What's The Deal?!

 Hello! I am a T1D,diagnosed summer 2012. I do not understand what the deal is. An unfavored disease just barged into my life. When I was diagnosed my blood sugar was off the charts. The stress is hard to get thru,and I would not mind some positivity. I always tell  try to tell myself "stay strong, you're doin' great!" but sometimes the fact is that it is impossible...I feel like I am constantly trying to hold the world on my shoulders. Although the fact is that it gives you rights.Dr. Sholls,CANDY(My favorite!),and to be able to feel like you can try to forget about it ...please reply.    -ununderstandable

Hey There!

We all have been there at one point. Why did this happen to me?

I was 25 when I got diagnosed with type 1 (12 years ago) and it felt as though my entire world just stopped in time. I was angry, sad and depressed for such a long time. I can honestly say years... Everyone would tell me how strong I was because I never expressed myself about living with diabetes. I never even talked about it at all. Until one day I broke down and cried for a week straight. This was after living with it for 3 years. When I finally started talking about diabetes out loud to people that loved me as well as a therapist it started making me feel a bit better. But, forgetting that you have diabetes is not really the answer. You can live a long healthy life and guess what...you can have candy, Moderation is key!! We are here to help you and to listen anytime day or night! You are not alone!!

My experience was different than Gina's.  I never have felt like talking about diabetes to loved ones or therapists.  In some cases it was unavoidable because they had to know because it would affect them.  Maybe I'm just not very talkative in general.  My reaction to diagnosis was pretty immediate.  I went into mild shock right away.  That was mostly due to my needle phobia.  I had a hard time picturing giving myself shots forever.  That has gotten somewhat better, but even after all these years I'm anxious around needles.

I guess I won't give you a totally positive message.  Having diabetes sucks imo.  But there are a lot of things in life that suck worse lol.  Everyone has some kind of problems in life.  At least with diabetes it is somewhat in your control.  It is important to have realistic expectations.  Some days you will have lousy control even though you are being just as careful as the previous day when everything was fine.  Don't beat yourself up when this happens.  Bodies are actually pretty resilient and as long as you're doing what you can, you are lowering your chances of getting complications down the road.  If your goal is to always be perfect you're doomed to fail.  Instead, just try to keep up with the basics and keep learning how your body reacts to food, insulin, exercise, stress, illness, etc.  Then use what you learn to fine tune your self-care.

You may not be able to totally forget about it, but you will find that in most activities diabetes doesn't make any difference.  So in that way you can focus on what you're doing and not worry about blood sugar all the time.  Also the regular maintenance does become more routine, so it takes less of your attention.  That can help you feel less overwhelmed, less like a "diabetic" and more like a bright, creative, energetic, kind, thoughtful, dynamic person...who happens to have type 1.

What specific frustrations are you having?  You mentioned not eating candy and Dr. Scholls.  Neither are part of diabetes.  You don't have to wear weird shoes unless you're having foot problems.  You can eat candy if you count the carbs and take insulin to cover it.  

Usually doctors tell you how to be a textbook diabetic who lives to count carbs and fill out a complete log book full of blood sugar readings between 80 - 120.  But that's not real life.  

You are going to have to learn about diabetes from what your doctor tells you, what you read in good books, and your own experience to figure out what works for you.  Some sacrifices are worth it and others are not.

It's also important to work with a doctor who is knowledgable about diabetes and whom you respect.  

What you're experiencing is normal and every person with diabetes goes through it.  But at some point most of us make peace with having diabetes.    

I would never have chosen it, but after having diabetes for 35 years it doesn't seem as tragic as it used to.  I still have occasional frustration with having to test or having highs and lows, but diabetes is just a small part of my life.  Most of my life is my son, husband, work, friends, and school.  And cheesey tv shows (sad, but true).

Good Books:

Think Like a Pancreas by Gary Scheiner

50 Diabetes Myths That Can Ruin Your Life; And the 50 Diabetes Truths That Can Save It by Riva Greenberg

Using Insulin by John Walsh

Pumping Insulin by John Walsh

50 Secrets of the Longest Living People with Diabetes by Sheri Colberg and Steve Edelman

www.childrenwithdiabetes.com/d_06_b00.htm

the deal?  if it was a deal it would mean you would get something out of it too!  this isn't really a deal.  

making sense out of it, for me, is just realizing that my autoimmune system made a left turn and ate my beta cells, oh and my thyroid (follicular) cells too.  leaving me with 2 choices, live or die.  I was always too big of a chicken s**t to choose die, so I live.  for many years I was angry - looking for blame and looking for reasons or if I did something bad, or whatever, but being miserably mad was not good for me or my relationships.  After years, and after divorce, bankruptcy, (play the sad country song here) I made a choice not to feel like crap anymore.  

for me it did help talking to other people with diabetes, and it does help me to do something to help, anything really, it doesn't matter how small or big or what it is - sponsor a JDRF walk, go on a fundraising walk, stay involved with online chats, research the disease, become a CDE, a endocrinologist, a bio-researcher, you know... whatever it is you like.  Helping helps me feel less like victim.

cheers