Hi everyone. I am new to this site but I am 25 years old and was diagnosed September 2014 with T1D. At first I was doing great with keeping my blood sugars under control, counting every carb, and I even lowered my A1C to 7.0 from 16+! However, for some reason about a month ago I have hit a wall and just don’t care anymore because of constant high blood sugars. My endo told me I am out of the honeymoon period and that this is normal. But I am really struggling (emotionally) with this disease and feel so alone in Colorado Springs. I have reached out and joined T1 walking groups but everyone was much older than me and/or have had it for a long time so they seemed to have everything under control and I didn’t want to bother them with my problems. I feel like I can’t talk to anyone about how I really feel and about how frustrated I am. I don’t open up to my friends or family because I want them to think I’m ok and that I have things under control; not that I’m negative and having a “pity party”. But as you all know the numbers don’t lie and my A1C is now 9.1. My endo told me I need to keep reaching out because I do need help coping with the emotional piece of T1D. If there are any Coloradans out there, let’s meet up. I look forward to meeting all of you 
I feel like I can’t talk to anyone about how I really feel and about how frustrated I am.I'm not sure what the experiences of others might be. Some have really good support "networks" which seem to interact with very well. Others, myself included, tend to handle it on their own and not bring up D with others. One of the main reasons I don't talk about it much ... other than online ... is because I'm never really sure what to tell them. Short, to the point answers can be confusing to someone who is basically unfamiliar with D. But longer, more involved answers are, well, longer. And they also tend to touch on personal emotional aspects which I'm usually not really sure I want to shave.
Some older folks who have had D a long time either do or at least can appear to have things well under control. But I would expect what they are most adapt at is managing their D in a way that lets them slide more under the radar. No matter how old you get, the depression can grab on and pull you down. If you’re someone who is already borderline depressed it can happen even more often.
There is also something inexpressibly compelling about playing out the “I’m not diabetic” lie with yourself. Not thinking, not considering, not “taking care of yourself” can feel so … freeing? It’s a false freedom, but the feeling itself, while it lasts, is genuine enough.
Over time what I think some of us learn … and others of us at least become aware of even if we can’t learn from it … is that after whatever binge you go on, eventually you are still you. Personally I have a fondness for the way Buckaroo Banzai phrased it, “Wherever you go … There you are!” No matter how free you may have felt in that past moment, you still have to live in the same body with the same concerns. The only difference is that now you may feel like shite because of whatever you beat yourself up with.
True freedom paradoxically comes more from limiting yourself, from control. It’s hard to get your emotions around that because it feels just the opposite. And our feelings tend to run the show, or at least they do for me. But the more you learn how to work well within the constraints of the D, the freer you can be to do (mostly) what you want in the rest of your life.
Maybe that will help. Or not. But I hope it might.
I feel like I can’t talk to anyone about how I really feel and about how frustrated I am.
I’m not sure what the experiences of others might be. Some have really good support “networks” which they seem to interact with very well. Others, myself included, tend to handle it on their own and not bring up D with others. One of the main reasons I don’t talk about it much … other than online … is because I’m never really sure what to tell others. Short, to the point answers can be confusing to someone who is basically unfamiliar with D. But longer, more involved answers are, well, longer. And they also tend to touch on personal emotional aspects which I’m usually not really sure I want to share.
Some older folks who have had D a long time either do or at least can appear to have things well under control. But I would expect what they are most adapt at is managing their D in a way that lets them slide more under the radar. No matter how old you get, the depression can grab on and pull you down. If you’re someone who is already borderline depressed it can happen even more often.
There is also something inexpressibly compelling about playing out the “I’m not diabetic” lie with yourself. Not thinking, not considering, not “taking care of yourself” can feel so … freeing? It’s a false freedom, but the feeling itself, while it lasts, is genuine enough.
Over time what I think some of us learn … and others of us at least become aware of even if we can’t learn from it … is that after whatever binge you go on, eventually you are still you. Personally I have a fondness for the way Buckaroo Banzai phrased it, “Wherever you go … There you are!” No matter how free you may have felt in that past moment, you still have to live in the same body with the same concerns. The only difference is that now you may feel like crap because of whatever you beat yourself up with.
True freedom paradoxically comes more from limiting yourself, from control. It’s hard to get your emotions around that because it feels just the opposite. And our feelings tend to run the show, or at least they do for me. But the more you learn how to work well within the constraints of the D, the freer you can be to do (mostly) what you want in the rest of your life.
Maybe that will help. Or not. But I hope it might.
I’m glad you reached out to us. Diabetes is such a mental thing. My first few years during high school and college were spent in a state of pseudo-denial. I didn’t hide my diabetes and I always took my shots, but I barely ever checked my BG and ate whatever I wanted. Fast forward a few years and I read an article that described high blood sugar as having syrup pumping through your veins. For some reason, that was the unpleasant visual I needed to start the process of taking care of myself. But it didn’t happen overnight, far from it. It took about 5 years or so to really understand how insulin and BG responses work, and changing to a pump absolutely transformed me because I was finally able to set different rates for different times of day like my body needed. Now that you’ve had T1 over a year, your endo might support you in working toward that, but you’ll need to work on your management first.
For years I always called it “testing” my BG, and I rarely did it because I never even knew what to do with the numbers I was getting. There was no rhyme or reason to them, and I got frustrated and gave up. Someone told me to stop calling it testing, call it “monitoring”, which is true. I mean, who wants to take a test several times a day that they will often fail? Monitoring (or checking) your BG gives you information you can use to take action if needed. If it’s high, you take a correction dose (easy with a pump) or if you’re low, you eat something. The point is to try to keep yourself in something close to normal ranges as much as possible so your body doesn’t experience highs or lows too long. Pumps and meters allow you to download BG readings into charts that you or your endo can analyze to identify patterns. Don’t shoot for perfection, because that’s pretty impossible since our bodies are broken in an important regulatory way. But every point you can reduce your A1C is a huge achievement, not to mention you will just feel so much better.
It’s been 32 years for me now, and I’m still doing pretty well all things considered. I just got back from 2 weeks in Italy, and my diabetes didn’t hold me back because I was well-prepared, even when our flight got bumped and we were stranded there. You can still have a wonderful life, just takes preparation and staying on it. We never get a break from it, so sometimes you just have to give yourself one if you fall off the horse. Take a deep breath, process the emotions, then you’ll be ready to tackle it again the next day.
Hello. I have never jumped into a discussion on this site, but when I saw that you live in Colorado Springs, I just had to write. My husband and I live in Woodland Park during the summer and we both just love the Springs. I would love to get together with you next summer if you are interested. It is always good to compare stories with other Type 1s.
I am not a newbie at this disease we both have; I have been diabetic a very long time–48 years. But, I could still be better at managing it than I am. Even though my A1Cs runs in the 6.5 range, I still have highs a lot more than I should and also regularly go quite low. One thing I can tell you is, if your blood sugars are running consistently high, that will only make your depression worse. When I have had struggles with the highs, that is when I have just wanted to curl up in a ball and make the world go away. Then, once I get my sugars back down, I think, WOW, it was the blood sugars making me feel so crappy. So, I guess what I am saying is, do regular blood tests, work closely with your endo, and you will get your sugars knocked down. And, you will feel so much better when you do.
So, keep your chin up and keep talking to us on this blog. I would also be glad to talk to you by private email, so let me know if that interests you.
What I can tell you is that what your are experiencing as a newly diagnosed T1D is normal. For myself, I went through a number of emotions over a period of several years. I was diagnosed when I was 7 and we did urine testing back then. I hated it!
Fast forward and I have lived with this disease for over 40 years. I am a very independent person and enjoy the fact that my family is supportive but allow me to take care of my disease. I ask for very little help.
When times come where I am feeling emotionally drained from this disease, I reach out to my husband…just expressing my feelings about the situation helps lift my spirits.
I have recently been allowing a few friends into my circle because I have made new goals for myself. I want to run a half marathon. To do this I have to let others know what I am experiencing and I am glad I did.
Keep on reaching out. We’ve all been there!
faaaaaa! appear to have it under control! =) oh my gosh @morganjl - controlling diabetes is like trying to keep 3 BIG dogs in a bathtub! it’s a daily challenge. it is like juggling a watermelon, an egg and a chainsaw. it’s not flying at all - it’s falling in a “controlled” way during a tornado.
all trauma goes the same way: denial -> anger -> bargaining -> depression -> acceptance no one gets a free ride, and everyone goes through this “alone” meaning it is an individual journey.
good stuff by the others - I just want to add: what works for me is not to frame anything as “for the rest of my life”, I only frame things “one day at a time”. I take great care in finding manageable ways of dealing with these changes. I try not to get caught up in my head. Helping others helps me more than anything else, and this too shall pass.
I have had this a long time, I am not better, or smarter than you. pls keep talking about it.
“I have reached out and joined T1 walking groups but everyone was much older than me and/or have had it for a long time so they seemed to have everything under control and I didn’t want to bother them with my problems.”
Great that you have reached out to a group. As far as the bolded part above, I can say I have had it a long time (38 years). Every time I think I have it figured out, things go haywire. Keep trying is all I can do. Then it gets better and I think I have it figured out and then …
My suggestion would be to stick with the group and ask questions. I’m sure some of them would he happy to talk to you just I (someone whose had it a long time) and others here are doing.
Good luck.
Hi, I live in Colorado, I’m not in CO Springs, I am in Denver but feel free to reach out or send me a message!
“controlling diabetes is like trying to keep 3 BIG dogs in a bathtub!” I love that simile! Another good one I’ve heard is comparing a diabetic to a rundown home. Let’s say you have pets or plants that need a temperature-controlled environment. In the nice, new, state-of-the-art house everything is automatic. The house has built-in climate control. You program everything and it runs in the background 24-7 keeping you and your charges comfortable all the time without you ever having to think about it. But in an older home… Maybe the thermostat’s wiring is bad. Maybe the boiler’s broken down. Maybe there’s no central AC. So you buy a thermometer, a space heater, and a fan. You can check the thermometer as many times a day as you want, you can turn the fan or space heater on or off as many times a day as you want, and maybe - if you’re vigilant - you’ll keep your house more or less at the temperature you need. But every now and then you’re going to have an off day. You decide to go out at night and it gets colder than you were expecting. You decide to sleep in and it gets warm earlier than you thought it would. You and your charges will survive these short outbursts, but over the long run it starts to take a toll. Maybe your plants don’t flower as abundantly as you’d hoped or the leaves aren’t as bright a green as when you first bought them. They’re alive and healthy, but they could be so much more.
We all have off days, no matter how long we’ve been doing this. I’m 29; I’ve been diabetic for 22 years. A few weeks ago I woke up in the middle of the night with a blood sugar of 38. I snacked and by morning it was 550. My job is very physically demanding and a blood sugar higher than 300 makes it almost impossible to cope. I thought about calling out sick, but I’m relatively new and it was a Monday and I didn’t want it to look like I was trying for a 3-day weekend. So I tried to correct it and went to work like nothing was wrong. I honestly felt like I was dying all morning and didn’t understand why and didn’t know how to tell anyone without it sounding like I had messed up. It wasn’t until my lunchtime check that I realized what must’ve happened. My blood sugar had only come down to 440 and the only thing I could think of to explain that was accidentally taking humalog instead of lantus the night before. By the time my shift ended I’d gotten it down to 330. I went home, had dinner, and took my lantus a littler earlier than usual. By the next morning everything was back to normal.
I hope my story doesn’t scare you. That’s not why I told it. I want you to know that even us old-timers understand. We’ve been there and we’re struggling just like you. We’ve just learned some tricks over the years and gotten better at hiding it. That’s why we’re here: to share what we’ve learned. With dedication diabetes can be managed. Despite days like the one I described, I’ve managed to keep my A1c between 6.5 and 7.2 for years now. But it’s a fight and knowing that there are others out there helps me to keep going.
Sorry for the long response, but one last thought… I’m sure your friends and family love you and want to help. My parents and grandparents often check in after my doctors’ appointments to make sure everything’s ok. I can’t tell you how many times I’ve heard the question “You’d tell us if it wasn’t, right?” I’m certain that your family wants to be supportive, but they can’t unless you let them.
A lot of us in Colorado
I feel for all the people here. I’ve had type 1 basically my whole life “54 years” “long story” I had a stroke march 3rd 2015. Yeah I get mad, who wouldn’t. Don’t let others decide how you should feel. I’ve learned the key to "my"survival is ACCEPTANCE. I can’t change facts or people. I hate lows i hate highs ive had plenty of both. At least we have each other, do you know in the past it was called dying of consumption. The greeks said it was mythical the feets we could attain. I’ve done such things, and I know you have too. Fight the good fight. To run like a siphon never tiring tell theirs nothing left but the wind is a feet.
I would guess that the other T1 diabetics you walk with would be happy to help you out with your control and with your feelings. Naturally, there are 10 times the number of T2 diabetics, especially in this high carb world. But T2s can’t me nearly the help as T1s, because the causes and treatments are very different.
Please don’t be shy. Most everyone carries some kind of burden in life, and at least diabetes can be managed with the effect we can live a nearly normal life, with extra care. When I was a kid in the 50s and 60s, diabetes used to be called a blessing in disguise because it motivates people to live a healthier life. That is pretty much B.S. but the point is well made.
Are you just taking shots or has your Endo talked to you about getting an insulin Pump? I have been a type one diabetic
since feb 19,2001. and was having trouble getting my a1c levels back near 7.0 for a couple years then in 2005 I was
refered to a endo and within a couple months she got me hooked up on an insulin pump. I would talk to your endo about
maybe going that direction. it was the best decision I made since being diagnosed with the disease but I would choose it
again. there are many pumps out there and I started with Medtronic minimed. I am now using the onetouch vibe that has a
cgm{Continuos glucose meter} dexcomg4 platinum. which I have used since 2013. I am currently in the process of getting the Tslim pump made by tandem. you can adjust your boluses as you go each visit with your endo to get you back on track with the a1c levels.
I hope I have helped you in anyway. but when I was in your shoes at first I was very frustraded at first then after meting with
my diabetes team and endo it helped me out a lot.