27 year old newly diagnosed t1d here pretty desperate for support from those who understand. does this get any easier? after DKA in late february i have spent the last 2 months trying to get bs under control - had a good month, and now suddenly things seem to have changed somewhat - even raising insulin dosing I can’t seem to keep up with how high my blood sugar numbers are getting.
i’m trying – so hard – but this is tough. i’ll admit this week i’m starting to feel a bit hopeless and certainly overwhelmed. It’s so frustrating, especially after committing to a super thorough, super healthy eating plan to not see the numbers respond.
i’d love love LOVE to hear from anyone out there who has made it through this period. even reading a few past posts I’m already so impressed with how people manage this disease! at what point after diagnosis does it start to get a bit easier?
I was diagnosed with T1D at age 25 so I know EXACTLY what you are going through! So many crazy emotions right? We have all been through the rough patches and honestly it comes and goes. Sometimes you can be completely in range for a week or a month and then the next day BOOM! You did all the same things you did yesterday but, the meter just has high numbers. You are in a period where you will have a lot of adjusting to do for a bit of time. There is no perfect science to it because blood sugars never respond the same day to day. Stress and all kinds of other things have huge factors.
It is frustrating, It is overwhelming but, just know we are all here to help you, and have gone through it in same way! We are all here right? LOL So we made it!! haha
I am assuming you are on insulin shots at this point, but, there are other options to help you with your blood sugar management when you are ready. Insulin Pumps, Continuous Glucose Monitors, Meters that sync with your mobile devices. Talk to your doctor about all of these things. And be sure to educate yourself with as much information as possible to see which options are best for your lifestyle.
jylnn, this is a crappy awful disease to have and in my experience it just does not get easier - it does get more and more routine.
sorry to hear you are having a hard time. I had a hard time too. I went way more than 10 years without checking my blood sugar. I was afraid of doctors because I knew they were going to tell me I was going to die. I lived like this many many years. Things started to get better when I forgave myself for getting sick and when I allowed people to help me. it may sound kind of dumb, but the thing I was fighting was myself. I didn’t want to be sick, but by forgiving myself this “failure” - help came easier.
start slow, start manageable. becoming a model diabetic in 1 day is overwhelming and you likely can’t keep it up. when you get a crappy bs you’re proving you can’t do it to yourself it’s like a new years resolution to be perfect - it’s a setup for failure and a sure fire way to damage your self esteem - here’s another tip - I never strive for perfection, I strive to do things that are manageable in my life. I forgive a high bs, I even learned that my meter wasn’t judging me.
keep coming here, keep talking, help will come and you are stronger than you think you are. I am not that tough, and I am not that smart but I was able to do it - you can too.
Thanks Gina!! Wow, I cannot tell you how comforting it is just to hear that there are people out there who have gone through this. and are thriving!! thank you thank you THANK YOU. i really needed this today.
yes, i’m doing shots at this point, but I’m liking the sound of pumps so far. and continuous glucose monitors!! although I hear it’s pretty hard to get insurance to cover them.
but anyway, thanks. it was a huge boost today to hear from someone.
Hi there! I was diagnosed about 2 1/2 yrs ago, when I was 20 yrs old, so I still feel like I’m pretty new to the scene compared to others. While I have lots of advice, tips, and encouragement I would LOVE to share with you, I know you are already very overwhelmed, so I’ll narrow it down to three things I wish I would have known/realized sooner:
Exercise is your friend! Of course, it is very important to work with your CDE/endo to discuss safe ways to go about becoming more active, but I was SHOCKED at how much this affects by BG. I have made regular exercise a part of my routine, and I can tell a difference in my levels even when I only skip 2 days of working out. It doesn’t have to be intense - walking, yoga, biking, anything to get you moving will help your body move the glucose from your blood to your muscles.
Knowing = Controlling. They way I look at it, I can’t be in control of my BG unless I know what my BG is. That being said, I remember for at least the first 6 mos (if not longer) after I was diagnosed, I HATED testing. Every time I watched the meter count down, I wondered what bad news it was going to give me this time. Each test felt like a mini-failure. Now, I’ve learned that IT’S OK if a number is not what I expected/wanted. As was mentioned in Gina’s post, some days you do all the same things but your body is just not having it. I’ve (slowly) learned to laugh and say to myself “hmm… wondering what my pancreas was thinking on that one”
Find someone to talk to about your diabetes. This may be the most important advice I can give to someone newly diagnosed. Looking back, I think the hardest part about finding out I have T1 was not the changes to my diet, the constant testing, or the injections. The most difficult thing for me was feeling isolated from my friends and roommates. It came to the point where I wanted to talk about it with them, but they didn’t know what to say anymore so they didn’t ask me about it. I took this to mean that they didn’t care, which of course was not true! Bottom line: find a very close friend, family member, significant other, etc who you can go to and openly discuss your frustrations, triumphs, and emotions. It’s so important for your well-being!!
Phew, okay, sorry this post is so long! If you have any other questions, PLEASE let us know! We are all in this together and I am 110% confident you will become a rockstar at controlling this disease.
Hi thejessbear… sorry to hear you are overwhelmed… I am feeling the same. My daughter was diagnosed late feb this year as well and I feel your pain. We had a great first month and it is getting wacky… I do hear that is in part to the honeymoon phase but sometimes none of it makes sense. Hang in there… I think the hard part is fitting all the new stuff into our normal routines… the planning, the counting, the monitoring etc.
BK
Hi!
I was diagnosed just over a year ago, at 26. It’s not gotten as much easier as I was expecting since then (based on what I was told). It’s still a huge change and burden on my life. But I feel much more in control now, and I mostly know what to do to fix problems. Probably getting the cgm (a dexcom) is the biggest difference for me. There’s a big difference between deducing/guessing that something happened causing a change in blood sugar, versus actually seeing it happen.
I could share zillions of things I’ve learned since then, but I’d end up writing a book So let me know when you’re stuck against something.
Oh, btw, I had no problems getting insurance to cover my cgm (unless you count calling the company three times because they forgot to process my file :P)
I’m 30 and have been t1 for 29 years. All I can say is the previous posts here are fantastic advice. Just keep taking it day by day and try not to get discouraged. Each day is a fresh start.
Hello everyone. It’s so amazing to hear from other people who have to deal with this on a daily basis as well. I’m sure the rest of you know that feeling of being so alone sometimes. It seems like everyone else is so normal and you’re an outcast. I was diagnosed at 26 years old and to be honest it still pisses me off. It’s hard when you’ve lived your life a certain way for 20 years and all of a sudden you have to make these crazy changes. The best advice I can give is to exercise. I’m very big into working out and it helps control my blood sugar so well. The only thing to watch out for is the low blood sugars when working out. With that being said it’s nice to have a place to vent because people who don’t have this just don’t understand. It’s such a complicated condition because people assume everything is easy because you look healthy and not like a sick person. You can live an ordinary life it’s just a lot harder and most people don’t realize that. It’s nice to share some of these feelings with other people who actually get it. I think the trick might be to try enjoy everyday and not worry about what’s going to happen down the road. Easier said that done though.
Welcome to TypeOneNation! Don’t know if you saw my story above but, I was also diagnosed at age 25 so I know exactly what you mean. Exercise is key and can help you to be on less insulin too! You’re right you can live an ordinary life and it’s definitely great to be on a board like this to let it all out with people just like you!
I know EXACTLY how you feel dear. I was just diagnosed three weeks ago, and it gets JUST a TINY bit better every day. You can’t have a rainbow without rain, and it can’t rain all the time love. I don’t have any advice for you, because I’m still answering a lot of questions myself, but what I do have to offer is support. If you ever want to talk about things, message me. We can begin this journey together! Best of luck!
Hey Gina. I think what you’ve started here is amazing. It helps so many people who just want to vent and get stuff off their chest. Life is hard enough without a chronic condition. This site is a great idea and I really admire your courage. I want to somehow dedicate a career to helping people like this. Just gotta figure out what to do lol.
So good you found this site so you can talk with people that “that have been there”. Are you familiar with the 5 stages of grief following a death? That can give you a framework for what is happening to your feelings.
You will get everything organized - your supplies, your time, etc. It won’t happen over night but it will come.
There are 3 or more sites for TIDs on the internet where you can talk with people - it helps. Try the one with ADA.
Just thought I would say Hi. I was diagnosed when I was 21. I was a single mother of a 4 year old without any support from my family’s request her father. I was working full time. Both of my parents were deceased and my brother who had Type 1 had died just a few years previous to this from Type 1 at age 29. He was very young when he was diagnosed and I think things were much harder in his day. So I would say at the least, I was overwhelmed by the diagnosis. When I was diagnosed, Insulin was not pure and I had to do urine tests which didn’t really give you any useful information. I do understand feeling discouraged and overwhelmed and it may not sound like I am being very positive but…
Lfe is good. I am 62 and I am OK and things have gotten easier. Not perfect by any means but easier. I have had an insulin pump since they first came out and I have a Dexcom. Recently I started using Nightscout. Sometimes trying to keep my BG in a good range feels like trying to hit a moving target with a pea shooter or chasing my own tail.
Don’t give up or let this illness steal your happiness.
I am a mother of six boys whom i homeschool. I am always tired. I never feel good. I am 37 and have just been diagnoed 2 months ago. Is it normal to always feel tired?
@sixboys I have 1 child and I am exhausted, if I had 6 boys, I would not feel tired, I’d be dead. Normal is relative and I think you are under extraordinary stress right now. do you have any help? do you have access to all the medical support you need for the first year… like a CDE who you can talk to and a good endo?
I don’t remember life without T1D so first off I can appreciate how hard all this change must be.
There are too many factors that effect blood sugar so don’t expect doing the same thing to always get the same result. I can’t say it ever got easier but I’ve learned to figure things out and accept that there will be many bumps in the road. And a lot of the things I do like portion control, exercise, drink water, etc. are things that if everyone did, they would all be better off.
So let me know when you’re stuck against something.