a person is ill and/or neglects insulin dosing or doesn't test often enough, or stays high for extended periods (apologies to anyone for whom this is not the case). I test often and correct promptly and change my set if any suspected problem. (far less likely with metal sets!). Those of you with CGMs have added safeguards against dangerous or prolonged highs that lead to DKA.

I also like that I can't forget to take my when I leave the house!

I also have observed that people who don't do their own dose tweaking are more nervous about pumps. I understand; I'm a bit of a control freak! I wouldn't want some complex device that I didn't program myself controlling my insulin!
#15

Pumps don't cause DKA or Hypos....people do. I'm pretty sure Bret does not wear a pump. My own pump use has lessened the highs and lows I used to live with. I check my bg often so the chance of DKA or a killer hypo are unlikely. I am more afraid of running into a cougar or getting pooped on from a bird on my hikes; I keep my eyes peeled for that looming bus when I am walking in the city; and I wash my hands a lot to avoid illness. I have less fear regarding my diabetes with my pump on my side!

#16

well, no...all kinds of things can happen with a pump that has nothing to do with the person's ability to manage it, bent cannulas, infusion sites/sets not working, etc...

#17

He doesn't and I was shocked to read that he uses, I think it was, NPH! With his financial resources! I also didn't see any details about that hypo and wonder if it was part hypo and part hype! (A "health emergency" or whatever they called it for a rock star and about to give a concert could be a low of 58 and feeling too out of it to rock!)

#18

Yes, and to have success with a pump a person needs to know how to resolve pump issues, and be willing to test often. A pump is amazing for those who can manage one. I am a huge fan of mine, and enjoy the ability to micro dose, and change things when needed without much hassle. As said, I had more issues with injections - but that was a long time ago.

#19

Bad sites do happen, but as long as you are on top of your diabetes, they won't cause DKA unless there is also some complicating factor (like being sick). I am like the queen of bad sites and I've never gone into DKA. With a pump if you have a bad site it takes a few hours for ketones to start—it's not instantaneous—and it would take a few more hours of not responding to the high BG and ketones for actual DKA to develop (I'd guess six hours in total for me). So as long as you're testing every few hours throughout the day (which most here do, anyway) and responding promptly to highs, the chances of developing DKA are low. Plus, people on MDI have a risk of developing DKA if they forget a basal shot or get sick and can't adjust their insulin fast enough.

#20

Not all rock stars are rich! I imagine Bret's medical bills are taking a chunk out of his resources. Diabetic rock stars probably suffer from the difficult life on the road, even the sober ones. I am a huge fan of Diabetic Rock Stars!! How about Keith Morris frontman for OFF (Black Flag, Circle Jerks), he is amazing and though not as well known as Bret he has had some health scares as well - he is also diabetic. Still going strong and mean as beep but certainly not financially well to do. Thank g'ness for friends and fans!