I was diagnosed 2 years ago with T1D and, at first, I was willing to do whatever it took to remain healthy. I have had depression since I was a child. I live in an area where doctors are not familiar with T1D and the nearest endocrinologist is over 4 hours away. I am at the end of my rope with this disease. I can’t eat ANYTHING without my blood sugar soaring and food is one of the very few things that actually bring me joy. I don’t know what to do. I feel completely helpless.
Diabetes sucks and add depression onto that and it really sucks. I struggle with that as well. There is no easy answer to missing the foods we enjoy Try to hang in there and message me anytime if you would like. It is difficult being isolated.
Mallory, no one can tell you what works for you as we all are different, but with time, you can figure out what will work for you. I have had T1D for 51 years now, and am fortunate to be very healthy and do not allow myself to be limited in anyway by this condition. You can do this, it takes discipline and knowledge. You are fairly new to this and it takes time to figure out how you will manage. I’m sure you know all the lean protein/low carbs stuff. It will get better over time, just keep moving forward. If you don’t have a CGM, please get one! Best advice I can give you. JC
In all the years you have had Type 1, have you spent significant time living alone? If so, did you worry about putting safety precautions in place? Any recommendations for young people living alone?
I’m so sorry you’re having such a hard time.
If you want to learn about a way of eating that will prevent roller coaster blood sugars from food, I recommend Dr Bernsteins book Diabetes Solutions.
My daughter has been having the easiest time ever since her diagnosis by following his recommendations of how to eat and using considerably less insulin, therefore reducing major highs and lows.
It actually also helps her overcome what she called a “sugar addiction”. She decided she had to stop using food as a reward and stop thinking of sweets and junk food as anything special because she saw that they were always the cause of her worst blood sugar days.
It’s not for everyone of course, but when it works for someone, it’s life changing.
Helpless - ugh the high blood sugar and love of fooood! I am a foodie through and through and have had diabetes for 13 years (diagnosed at 18) and STILL struggle with soaring sugars just after a nibble. And, to boot, I live in LA and my mother is one of the top diabetes educators in the area. And I STILL struggle every day with diabetes. I worked really hard to be close to great docs and I learned that in the end, nothing is going to make my sugars like I was when I had a working pancreas. I FEEL YOU!!! Do you like to cook? I have some great foodie recipes that I can share. Are you wearing a pump? The lonely journey of diabetes is tough - but we have people we don’t even know cheering us on from the sidelines like marathoners, everyone admires us but they do want to be us. IT GETS BETTER!! You definitely should read Dr. Bernstein’s book. Let me know if you want to swap foodie tales!
In the sixty-plus years I’ve had T1D, the best, the most helpful tool I’ve used is the Dexcom continuous glucose monitor. Once you begin using it, blood-sugar patterns begin to emerge, the effects of the foods you eat become apparent, and the connection between the timing of your meals and the bolus you take for those meals becomes more visible. I have a sister who lives in another state, who also has had T1D most of her life, but who is also a diabetes educator. She has been my best T1D coach. Having someone (especially a diabetes educator) that you can communicate with frequently and who knows the insulins and diabetes gadgets you use is perhaps as important (if not more important) than an endocrinologist that you only see occasionally. Perhaps this blog will serve as this “coach”.
I assume the follow up about living so long by myself with TID was asked of myself. To answer your question, yes I live by myself and have for large portions of my life. My recommendation to you would be much the same as Frankholby, that being, get a CGM if you don’t have one. It is the most revolutionary tool since insulin. I have always had good control (6.7-7.0 or so), but with the Dexcom 5, mine are around 6.0 now. More importantly, this was achieved through less highs and lows and much more steady glucose levels. And, the alarm when you go to far up or too low can be a life saver in the middle of the night. And again, frankholby is right on, you start to see patterns of food impact on blood sugar, you know very well how much insulin to take and how quickly it will work. Additionally, Dexcom is about to come out with a dexcom 6, that reportedly needs very little calibration and is FDA approved to be used to treat (dexcom 5 is not) due to it’s great accuracy.
We all have tricks to deal with lows. Mine is I have all the normal stuff, glucose tabs, etc., but I keep gatorade for emergencies. You don’t have to chew and it works very quickly.
And to re-address mallory, see it takes work, but you can live a long healthy life, it just takes practice and time.
And lastly, Shout out to you Frankholby for living for 61+ years with it! Way to go my friend!
Mallory, I’m sorry what you’re going through and have been through similar challenges living in a small town about 2 hours away from a decent endocrinologist. You don’t say how old you are…are you in a position to move to a larger area? Even a population of 100K or more likely has at least one endo. If you are still young, can you at least find an internal medicine specialist? They mostly work with Type 2’s, but at least they “get” diabetes and can work in a pinch. In 33 years of diabetes, I have only had 5 other Type 1’s that I was able to keep any significant connection with, and the one I had last year moved away so I feel alone once again. It’s odd…there are at least a million of us in the US, so where the heck is everyone? But forums like this help us stay connected, so please reach out as often as you need to find others of us that get it. There are no dumb questions, just put it out there and someone will help.
Also, when you say that food is a joy for you, I totally get that. Part of managing this disease is to understand there are trade-offs. There are T1’s who are very rigid and disciplined, and frankly they usually live the longest and with fewest complications. But most I’ve met also don’t enjoy life very much. They eat and do the same thing all day, every day, are afraid to travel, and don’t do spontaneous things. That’s not for me, I will accept the trade-off but I am disciplined in some ways, like certain meals of the day and times I exercise. But I like my treats, and when I do, I try to pick things where I can at least reasonably calculate the carbs pretty close and dose accordingly. Most of the time I do pretty well but might need a correction a couple of hours later.
Here are the things to focus on.
Learn to count carbs accurately. Read the labels on the back of packaged items, and watch those serving sizes because they can be small, so you might need to double or triple the carb count to be accurate. For non-packaged things, try to stay with low- or no-carb things like meat, cheese, eggs, nuts and green veggies. Then that’s one less thing you need to worry about. Spices, oil, butter, and sweeteners like aspartame are free! There are YouTube videos on carb counting that teach you how to visually estimate food portions more accurately.
Check your BG several times a day: Before each meal, at bedtime, and anytime you feel a little off. That should be at least 6x/day. This gives you the chance to correct any high BG’s so you’re not there for too long, or treat any lows.
Do periods of fasting to check how much baseline insulin you need, because you may need adjustments. Do it from 6am-noon, noon-6pm, 6pm-midnight, and midnight-6am (that’s the hard one) and check your BG every hour on the hour. Write these trends down and your doc can help you tweak your long-acting or basal rate if needed. Then from there you can start to work on figuring out how many carbs a unit of insulin will cover - it might be a different rate for different times of day. For example, I am insulin-resistant in the morning so my insulin-to-carb ratio is 1:8, but at night it’s 1:12.
If you’re not on a pump, you can do that in a few years once you are living on your own - they are wonderfully flexible to your needs.