I have had Type 1 Diabetes for 20 years now. I went through a horrible time with misinformed medical professionals for a number of years until I ended up in the hospital with DKA, and insisted on a different specialist (Endo). He did a C-Peptide test and determined I was Type 1 and started me on an insulin regimen.
I had already found that if I ate lots and lots and didn’t dose for the food, I lost weight. I battled with this (Diabulemia) for years. I love food. That’s mostly why I cried for a week when they first told me I was diabetic. And, I think most of the trouble I have had with the whole thing has been an inability to face it. I am diabetic. My pancreas quit working.
In 2000, I worked with a retired engineer who taught me how to be my own pancreas, and by mathematical equations he showed me how to account for every carb and dose properly for it. We figured out how long it took glucose to peak in my body, and how long it took insulin to do its job in my body (the action curve). After 3 months of this grueling lifestyle, my A1c was 5.0 and I started to exhale. People around me were very concerned because I was so focused on being perfect and doing everything exactly, it was taking up all of my time and I was anxious and uptight about what I ate, etc. And, I was taking nine shots a day. And, the disease was a full-time job.
So, my husband bought me a pump.
Wow, did it give me my life back or what??? I could relax, and the pump figured out all the doses, corrections, etc. But, it was only a matter of time until I started slipping and not taking proper care of myself and my BG numbers. I ended up in the hospital again, two years ago for DKA, in Canada (first time was in USA), and ended up with a wonderful Endo I see regularly.
This has been an emotionally, and sometimes physically, painful 20 years. I don’t want to have the “all-or-nothing” mentality: either I am perfect, or I am doing really, really bad. There seems to be no inbetween.
Denial is at the root. It’s been easier to just forget I am diabetic, set the basal dose in the pump, and go along my way not testing or dosing for food, and eating whatever I want, how much I want. There is also a lot of shame involved in this. I am stepping out on a limb here, because I wonder if there are folks out there that have struggled as much as I have with facing and managing this disease for the long-run. It’s a private pain, and a hidden issue. And, it’s lonely. And I know it’s wrong. If people know, they freak out and yell at me. That’s the last thing I need.
Moving on, I am facing this again and I want to get past obstacles and keep moving towards being healthy and feeling good. That’s why I’m here.
You are talking about we as well. I have been diabetic for 23 years and I am either doing it all or doing little to nothing. I hate it and I feel guilty, but I have a job, husband, and two small children that I always put first. I never seem to be able to change this cycle. People say if you don’t take care of yourself…I know I know that doesn’t seem to help. Often times want to go to diabetic bootcamp away from everything and try and set myself straight…but life never stops :(.
You are NOT alone!!
Have faith in yourself - You can do it! May God bless you and keep you in his care.
Welcome!!! Please know that your not by far alone in this. I’ve been a diabetic now for 38 years and it has consumer much of my life. But here you can talk about all that ur going through and there’s someone here that probably has been in those shoes b/f or even are now.
I thought you were talking about ME! Search for my blog on My Coma. It was horrible, and I almost died. I have struggled with rebellion the whole time I have had diabetes (also about 20 years), and it IS emotionally painful. I really have to control myself and fight my impulses to ignore my diabetes, and no, it’s NOT easy. And when I get depressed, it just gets worse, and I have had Major Depressive Disorder since childhood. The only thing that seems to help in that case is that I allow myself to binge on sweets, as long as I promise to take enough insulin to cover it. But I still obsess about weight, too. Like a damned if you do, damned if you don’t position.
So I’m NOT going to freak out and yell at you – I’m just going to tell you you’re not alone, and you’re not abnormal – you just got dealt a lousy hand, and it is definitely hard to play it! (((((((HUGS))))))
You are not alone! I have battled this for 6 years. It is truly not an easy battle. I don’t think that anyone would yell at you, as we all fall sometimes. I know that I am the worst, but getting better. I have started water aerobics and that has helped with getting myself back(I’m a mom of three)by having some time to myself. At any rate we are all in the same boat. (((((((hugs)))))))) =)
As I posted on your page : " steps forward to connect with others with d !!!" …hugs from BC
Never alone with us and TuD. Diabetes isn’t as easy as it is portrayed. Glad that you are here.
Thank you or sharing your story. It reminds me a lot of mine. I suffered diabetes symptoms for years before I saw a doctor about it. The last straw was the extreme memory loss and confusion I began suffering, not to mention the constant lethargy. I was diagnosed in 2005 as a type 2. I received the wrong treatment for two years before I hit DKA and was told that I am actually type 1. It took me a long time to face it, and sometimes I am still not sure I have. I have times when I eat really poorly and feel awful and then suddenly my diabetes is my entire life. I wish I could qualify for a pump, but I was told that until there is proof that I cannot be trusted with my own care, I would have to shell out $8,000 for a pump that will only last four years. It makes the idea of buying a new flat screen tv seem like pocket change.
I have no diabetic friends. I am the only diabetic in my family. And as supportive as they all try to be, they don’t mind me eating crap when it’s their idea but if I choose something I shouldn’t, everyone is upset. Sometimes they don’t notice at all. People are really generally insensitive to me about my diabetes, and that makes it hard for me to care if nobody else does, especially because I don’t want to have to. And I don’t think anyone even thinks about that.
Being in my twenties, I also suffered diabulimia for years, because for the first time, bad or not, I had a way to be skinny and lose weight easily. I only faced up to that a few months ago. Thanks for posting this. For the last 6 years, I’ve had long bouts of considering suicide, because I didn’t know how to live this way, and I felt like all the other diabetics I’d ever met knew what they were doing, and to them it seemed so easy. I am really relieved to know that how I feel is normal.
Thank you for that. I know where you are coming from. My diabetes was missed for about 10 years - I remember being breathless, very weak, could barely walk, and from being about 14 stones (I had been on 6 months of steroids after suffering anaphylactic shock) I started losing weight - which at first I was pleased about - except that I was vomiting all the time - and the weight loss did not stop! my lowest weight was 5 1/2 stones and I grew a lot of downy facial hair (a symptom of malnutrition!) My liver packed up for a while. I had the smell of ketones but nobody picked that up - they just thought liver, smell, alcoholic problem. They then decided that the liver was due to me being on certain medications long term without having been checked - the doctor had given me four differently named medications which were exactly the same thing for indigestion (finally, after years diagnosed as a hiatus hernia) so I was being quadruple overdosed! It took about 6 months to heal but I have never had liver problems since. Looking back I do remember them checking my glucose levels a lot in those weeks in the hospital but nobody mentioned that I might be diabetic. When I first went in I was quite high and they were worried but nothing more was said.
I was still getting severe stomach pains and vomiting about 4 years later and to cut a long story short it was discovered that I had cysts on both my spleen (hence the stomach pains and hiatus hernia - it was pushing my stomach up into my chest cavity) and another on my pancreas. I had been aware of the one on the pancreas since 1989 when I had been back to my homeland to be checked for low blood glucose levels (at the time the UK was not believing that anyone could suffer from low blood glucose levels - but my real father and I both suffered with it. I think there was mention that it might turn into diabetes at a later stage but I was just so glad that I had a diagnosis that I pushed it to the back of my mind.
The splenic cyst was drained in a pioneering procedure (I was the first in the world to get that op) and after a couple of weeks was pain free for the first time in all the time I could remember! It was brilliant, but because I was anaemic as well from bleeding stomach ulcers I stayed in hospital a total of 6 weeks. They were just about to discharge me when they said they were going to do ANOTHER fasting blood test (I am a needle phobic!) Later that afternoon I got the diagnosis and my first word was not polite! I had Type 2 diabetes! (wrong as I was to discover 2 years later!) I had been very restless at times and would sometimes go for a walk around the hospital at 3 am or so. On several occassions I would come back, not having met anyone, to be told that I should not be drinking alcohol! Where would I get alcohol at that time of the day? Alcohol was the last thing on my mind and the nearest shop was 2 miles down the road and I was pulling a drip stand!!! (that was probably ketones).
Anyway, I stayed in for another 2 weeks (totally missed Spring of 2004!) and I was put on tablets. following another DKA episode in which I nearly died (but had been accused of drinking again!) they asked me when I came round why I had not taken my insulin? Er, well, I had not been given any and I was Type 2. They said that I was very definitely Type 1 and that I would need insulin! They gave me insulin but forgot to tell the nurses and when I first went hypo I was terrified! I felt the need to eat and they said that I would have to wait for an hour until lunch!
Since then it has been a roller coaster of a ride! 9 hypos a day and being told to pull myself together until I met a man during a hypo and sitting on the font of a church stuffing sweets yet again - he told me I was diabetic. Erm, yes, I had sort of got that one sorted - and he told me which insulin I was on. My ears pricked up. What did he know? He strongly suspected that I was allergic to the human insulins resul
I was diagnoised 20 years ago. And I still cant manage to take care of it right. I have only started to take care of a few months ago. That is a big struggle because I still fall off the wagon every few days. I have taken care of it for about 3 weeks once many years ago but I gained weight and then I complety ran away from it again. So it is a big struggle for me to and I feel alone all the time with the pain of this problem. I can never tell my family because of the backlash I will receive. I have been dropped by doctors because I dont take care of it. But I go to the doctors asking for help to see if there is some miracle drug that will make me take care of this. But there is nothing and the blow me aside and label me a bad patient. My blood sugar have been high for so long I don’t quite remember what it is to be normal. But you are not alone you may feel like it, but many struggle with this problem.
YOU ARE NOT ALONE, i hate that everything to do with diabetes is assigned a moral value that we are brainwashed with from Dx, there is no perfect solution, there is no perfect Diabetic, There is no perfect A1c because you can swing between high and low and even out in the middle, perfect A1c but it ain’t healthy. there are millions of us just doing the best we can with what we’ve got, there will always be those who judge or ‘know’ better. It is the cruelest of things to look healthy and feel like poop, no-one understands that there is a 24/7 onus that comes with it. I often want to completely abdicate the responsibility of my D, at others I’m obsessed with the perfect numbers after 29 years practise you’d think i’d have it off pat but it’s just not that simple. it is too easy to burn yourself out worrying over unobtainable ‘perfection’. I try my best now and that is all anyone can do. Thank you for sharing. Lou x
p.s. (Do you still struggle with Diabulimia? there is a support group here if you think you might benefit)
Wow. This makes me wonder how big a group this really is – those of us with long term diabetes and a bumpy road of medical care gaps, self care reversals and uneven support don’t seem to self-identify very often. Too risky in terms of ‘good advice’ and the trio of criticism, shaming and blaming.
I am so amazed at all of the support here. Thank you so much, everybody. I feel so encouraged by everyone sharing. Thank you for being so open.
sometimes I think overcoming denial is the hardest thing to handle with chronic illness, especially one that is so emotionally and physically intertwined as diabetes.
know that you are not alone. we all struggle with this every day, in so many different ways. live your life, just try to remember (good or bad) that diabetes is a part of it too. I have faced/ am facing many of the same issues as you are. I don’t really know how to handle this all myself sometimes and it’s nice to have a place like tuD to come to.
I can relate to what you have written here with all my heart! I have struggled with acceptance and denial my whole life. One thing I’ve learned that I know is certain: one day at a time is the only way to take on this disease and many other painful circumstances in life. I want to feel good today so I’ve got to do what I’ve got to do TODAY. Some days I fight through bitterness and jealousy and I’m uglier inside than I would like to admit. Other days, however, I’m amazingly beautiful and brave…and clever and successful at blood sugar control.
There is no escape from diabetes burn-out. It will happen from time to time. We have to forgive ourselves for feeling defeated and cursing god (am I the only one that does that when its bed time and i have a big day ahead and a bs of 52?)
Dis-ease is just that. It ain’t easy! I think there was a time that i thought that being in good control was like climbing mount Everest. I didn’t think it was possible and was afraid to really apply myself. Slowly but surely, I’ve learned a thing here and a little trick there that provides the occasional jaunt of regularity that reminds me what I’m striving for.
Just know that you are doing it, what so few people can do. You are over-coming and surviving. You’re recognizing the often lonely realities of the Dlife. You’re doing it girl…and i don’t think that constitutes denial. The shame you feel is shared by many of us…I often feel guilty if my numbers are nuts but WE ARE DOING IT. It’s an art-not a science. It gets messy so remember to takes a few steps back and look at what you are creating- probably a pretty cool, dynamic and STRONG woman!