Please read this, I am really hurting because of this

Type 1 and LADA
1

I always enjoyed eating. I was overweight for a period of time when I was a kid but never really fat, just chubby. I took SO much pleasure in eating food.

I found out I have type one diabetes 3 years ago and I am 25 now. I can honestly say I wish I did not have to eat to survive. It is simply a means to an end.

I can never win. If I eat too little, I get low sugar and feel like I'm about to die. If I eat too much then I feel like ■■■■. When I feel like ■■■■ from having high sugar, then I take too much or too little insulin...you get the idea.

I use an insulin pump, and I am extremely grateful for everything I have in my life and I am in relatively good health, but I wish I could go on with my life without food.

I used to take SOOOOO much pleasure in food. Now I literally hate eating. I was about to throw my bowl of cereal against the wall when I was thinking about this today. Instead of destroying the bowl and freaking everyone in my family out, I went and shed some tears and wrote this post.

Please give me feedback. I have no friends who are diabetics and no one seems to know how hard it is to live with it.

Any feedback would be great.

2

I know what you mean about the way balancing insulin is *really* difficult. I like eating still. I cook a lot of the food in our house which can be useful for making sure I know what I'm eating, etc. Cereal may not be the best "baseline" food to start days with. A lot of people report it to be really challenging and many folks give up on it and just say it's not worth the effort. I'll eat it here and there, if my rates and ratios are locked in but it's still really challenging.

3

Are you not adjusting insulin to match what you want to eat? With a pump, there is no reason you should be forced to eat anything, unless you are low (and if you are going low regularly, you should adjust your pump to try and prevent this)? In the old days of NPH it was necessary to have a very rigid eating schedule and to follow meal plans, but with modern insulin regimens it's no longer necessary.

I've lived with severe food allergies and Type 1 diabetes since I was a kid and I'm not sure I really remember what it's like to "just eat" without wondering if it might make my blood sugar high or fearing I might have an allergic reaction, without checking nutritional information labels and ingredients lists. I am definitely not a big "foodie" and I like my familiar food and find it nerve-wracking to eat new things or eat at new places.

Aside from having to take precautions, though, and perhaps having to limit food to some extent, I still enjoy eating. With an insulin pump, it should be possible to have a great deal of flexibility around timing and amount of food. You should be able to vary meal times or skip a meal completely if you like, or throw in an extra snack, or vary the amount of carbohydrates you eat.

4

I agree I skip lunch almost daily during the week because I get so wrapped up in what I'm doing at work, by the time I have a free moment it's almost 3pm and well in a couple of hours it will be time to go home anyway. That is the beauty of being on a pump, you have that flexibility. There's a lot of trial and error, but I've found MOST things I can still eat, as long as I keep the portion sizes in mind. Even cereal, although some I do better with than others. It's a challenge yes, but you eventually learn what you can eat, and what things just aren't worth the headache, what serving sizes you can manage successfully, and things do get better.

5

I'm so sorry you're going through this, I think most people do go through an upheaval and different feeling about food after a D diagnosis and being on insulin. I know I did and although my life is changed forever I do still enjoy eating, not all the preparation it takes at times but the food, lol. I would try to start the day with more protein, just have meat/eggs and green veggies and cheese and see if this helps you. Most people with D can't have cereal, it's just too many carbs in the am. Do you have a pump educator who can help you? You should be able to adjust your basal and do small corrections to get better control etc. I think you can do better and feel better about food eventually. Have you tried waiting to eat after bolus? You can do also try double wave bolus and on the pump you can adjust your basal to stop lows and treat highs. Maybe your basal rate and your carb ratio needs to be adjusted? Maybe there are foods you still need to just eliminate if they always give you trouble.

6

omg, i cannot tell you how much i am with you on this. i was diagnosed t1 almost two years ago at 36. before t1 there was always that ten pounds i wanted to lose but i LOVED LOVED LOVED eating. i would eat basically whatever i wanted and just exercise more. it was amazing i wasnt really overweight with the amount of food i ate.
friends and family from the time i can remember have always commented on how much i enjoy food. the textures, the smells, everything. those people who would say, oh i was so busy that i FORGOT to eat, would strike me as extremely dumb (forgetting to EAT? thats like forgetting to BREATHE!)

and then i got t1. i remember walking into the kitchen after leaving the hospital and i literally TIPTOED into the kitchen, looking around and feeling fear. FEAR! there were many times i thought about how i would be like to be a robot and not have to eat so i wouldnt have any of this to deal with and have the joy of eating ruined forever. my relationship with food went from pure love and joy to hatred. i hated food. one week i just had salad and black coffee so i didnt have to bolus. it was not a happy week but i was so angry that i wanted to teach diabetes a lesson. (dumb).

there are lots of ups and downs when it comes to dealing with food and diabetes. it is hard not to label foods as bad/good with diabetes, very easy to become a bit disordered about eating. for me it is the most difficult thing to deal with because of how food is the social "glue" of life. when do we get together and not eat or drink? now as a t1, is there ever a moment you can be without it, just in case?! it is friend and enemy.

my choice to eat moderately low carb (about 100 a day) has made control easy for me-dont know how it would be otherwise, as i started low carbing on diagnosis-but as i pass through the cereal aisle in the supermarket, i die a little inside. sometimes i completely avoid it but other times i go down it like a trip down memory lane, remembering full bowls of golden grahams and any deliciously chocolatey versions that i enjoyed just 20 months ago. but mostly i just feel sad and very hard done by about the whole no-cereal situation. and the no pasta-potato-paella-unlimited bread-and most other delish things-situation.

people who are not restricted in their eating will never understand. i lament the few times i did try to diet, thinking about how i missed out on eating whatever i wanted those few days.

i try to make a joke of it to myself now because its easier to laugh than cry. or more pleasant anyway. i try to be thankful that i didnt get this horrible disease as a kid and that i was able to stuff my face as a kid, eat birthday cake and all the pizza i wanted. but i hear you.

this is a really long post, a testament to how much this topic moves me!

7

I’ve been T1 for 30 years and lately I feel the same way as you describe about food. I’m exhausted from work, family, constantly thinking about my blood glucose levels, etc. So much easier to just not bother eating than think about how many carbs, how much insulin, etc. I’ve recently resorted to just skipping dinner altogether some nights.

8

I don’t think there is anybody here that doesn’t love to eat. It’s one of the biggest cruelties of the disease. Okay enough said about that. I think you need to get control of your diet. Only then will you get control of your BG and you’ll feel like you are in control of your life a little more.

I have been type 1 for 27 years and for the first 20 I was totally out of control. Seven years ago, I came to a turning point and realized I had to change something or I was going to die. I started seeing a nutritionist on a weekly basis. I paid for the service myself as insurance would not cover more than just a couple of visits. I went for a year until I was finally ready to go it on my own. I changed my a1c from 9 to 5.9. I felt a LOT better.

By taking some of the mystery out of food, it made good BG control less challenging. I felt like it had more control over my life in general.

The biggest single impact was to reduce carb intake to almost nothing but a nutritionist can help you explore all kinds of great foods and great food combinations that are wonderfully satisfying.

Whatever it costs to work CLOSELY with a nutritionist, it’s well worth it. By closely, I mean on going for a period of time and not just one or two visits.

Best of luck with it.

9

I remember times like this. It is no fun, but try not to despair--look on it as new experience and an opportunity to learn!

I agree with Jen and Christy--the best thing about my pump is the ability to eat as I choose, within certain limits. Those limits focus around foods that I know cause me difficulties, like cereal, and amounts. Over the years, I have learned how to eat Chinese food (square wave, big bolus,) pizza (make my own,) pasta (ditto-make it myself.) It takes experimentation.

Make sure your basal is right, but do remember there are no constants in D, so it will change. Then work hard for a while to match your carb to insulin ratio to well measured foods to insure it is correct. Then try new things.

I have the most trouble eating in restaurants--I think they sprinkle secret carb powder on the food :). Good luck and don't ever give up.

10

Do you have the right basal rate? If that's not right, it's harder to get control. You shouldn't go low when you skip a meal. Then, have you tried lowering your carb intake and cutting way back on sugars/starches? For me, it is much easier to cover the carbs I've eaten with insulin if I eat fewer carbs at a time. I can still have big meals (large omelet for breakfast, large salad for lunch), but it's stuff that doesn't need a big dose of insulin and doesn't risk the highs and lows as much.

You might try contacting a diabetes educator. I believe there are some (one here) that will do work with you via the net (phone/video). Also, try finding a local support groups or going to larger diabetes related events.

11

Sometimes I think diabetes control is really 90% mental. Why do we want things which we can only tolerate in moderation, if at all? If your life is all about your denial of your love of eating you can tear yourself up. Despite what we are told, what we choose to eat has a big effect on our blood sugar and while some of us can just bolus and eat whatever we want, I sure can't. And most normal people can't just eat whatever they want without consequences.

Like you, I have always loved food and mourned the loss of foods that I loved. But over time, I have broken my relationship with old foods and fallen in love all over again. There is so much good food out there that doesn't drive your blood sugar crazy and it can be wonderful. I eat like a king. You just need to make this a positive thing, about what you can and should eat rather than about would you can't and shouldn't eat. I think of food as my medicine and I don't skimp on it. And if family wants pizza, fine, I'll have a lobster with drawn butter or filet mignon.

You can change your relationship with food. You can feel like you are not depriving yourself and that you can still enjoy life's pleasures. You just need to get your head around it.

12

I absolutely agree with what Brian and others have said. It's easy to get stuck in feeling "deprived". Yes, I have foods I miss, some of which I tried/tried/tried before I was willing to admit I couldn't eat; some of which I still eat on occasion and have gotten better at bolusing for, but am still not always successful. But I don't eat them often enough to crave them (carbs ARE addictive, for some of us more than others) and I don't spend a lot of time bemoaning them. Every once in awhile we have a thread on here where everyone contributes in super descriptive glory their favorite missed foods. WHY? It's like wallowing by looking at pictures of an old lover and listening to sad music. Not useful!

I don't feel deprived because I work really hard at finding/creating yummy foods that I really enjoy. And when I do eat the atypical foods, it still is in moderation and they are a treat.

I think the medical/dietary professions do us a HUGE disservice with the current "you can eat whatever you want and bolus for it" trend. You can't. First of all the chances of ending up too high or too low are huge. I'm not a Bernstein follower but I do believe strongly in "the law of small numbers" (less carbs = less insulin = less margin for error). Secondly "eating whatever you want and bolusing for it" leads to increased insulin doses and consequently weight gain - if not when you're 20 and have a great metabolism, when you're 40 and don't. It also leads to Insulin Resistance which is not what a Type 1 wants or needs!

I loved food in the past and I still love and enjoy it now - just differently.

13

its funny that the feelings of deprivation wax and wane. once i got used to the new normal of lowish carbing, carb counting and getting the insulin:carb ratios right, i was able to enjoy food again. i have learned to eat much healthier and have been enlightened about the way the food industry has corrupted the western diet with ridiculous amounts of carbs.

sometimes though, nostalgia overcomes me and i start thinking about my favourite old carby meals or treats. most of the time, i really ENJOY talking and thinking about them, remembering who i used to eat them with, etc. so for me its not a waste of time. sometimes thinking about these kinds of foods i occasionally induldge in makes me happy, as im not thinking, oh, i cant have this anymore, but instead, more along the lines of, wow, that was really tasty way back when!

i still eat some of my favourite desserts sometimes, or have pizza back in new york, but most of the time im very satisfied with the stuff i eat now, which is a very good thing!

14

While food is literally fundamental to everyone's life, we need to understand that we learned to desire certain foods. We were not born hard-wired to crave pizza or boxed cereal. Over time and spaced repetition we learned that we enjoyed certain foods and also associated certain positive pyschological feelings with certain meals. We all have food memories of foods that we grew up with, ate at an early ages, and remember these foods with a feeling of being safe and loved.

Bottom line, we learned to associate these memories with certain foods. Luckily, humans, if anything, are adaptable. We can unlearn these memories, especially if a new reality, like diabetes, makes continuing this dietary habit unhealthful. The best way that I've found to "defang" these potent food habits is to simply replace or update the foods that bring me contentment and a feeling of safety while they bring me great BGs, too!

I used to miss a bowl of cereal, too. I loved the long-term memories that harken back to childhood. I remember the taste of finishing a bowl of cereal, the sweet taste of the milk combined with some crunchy carbs and perhaps the last slice of banana. I've replaced that seductive memory with a bowl of berries (blueberries, blackberries, strawberries) covered with heavy cream and perhaps a little non-sugar sweetener. The last thing I feel when I finish a bowl of cream-covered berries is deprived!

Following a low-carb, high fat diet, I've been able to completely substitute new healthy and BG friendly meals for the old carb-filled standbys that always destroyed my BG metabolism. I don't miss those post-cereal 280's that lasted till lunch. I don't miss that groggy foggy-headed daze that deadened my vitality. This is the very next thought I have when I find myself seduced by an old memory of a former food love. While we certainly are what we eat; we also are what we choose to think. The thoughts we feed our brain do affect the quality of our lives.

I truly look forward to my meals and feelings of deprivation are very few and far between. I just finished for breakfast, 2 thick cut slices of bacon fried brown and crisp together with scrambled eggs made with heavy cream and topped with a tangy mango peach salsa. And I chased this meal with a full-bodied coffee with cream. This, to me, is real comfort food!

15

Inspiring post, Terry. I am not a low carber but it is nice to know that T1 is not just survivable but thrive-able via low carbing and modern day insulins and bg meters!

16

Terry brings up some really good points about the development of good and bad habits. I learned a great deal about addiction when I got into recovery from my eating disorder 18 years ago. I learned that it's physical, psychological and emotional. I learned about food's meaning in our lives, some of it way beyond what should naturally be attributed to it. I used to have a sticker on my fridge saying "there's no love in here". When I started to work with clients with eating disorders and other addictions I did a workshop which was in a residential facility and given shortly after dinner so I knew nobody was hungry. I laid out a table with tasty treats in the entry to the room and then, as the clients entered I busied myself with some papers in front of me. Everyone, and I mean everyone gravitated to the tables and noshed. When they came and sat down I started the workshop by asking them if they had eaten the snacks, why they had done so. I got answers like, "I thought we were supposed to do that until you started the lecture", "they looked good", "I wasn't sure what else to do", etc. I asked what answer nobody had given and it took awhile before someone volunteered, "I was hungry".

While we all have different relationships to food, most not nearly as addictive as those of us with eating disorders, our culture especially in the U.S. has a pretty unhealthy relationship with food. I don't completely agree with the "high fat" philosophy, but agree that in its focus on lowering fat our society has greatly increased carb consumption and then wonders why we have an obesity epidemic! Like most things in our culture, fast is considered supreme, and natural barely recognized. We eat standing up, in our cars or running for the bus. We eat things with names we can't pronounce that pop out of our microwaves in three minutes or less. Our social lives and our work lives are punctuated by visits to Starbucks where we pay $4 for something calling itself coffee that looks more like a liquid banana split. We're comforted only by excess.

In general we think of "bad habits" let alone addictions as something we are either stuck with, joke about or consider a problem that needs outside help (which it sometimes does). We rarely think about good habits at all. I'm not saying that habits are easily shed. But I've rarely seen someone with determination who was unable to do so (sometimes with help). It's the waffling that keeps us stuck. But lots of times bad habits are shed with nothing to replace them. This is why so many addicts and alcoholics relapse and why people who adopt healthy eating feel they can't sustain it. The "bad habit" needs to be replaced with an equally tenacious "good habit". Or else we'll just feel deprived and go back to the bad habit. Also we all need to find what we can live with for the long haul. So many people think the only way to get over a "bad habit" is by being extreme and rigid. Sometimes this is true: Most alcoholics can't return to moderate drinking. I, as a sugar addict learned that I can't do "a little" so I choose to do none at all,which was ultimately a lot easier. But a lot of people choose an austerity that's as unhealthy in its way as what it replaces. And many choose something that is so unsatisfying as to guarantee "relapse". I've always called it "the twinkie/granola syndrome" (though today I love and miss granola so perhaps the "twinkie/iceberg lettuce syndrome" would be better.) You have eaten so much junk for so long and realize you need to make a change. So you develop an extremely restrictive diet that's boring as hell and you lose lots of weight but feel incredibly deprived and soon run back to the full on junk food. Moderation as well as redefining what is enjoyable works much better - in life as well as blood sugar.

17

Zoe - As humans, we tenaciously cling to our eating habits, often with the fervor reserved for deeply held beliefs such as religious or sacred values.

I include myself in this observation. Even though for a few years I had read about and considered low-carb eating as a good tactic for controlling BGs, I did not commit to this change until I was shocked by two diabetes' complication diagnoses.

Looking back, I can see that I was a carboholic and my devotion to carbs lasted for far too many years following my T1D diagnosis. I firmly believe that carbs are addictive to many people. In fact, I read one study that showed the pleasure center of the brain was activated when carbs are consumed.

What amazed me, however, was the relative ease with which I cut my carb consumption. After of few weeks I no longer had the gut-level desire to eat large quantities of carbs. Compared to quitting smoking, conversion to a low carb way of eating was simple.

Your ambivalence regarding dietary fat is a common one. Unfortunately, we only have three sources of dietary energy: carbs, fat, and protein. Actually, four if you count alcohol. Reducing carbs only leaves fats and protein. Science tells us that overconsumption of protein is not generally good for us and can lead to weight gain. That leaves us with fat.

The propaganda machine fueled by big pharma/big food interests has successfully brainwashed our society into thinking that fat makes us fat and clogs out arteries. This is not true. It has not been successfully demonstrated with any studies. What we do know is that high carb combined with high fat and high calories is a dietary disaster.

I agree that dietary swings from the extremes of "twinkies to granola" are not a good idea. However, I no longer believe in the absolutist "no pain, no gain" philosophy. My recent adoption of a moderate 40-60 minutes of walking per day exercise regimen is a "no pain, plenty of gain" experience.

In my life, changing entrenched habits worked best when I could do a satisfying substitution. Quitting smoking, cold turkey, was the hardest habit to break. Some people substitute with food but that never appealed to me. It required persistent and determined effort; it really is an addictive drug.

Our eating habits are really a complex mixture of nutrition, emotions, psychology, and social aspects. No wonder dealing with diabetes is so difficult!

18

I'd disagree that it's necessary to low-carb to thrive. I thrive pretty well on 100-150G of carb/ day. Sometimes more. I *usually* manage to do fairly well, even on excursions up above that number of carbs.

19

Acidrock, I think that's still a bit low carb by ADA standards (50X3 plus snacks). But for someone starting out or someone whose diabetes is not under control, isn't it often a good idea to go the lower carb (50-100G) route until they really get a handle on basal/bolus and how much insulin they need to cover their carbs, and then increase intake as they get better management? If not, how would you work it?

20

I think that it may be useful to consider low-carb a tool. If you're going to mess around making adjustments to ratios, I think that it's easier to do if you cut some carbs out. Say 8G of carb bread instead of 15G or whatever. If you're having less carbs and discover through experimentation that you're off a little bit, you'll be a bit less off eating a 23G of carb peanut butter sandwich ([2x8]+7) than a 90G of carb superburrito, as the "offage" won't be as significant. Once the ratios are set, it doesn't seem to matter to me how carby the food is as long as the count is accurate. I mostly eat light to keep from gaining weight but I think that it helps control BG with less work to eat a bit less. I don't think that I need to focus enough to drop down to 75 or whatever some of the lower carb science people have suggested.