Frustrated Rant

I’ve been T1 for 18 years. For the last 10 or so I have also been struggling with an anxiety problem, a lot of which is a severe fear of low bg. This affects me to the point that I consistently under count my carbs, and take less humalog than I know I should, or sometimes skip my bg correction altogether. My average so far for September is at 416. Last A1c was 13.4. These numbers are horrible, I am well aware of that, and all of the complications to go along with this down the road. I feel like when I am feeling less anxious and could push my bg down some, I am not making enough effort to do so, mainly out of the fear of “what if”…like, what if I do feel anxious when I see a lower reading later on. To throw another wrench in the works, low bg and anxiety mirror physical symptoms very closely. I’ve also been told high sugars can cause anxiety or anxious feelings. To an extent I have noticed this, and a decrease to a degree in the level of anxiety I am feeling when levels are not as high. In the past, I’ve seen many Dr’s for this, endo’s, psychiatrists, therapists. I spent 4 months in a behavioral hospital where all the medical side of things was controlled for me. That was in 2004, and I was under control during that time. However coming out of there, things were quickly back to where they started. I’m currently on meds for the anxiety, some days go better than others with managing that. Its been suggested that I give a few day hospital stay in a medical hospital a try to get back under control, and go from there, but I feel like this will just turn out like the last stay did. I have echoed this concern and not gotten much of a response. My nurse practitioner at the endo’s office would like me to try a cgm, with the thinking that if I have that easy access to bg readings and the ability to set low threshold alarms, I might be more comfortable letting my sugars run lower. I worry it will be too much information for me and cause me more issues. Most recently, between not feeling well due to high sugars, and anxiety spilling over into other parts of life, I have missed a lot of work. I guess after rereading this, what I’ve written is all over the place and a mess. Anyway, I just needed to vent a bit, sorry its so long and such a mess…but that’s my story.

You are very brave for coming her to talk about this. Unfortunately, all the details of diabetes, every bite we eat, every decision we have to make about blood sugars, these things can really cause us problems. You are not alone. There are others here that struggle with similar issues, whether it be fear of low blood sugars or high blood sugars. These things can take over your life driving you to do things that you know in your heart are not in your best interest. You say you have seen therapists. Have you seen any therapists that specialize in diabetes as a chronic illness or cognitive behavioral therapy? I think there are people here that would like to help you, but you have already tried a fair number of things. Until you get your thinking in order (what you call anxiety), you won’t get your blood sugar under control.

Dear Ryry, A hospital stay can be useful if you combine it with learning about & using CGM. Maybe at the hospital stay they can ensure you have memorized certain set food combinations/carb numbers and with the CGM you can, with them, get to the “right” setting for insulin that can get you moving in the right direction.
Do you need HUGS? Do you need a group sticking with you at meals? Get a good professional team working for you.
Right now we’re all pulling for you!
Get the kind of combination therapy that will set you up to achieve normal blood sugars! It goes slowly at first, but it’s REWARDING.

ARRRGGGG!!! Sorry to hear of your struggles. I haven’t been able to talk to many other diabetics before; its nice to see that I’m not the only one with internal issues that have a severe and dramatic effects on life. I commend you for your bravery and implore you to keep up the fight; you can get to where you need to be. High ones are just as dangerous as low ones; low sugars seem worse because you feel the effects right now, but you can also fix the problem of a low BG right now. High BGs are a long term issue with slow recourse and long term consequences. Good luck, I hope you find the answer to your issues soon.

Part 2 (aka More of the Same):
So here we are about 8 months later. BG readings still looking just as ugly as before, if not worse. I finally broke down Thursday and put a call into the CDE at my endo's office looking for more help and admitting to her that I think I am probably at the point of needing some kind of outside intervention such as possibly giving in to her previous suggestion that I should be hospitalized. She is supposed to be calling me back Monday after she shuffles some appointments and finds a hole to fit me in to see her before making any decisions. As I pointed out, my readings have slowly been creeping up, and I'm really starting to feel this. At this point, I've managed to get myself into such a mess of not taking any of my meds the way I'm supposed to be, be it thyroid, vitamins, or anything else. Last I posted I mentioned being well aware of all of the complications that go with what I am doing, but now, feeling how I do physically every day (sick, tired, unmotivated, etc), I guess it has sort of made it click that the path I am headed down is going to kill me sooner rather than later, and quite frankly, I'm not ready for that at 25 years old. I really haven't been taking any insulin for a correction factor, and she was able to give me some idea where I can start with that and some changes with my Lantus. So far, when I have stuck with it, my readings have looked much better (not good, but for where I've been running, better).

I'm still fighting with the anxiety and depression as well. I'm also now unemployed, and am finding it very difficult to keep to any kind of medication schedule not having any other real structure to my day, even with diligent logging of when I take everything from meds to food.

Again, I reread, find my thoughts all over the place, and apologize for the length. I guess I just wanted to update this, find some encouragement, and perhaps this is my admission that its time I really buckle down and make some positive changes for me.

Thanks for taking the time to read more of my ramblings!

I haven't had much luck finding a therapist who specializes in diabetes, though I have worked extensively with cognitive behavior therapy.

Hate to ask, but where are you? I have had great success with therapy with those who are diabetic. The therapists who are diabetic and really understand chronic disease folks are the very best.

I found her through the nurses at the local diabetes care center at the local hospital. Call them. Ask for a true specialist and be patient. I did not think it helped at all at first, but it did--just took me time to digest it.

Who lets you stay at a hospital anymore? Not where I live, for sure!

I'm on the east coast. Philly, PA area. In the past, folks at my endo office haven't been much help in finding anyone if that is what you mean when you say diabetes care center.

I've had T1 for 18 years also, My A1C has been between 11 and 9.6 for 8+ years. 6 months ago I developed a thyroid problem, and 4 months ago I found out I have the earliest stage of retinopathy. Complications are not fun.. especially only being 20.

I would suggest another hospital stay, you CAN do this! It took the retinopathy for me to realize that this is not going to go away, and I regret choosing to ignore my diabetes for all of these years. Good luck, you seem to be headed on the right track!

Vent all u need here. I really have no advice for u but to let u know that I'm still surviving after 38 years with Type 1 and u can too!

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.

Until later...

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?