There are many stories here and elsewhere of those who have "given-up", quite literally people who quit being diabetics or even acknowledging they have diabetes at all.
Teens, 20 something's, beginners and experienced folks alike.
They don't care about insulin coverage, picking random numbers out of thin air...
Eat anything and everything and do not cover for it...
People who go for days without ever taking insulin at all,
People who test not at all or very rarely despite taking injectable insulin
All kinds of examples...
It is a slow and painful process what I call dia-cide; in effect passive "suicide" by diabetes.
My question, how would you reach someone in that kind of bad head space?
If you were watching a fellow diabetic spiral into a certain "crash and burn" mode,
Your child, your partner, someone that you cared about, a young person you knew/heard of...
What a tough situation/question to analyze. I like to think that folks who care about themselves are those with a good self-image; they find value in judicious self-care regardless of whether that care includes a chronic disease. Which makes me think that someone who is not taking care is burdened ā not by the illness but something entirely unrelated, something that deeply affects their sense of self-worth.
I was in exactly that head space until June of this year, but recall thinking that if I gave up entirely it meant letting the bstrds win. And I decided I just couldnāt let that happen.
I just got through begging my sister to test herselfā¦she was over a course of months complaining about one thing or another and it all sounded like diabetes. I asked when she last tested or took her meds? She shined me onā¦so about 3 weeks ago I begged her to please get a A1C, since there OTC now. She went home BG tested herself and she was at 400. I didnāt have to say much more after that, her BG said it all.
About twenty years ago an older relative with diabetes (2nd cousin twice removed or something) used to hide candy bars all over her apartment. She lived alone and her son would come over everyday to search. Best one I remember: in the glass shade of a ceiling lamp. He saw its shadow when he turned the light on one night. He and his wife begged and pleaded with her, to no avail. She lost a leg and eventually died. This was beyond giving up; this was a woman on self-destruct.
A diabetes educator told me I had dia-burnout. I guess my eyes glazed over after hearing about checking my feet for the 450th time. I have never not taken insulin, but I certainly have not taken care of myself for long periods of time. Friends cautioning me just made me crankier.
The one comment that jolted me: What do you love more: your partner or a donut? That got me. I realized that each time I chose to eat a donut, I was choosing less time with, and more heartache for, the ones I love. Itās not just about me and my health.
Alice, The one comment that jolted me: What do you love more: your partner or a doughnut? That got me. I realized that each time I chose to eat a doughnut, I was choosing less time with, and more heartache for, the ones I love. Itās not just about me and my health.
You just gave me a āAha momentā as corny as that sounds. Thank You!
My mother has done the T2 thing for 25 years, and I have basically managed her.
These were the milestones or else (wakeup calls along the way).
Control yourself in the first 10 years. The rest of your life will depend on what you did in those first 10 years.
With diabetes, you just get what diseases you would have got anyway. Diabetes just brings them earlier (heart, kidney,e ye disease etc).
If you want to see your grandkids grow up, manage your blood glucose.
Watch portion size
watch what you eat.
Exercise a little.
She is doing fine 25 years later!!
Why am I on this bandwagon?
I studied at University, bit by bit the human body, what diabetes does to each part.
So when my mother was diagnosed it hit me.
Everyday, a little elevated blood sugar, will cause all those diabetes effects!!
To recap:
Control yourself in the first 10 years. The rest of your life will depend on what you did in those first 10 years.
With diabetes, you just get what diseases you would have got anyway. Diabetes just brings them earlier (heart, kidney,e ye disease etc).
If you want to see your grandkids grow up, manage your blood glucose.
Watch portion size
watch what you eat.
Exercise a little.
Its hard, but so is life.
On the upside, thereās so much that is good, fun and great to live a long healthy life.
Enjoy !!!
!!!
I am in burnout right now. Have been for the past six months or so. (Hence my last A1c of 8.5 ā¦ one before that was 7.1, and before that 6.6).
Iām WAY better than I was about two months ago and hence my next A1c should be back in the low 7s, but Iām still not exercising at all and not eating all that well, both of which I have to do if I want to hit the high 6s (havenāt been able to get any lower than that). I have started actually counting carbs properly again, though ā¦
That quote really made me stop and think. Iām going to repeat it whenever I want to eat crap or am too lazy to exercise. Thank you!
For nearly a decade I did not take care of my d. When I was a teenager I stopped checking my bgs, sometimes going months w/o checking at a time. I would eat what I wanted. I would drink what I wanted. I would skip shots, taking only what I needed to keep me alive for the day, usually just long acting. When I did cover it would be a random dose I pulled out of thin air. At my worst I would just stop taking my insulin completely. I was rushed to the er several times a year with severe DKA, sometime resulting in coma. If I was feeling really sick I would actually od on insulin, filling and refilling a syringe 3 or 4 times and just laying down, letting it do its thing, sometimes taking a couple of sleeping pills so I wouldnāt have to feel the low. I was this way off and on since I was 14 until I was 22.Of course, there were other issues that lowered my self esteem, but I hated the d, and I hated my body and self for having it. I wanted to end the burden it was on me, and end me for being a burden on my family and friends.
The things that helped me the most that I would suggest to someone that feels the way I felt:
First, I found a network of people who could relate to everything I felt. First, through blogs, others and then my own, and then through Tudiabetes. Growing up, I didnāt meet many other diabetics, especially t1s, so I felt very alone in my struggle. You have to be able to share with someone who gets it in order to get through the hard times, I think.
Second, I volunteered. Iāve heard the theory of help others to help yourself, and since I was unemployed at the time, I decided to volunteer at a VA hospital on a Medical/ Surgery floor. The majority of patients there are T2 military veterans with serious diabetic complications. Like most of us, Iād heard the long list of complications from the docs every trip to the office, but this was the first time I saw these things with my own eyes. I was able to help them by empathizing with them and listening to them. It was a real wake up call.
i think itās all about finding your inner strength and reaching out to somebody who can offer a help (like a therapist or doc, somebody who can help you visualize), itās hard thing to do to want to take care of your self when your not happy with yourself.
I share many of the thoughts the others have written before. What I am really concerned about is the fraction of diabetics - mainly women - living in diabulemia. I do not think that arguments can reach them because they have a temporary mental disorder. In my view the severness of diabulimia is justifying to legally incapacitate these patients for a period of time. They need shelter and clinical treatment by specialists to understand and overcome their disorder. It is tough but I think they must be protected from themselfes. Later with distance they will hopefully understand why this course of action needed to be taken. At least it is better than allowing severe irreversible damage to happen - which will happen with long term diabulimia.
I was in diabulimia for many, many, years. For the first 50 years of my life and my D-Life. I never took care of myself. I did everything and anything that I wanted. The thought āits not going to happen to meā played in my head regularly. I think meeting my now husband, who had to go on dialysis for five years before he got a transplant, made me realize what could happen to me. My husband is not a diabetic he had nephritis and was told never to drink alcohol - and he owned a restaurant/bar for many years. He is no longer drinking alcohol and with his transplanted kidney he has got a second chance. With D, even if you did end up on dialysis, with a kidney transplant, you would still have diabetes and all the other complications that go with it. I have come to terms with D now and I do everything within my power to stop the progesssion of the complications. You cannot reverse the complications but you can stop the progression. I am very glad I woke up and decided to take care of myself. I have now had type 1 for 56 years and am proud of it.
Hope this helps some people out there.
Sheila
If the person is a teen and still under the control of the parent, keep an eye on the BG meter and pump. I look at the meter when she comes home from school and the pump every evening. Identify the times when BS should be taken and skipped and bring it to the personās attention (we have a very young teen). In our case, there is a time crunch and she does not like to take BS before the bus. Solution is to take 15 grams of carbs before bus, skip BS testing and do it at home, where I can correct with snack. We had to have the nurse take over before and after Gym blood sugar checks because she would skip too many of them, due to the time crunch. Try to identify problems before they get out of control. For adults who do thisā¦ I think it is usually very young adults who are just coming to grips with managing diabetes on their own. The person should see a diabetes educator and a therapist who specifically deals with chronic illnesses. Try to speak to this person, befriend them and try to get them to seek help. I do worry about the college years, hanging around with peers and drinking, etc. I would not be surprised if a lot of PWDs falter during this time period. Hopefully, this period of noncompliance is very brief.
Suicide by non-compliance. We see that in the ER all the time. Ive spent countless hours trying to talk, understand and motivate people to take care of themselvesā¦ It seems once they hit that low spot they need psychiatric help.
It will be a hard situation. I tried that back when I was younger (all the things you listed) and my mom talked to me about it. Didnāt lieson. When I had my 1st daughter my mom looked at me and ask me if I wanted to see her graduate and if I did I had to change my life style. I did 17 months later had my 2nd daughter and after finding this site have done even better. Iām kinda in that sutiaion with my oldest daughter now. Sheās a Type 1 and NEVER does anything that weāre suppost to do. I tell her what I know can happen and hope for te best for her.
This was me until a year ago. Iāve still got boxes of unused, expired test strips sitting around from years past. Iād even just āmake upā numbers to fill a log book the day before a doctorās visit so I wouldnāt have to hear any admonishments. I had several wake up calls along the way, but for some reason I only payed attention to the latest one. I went into the ER, feeling fine, with too much potassium in my blood. Which apparently can just kill you outright. Turns out the potassium was just a result of a botched lab test, but for some reason I got the message this time.
When I was diagnosed, I was too young to help myself. Many t1s are. So youāve constantly got your parents or whomever doing everything for you as a child. As a result, when I got older I had alot of issues. I was sick of hearing about diabetes and even had a sort of knee-jerk disdain for adults that discussed it, Iād think āwhy donāt you grow up?ā.
For someone in that kind of mindset, no amount of begging, pleading, or warning is going to do much more than make them frustrated. And because this sort of person probably has some pretty big issues with independence, offers of help will only make them irritable.
I really donāt know what about this last emergency room visit snapped me out of it. Iāve often wondered what I would say to someone in their teens/20s to have the same effect and unfortunately Iāve got nothing. But this is a much needed topic, thanks for bringing it up.
Having been through d-burnout and out the other end, the one thing I would keep foremost in my mind when approaching someone, is not to judge them.
Iād encourage them to get some counseling and tell them that thousands have gone through what they are, and thereās a light at the end of the tunnel. Iād encourage them and explain why the alternative is so much worse.
D-burnout is so common, I think the numbers would shock most people.
We are all different, and handle things differently, not only diabetes, but many things in life. On top of that, if you are depressed or have self esteem issues or have a tough family or relationship situation, or even if youāre just a teen, this all has a domino effect into diabetes management. Iām not sure we have enough āofficialā systems in place to help people (in any of the countries we all come from), even when they want to be helped (insurance issues and infrastructure issues), so itās often up to family and friends.
The worst thing is getting nowhere with someone. Sometimes you have to accept that too and hope that someday things will change for them.
Iād say - encourage, donāt judge and donāt lecture.
I never could get into the routine of testing. I was diagnosed in 75 and there were no testing meters back then. Back in 98 I knew I was way out of control but not do to negligence but because I was flying blind not knowing the current methods of carb counting and MDI. I was on two shots of fixed Humulin N only for nearly 25 years. I finally committed to going back to my long vacation from my endo who helped me get back on track. I tested 4 times a day for a few years till I felt I didnāt need to test anymore. My Ac1ās were always in acceptable range throughout my existence though I never really questioned what they were. I now have a far better understanding of how to manage it but I still basically donāt test. I make adjustments on the fly do to my sensitivity to the highs and lows and do OK with it. My last A1c was 6.1 without testing. Still there has to be a better way to live with Diabetes without having to walk on eggshells every minute of every day. It sucks the life right out you. Hopefully if they canāt eventually cure it something like Smart Insulin will handle what we are unable to do on our own.
I think there is a real need to be able to have interventions much as families have learned to do with alcoholism/drug problems and then have in-hospital psychiatric care. This has not been done with diabetics who stop being vigilant. One of the problems is that family members cannot easily know what the person is not doing unless they decide to micromanage. And who of us does that with a family member unless he is under age. There is a definite mental illness component that requires therapy. A combination cognitive behavioral therapy and therapy for depression are probably needed. The combinations are not widely available.
Hmm-well I have been type 1 since 1981 and now, 29 years later, being on the pump for 8 and a half years and still Ha1cās up in the 8ās, it is discouraging. Different doctors, adding Symlin to the mix and still no better results. What a letdown
