Really need some help

I have had type 1 for 28 years, which is not that long compared to some, but it has damaged my nerves to the point that I can barely function. I have lived in small towns my whole life, but have traveled to Phoenix plenty of times to see doctors. For the last five years since I was evaluated by Mayo Clinic none of the doctors know how to help me, meanwhile I am wasting away. I have recently had a near death experience in the ER when my heart rate was around 250 and they had to shock me to slow it down, but only after pumping me full of drugs. I am really scared of what might happen due to the damage to the autonomic nerves that control my heart and blood pressure. My friends and family are dealing with this well at all, I feel so alone. I have never suffered so much in my life as I have the past couple of months. No one around me can handle what’s happening let alone listening to me talk about how it makes me feel. I even went to a counselor last week and left the office feeling like a total jerk, I was informed that I’m mad at the world because of what is happening to me…really, that’s quite a news flash. That is a big part of why I went in the first place, to get help dealing with my anger due to this situation. She told me that when I feel angry to talk to someone, but I have quite a hard time calling someone and telling them that I just want to die sometimes, that I’m terrified of being stuck in this body and not being able to function, that I am having to give up my independence due to this disease. I know that most of the people I am close to feel like I am a “downer”, but I don’t know how to pretend like I am not suffering terribly. I know it could be worse, I try so hard to be thankful that it’s not, but that is a daily battle. I’m not trying to feel sorry for myself, but I don’t know how to do this. I was diagnosed at 6 years old and the thing that I remember the most over the course of my diabetes is that I was probably going to get a leg cut off and die from this, which is weird because I have always been good at focusing on the positive things in life. I have contemplated death since I can remember, but I could not grasp the concept of the suffering that would come first. I feel that my health will probably be the end of my marriage, it’s just too much of a strain on life. I am to the point that I can barely stand up without passing out and certainly cannot go for a walk or get exercise and that is not something he can handle. I refuse to stop working even though I’m risking some dangerous consequences so weekends pretty much consist of sitting on the couch staring at the tv, sometimes I don’t even go outside for days, but no one seems to care enough to offer to do something with me. Please help.

Jana, I’ve had T1 for 32 years and trust me, you have had it for a very long time. As you know, this disease sucks because over time it damages blood vessels great and small, and those tiny ones feed pretty much everything in your body, so you can envision why our bodies get damaged over the years. But as they say, that’s in the past, and all you can do is move forward. Are you close enough to PHX that you can see other specialists, such as a neurologist? Even the smaller cities like Prescott/Yuma/Flag have neurologists you could see for 2nd opinions.

It’s great that you reached out for counseling, but frankly, you need a different counselor. Not just someone who will chat with you. Try calling in advance to ask what experience they have with patients dealing with chronic disease. Use that phrase specifically, because any counselor worth their salt that deals with this will be able to speak intelligently about it, and not just write it off as something in your head. You are severely depressed, possibly suicidal, and that state is affecting all of the areas of your life. I am concerned because you seem to hint at not having the will to go on, so you urgently need help, and probably medication to help stabilize your thought patterns, and it’s probably causing panic attacks too. You will likely require not just a basic counselor, but also a psychiatrist. There will be an investment of time, money and probably frustration as they try different meds and dosages with you. But some of these same meds can even help with neuropathy. Your husband has probably found ways to cope with this, but if he’s still around, that means he still loves you and wants to be with you. So take that to the bank. He will be encouraged just to know you are seeking help.

The good thing about AZ is that it’s usually sunny. Even just a few minutes a day in the sunshine gets sun rays into your eyeballs, which is thought to help grow serotonin receptors that can ease depression. Mild exercise, even just twisting around in a chair, helps with depression too. So although you want to stay inside, force yourself to get 15-20 minutes outside every day, even if you just sit there with a book or listen to music. You can use sunscreen, but the important thing is to get the spectrum of rays in your eyesight.

You’re not a jerk, or a loser, or unreasonably hostile. You are depressed due to the ravages of this disease and the toll on your body, and you are not alone in this. It’s important that you start to move to a place of thinking of yourself as being of worth, not as a burden to others, or a waste of space. You have reached out to us here, and that is an important first step that you should take pride in. Life can get better, and others can help you, so reach out and get things started. And check in with us so we can know how you’re doing.

Hi Jana, I was diagnosed when I was 11 and this is my 28th year with T1DM as well. I can relate every words you stated there, it is not easy to live with T1DM and I don’t think it’s going to get any easier for us as time goes. I’d offer to listen to you, to be your mental support if you like. :slight_smile: