Help beats Sympathy, anyday

General
1

I'm a 16 year old Insulin Dependent Diabetic. Was diagnosed at the age of 2.5 years. Needless to say, it's not been an easy journey. But I've coped with it fairly well, if I may say so myself', or atleast was coping well.

Lately, I've become extremely frustrated with it. It drives me insane. I've been trying to control this thing for what I remember as my entire life, but it just doesn't end. And now, my control is not satisfactory. My readings are out of control. I don't take my injections on time, or with correct doses. I've almost stopped caring. I can't talk to anyone about it, all I get is sympathy, which I don't want. I could use some help. My mood is affected, duh. I'm angry, I'm low, I'm almost depressed. Yes, I still go about my routine and smile at people, but I've overdosed on insulin twice in the last week alone. I know the hazards. Makes no difference to me. I'm losing hope. I don't know what to do. Anyone with experiences that are similar, any guidance, anything? I could really use some help. 

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Every person with diabetes experiences this at some point.  It's often during the teen years. When you're young your emotions are more intense.  Diabetics are more prone to depression too.

It sounds like you're putting a lot of pressure on yourself to be perfect and are frustrated that you're not.  Diabetes is a marathon, not a race.  You need to figure out how to make it fit into your real life.  It helped me to see my meter just as a tool that tells me if I need to take more insulin or drink some juice.  It's not my judge.

Doctors and people without diabetes don't get what it's like trying to manage D all of the time.  Be confident and have peace that you're doing the best you can right now.  

Frankly, I never could get great control with shots.  Have you ever thought about a pump?  I still have highs and lows sometimes, but not as often and with a pump it's not usually a mystery why my blood sugar is off.  I don't feel out of control anymore.

I was diagnosed at 4 and have had diabetes for 35 years.  Through my teens I had crazy high A1cs and was a mess who ignored my diabetes most of the time.  But thankfully I eventually realized that just because I have diabetes doesn't mean I am destined for complications and a shorter life.  

Now I'm almost 40 and I don't have an exciting life, but I have an amazingly good life.  I have a wonderful husband who loves me and is a good partner.  We have a handsome and intelligent non-diabetic son who is a blessing to me.  I'm good at my job and have great friends.  Life is not perfect, but I couldnt' ask for more.  Diabetes is an important part of who I am.  

You have a whole life ahead of you too.   Know that the frustration you're feeling won't last forever.  You're not hopeless and your diabetes isn't either.  I'm a Christian so I believe God has a plan and purpose for every person.  Diabetes will probably be a part of your life (unless there is a cure found someday) but it won't keep you from living a good life.  

Take care. -Jenna

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Amen Jenna! I was diagnosed when I was 14 and I can echo everything Jenna said. Frustration is a part of who we as diabetics live with daily. Growing up the people in my life that should have been educated were not. Even now, with my daughter recently being diagnosed, I deal with what I call “ignorance” not because I’m angry, I got past that a long time ago. But because it is unbelievable to me that folks without diabetes are so quick to offer advice on what Aunt Wallet did to control her diabetes. First of all, you are you. What it takes to control your sugars are way differant than what Aunt Wallet has to do. Doctors can be very judgmental as well. I had a doc say to me once “why did you do this to yourself?” Don’t give up kiddo. Life is out there waiting for you. Jennas suggestion to look into a pump? Do that. At least check it out. I am so happy with mine. It gave me my life back.

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Jenna.

Thank you. So so much.

All of what you wrote there, it was what was going on in my mind all this time. Its great to know that there's someone who gets it, who's been through something like it. I did, of course, realise that there were other people who'd been through this, but just listening to someone say it out loud for real makes all the difference, if you get what I'm trying to say. I've  been trying harder. Things are better. About the pump- I've considered it, but it's not really an option due to several reasons.

I'm not overdosing anymore. It's not easy, but I've convinced myself that I can do this. It's just that the people around me- Gosh! They really have no clue. And all the uncles and aunties who are diabetics keep telling me how it's all going to be fine, and how well they've dealt with it, whereas what it really comes down to is that they got diagnosed at the age of fifty, and are on tablets, not shots. Anyway, that's fine. It just gets frustrating to have nobody to talk to. The doctor- well, all he cares about is my A1c score. Anyway, I think I'm going to be fine. I'm sure it's gonna get better. :)

Thanks so much, again. It makes a lot of difference. :)

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brad68der1-

" it is unbelievable to me that folks without diabetes are so quick to offer advice on what Aunt Wallet did to control her diabetes. First of all, you are you. What it takes to control your sugars are way differant than what Aunt Wallet has to do. Doctors can be very judgmental as well."

You said it! All of it- whatever's bothering me, is in those three lines.

Its not just the doctor who's judgmental, though. Its all the people around you, the friends, the teachers and even the parents at times. Well, all of them are very supportive, and I'm sure they only have my best interests at heart, but it's not that simple. The looks of pity in their eyes when they hear I'm diabetic, and the pieces of advice which, I'm sorry, but are of NO use, are the last things I could possibly want.

But still. As you said, there's a whole life  ahead right now. I'm gonna get past this. Thank you. Those three lines, the fact that someone put that into such precise words- it made my day.

Thank you, once again. I appreciate it. :)

p.s. super jealous of your A1c score.

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I've been T1 for 20 years (21 this December).  I was diagnosed at 11 years old.  I experienced and still experience the same issues you are currently going through.  I went through those tough teen years pretty much feeling alone.  I had a supportive family, good doctors, and friends who cared, but to me, I was the one who was different.  I had to test my blood sugar and take injections.  If I was high, I could not have what everyone else was having.  Everything I did seemed to be influenced because of my diabetes.  I got down alot, never diagnosed with depression, but looking back, I definitely was!  It took me a while to get past the "it's not fair" stage and just accept that this was my life, and I could either take control and enjoy it, or I could just give up.  I decided to tackle diabetes head on because I didn't like the way I felt if I didn't control it.  I looked long term.  I didn't want any of the nasty complications that can occur with this because I knew I wanted to go to college, get a good job, and have a family.  Honestly, I wanted to keep my body parts!  Because I had long term goals, it helped me realize that the day to day things that goes along with diabetes are important (i.e. bringing my meter with me everywhere I go, bringing a pack of lifesavers just in case, taking shots even in front of my friends, etc).  Those long term goals helped me stay focused on controlling it everyday.  Plus, I'm a pretty competitive person and so far, I've beaten diabetes.  My a1cs have been under 6 the past 7 years and under 7 since 1998. I've had this disease for 20 years and all my other organs still work, my eyes are fine (just saw dr today and got a great report), and am for the most part, a normal, healthy person.

After all that, my advice, and take what you want from my story, is to set short term goals and try to reach them.  When you reach them, reward yourself!!  The rewards helped me big time.  

I remember the first goal I set was to make sure I take my meter with me to school everyday because I would often forget it on purpose because it was a constant reminder that I was different.  I met it and realized hey, it's helpful to bring it to school with me because I can see if I'm high or low when I need to.  It may seem silly now, but it was a big deal when I was in middle school.

Diabetes is a frustrating way to live.  When you think you are doing everything the right way, something happens that can knock me back.  When that happens, I just step back, think things through, and come up with a plan.

Keep fighting and don't give up.  Yes you will get angry, frustrated, and even tired of this disease, but that's normal.  Enjoy the moments when you reach a goal because those are the feelings we need to focus on.

Sorry this is so long, but I'm passionate about this lifestyle. I've been this way a long time and will be like it even longer and I know the importance of encouragement and sharing the frustrations.

Something cool the jdrf is doing now is a nondiabetic can experience what it's like to be T1 for a day.  On their website, there is a link to sign up.  The normal people get text messages throughout the day explaining how they should be feeling and how to treat a high or low or something.  My wife did it and she said that she now has a greater respect and understanding of how I live my life.  

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Paul,

Thank you. That story. Your story. I don't know how to put this, but, um- it gives me, um, hope. And that makes it so much better. Thanks to the responses I've received on this, sure, my readings haven't improved a great lot, but my state of mind sure has, and that makes a lot of difference.

It's not too long. If I were to start writing about all this, I don't think I could stop quite so easily either. And all of it makes me feel so much better.

Oh, and about the experience thing that jrdf is doing. Do you have any idea if that works outside the USA, too? 'Cause if it does, I'll be sure to get some of my friends to try it out.

Thank you, again. So so much. :)

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No problem.  Glad I could help.

As for the texting, I'm not too sure if it applies outside the US.  Here are the directions...

text T1D4ADAY to 63566 and they'll get a confirmation code to submit.  After that, it takes a couple of days, then they'll start to get the text messages.  It was kind of weird hearing my wife and mom and brothers talking about what I experience everyday.  They all said it was an eye opening experience.

Good luck with things and keep your head up!  

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Doesn't work. :/

Thanks anyway :)

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I remember those feelings, I still sometimes still get them. I see a social worker/therapist and its helped me a lot. If it's possible for you to speak to someone like a social worker that may help :) I had to see a social worker, it wasn't out of my choosing to, but as part of my diabetes education program. She got me talking and figuring out what was on my mind and help me sort through the mess of emotions and taking care of yourself. It may help you too :) There's a book called Diabetes Burnout, maybe get it from the library or book store, the author is amazing and hes got some helpful stuff. Its a fun read, definitely not boring. He uses humour in his book as well as in his presentations

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Jenna I'm a new diabetic, 2 years with it and one of my biggest problems was how I saw my meter. My mum always told me its NOT a judge but a guide let it help you, not hinder you. I'm on a pump so a lot of the ups and downs have been eliminated.

Lovely to read your positive response :)

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@ajacobs- Well, on the contrary, I WANT to see a therapist, but that doesn't really stand out as an option at the moment. For that, I'd need to speak to my parents first, and I can't make myself do that right now. Still, I'm doing a lot better these days and hopefully don't need to talk to a therapist :)

As for the book, seeing that I live in a remotely small city in India, I really don't have high expectations about finding it here. I'll try finding an online version though.

Thank you :)

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Hey KanakKats!  I feel like my post should read, "been there, done that"....holey moley do I ever remember going through that. I was dx at 12 and I'm 33 now.

Here's what I did:  I said, screw the world!!!  No, seriously....I did.  I realized that I had goals and dreams in life and I was the only one who could make them happen.  I forced myself to accept my piece of crap broken pancreas and get my bs's under control.  

I was on the pump for ~10 years and hated it. I had insane lows all the time and highs were really difficult to control.  Not to mention having to disconnect it any time I wanted to jump in the pool or lake...but still, it was easier.

That being said, I would recommend looking at what you want out of life.  You're probably starting to look at colleges and your future.  Focus on your dreams and goals and realize the only way you'll get there is to get your sugars under control.  It's true force of will...and NOT EASY. But holy cow is it ever worth it - I absolutely promise you that!!!!

I also started running.  This was a major help (though buggered up the bs's sometimes so had to lower my insulin to compensate).  This is a HUGE stress reliever and helps lower insulin.  

No idea if any of this will help and it may not even help to tell you that I (and the others that have written) do know exactly what you're going through!!

Keep us posted on your life and how you figure it all out - I'd love to hear about it!!

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there's been a lot of great stuff said, and it's always good to hear from the d'vets (thank you paul, jenna and hodge) and how you guys cope would make a great book imo.  

I have done this since 77 and I was 12, so I do remember a "before time" . all I can add is this:  continuous fighting with something I cannot change will exhaust and eventually depress me so I don't fight with it anymore.  I had to adopt a "dont sweat the small stuff" attitude because if I am exhausted, I can't take care of myself.  I cant change what is, all I can do is examine my attitude and change my reaction to it.

the other thing that works is that after decades, I find I need to take vacations.  it might take the form of a more relaxed diet, or an actual "pump vacation", or it might just be allowing myself to have crap control for a little while, until I get my head back on straight.

the thing that works the best for me is doing what I can to help others.  no effort too small.  try looking in to a JDRF walk or ride or something.  Helping others triggers something in me and then it's easier to help myself.  

cheers - best of luck

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Wasn't there another young person posting here from India? Does anyone remember or know how to look?

Maybe there is a way to find them and make contact via this web site.

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I was diagnosed with Diabetes when i was 7, I am now 19. I think just about everyone who has Diabetes goes through this at some point or another, especially in the teenage years; the responsibility of Diabetes is solely put on you alone. Diabetes can be a burden and seem unmanageable but I promise it is not the end of the world.

Ramifications of you not taking care of yourself are putting a damper on the longevity of your life; Diabetes is not a punishment! All your emotions are being exacerbated by the roller coaster your body is one caused by your numbers. If you get your numbers semi-stable to a point where they are relatively the same you will start to feel a lot better. Your anger is something you have to deal with on your own by accepting the fact you have Diabetes and that is a fact that will not change regardless of you attitude. I can not stress how much you need to take care of yourself the ramifications can be detrimental neuropathy, loss of limbs, sight, etc. You already have Diabetes...you do not want something else on top of that!

I am no Diabetic saint by any stretch of the imagination! In time you will adjust to all the stress of high school, being a teenager, AND having Diabetes learning to juggle it all. I am here as you wise older sister giving you a reality check. I hope you will take all of this into consideration.

PS vitamin D3 helped me with my biorhythmic lows (depression)! Good luck!