My Story

April 24, 2017 will make 13 years since I was diagnosed with Type 1 Diabetes. I’m sure that many of you can equally attest to the fact that some days are up and some days are down. But after almost 13 years of up and down days, I’m ready to take this “thing” to another level. I’m ready to do my part to tackle this Type 1 diabetes.
You see, when you’re diagnosed at 11 years old; you let the doctors, your parents, and school nurses do all of the work for you. They tell you exactly how much to take, they prep and draw up your insulin and in some cases even give the injection for you. But as you get older, you realize that you now have to fend for yourself and manage your own diabetes for yourself about 75% of the time (w/ 15% being managed by the doctors).
I’ve read many articles about self-management of diabetes and how in fact, majority of the management lies in your hands; I have grown to see this and couldn’t agree more with this fact. While yes you must be sure to take the right amount of insulin, look out for lows, highs, work to prevent infections … etc. I believe you must also work to maintain your sanity. Does anyone else agree with this?
There have been so many times where i find myself SUPER stressed, depressed and “over it all”. I gather my thoughts and get myself back together …only to have another “stressed, depressed and over it all” phase. Thankfully I have a support system who is always there to back me.
13 years later you would think that I have accepted the fact that I’ll be living with T1 diabetes for the rest of my life, but what if I haven’t. What if I told you that I still don’t understand T1 diabetes, I still don’t feel as if its something I really will have the rest of my life. I STRUGGLE.
I realize it’s time for me to take charge of my diabetes and start the new year 2017 with a life style change. Working to eat healthier, exercise and overall strengthen my physical and mental health. I’m excited to finally be able to get this “thing” together so I can have more “Up” days than “Down”.

  • this is just a random rant* :slight_smile:
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I was diagnosed T1D at the age of 30. I’ve read that people who receive the diagnosis as a child must actually go through a separate grieving and acceptance phase as an adult. It makes sense that children and adults view life from much different perspectives.

This is a healthy notion. It took me about 28 years to finally take full responsibility and ownership of my diabetes. I finally saw my choices as the most significant influence on how well I did with my diabetes. I came to this conclusion after I retired. Not having to work for a living freed me up to give my diabetes everything it demanded. I discovered that diabetes was not a bottomless pit of neediness. There was actually a limit to all it required.

All that effort paid off as I started to incorporate new treatments into my habits. Most importantly, my efforts made me feel better, physically and emotionally. I could see in my diabetes numbers great trends. I was finally winning in this deadly serious game of diabetes. Winning casts diabetes in a much different light. I no longer saw it as some giant life-sucking burden but as a way that I could actively make my life better.

My only regret is that it took me 28 years to get to this point. You appear to getting there at a much earlier age. Good for you! Listen to your inner instincts on this. Now is the time to step it up a notch. Your older self will soon enough thank you for this significant commitment.

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It’s a fine rant @NeshaB, thanks for sharing it with us!

Seems like a lot of T1s who were dx’d as kids or teens go through something like this when they reach their 20s. My niece once-removed, the only other T1 in our big extended family, has been going through it in a pretty hard way this last year–I think she’s about your age too, 24. I was reading another post a while ago from a young woman who had just turned 21 and was having her first non-pediatric, all-on-her-own adult endocrinologist appointment. It’s like there’s this box full of T1 that your parents have been doing a lot of the hauling around for you, but now the universe is handing it over to you with a big “Guess what, this is for YOU!” grin on its face. “Oh you don’t want it? Sorry, it’s yours anyway!” There’s an aspect that’s kind of like going through the trauma of being dx’d all over again. Oh yeah, this really IS forever, just like they said.

I was 28 when I got T1, so I was spared this particular joy, but over the decades I’ve gone through something analogous a number of times. You get in a groove where you can handle it all pretty much on autopilot but then something happens–a life event that shakes up your behavior patterns or you switch to a whole new treatment regime that wipes the routine-ness away and some version of I can’t believe I have to do this and it’s never going to stop! seeps back in through the cracks. I call it “T1 Claustrophobia.” I expect the one you’ve been going through is the worst instance of that, so it’s great you’re already starting to put it behind you. Never quite goes away, but being mentally prepared is half the battle.

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One thing is for certain NeshaB, you are in good company. And you are absolutely right. This is yours to figure out, understand and manage. It is a good thing that you are coming to these understandings.

Personally, I believe that for myself (and pretty much everyone for that matter) a lot of frustration and anger comes our way because of unmet expectations. Meaning that we have a desire or expectation for a certain behavior or outcome. When those expectations are not realized we can feel defeated and discouraged or even get angry. This is a true thing for life in general. Having a realistic expectation (I am going to have to deal with this for the rest of my life) can go a long way towards resolving some of our issues. For what it is worth this is something that I find helpful to review for myself when I start to get overwhelmed.

Each of us has to find the things that work best for us individually. When we can find the things that fit most easily into our lives we tend to have more success with them. As opposed to being told what is best or given someone else’s outline of what they think success will look like for you. Make it yours, make it real and own it.

Then this is the perfect safe place for it. Rants R Us. :wink:

Indeed it does, and for some very specific reasons: no one knows your body like you do, no one else is there 24x7 to do the job, and no one else has as much at stake. The responsibility really does lie with each of us. “The buck stops here”, as a former President once said.

And it’s also a fact that each of us comes to terms with that according to our own personal schedule. The above posts give ample evidence of that. In my case, it took more than 10 years.

. . . and that’s our common journey. We’ve each been there, and will be again. It’s part and parcel of dealing with this beast. Whether it’s obvious or not, you have a great many friends right here who’ve been there and done that. We get it. We absolutely, positively, categorically get it.

That’s priceless, really beyond value. A good support network makes all the difference in the world. It’s a resource of ideas and answers for the inevitable bumps we encounter; and sometimes, the most helpful thing in the world is simply to be able to talk to somebody who really, truly understands what you’re wrestling with. That’s the biggest reason this community exists. As our founder puts it, TuDiabetes was created because no diabetic anywhere should ever have to feel alone.

We’ve got your back. Welcome to the family. :sunglasses:

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Thank you so much for the warm welcome and encourgement David. I really appreciate you all! :slight_smile:

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Thanks for the encouragement Randy. I appreciate the support. :slight_smile:

Thanks for much for the support and encouragement DrBB. Its always reassuring to know you’re not in this alone. I agree with the term of “T1 Claustrophobia” 100%! :slight_smile:

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Thank you for the support and encouragement Terry. I’m happy to have found a community of others who are able to relate to me and offer extra support while dealing with T1 diabetes. This is awesome! :slight_smile:

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Hi @NeshaB, I just found your thread. What a great feeling this is! I am so proud for you, and eager to see you venture in this direction!

Keeping my fingers crossed for you. Your friend Michel. I hope you will keep on giving updates on how you are doing, good and bad - hopefully almost always good!

You are so amazing. I was diagnosed at 33’and I feel like a toddler some days. I don’t wanna play!!!- you are an inspiration. Yes…I know you don’t believe that but you were dxd at an early age and look…you are doing so well. Thanks for sharing your story and stay strong. You are more amazing and awesome than you realize. Happy New Year

I’ve had “burnout” several times over the years and I’m type 2. I just go through times when I don’t want to talk about, think about it. I go into denial for months at a time doing untold damage. I didn’t think type 1s had that luxury but wow, maintaining good self care is hard work.