Diabetic - Type 1 - 24 years - ENOS (Eating disorder not otherwise specified, ie. purging without binging) and more recently in the past two years I've discovered diabulimia. I'm in treatment but its a struggle.
My most difficult challenge: realizing that dying of complications or living without a leg is WORSE than gaining a little weight. Currently my thinking is distorted.
I've come a long way with a combination of things (intensive cog beh therapy, cymbalta, starting a low-carb diet, a dietician, a pump guru, a psychologist, and my endo).
I've learned in my 26 years, 24 with diabetes that it doesn't get easier, you just find a new kind of normal (at least for me).
Hello all, it seems as though no one has written on this in quite a while, but I am having a particularly hard time the last few days and wanted to share my story. I am 27 years old and was diagnosed with MODY at the age of 14. I come from a MODY (mature onset diabetes in the youth) family but all of my endo's have only ever treated me as a TI on insulin since diagnosis due to my age. I have polycystic ovarian syndrom on top of all of this so I'm an endocrin nightmare. I was always very athletic and stayed active so weight in high school was never much of an issue (but I was on injections then). My senior year, I started to really gain a lot of weight when they raised my dosage. I figured out my freshman year in college that if I deprived myself of my insulin, that I was losing massive amounts of weight - and Fast. I was deathly afraid of gaining the freshman 15 and it was so great being able to live the life of a college student, while watching the weight come off. August of 2002 was when my diabulimia officially started.
From 2002-2009 I was a full blown diabulimic (essentially taking no insulin what-so-ever, behind my family, boyfriend, friends backs.) No one knew that my sugars were God knows what because I wasn't checking them and I seemed healthy. I honestly feel as though my sugars ran so high for so long that the side effects really didn't bother me. I lived with the yeast infections, thirst, and tiredness but it became part of my life. To me, dealing with all of that was well worth staying relatively thin.
Then in April of 2009, my nightmare began. I developed what is known as DTR or diabetic thorasic radiculopathy. Essentially, my nerves were so damaged that they would begin to stroke, and when they did, it felt like knives going into my sides. Because it was so rare, I went 6 months in and out of 4 hospitals (2 of which were teaching hospitals) without a diagnosis. I was essentially in a dilaudid induced coma about 20hours per day to deal with the pain. I was taking about 4-6mg of clonapin per day as well. Essentially, when I was walking, I was a total zombie and literally don't remember much of the better part of 8 months of my life. During this time, I lost about 60 lbs and when I was released from pain med detox in John Hopkins, I looked like I had just been in a Nazi camp. Here in lies my current issues...
I became so accustomed to being so thin for so long that when I regained my health, and started back on insulin, I gained all of my weight back and more. Since this time, I now work in the diabetes industry and have any and all therapies at my fingertips. My sugars are great, but I struggle on a DAILY basis with needing to take all the insulin. I have a wonderful boyfriend and he just wants me happy, but he doesn't understand how difficult it is dealing with putting all this insulin into my body. (Because I'm MODY, my body already makes a normal amount of insulin, but my cells can't absorb it, so not only do I have that insulin, but all the insulin I get in my pump as well.) He can't seem to understand how I'm working out like I am, and on a 1200 calorie a day diet, that I'm still gaining weight. It's really hard. Part of me wants to go one week on, one week off, and pray that the DTR stays away.
Does anyone know of any phenomenal specialists in diabulimia in the country? I'm willing to fly anywhere for an appt twice a year.
Is anyone else out there a MODY diabetic and how do you treat?!
All the best!
hey. ive been a type 1 for 8 years and am a college student. im pretty slim, and am totally not a foodist. the constant 24/7 worrying and monitoring of my blood sugar and carb intake has completely eliminated my desire for food. i dont like eating, and perhaps even hate it. ive reached the state where i only eat to keep my blood sugar level appropriate. its like food is simply a medication. i dont get hungry like others do.
im also very independent. i dont need help from others which of course is good. but i also feel weak when someone attempts to help me, or distinguishes between me and others just because of my diabetes. so i just returned from a 5-day holiday with 3 friends (ive done multiple school trips and trips with friends and i never required any assistance. sometimes even no one knew i was diabetic). so on the first day, i cooked for them then slept unexpectedly as we were all extremely tired. suddenly i got seizures as i was horribly low, probably because i was supposed to eat more carbs. my friends knew i was diabetic but didnt know what to do so they drove me to the hospital (first time i ever got treated over a hypo at a hospital). since then during the whole trip they treated me differently as they were worried, which irritated me, and sometimes joked over the seizures, which irritated me even more.
all this triggered some kinda hypo-phobia in me. i over-ate carbs so i can be fully sure that i wont get a hypo, and re-prove to them that im a lesser human etc.
usually i am great with diab care. my A1c last time was 6, and i could spend a whole day measuring my blood glucose only twice with perfect results. after that incident i measured over 5-6 times a day. it basically destroyed my self confidence, and now i eat even less.
its as though eating is a form of leisure, whereas fixing ur blood sugar is the actual priority for me.