So I’m 19 years old and I was diagnosed with type 1 diabetes in early may of this year. It came as a shock as no one in my family has diabetes. I was in the middle of exams when I was diagnosed so it has not been easy and I’m finding it difficult to understand this illness. Ive been having frequent doctors appointments and i feel a bit lost in them. Im trying to still get a hang of taking my insulin regularly and not forgetting to take it or leaving it at home by accident. Food feels like the enemy because I don’t know what I can or can’t eat or if there are foods I should avoid. What would you suggest to someone like me who is new to T1D about getting to understand it better? Also does it ever get easier in terms of day to day?
You’ve come to the right place!! You ought to get lots of answers… In a nutshell, carbohydrates are the primary macro-nutrient that you need to think about – Carbs in most forms raise blood glucose and, without working beta cells to produce your own insulin, you have to inject insulin to manage.
There are a couple books you should consider that are very helpful. Gary Scheiners Think Like a Pancreas (available in electronic/Kindle format) is excellent and can help you understand what you’re facing and how to better manage. Another book, if you can get it, is John Walsh’s Using Insulin. Those two were a terrific starting point for me after I was first diagnosed.
And ask lots of questions here! Will help.
Hi @Fahima_Hersi and welcome to TUD! Lots of responsive and helpful people here-hope you stick around!
To answer one of your questions, yes it does get easier as time goes on. Four months is still VERY early days, so please don’t feel too discouraged. Can you tell us a little more about what your treatment regimen is? What insulin(s) you’re using and what you’ve been told about bolusing for carbs and that kind of thing? That would help us to be more helpful to you.
Anytime you have questions, feel free to ask. We may ask a lot of questions - remind us that you are new to this. Chronic illness is a life long learning experience. No one here knows what exactly your experience will be, but we will be happy to help where we can. Yes, it gets easier. It just takes time to learn. Don’t be afraid to NOT push yourself as hard in other areas until you have time to adjust to this. Consider taking less of a course load at school, if possible. Take time to enjoy yourself.
What he is talking about is that if you have diabetes for fifty years, you can be awarded a medal by the Joslin Diabetes Institute. So, you have to wait until you are 69, but remember to apply for your medal when you get there!
That’s very encouraging to hear.
I’m currently taking novorapid three times a day. I’ve only just recently started carb counting but prior to that I was taking 8 units of novorapid with each meal. I take 23 units of lantus at night. I try checking my blood sugar before meals and 2 hours after meals but most times I check it just before meals.
The problem I’m having though is getting the right amount of insulin because often I fall into having really high blood sugars or a day of hypos because I’ve taken too much insulin.
One thing I’m having a hard time getting my head around is the ‘sick day rules’ I still don’t really understand what I’m supposed to do if I get sick.
Also I will definitely check out those books, thank you for the recommendations
Hello like u I’m an only D in my family in the beginning it is a mess It dose get better I won’t lie diabeties sucks big time and in my opinion can be worse then cancer now for for some advice when it comes to food relax if u want something have it u just need to make sure u cover for it with insolin there is nothing out there that will kill u u eat it another bit I have to offer is seriously start looking up info on insolin pumps they r a life saver I use the onmipod
Lots of laughs, Fahima. You will continue to have problems with highs and lows FOREVER. That’s the nature of the beast. Don’t expect perfection, but you’ll get there.
I generally start by making sure that my Lantus dose it correct. One way to do that is to measure BG before bed and then check it again in the morning. If the number is within 50 points, I’d call that a success. (remember that your numbers will get messed up during your period and if you do something unusual like a bunch of exercise, so those days don’t count). Thats a good place to start. You might collect data that way for a month, just to see how much those numbers bounce around.
How are you feeling day to day? OK?
Fahima, I have been T1 for 50 years. I was 18 when I was diagnosed and like you, I was the only member of my family to have diabetes. To this day, there are no other T1s amongst my relatives. The good news is that diabetic medication has made huge advances in the last 50 years. You will have to work out (with your endo) how much insulin you need to cover your meals and keep your bgs in line. One thing I can tell you is that you won’t always have perfect bgs. You will have highs and lows, sometimes with no logical explanation. Don’t sweat it; it is the small stuff. If your sugars are high, do what you need to get them down again. If they are low, get some carbs into yourself. As you go along, you will get comfortable with what you need. I uderstand that this can be an emotional time for you too. It took me a long time to accept that I was diabetic. I hated when people made special “treats” for me or tried to anticipate what I might need. I also had, as I’m sure you do, people with no knowledge of the subject telling me what I should do.
With all the technology available, you have a much better chance of getting to be an old person than I did 50 years ago. I figured I might live to 45 or so, but look at me now! You’ll be fine.
Read the books, yes, but cutting to the chase:
Many doctors will say “you can eat what you want, just bolus for it” but there are some caveats to that. I think especially as you’re learning your OWN physiology and how it reacts to carbs and insulin, it’s probably easier to keep carbs to a minimum. There are some advanced techniques, like pre-bolusing, that help keep post-meal spikes reined in, but for now it’s simply a fact that the less insulin you have to take, the easier it is to control. (Bolusing for pizza is hard–I’ve had T1 for 33+ years and I almost never get it right. But every once in a while I’m going to have it, and over time I’ve evolved some rules of thumb of my own that keep it from knocking me too far off kilter. Mostly.)
Lantus for basal insulin is pretty decent–better than what we used to use back in the dark ages–but compared to what a functioning pancreas does it’s crude: it releases at a single, more-or-less constant rate, but a real, functional pancreas would be adjusting up and down continuously. Some people split the dose to get more consistent coverage, all depending on testing and checking with your endo as you go along. Generally they want you to get to where you have pretty decent control with Lantus/Novorapid (or Novolog or whatever) and then transition to a pump, which you can set to multiple basal rates during the day that more closely fit your individual physiology. And pumping has many other advantages as well. There are some bureaucratic hoops you have to jump through and I think it’s usually a year or so before you can transition to it, though obviously that varies.
Give yourself permission to take some time getting used to this. I remember when I was first dx’d, freaking out after eating at McDonald’s and discovering I was in the 300s–calling the doctor after hours, what do I do??? 'm I gonna die, doc? Well, no. Take a correction, test in an hour or so, calm down. Might want to reconsider eating McDonalds. For lots of reasons…
DATA is crucial. I hated this about T1. I’m NOT someone who is good at managing a checkbook (that was a thing once) much less keeping minute records of finger-sticks, levels pre- and post-eating, all that. Uggh. But the more data you have the better you can figure out your system and manage it. Fortunately for you, unlike 1983: apps!
Stay in touch here. Doctors know a lot, they can help you learn a lot about the basics, but by and large they don’t know what it’s like to live with this intruder 24/7/365 like we do. There are lots of things in The Official Diabetic Rules that need to be adjusted and examined in the light of real experience. There are tons of things I’ve learned from talking to people here that have helped me enormously, and that I never learned or realized in the couple of decades I was struggling with this disease before coming here. Number one is summed up in YDMV (Your Diabetes May Vary): every single one of us is different and reacts differently. Reading around here, seeing how we all deal with that, can really help give you a more accepting, less freaked out, and more in-control feeling about the whole mess.
Hey, I was diagnosed 11 years ago at 19 right before exams, so I can definitely relate! The thing that’s tricky is that there are so many variables to control for including timing insulin for the food you are eating, learning what things besides food affect your blood sugar (stress, mornings, the weather and basically just about everything else). I have never followed a specific diet, but there are certain things I just avoid because they are impossible to carb count for, and I will always end up high or low if I try. I would never dream of drinking regular Coke (unless I was low) or using real sugar. Artificial sweeteners and Coke Zero are good enough for me, and I’m wagering on aspartame taking longer to kill me than bad blood sugars. It’s a lot of trial and error really and don’t be too afraid to have lots of readings all over the place right now while you’re figuring out what works for you and what doesn’t (as long as your testing a lot and not putting yourself in danger). Many people do very well on injections in the long term, but I think it is difficult to get good results that way without significantly restricting your lifestyle or diet in one way or another. I have been using a pump for years and while it does have its problems now and then, I’d be even more afraid to go back to shots as some people are to try the pump. It certainly made my university days easier because I never forgot to take a shot, never worried about people seeing me take a shot (since I would just push a few buttons under the table) and always had insulin with me. I still find this the best feature of the pump, as I’m usually with other people, in public, on the subway, etc. during the day and would rather let my blood sugar run high than take a shot during these times. With the pump there is no excuse not to push a button in my pocket. You will also find that most foods digest over time rather than quickly, and the pump makes it easier to match the insulin dose to how food actually digests since you can set it to release a dosage over time.
This is so true, and every time I think I’ve finally nailed it, the next time is a total disaster!
I was in grad school, also dx’d going into the end of term exam and seminar paper period. It’s amazing how long “It’s just exam angst, really!!!” can keep you going. Right up to the edge of DKA for me. I had to take a few Incompletes that term but I was able to pull it together by end of the year.
One thing that will happen is you will start to predict when you are high and low. overtreatment for lows is many times an issue.
What I suggest is that you scrap some rigor and adopt others. For me, I find that I check my blood sugar before every meal. As for two hours after, I suggest you check it at regular times in the day. I check at 11:00 Am and at 9:00 PM regardless. I do this so I can get a high or low at the most crucial times for my body. you may already know those times for you.
Also ask us questions we love to help if we can.
Hello, Fahim_Hersi. You will make it. Others have given wonderful information and I really can’t add to it much. I will tell you that things do get better and easier. You will have days that you feel great about everything and other days not so much. BG highs and lows can really mess with your outlook. Try not to beat yourself up for not getting that perfect number. No one gets it all the time, Celebrate your successes, and you will have some. Information is power.
Good advice here. The general rule to carbs is that they absorb at different speed. Coke only takes 15mins and deep fried fries and takeaway pizza more like 4 hours. This is because of fat content. Fat causes food to get absorbed slower also nuts veg beans often don’t need to be counted as carbs unless u eat a lot. One other thing is ratio. most people find they need more insulin for the same amount of carb at some point in the day. Me it’s more at morning and night and less at lunch.
You’ve received plenty of good advice already. Be aware that our fingerstick meters use one of two numbering systems. It depends on what country you are located. In the US our blood sugar numbers are denominated in “milligrams per deciliter” of blood, abbreviated as mg/dL. Generally speaking, under 70 mg/dL is low, 70-140 mg/dL is normal, and above 140 mg/dL is thought to be high. These ranges are not carved in stone somewhere and your personal low, normal, and high ranges may vary some.
Countries like Canada and the UK use a glucose measuring system based on “millimoles per liter” or abbreviated to mmol/L. The low range is often thought to be below 4.0 mmol/L. The normal range is generally thought to be from 4.0-8.0 mmol/L, while numbers above 8.0 mmol/L are often considered high.
To convert mmol/L to mg/dL just multiply by 18. To convert mg/dL to mmol/L, divide by 18. Your personal low, normal, and high ranges may start and stop at different numbers. Also, your doctor may provide a wider range for you to target. This can help to not discourage you, especially in the beginning.
Try not to compare your numbers to others who you read about here. We try not to be competitive and when you think about it, your only competition is with yourself. Also, realize that a number is neither good nor bad. This is important to let sink in! It is simply information, like a sign-post, helping to indicate what you should do next. The numbers you view is not an evaluation to determine that you, as a person and/or diabetic, are good or bad. See these numbers as information only, not your self-worth. In diabetes, information can create power. Good luck!
I am starting year 56 of daily injections.
Being diagnosed was a hard thing but i was only 11 at the time.
For me Diabetes control is very much a balancing act and does take time to establish the fine line between how many carbs you eat and the amount of insulin required to keep to keep blood sugars at or close to "normal " levels.
Your life requires routine in almost everything you do.
The most important part of your routine should be to ALWAYS carry your insulin and monitor with you.
If you have any questions for me please let me know.
Hi there, and great reading all this wonderful info as reminder.
I was diagnosed incorrectly as type 2 , three years ago, and re-diagnosed as T1D 1 year ago this week. Probably the best thing i did for myself (im on injections) was to get a Dexcom CGM. Having the ability to check my BG anytime of the day, to set alarms for highs and especially lows, to not do finger pricks 5-8 times a day–made a huge difference in my life. My A1C is actually a bit higher for some reason in the three months since i started my Dexcom–but i feel so much more in control and do not fear going low. I thought wearing the devise would be a problem, but here I am on a beach vacation and proudly wear my Dexcom and answer questions about it and educate others about TD1. Good luck, it does get better.
Yeah I think my lantus is pretty good. I’m still getting used to the whole carb counting and I think that’s where I may he messing up on. Day to day it’s OK. Some days are better than others. I think I’m slowly getting used to the idea that this is something that won’t just go away and I do have to be vigilant. Unfortunately as of late I have been kind of lax with the whole diabetes and controlling blood sugar.