Its been a decade and I'm still lost

Coping & Support
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Hello. I just found this site by chance while scrolling through a Diabetic Support page on Instagram.

I am 21 years old, I was diagnosed at age 11 as a T1D. It will be 10 years ago in June, and I still feel as sad and hopelessly lost as I did when I was diagnosed. I am awful at managing my diabetes. I hate saying it out loud because every time I do I don’t get support, I get panic (which is understandable) and it makes me feel worse, so I shut down. Recently though its gotten to a point where I feel hopeless. My blood sugars are dipping and spiking, I’ll go to bed at 245mg/dl and wake up at 52mg/dl. I’ll have a 80g breakfast and high glucose and an hour later be 60mg/dl. I have completely lost my appetite, and have almost no energy. I’ve adjusted my sliding scale, and my Lantus Solostar. Nothing. It’s never been this bad. Usually I am high because I neglect my health, and I can correct that and drink some water and be fine. Now I am up and down, there’s no pattern to any of it.

I am the only diabetic I know. I am on Insulin pens and the Libre sensor. I have Medical Assistance (U-Care in MN), and getting them to pay for things is like pulling teeth. Even if I could get them to, my blood sugars are all over. They won’t allow me to get a pump because I am so bad with managing it. I know someday its going to kill me. But I don’t know how to make it apart of my life. I never learned how, and never found support.

I get carb counting, insulin, correction. But doing it, and finding the will power to do it each day, that I don’t have. And so desperately need.

I am a bad diabetic. I know this. I need help. I need support. Where do I start?

Parker

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Hi Parker. Welcome to the site and I’m so glad you wrote in. I’m sure you’ve noticed there are people on here who are newly diagnosed and looking to connect with others who can relate to having diabetes; and others who have had it for decades. So hopefully you will find friends as well as recommendations from people who have had similar experiences as yours.
I’ll make a few suggestions, and I understand that since you only gave a bit of detail, you may have tried some of this so please forgive me if I rehash things you have already tried, but:
Carb counting is something you (and I’m using a global “you”) have to learn, and if it helps you could return to the nutritionist for a refresher. My doctor sent me back recently and I’ve had diabetes for 50+ years - sometimes a refresh helps. In addition to helping you with choices, they can help you learn to gauge portion sizes. There are online references you can use to estimate the size serving of spinach they served at a restaurant, but having a pro go over it with you may improve your confidence.
There are apps that are very helpful - I found Mynetdiary a year or so ago. It’s got a huge database of foods, including menu items at well known restaurants - anything from McDonald’s to Cheesecake Factory. Faithfully logging my foods (and other info) makes a HUGE difference. In addition to carbs the app provides calories and overall nutrition for every item in there, and if you find recipes online you can add them in yourself.
Sometimes I’ll eat a Lean Cuisine meal and that’s got the carb count right on the package. Packaged meals may not be a great choice but since the counts are right there, they may help you initially with making sure yours are correct as you work on making adjustments to your insulin.
One thing I’ve read on occasion is that some people respond better to a particular brand of insulin than others. I’ve used both Humalog and Novolog with no problem, while others find that one works much better than the other.
Speaking of insulins, forgive me for asking but you mentioned Lantus but not a short acting insulin. You can take this as a rhetorical question if you like but are you using Lantus for your correction? Because Lantus has a very different pattern from short acting insulin you need to use the short ones for correction, and resist the temptation to stack if your numbers aren’t coming down fast enough. Your endo should help determine the duration of short acting insulin in your body, and you should wait at least that long for a response before thinking about taking more.
It might be helpful to see three pros: your endo or diabetes educator; a nutritionist (as mentioned above); and a counselor. And there’s nothing wrong with finding a new endo if you’re not getting the support you need from your current one. The endo/DNE may need to start you back at Square One to make sure you understand diabetes - and there may be developments that are helpful to you as well.
Many people with diabetes find it helpful to see a counselor. Our condition can be frustrating and maddening, and can cause depression or a feeling of being depressed. Since you’re looking for support talking to a professional may be a good place to start, and I’m sure you will find friends here.
If I could make one final suggestion (at long last :blush:) it would be this: keep painfully accurate and honest records for several days; every single thing you ate, how much, and what time (online trackers are excellent for this); how you were feeling; any exercise you did even if it was just chasing the dog down to the corner; how much insulin of what type you took and when - you know the drill. It may help to limit foods to ones whose carb counts are really available so you don’t have to guesstimate. And give those records to your doctor/DNE. It may help them solve the mystery.
Wishing you the best. I’m tagging in a fellow long -timer whose feedback I really respect on this site - he may be able to give you more feedback. @Dennis I hope you don’t mind but you came to my mind as I was jotting down my thoughts.

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Hi Parker,

First of all, you are not a bad diabetic: you are a person who accidentally has a disease that is very difficult to manage, a disease that makes you maybe sometimes go mad. These fluctuations probably make you feel even worse about yourself. At least, I did when they were fluctuating all the time. I have felt hopeless many times, particularly because the numbers had their own ‘life’ (trajectory), no matter what I did and they made me feel total “out of control”.

My endocrinologist didn’t want me to go on a pump either because he thought I was so bad in managing it, but my medical assistant - who was actually excellent in dealing with an adolescent mind like mine then - made me come to switch to a pump and it was a very good initiative of her. For the first time I suddenly had a bit of control of my diabetes and it showed that the managing with the pump/insulin was never truly the problem.

Now I felt a bit more in control making the decisions I made, to have some effect. It became clear that I was not the (full) problem; it was mainly the brittle diabetes that made blood sugars going totally out of control. This small change to a pump gave me a tool to manage it more in the sense of having small effects that I was aiming at. While I did not really change my behavior, my blood sugars were more controllable. My endocrinologist thought that my behavior must have changed, but it didn’t. My managing was actually not that bad all these years; it was my diabetes that was just difficult to control (and would have been by any other person having a body as mine).

What I mean to say is that your endocrinologist might think in a wrong pattern and could also think the other way around. Of course I do not know your personality, but I can’t believe you really make blood sugars go up and down intentionally (as in the sense of: wanting to). On the contrary: writing this message proofs otherwise! Maybe you could try to convince your medical staff once more to put you on an insulin pump.

I have to mention though that because of my Brittle diagnosis and hypo-unawareness I also received a Continuous Glucose Monitoring system, resp. a sensor which helped me out as well.

I’m writing you from the Netherlands (which is in Europe) so I don’t know how the health system in your country functions in order to be able to switch to pumps or sensors, but you could at least try!

By the way: I have just bought a book called ‘Think like a Pancreas’; it seems a very keen book, written by another person who has diabetes for years. In the following review, I particularly liked the following words (words that might be applicable to you as well): “I loved that it didn’t tell me that I was doing anything wrong, or that I needed to change something about myself. It simply helped me to better utilise my insulin regime, so that I would be able to get more out of it.”
Review: Review: Think Like a Pancreas by Gary Scheiner - Type 1 Writes - Diabetes Blog
Maybe you can try to read it as well. It might help you get on the right track!

Wish you all the luck!

Kind regards!

Welmoed

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hi @TheMisterQuinn2139 Parker, I was diagnosed at 12 going on 13, so I was old enough to remember “the good ol days” and then I spent most of my time focusing on what was behind me for the first 20 years of diabetes… then came the longing for a cure that was sure to be the end of this nightmare, then endless “why me - what did I do that was so wrong”.

denial took many forms in me, and the refusal to look at what it means to have an incurable disease that ain’t going away is what prolonged my depression. it’s something that we all have to live through. No one gets to take a shortcut, there aren’t any magic words. nothing I can say, no amount of flowers and rainbows blown around the room will change any of this.

wishing it wasn’t true is a powerful mind game. and for me it was a prison.

in my opinion, here’s what I see: it’s beginning to bug you. it’s beginning to nag at you and now that it’s been 10 years 10 YEARS it’s beginning to sink in. This, right here and right now, this is the new normal. there is no escape because you cannot escape yourself - no matter where you go or how far… there you are.

so just like any terminal disease, you don’t get to pick a life where you don’t have it… you get to pick when you start doing something about it, and the fact that you’re here and it’s bugging you, means today is the start of something new.

think of a dear friend or a pet you love, and think of them as being stuck in a hole. you’d help them. you’d find the courage to deal. you’d find the strength to pull, push , or let them stand on your head if that’s what it took. the only real bridge to build now is to make the connection that you have the strength, you just gotta stop hating yourself so much. in a close analysis, of all the people I hated and who irritated me, I was the worst. making friends with myself and being willing to help changed my life.

and Parker… come on… it’s been 10 years… sliding scale? it’s time to visit a CDE or get the book “Think Like a Pancreas” and learn to carb count, and to determine your I:C and sensitivity, please come and join the new revolution.

a final though, you can’t be that bad a diabetic, you have a freestyle… I didn’t check my blood sugar… at all… for 19 years.

Hope to hear from you. -Joe

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welcome back Welmoed! I have projects in Oss and Haarlem, I hope you are well.

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Hi Joe,
It’s good too hear that you go for work (?) to the Netherlands! I once read your message about a severe hypo that you had at work and it really triggered me emotionally because I recognized all the symptoms you described (in the hotel room). I actually translated your experience in Dutch and posted it on a forum of the diabetes community in Holland because your message hit me so strong. (https://www.diabetestype1.nl/gesprekken/dagelijks-leven/467-de-crashende-sensor-hypoglykemie-op-kantoor-werk-diabetes-type-1-deel-4)

It was only later, that I dared to write about my own severe hypo-experiences (neuroglycopenic relapse) on the forum. Your story gave me that little push! Thanks. (https://www.diabetestype1.nl/gesprekken/dagelijks-leven/475-hoe-zien-jullie-hypo-s-eruit)

Kind regards,
Welmoed

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@TheMisterQuinn2139 Hi Parker and welcome to the TypeOneNation Forum!

You have already received some wonderful responses offering you “food for thought” from people who have lived with diabetes so I won’t repeat much of what was said. I’ll ad my thoughts and start of with a word of encouragement and let you know that as a teen [in the 1950’s] I didn’t do well either and this diabetes thing came close to letting MY diabetes kill me - my desire to want to live and try to manage diabetes began when I was about 25 years old - now I’m pushing 80.

“Sliding Scale” is absolutely meaningless and often directed by medical doctors who do NOT know anything about “autoimmune diabetes”, TypeOneDiabetes or T1D; sliding scale sometimes works for people with the more popular “life style” diabetes.

My first suggestion is that you find a doctor who knows autoimmune diabetes - your insurance company knows that a good doctor, in the long run, costs less than one who doesn’t understand our condition. Managing T1D using a “long-last” insulin went out the window five decades ago, and Lantus, a “background” insulin without a fast-acting or rapid-acting mealtime insulin is not an appropriate management For TypeOne.

Through out sliding scale and put in its place important diabetes management tolls such as, but not limited to:

  1. Insulin to Carbohydrate ratios [ these ratios vary during the day. this is how you calculate the amount of fast or rapid acting insulin needed to manage food intake;
  2. Insulin Sensitivity - your body’s insulin sensitivity can also change throughout the day. Insulin sensitivity is necessary in making intelligent BGL [Body Glucose Level], the reading from your Libre, corrections;
  3. Get to know your body: learn how different foods affect your BGL, learn how activities increase or decrease your BGL;
  4. Read Food Nutrition Labels - understand portion size and the number [not percentage] of carbohydrates in each serving. Divide total meal carbohydrates by your insulin:carb ratio.

Yes, living with diabetes, and my message, is tough - but diabetes can be managed successfully and allow you to live a long, productive, healthy and fulfilling life. Stay in touch.

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Hi Dennis! I came across some of your replies and would love to chat more about your experiences and having Diabetes for so long. I’ve had T1 for 24 years now but still struggle with maintaining my blood sugar at good levels. Let me know if you’re interested in chatting more, thanks so much!

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@EmilyMcKinney Hi Emily and a Warm Welcome to the JDRF TypeOneNation Forum! We are happy to see you here and we welcome you to continue reading and posting your “diabetes wisdom”.

Thank you for the compliment and YES, I’d be very happy to chat with you. During my years trying to live well with diabetes, I’ve had many, many peaks and valleys - right now finally managing my diabetes quite well. Hopefully I’ve learned from my many mistakes and won’t fall into those traps too often.

Looking forward to hearing from you.

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Thank you Dennis for the warm welcome! So glad I recently found this community support as I’m sure you know that Diabetes can be extremely overwhelming :frowning: Did you ever struggle with anxiety or negative thoughts surrounding your T1? Or worry so much about possible complications due to the disease? Sometimes I feel that I didn’t take care of myself well enough in the past and these things will soon “catch up with me”, which is starting to seriously stress me out. I don’t currently have any complications but the thought of it is terrifying! Was your A1C ever in the “red” zone? Thank you for your time Dennis, I really appreciate it! You are an inspiration and hope to know that us Diabetics CAN live a long and healthy life :slight_smile:

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My heart goes out to you, Parker. It’s been 25 years for me with T1D and I know it is so easy to beat yourself up. The boomeranging highs and lows can be so frustrating. My advice would be to try to get yourself to a place where your doctor (or a new doc) will support your request for a pump. One thing I have learned is that small numbers lead to small mistakes and big numbers big mistakes. I would try a high protein, low carb breakfast with 15 grams of carb instead of anywhere near 80. E.g.:An omelette with veggies, cheese, meat or whatever you like, but with only a piece of toast or better yet piece of fruit. You may still not get the insulin dose perfectly matched (because SO many other factors come into play like exercise or stress), but the swing between the high and low won’t be so big. Keep a record of your meals and insulin and your test results so you can figure out what works for you and what doesn’t. It was my experience that no one wanted to tell me I really couldn’t eat the same way I did pre-diabetes, but I’ve learned that I need to take charge and do what works for me. That has meant a lot of dietary changes. Good luck.

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Parker, you asked where to start, and it looks like you’ve got plenty of options. Make a list of them; pick the easiest one; and start there. Do something every day to achieve that; then pick the next easiest to achieve item. Doing something, no matter how small, will help you gain control. Bad diabetic? No! Like the rest of us, you’re in a tough spot, and it sucks. I’ve done this for 55 years and at times, I still feel as you describe. You’ll do just fine. Thanks for reaching out.

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Hi Emily @EmilyMcKinney, my answer to all but one of your questions is YES, Yes and again yes, many times frustrated with swings from low to high and also from very high to low without any explanation. My most frustrating circumstance is when everything appears to be running just great and, then for no apparent reason, my BGL skyrockets.
The one question you asked, “HbA1c in ‘RED’ ZONE” , I not sure what you mean. I’ll say yes, it was 5.6 and the endocrinologist told me he never wanted me to go that low and counselled me on getting my BGL up to 6.0%; now two endo, acting independently, have urged me to run closer to 6.5% because of my age and duration of diabetes. I’m now wiggling between 6.2 and 6.3 every other three months. I was a [blind] participant in the effort to develop glycosylated hemoglobin in the early 1970’s and my readings had the scientists at Joslin scratching their collective head - for some reason my results didn’t fit under the curve. As far as I can remember, my A1c was never above the 7’s and that was when the basis was set at 6.5.

I have a few “complications”, but some of these could be just old age. Two that definitely are diabetes related are “Diabetic Retinopathy” diagnosed in 1966 attributed to total disregard for diabetes care and living a reckless life; I’ve written a lot on that. The other is “anatomic neuropathy”, mostly seen in people with long-term diabetes in which blood muscles/arteries narrow themselves and restrict blood-flow; I rarely feel the more common peripheral neuropathy common among PWD felt as tingling and burning feet.

The negative thoughts / thinking has really bothered me many times over the years - really terrible at times. My “negative” thinking influenced my decision to not bother saving for retirement because I had convinced myself that I’d never live until retirement; I changed my mind about this when I was close to 60 and then continued working until the first day of my 70th year. I have developed a very positive attitude, I accept the “burden” of diabetes and any other ailment and live life to the fullest. I share life and talk openly and right now the happiest I’ve ever been.

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Dennis,
Thank you for your response and thoughtful words. Very glad to know we have this support group, it’s pretty great. Sounds like your doing very well these days, so glad that you are at your happiest! Very encouraging to say the least.
The “red zone” was referring to the A1C test, anything above a 9.0 (I believe) is considered “Out of control”. I was there once and never want to go back!!

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Emily @EmilyMcKinney thanks for educating me on A1c “red zone”; I had never heard that before. I’m happy that my A1 hasn’t been up to 9% recently although I’m certain that if A1c was around when I was in my late teens, and 20’s it would have been there.

I’d feel yucky with my BGL at that level - a 9% A1c means an average BGL of 0210 mg/dl BG over a period of 90 days, 24 hours every day.

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Hi @EmilyMcKinney and @Dennis. You had me curious. I used to be somewhat familiar with what ranges those A1C numbers covered. I tend to range in the low to mid 7s, which a doctor said he would accept a while back since I can tend to go low (I know, it could be better since I use a CGM but that’s a separate discussion). I did an online search and there was some info from WebMD - you have to scroll through a bit to get to the chart with the ranges. My highest that I can recall was 8.0. Got that baby down to my usual range at my next visit, and am starting the process to upgrade to Dexcom G6 and Tandem’s ControlIQ.

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Hi Dorie, A1c is a unpleasant way to keep score. Normal at my lab is 4.4 to 6.0. The normal ranges actually vary from lab to lab but Labcorp is consistently 4.4 to 6. I’m usually at 6.2 to 6.7. The lower a type 1 goes, the more frequent and more severe the hypos are. It’s no wonder a endo would ask us go go higher so we can avoid killing ourselves.

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Agreed. You may have some lows that are balanced out by highs but it’s not the same as remaining in range as much as possible.

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Hi Parker, I’m 56 now, diagnosed at age 8 so it’s been a lifelong struggle. The good news is that even now I have NO diabetic complications. I try to maintain good blood sugar control, it’s very difficult- just keep trying & do your best, Feeling hopeless/depressed is totally normal, but don’t give up because then the disease wins! I’ve been using the Abbott Freestyle Libre for 3 years and it’s fantastic. The newer insulin’s are also a huge improvement. So things are getting better. Please don’t give up-don’t aim for perfection, just improvement.

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Hi parker.
With my experience of feeling this way and I’ve had it for almost 12 years now. You have to not let having it bother you. Acceptance is key. Once you accept having type 1, everything afterwards comes so much easier and more routine. I would recommend getting a dexcom so that you constantly have your numbers without having to remember to scan. I know it’s hard because I’ve been there too, but you just have to get up and change things. And change your mindset about how you manage.

I hope this helps

Sarah