Lost, need some help

Newly Diagnosed
1

Hi, my name is Jesse and I am 20 years old. I was recently diagnosed in April of 2107. Lately, I have had a hard time dealing with my emotions. I am either angry or sad. My boyfriend and family have been wonderful trying to help me through this, but when I am angry I push them away. No one I know has gone through something like this, so I found this website hoping someone could tell me how they felt when they were first diagnosed. The things I use to enjoy don’t interest me anymore. I feel like I lost a part of myself because my life will never be the same again it will revolve around taking my medicine, checking my blood sugar, and going to the doctors. But, I don’t want it to revolve around it I want to become happy again so I can become motivated to pursue my dreams.

During the end of March, I got mono. For two weeks I was really sick with a high fever. Finally, once the fever was gone I had realized I had lost a lot of weight so I went to the doctor and they drew some blood. Once they got the results back my glucose was really high. Eventually, I was diagnosed with type 1 diabetes.I have always been so active growing up, but now I have a hard time getting enough energy to get up and do stuff. Then when I do get up and become active my blood sugar bottoms out. How can I keep my sugars up when working out?

2

Hi Jesse… I am only a step mom to a 14 yr t1d, 2 yrs a going. Its been hard but she is starting to get the importance… I can mainly recommend to you to find a group in your area thru JDRF…we have and only I went now she and her father go to get suggestions and inputs from As I call the old timers with t1d–some are under 8, we learn a lot from all on adjusting and proper facts of how it really is. Also we have attended seminars and other activities with JDRF always extra info…and of course this site has helped by knowledgable people…I am sorry for your struggles but it get easier, take it slow and keep communications open…

3

First of all, Jesse, what you’re going through and experiencing right now emotionally is totally valid, normal, and legitimate. You’ve just been given a really shitty diagnosis that is going to change your life. You’ll have some new stuff on your plate that you have to deal with all the time, and the emotional side effects can really suck.

That being said, your life will absolutely NOT revolve around taking your medicine, checking blood sugar, and going to the doctor. You’ll have to be aware of your new friend, but you can live however you want to live. My diabetes has not kept me from doing anything I wanted to do. Playing sports, hiking, swimming, backpacking in remote parts of Asia for months. If you want to do something you first set a goal, map out the steps you need to achieve it, and work out a plan.

Right now, you want to figure out how to be active without your sugars dropping. This is going to be different for everyone, so it will take some experimentation on your part to get it right. And know that as your “honeymoon phase” continues and eventually ends (you can look up that term if you’re unfamiliar with it) the way you respond to insulin can change. But, what I have to do for certain types of exercise is shut off my basal (I’m on a pump–are you?) and eat about 10g of carbohydrates (I choose something like a granola bar or some dried fruit) every hour to keep my blood sugar in a good place. It took me a while to figure that out and I ended up with some pretty nasty lows for a while that can be scary. I am not a doctor, and you should consult a specialist with these questions. But, what I would do personally is about 15 minutes before “getting active,” test my BG and if it’s below 130 eat about 10g of carbs without insulin. Then test my blood sugar 30 minutes into activity and if my blood sugar is below 130, I would eat another 10g, and keep testing every 30-60 minutes and if I’m dropping at all, continue taking 10g carbs and do that for about an hour post-activity.

The thing to remember is, diabetes is manageable. The key is not to let it frustrate you to the point of making decisions based on emotion. It’s a numbers game. So, when you are getting frustrated, gather all your data (whatever you have: blood sugars, CGM data, bolus amounts, carb amounts, etc.) and make decisions based on the numbers, because that’s the truth!

I’m 25 and was diagnosed at 14. I still have times I get overwhelmed, unmotivated, sad, depressed, and all kinds of negative emotions because of my diabetes. It happens and that’s okay. You will soon get to the point where most of your diabetes management is in the back of your head and you don’t even have to think about it. It gets easier with time. You got this!

4

Hi Jesse,

First, your reactions are perfectly normal. Discovering that you have any major disease will most likely send you into the same grieving process as when you lose a loved one. What you do when you come out of the grieving process is vital to your wellbeing…for the rest of your life.

There are things that you can do to help you cope with the feeling of constantly having to think about food, or blood sugars, or when/when not to exercise. The single most important of these is to contact a nutritionist who specializes in diabetes…preferably one who doesn’t make you physically “count” the carbs. I was guided by a Type 1 nutritionist after my 1st year of being Type 1. What she taught me in 2 hours has lasted me a lifetime----I have never “counted” carbs and my A1C has stayed between 6.8-7.0. She taught me the “hand” method of eyeball-measuring food portions. She also helped me with awareness of the effects of different types of food for MY body (remember no 2 of us are exactly alike).

To free yourself from being tied to your glucose meter, look into a CGM (continuous glucose monitor). I recommend the DexCom for simplicity AND the ability to set the volume of the alarms. This keeps you from HAVING to watch the clock (altho you still must remain aware of time) and gives you alarms when your blood sugar rises or falls beyond YOUR desired settings. This not only gives you freedom to travel alone, but allows you to physically know if your sugars are steady, rising, or falling so you know when you must eat or if you can exercise.

The 3rd most important thing you can do for yourself is to ask about using the pump. That is something I fought off for 25 years. I finally gave in 4 years ago and I cannot believe the difference!! When I want to exercise, I check my CGM before and during exercise. If the sugars are falling below 120, I can set my pump to shut off for 30 minutes at a time so I’m not doing a double-do (exercise AND insulin).

Hang in there sweetie. YOU have to find what works best for you. Just keep your dreams in sight and it will become your drive to keep your sugars within a healthy range to be able to see those dreams become reality.

If you need to talk, we can figure out a way to get in touch.

5

One other thought…READ everything you can! A good start is “Think Like a Pancreas” which was written by a very smart Type 1 who also has a great sense of humor (keeps you engaged!).

Do internet searches on anything that crosses your mind and follow the threads. There are plenty of us Type 1’s looking for answers and getting answers online. You found this spot…keep reading the threads in all the subjects. :slight_smile:

6

Hi, Jesse, and welcome to the club. First, it’s common to get depression following a serious loss (for you, a loss of freedom to some degree). It usually lasts for a while but not a permanent event. You might benefit by visiting a psychiatrist and get treatment for it–usually an anti-depression drug, which he will have you on until the depression period is over with.

Second, while it is life changing, you have more freedom than you may realize at the present time. You will learn what you have to have on hand (glucose tabs) anywhere you go. Using the newest Medtronic 670g pump, you will attain more accurate glucose than ever promised in the past, and eat fairly regular meals; get used to carb counting, and inputting it in the pump. You will learn to take all this in stride.

Realize that though this is a permanent disease (barring a future cure of T1D with no active islet cells), you have not lost use of any of the vital day-to-day functions for actively living and enjoying your life. Soon, you will have adapted to the disease, and you can even enjoy the work of reducing your A1C blood measure, your percent time below a safe number (I use 80) and above, say 120 or 140. It can be like a sport, where a win is setting a certain goal and beating it.

The future, like next year, there will be choices in closed loop pumps (see the Artificial Pancreas thread on this website). Myself, I am waiting for the Tandem pump, which is teamed with the Dexcom continuous glucose monitor(CGM), because the two companies put out excellent products and have good, honest customer support. When I have tried to get honest answers from Medtronic, like why are there bubbles showing up in my pump reservoirs after two days, they play ignorant and, oh by the way, it must be my fault. They will not be honest about defects in their products. So I have stopped using their CGMs because they won’t admit they are inaccurate, and when my pump is out of warranty I will buy the Tandem closed-loop pump and be done with Medtronic.

Not only that, but the Dexcom sensors last at least two weeks, with extreme accuracy. So much so that the FDA last year approved the Dexcom G5 as the first CGM to be allowed to also be used as a glucose meter. But I need to use the glucose meter (finger pricks and glucose sticks) to calibrate the CGM twice a day anyway. But that sure beats six to eight times a day.

7

Hi Jesse, first off, I think you were smart to reach out on this board to find support. It’s overwhelming dealing with a diagnosis like Diabetes, especially with type I. I was five when I was diagnosed and I’m coming up on my 30th year in November. I know a lot of people have given input to go on the CGM’s and the pump. I personally just use needles and my monitor. I was on the pump while pregnant with my daughter and for a year after. For me, being connected to something 24/7 was a constant reminder of the Diabetes and I found myself more depressed about it. Whichever path you choose, to pump or not to pump, what’s most important is what works for YOU. It’s a lot to take in; learning how your body reacts to highs and lows, the food you eat, the right amounts of insulin. And once you feel like you’re beginning to understand it, your body can decide to start reacting differently, so then you have to adjust things again. Don’t blame yourself for highs and lows that happen. Take things day by day and know there are other type 1’s out there who are dealing with all of this too. Focus on what makes you happy: hobbies, people in your life, etc. Don’t let it change who you are, who you want to be, and what you want to do in life.

Regarding the exercise question, everyone is different. When I was on the pump I’d pause it while working out if my blood sugar was in the low 100’s prior to exercising so i wouldn’t drop too low. With long acting insulin, I’ll just check my blood sugar and if it’s a little too low before starting a work out, I’ll have a quick snack to keep my numbers up.
Sometimes it works, sometimes not.
Anyway, I hope my post helped a bit. Being a type 1 definitely has its challenges but you will be okay.

Take Care,

Rachael

8

Hi, Jesse.
It’s rough. I was diagnosed in 1999, and at first I thought I was going to die. I had a funky doctor who didn’t help, and my blood sugars were out of whack. Finally I got to a good doctor who told me really I was in charge, and I would come to know more about my disease and what worked for me than anybody else. It was my responsibility, she said. It turns out she was right, and she has supported me in everything since then. I test 10 times a day, and my A1C’s are in the 5.2 range. I hike, ride bikes, and work hard in my very large garden. I am 70 years old, and very healthy aside from T1D. My son, diagnosed at Christmas, is 30 years old and feels very much like you. I am hoping he will gradually discover he can still do the things he loves, and testing will just become a habit, second nature, like looking both ways before you cross the street.
When I work hard, or exercise hard, I stop and test every hour. I eat snacks and drink a lot of water. If I feel at all weird I test immediately. Sometimes I will have an unexplained crash, but I test often enough that I usually catch it. The few times I haven’t known it was happening I have luckily had a friend nearby who helped me. Three times over the years an ambulance has been called in the night, but now I have Glucagon injection available if I should pass out and somebody is nearby to use it. I guess I am more accepting of it than I was, since it is clearly just an unavoidable part of my life. I try to be smart, be prepared, take care of the things I can take care of, and realize that blood sugar swings will happen in spite of my best efforts. That shouldn’t keep me from doing what I love.
I hope you begin to feel more confident that you can live with this, and that people are here to support you, and that your fears are understandable and shared by many. Still, life is for living, and joy is waiting for you to find. Hang in there!

9

Hi Jesse,

Great that you found this community and had the courage to post. The beginning is very hard, but like others said it gets better! I have struggled with similar issues, but not until later because I don’t think I processed the grief in the beginning. Hopefully you get it out of the way now! Depression can be part of the process, but I suggest you find a professional to help you through this transition (if possible, specialised in diabetes).

In terms of your blood sugars, your body is trying to adjust and normalise (as much as it can!) again so it is normal to have unbalanced numbers. The beginning is all about experimentation and a steep learning curve. Keep close contact with your endocrinologist and diabetes support team.

I tend to eat very low-carb and that has helped me. I’m a certified health coach and you are more than welcome to reach out to me with questions! consulting.karuna@gmail.com
You can also look at my pinterest page for recipes, etc.: https://nl.pinterest.com/kimevatas/

Good luck and know this will not last!
Best,
Kim

10

Hi Jesse!

First off, everything you are feeling is completely valid and is something I went through as well. I was diagnosed at 25 (11 months ago) and diabetes has been one of the hardest things I have had to adjust to. My family and boyfriend were supportive and loving and I couldn’t do it without them, but I felt so alone for the longest time. I think the hardest thing for me was feeling like I could get out of the house and do anything. Every doctor had some horror story. (Seriously, it felt like no one had anything positive to say when I was first diagnosed). BUT you totally can do everything you want to!!! Take baby steps. Go for a small walk. Sit down a million times if you need to. Carry protein bars with you and find things you like that will raise your blood sugar. (for me, it’s graham crackers and peanut butter. I hate glucose tabs) But take some time and listen to your body. It took me 8 months to feel like I could go to spin class, and before my diagnosis I worked out all the time. But, after class, my bg was right where it needed to be and I honestly felt like I had conquered the world. Silly huh?

So my tips for working out, check your blood sugar before and after, bring a snack, drink lots of water, and listen to your body. It’ll take time, but you can definitely keep working out and living an active life. I’ve also invested in like 5 new pairs of running shorts that have pockets big enough to hold a luna protein bar (love the cookie dough flavor).

I think for me, the best changes in my world have been my Dexcom CGM and the omnipod. I use my iphone as the receiver for the Dexcom and have loved not having to prick my fingers a million times a day and being able to watch my blood sugar interact with stress, exercise, foods, etc. It has for sure made me feel a little more control when everything about diabetes seems out of control. And I love my pods. I hated the idea of a pump early in my diagnosis but have been using the pods for about 7 months now and they have been such a positive change. It’s not big. And it doesn’t get in the way. There’s no tubing. And I can totally hide it. I am 26 and wear crop tops so I feel like it’s a win-win. :slight_smile:

My other advice is to take it all in stride. I’m a type A person and love lists and control and success. And diabetes is hard. At first I would get so angry at myself for having high or low blood sugar because I felt like it was something I should have under control. But it’s not control on an every second basis. It’s control on a day-to-day, month-to-month, checkup-to-checkup basis. As a mom of a T1D told me, no number is bad, because every number is good once you know what it is and how to adjust to get it where it should be. Check your blood sugar often and check in with your doctor about your basal and carb ratios. It takes time to settle where your body needs to be, it’s been through a lot and will keep changing, so your medicine should too.

And my last piece of advice–don’t be afraid to tell people no. That something isn’t their business or that you don’t want to do things their way. Stand up for yourself and what you want your treatment to look like. Everyone has an opinion and will tell you what they think you can and can’t do, or even what you should and shouldn’t do, but that’s all BS. Because you can do everything. You can eat a cookie. You can work out. You can travel and play and still be 20, because you are and you should still get to be 20. And honestly, don’t be afraid to invest in a cute bag or pouch for your medicine. 99% of them were not my taste so I scoured the internet and finally found a pouch that works for me and I no longer feel ridiculous pulling it out at a dinner with friends.

This is a long, hard journey, but you are going to do great!! It sounds like you have a great support system and reaching out here is a great first step!

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Jesse,
You have gone through a lot in the past two months! Try not to be too hard on yourself. Your feelings are normal and it will take time for you to get used to managing T1D, but you will do it! You will learn and be healthy and active. Your dreams will become reality! Be patient with yourself and remember that everyone has challenges in life. YOU CAN DO THIS!
Lynn
Mom of 10-year old daughter diagnosed 18 months ago