The only diabetic forum I read, had a topic in one of the forums titled Someone who has the illness for so long, how do you stay positive and motivated to keep going
. Instead of answering on the forum, I decided to do a post on my blog because I don't hold back when I talk about diabetes. I can be blunt and to the point. I don't hold back.
So what do I do to keep myself from getting depressed, or having what is generally referred to as diabetic burnout, over being a juvenile onset diabetic for over 52 years. Or how do I keep myself upbeat while having to deal with the ups and downs of living with juvenile onset diabetes, is a better way to put it.
I think the first reason is very simple. It's because I was only 5 when I was diagnosed. So I have lived with this disease or chronic condition most of my life. I don't know life without diabetics.
Secondly is because my parents didn't care about me. Basically, they hoped I would die because of my having diabetes. I attended two one week sessions of a diabetic camp where I learned how to give my injections by myself and how to fill up my syringe. This was ALL I learned. After the second session, at the age of 9, I was told all care and control of my diabetics was up to me. I was told I could no longer ask them for help with filling up my syringe or giving my injection. I couldn't ask for help with anything to do with my diabetes care, I had to do it by myself.
I had no lessons in how many calories I was supposed to eat. How much vegetables, fruits, starches, fats, dairy products, and proteins I was supposed to eat at every meal. They didn't tell me how to figure out how much insulin I needed to have when my urine tests were high and/or I wanted to eat a piece of cake. I had to figure this out all by myself. I wasn't allowed to see my diabetic doctor. The only doctor I ever saw was my family physician. Several times he told my parents I should see my Endocrinologist, but that never happened.
I know this because my childhood records were sent to my doctor as an adult. When he retired, he asked me if I wanted my records. So I got them. I got to see what was in my doctor records. I was shocked to see just how many times my doctor suggested that I should go see my endocrinologist. I never went to see him as a teenager.
I always wondered why my parents kept buying my diabetic supplies when I knew they wanted me to die. It took me a while, but I did figure it out. They couldn't do anything to me outright or the town would wonder what happened to me. But if I died due to complications from diabetics, they could claim ignorance. They could claim that the horrible disease that their poor daughter had killed her. Excuse me while I go vomit.
Cancer to me is so much harder than being a juvenile onset diabetic. At least with juvenile onset diabetics, you have insulin to help you keep your blood sugar levels where they belong. You have glucose meters so you can check your levels whenever you want to. With cancer, a lot of the time you don't have any idea you have it. All of a sudden, boom. You need chemotherapy, radiation and many times a slew of medications. Or in my case a 10 1/2 hour surgery that included a heated chemotherapy. I was never sick. I went in for a hysterectomy and they discovered the cancer. I had two abdominal surgeries in two months. That was much worse than anything I'd ever gone through with my diabetes.
I also don't like people who say that diabetes is a disability. NO IT IS NOT. It is a disease or a chronic condition, but not a disability. I want to scream and pound my fists into my monitor whenever I read where someone says their diabetes is a disability. How in the world are we disabled?
If you mean when we have insulin reactions, or as every other diabetic calls a hypo. Maybe you're having too many insulin reactions and your control sucks. If you're a new diabetic, or a teen who has just been given total control you get a pass. Insulin reactions does not mean you're disabled. A juvenile onset diabetic is not disabled. Nor is anyone with type 2 diabetes. You either have a disease or a chronic condition. You pick what you want to call it, but not a disability.
I really hate about having juvenile onset diabetes are the stupid CGM's. See I'm one of several people who have problems with them. Granted the Dexcom G4/G5 is better than the G4 was. But even so, it doesn't match my Contour Next meter very often. I'm a person who believes that the CGM and their meter should be within a 10% +/- all the time. The 20% +/- that Dexcom says is acceptable is not to me.
I hate the beeping, that is what I hate the most. That is probably the thing about being a diabetic that bothers me the most. If I had my way, I'd say fuck the CGM. I really don't see the need for it. I don't like wearing it. The CGM, either on my pump or the receiver from the Dexcom, can say I'm 68 when I'm really 95. Or it'll tell me I'm 55 when I'm actually 150.
The reason I'm wearing it is because for some reason my endo and husband think I should. They both know that it isn't accurate on me, but they wants me to wear it. Both of them believe I'm unaware of my falling blood sugars. No I'm fully aware of when they go low WHEN I'M AWAKE. The problem with me is, if I'm doing something, I want to finish it before I take care of my blood sugar. I'm been this way since my diagnosis, and I don't think it's going to change. And if I go low while sleeping, I go low with no warning other than the CGM. I've never been able to tell that I'm low while asleep, never since my diagnosis at the age of 5. How others can do it is a mystery to me.
I have never had diabetic burn out. I have a difficult time understanding the concept. I don't understand why anyone would become depressed simply because they have diabetes. To me it simply makes no sense. Diabetes isn't a death sentence. You can survive living with it.