Have you considered finding or forming a support group? It provides an opportunity to speak with other T1s, share common concerns, etc. It might help.
Good idea there Chris
Why don't u get a CGM or an alert dog so u will have something to tell if u are low even in ur sleep...
Hi Ryan, I too admire your courage and want you to know that you're not alone and you *can* do this.
I too struggle with a fear of lows, although not nearly to the extent of what you describe. My fear is mainly based on losing the ability to feel the physical symptoms of lows approaching. That's why I began to use a cgm about 8 months ago. For me, the cgm is key.
This is just my personal opinion based on my own experience, but I would suggest you get treatment first and perhaps eventually get a cgm as you get stronger from treatment, especially since you have physical symptoms of lows so you do feel them coming. The cgm shows all trending so any trending downward, even if you're still above range, is likely to trigger panic if you have a strong fear of lows.
Wishing you luck on finding the help that you're seeking. Please let us know how you're doing. :)
I would be surprised if there is a type 1 out there who hasn't felt extremely frustrated with things at least at one point in their journey. I used to get that way too, at least in the beginning.
Thanks to all for the support. I was able to get an appointment for day after tomorrow with my CDE. Will be sure to post what comes of that.
HI Ryryguy392. I certainly know what you are going through. I know it isn't easy. I guess i'm an all or nothing personality. I was were you are in February. Actually. I was 14.2 A1C. I'd let it go for such a long time. I knew that it didn't help me at all to let my numbers go so high either. I got tired of it. I used to hide my numbers, make up reasons for not going to the doc, anything and everything to keep folks from pestering me about my numbers. And, you know what? i got tired of doing it. Tired of hiding and lying to myself about it. I wanted to be well. So I did it cold turkey. I stopped waiting for someone to help and helped myself. I went in to the endo and said, i want a pump and a CGM. They almost laughed in my face. I know they snickered 'cause i heard them. It was like, "he'll never do it." I had to give two months worth of BG readings a minimum of four times a day for 2 months. BUt I did it. Two full months and didnt miss one day of at least 4 tests. From 0 to minimum of 4, on average I did six. Before that time, i would test maybe once every week, Maybe! I was determined to change my life around. I was sad and depressed and ashamed and felt all the negative stuff that comes with being chronically sick, not taking good care and just not feeling good about myself. Yeah, i have issues.. he he.. Anyway, i didn't let them or anyone else get to me. I turned myself around. I knew that no one else could do it for me. You can do it to. Just make up your mind. Do it. Oh, I got my pump and CGM in April. The endo was shocked! I mean literally shocked. I went in last week again, and my A1c is 6.2. The best its been in years. That doesn't mean every day was perfect. I had a few 300s and some lows also. In fact, I've had more lows than i have ever had. But to be honest, they aren't that bad. I was scared of them too. Very. I've learned to use the CGm to make sure I don't get there and when I do, I correct. Most often, I over correct. But I feel better physically and mentally for making that change.I decided that i'd have to do it now. SO i thin to myself, I'm doing it today. Right now. This minute. There is no perfect time. If that's what you're waiting for, it'll never happen. Yeah, I'm still sick, but I'm more myself than I've been in a long time. I don't mean to rant. Just want you to know you arent the only one out there. You aren't alone. Finding a community is a great step. Can't tell you how many folks on here have helped me stay positive without their even knowing it. I can't tell you how many people cared abut me and wanted to help and i didn't let them becuase I felt as you do now. You can do it. Please do. I'm cheering for you, man. I really am!
I can't wait to hear about all the good things coming your way!
So I started jotting down some notes for myself for Wednesday's appointment. Man what a wake up call that is, actually seeing everything your NOT doing that you know you're supposed to be doing all laid out in front of you. I'm not just talking logging sugars either, I've been doing that most of the month trying to get a good idea of where to start chipping away at this thing. I'm also talking being non-compliant (for lack of a better term) with my thyroid med, med to protect my poor heavily abused kidneys, keeping on top of my vitamin d deficiency, among other things. So much of this is tied in some way or another to the rest its almost overwhelming to look at it all and figure out where to start. Despite all of that, I look at where I am today and the direction this past year has gone, and I know without a doubt this HAS to change. I really have let this control so much of my life and quite frankly I am tired of doing so. Laying out my goals, I guess right now, they'd be: 1-Regain some sense of control, 2-Get back to where I feel I can work again without issues, 3-Be able to actually get out of the house when I want to, not just on the occasions that I'm feeling good enough to. I think that's a fair start, and with that I say D, I think I'm going to take the wheel and drive for a while if you don't mind.
Reading what some others here have been through that is so similar, it is very encouraging, and I'd like to see some more stories of turning ourselves around after wandering so far off course. I hope this thread is helpful not only to me, but for others who are fighting this now, and in the future. The fight is long and tiresome, and it does sometimes feel so isolating when no one else in your life really understands how crummy your feeling when you tell them your going to pass on something, be it food, an activity, or otherwise, because of how bad your feeling that day. That is what I think truly makes this group great, just having somewhere to go and be understood, to fit in, and just to know your not alone in this.
I'll leave it at that, and maybe, with some egging on and a whole lot of encouragement, I'll post a couple days worth of logsheets tomorrow if anyone cares to see just how rough they really look.
That's great that you are posting your challenges in such detail and revisting an old thread, to kind of lay out the long-term challenge.
The thing that helped me the most was to find things besides diabetes to get interested in as that sort of forced me to think "how can I make sure diabetes won't get in the way of ______" whatever ____ is? It's easy to get wrapped up in one blood sugar to the next but, if you can find something else it might be a useful "anchor" to use to help pull yourself out of it?
Funny you use the term anchor, as one thing I am looking forward to is finishing putting a new floor and interior in my boat an getting that out on the water.
I've been reading The Book of Better the past couple days. The author is doing a video chat here soon. His basic message is about making small, gradual improvements. Even if your health is not 50% better immediately, even 10% or 2% is an improvement. Small changes add up over time.
Had an appointment today and got my lab results. Nothing too shocking, I had a pretty good idea how a lot of things were going. Thyroid is wayyyy off due to my not having been taking the med. Got the dose adjusted and started back up on that. Kidney function was fine (I'm really thankful I haven't seen any issues with them to this point). Triglycerides were high, I'm told probably due to the high sugars. To my surprise, my A1C is actually down from 13.4 a little over a year ago to 12.5 today. However with that, my fructosamine level is super high at over 1000. Range should be between 190-270. She told me she has never seen one come up so high. So my question for some who have had not so great control, if your willing to share, would be how high have you seen this? Last but not least, my vitamin D deficiency seems to be mostly resolved at this point.
We agreed on a few changes insulin wise for me to try to make and stick to. Nothing too drastic on the Humalog at this point, but adding another unit of Lantus in the morning and at night, trying it for a week, and then adding another unit again at night if I don't see any sugars below 300 this week.
So, I now have some idea what to be trying for a correction factor for the Humalog, as well as some other goals for sticking to changes in the Lantus and remembering my thyroid med. She told me my thyroid is so far off she doesn't know how I have the energy to put one foot in front of the other at this point. I'm hoping if I can get my thyroid on the right track, maybe the increased energy will equate to at least a small boost in my motivation to stick to this and make more progress.
I know going forward I'm going to struggle when I slip up, as I'm usually really hard on myself and can tend to be pretty negative when things aren't going great. So, I've got to work on that and the motivation factor going forward.