I'm a new member on Juvenation. I'm 24 years old and have been living with T1 for 13 years. Throughout my time with diabetes, I have had normal fears and emotions that go with the package. But the reason I'm posting today (and why I joined in the first place) is because over the past few days I've been experiencing overwhelming fear and anxiety about future complications. It's been constantly weighing in the back of my mind and I have been having trouble sleeping.
To give you a little insight into my situation, I haven't experienced any direct complications from diabetes (that I'm aware of) aside from some questionable illnesses (UTIs that led to serious kidney infections on two occasions). My diabetes in under somewhat poor control - I can't remember the last time that I had an A1C under 7 - but granted, it could be worse. I've been using an insulin pump for about 5 years. I test as frequently as I can remember to do but I do forget or get lazy once in a while and once in a while I even forget a bolus.
I might opt to talk to a counselor but I guess my reason for posting is to hear anything from others with T1 - whether you're experiencing similar feelings or have experienced them in the past, if you have suffered some of diabetes complications or any general advice. Even telling me your routines you might use to help you stay on track would be helpful. Anything goes really.Thanks in advance!
Have you ever considered seeing a therapist for your anxiety? It might be helpful to keep it from being overwhelming. Anxiety and worry problems are very common. They are nothing to be ashamed of and they are treatable with therapy and medicine too.
I find that mindfulness is helpful with dealing with worry and anxiety.
Thanks Terry. Yes I am considering it but in the meantime I was hoping to hear some feedback from other diabetics. Sometimes hearing from people who may have gone through something similar can be helpful too.
When I was in my late 20's I felt like a ticking time bomb with diabetes complications just around the corner. It was ironic because I'm not someone who worried much. But I'd had diabetes a long time by that point and for most of it had terrible control with A1cs of 14+ through my teens and 20's.
At some point I realized that worrying wouldn't cause my complications or prevent them. With diabetes knowledge is power. I read a book called "50 Secrets of the Longest Living People with Diabetes" that made me see that complications aren't inevitable. And I've been encouraged by the recent Joslin 50 Year Diabetes study. There are many people diagnosed decades before glucose meters and modern insulins were available who are living long healthy lives.
In the current era the life expectancy for diabetics can be just as long as that of non-diabetics. Heart disease is the #1 diabetes complication and it can be drastically reduced if you don't smoke, get exercise, and eat a reasonably healthy and lower salt diet.
Diabetic kidney complications have decreased in the last decade and are expected to keep diminishing thanks to ACE inhibitor drugs like Lisinopril. If you do develop kidney disease it is possible to get both a kidney and pancreas transplant. My co-workers friend recently had both transplants and is doing well.
Blindness from diabetes is decreasing too, because retinopathy can be treated if it's caught early.
Complications are arbitrary and they can happen. But know that you are an individual, not a statistic. You will have you own experience with diabetes and if the worst happens and you develop some sort of complicaton, you will deal with it.
I'm 39 now, have a child, and still have no major D complications. I need to start working out because I've gained weight as I've gotten older and have a sedentary office job. And I sometimes forget to bolus for a meal or miscount carbs and have a high. But overall I'm happy with my diabetes and feel like I'm in a sweet spot where it's reasonably well controlled and doesn't rule my life. My son is only 6 but I'm already looking forward to taking care of his kids someday, after I retire.
I trust that the stress you're feeling now will be just a phase, like what I experienced, and you'll have peace with your diabetes at some point too. Take care. -Jenna
T1 since 1977 Minimed pump since 2002
Thank you so much for sharing this. It is so helpful and very reassuring to hear - just what I needed.
Got myself into a bit of a rut after hearing horror stories from a type 2 regarding his family history. I seriously did not know about all these advancements (treatment for retinopathy, etc.) and this is encouraging.
I know I'll be sleeping better tonight. Sometimes hearing it from someone else in a similar situation with a bit of knowledge goes a long way. Can't express my thanks enough. :)
Ignore all the type 2 diabetic horror stories people try to tell you about their grandma/uncle or whomever. It's like the people who tell horrific labor and delivery stories to pregnant women.
And someday when you are pregnant you'll probably have concerned people pull you aside and ask if you've seen "Steele Magnolias."
I LOVE this video and post it often. It always helps me deal patiently when people share these "helpful" stories.
Thank you for posting this, Erin. I find myself relating to you immensely (although I am 23 and have had Type 1 for 10 years now). And to you, Jenna, thank you for YOUR posts! They were a great help to me as well.
Jenna covered a lot of the particulars from the medical research side (and well) - still wanted to share some of my experience. I have kept tight control- often out of fear. I work (and have worked) very hard to keep my numbers in a good range and it has been more than a decade since i've seen an a1c over 6. I was diagnosed in 1983, by the way. So - last year I went legally blind in my right eye and my left leg had some numbness... The whole way through those diagnosis and tests - I was having anxiety and praying it wasn't diabetes related... Prayers are answered, and I got a diagnosed with Multiple Sclerosis. I have learned I need to be more specific. ;)
My long winding meandering point is this: You can't predict. Early on I had horrible control and I knew people with better numbers who got some bad complications, where I got none. Then, I started worrying and I got really bad, diabetes like symptoms and it was completely unrelated. You can't predict.
You can: live a good life, work on getting better at whatever you're doing, care for yourself and enjoy the enjoyable moments. These are things that are always in our control. I think the counselor may not be an aweful idea but also remember that we don't get to control all of it - just some of the pieces and find a way to be at peace with both. I think Jenna is a great example of how to execute on this based on all I've read of her input.
I know it feels like you've been at this a long time but since the goal is to be at it a lot longer - be good to yourself. For me, it's testing often. The blood sugars I want to catch are anything out of range. If i test and my sugar is normal - well - I don't need to treat it so - I've wasted a test strip - it's okay - but the sooner I can catch myself leaving range the faster I can correct. I mention it a lot but it made a huge difference for the way I felt and that is - I started eating paleo along with my diabetes routines. It's not THE answer, it was AN answer but an important one for me. It made the peaks and valleys in my blood sugar more shallow and made it an easier ride.
I'm off to workout - I think i've had more than my share of lazy browse-the-web time (one of my guilty pleasures).
Find your bliss, embrace your joy, bloom where you're planted, play the hand you're dealt - whatever strikes a chord - love the moments you get is the entirety of my advice. I am always impressed when people find the strength to reach out when they need it and while I can't do much else from the sidelines, I am DEFINITELY rooting for ya'!
Amen to that, A-D. So beautifully expressed.
This year I will have type 1 for 12 years was dxd at 25.
The fears of complications were something that I was scared of right away because of my Aunt. She also had type 1 and every complication you can think of. At first the fear kept me on track with my diabetes. You could say I was the poster child for diabetes at one time but, something happened to me out of no where. Diabetes Burnout.
All I was thinking about was diabetes, and what could happen to me. I didn't sleep at night, became very depressed, wouldn't go out with friends. The wondering of what could happen took over my life. To the point where I was actually trying to cause the complications. I know that sounds crazy but in my head it was the only control I had.
I sought out help in 2005 and finally I felt my life slowly coming back to what it once was. It took A LOT of work to remember to bolus and check my blood sugars and trust me I still wasn't doing it as often as I would have liked but every day that I did was a huge accomplishment. I took baby steps.
I'm not going to sugar coat it, I have had way more downs than ups with diabetes. I think a lot has to do with being diagnosed as an adult. I was actually in a really bad diabetes burnout again this past year until I found out I was pregnant with my first child in March.
My a1c was 8.9 and I knew that I could harm the baby and myself if I didn't get it together, which brings up a whole other slew of possible complications. But, In two months I went down to a 7.2 and by the 3rd month I was 6.1. Lowest a1c in 12 years.
The reason I am bringing this up is because all of a sudden something clicked in my head. I mean a lot has to do with the fact that I have a growing baby inside of me but, it all started to feel easy for some reason.
The checking, eating right, bolusing. I actually said to myself out loud one day... why couldn't I just do this before?
For me, I suppose having a baby was enough motivation for me to get my act together. Better late than never right?
Try to find something that can help you relax. Reading, taking a walk, hanging out with your friends, going to the movies... When I wasn't able to sleep at night I would pop in some relaxing music which sometimes would help. Forums like this will help you feel less alone for sure.
Hang in there and if you need us we are always here to help!!
Dxd November 25, 2000, Minimed Med Pump and CGM
Find me on twitter, my blog, linked in
I'm glad that you made this post and that I had the privilege of reading it.
I go through the worrying daily. I'm a mother of a 4 year old little boy who was diagnosed at age 2. Being so young he depends on me and my husband to take care of him. My fear is that what if he has complications down the road from us not keeping his levels in the range most of the time. I know it's impossible to do, but we try our hardest. We want him to have a long productive life and be able to do what he wants to do growing up. The only issues we have with him are when he gets sick. Stomach bugs are what has us in the emergency room. Being a very determined and stubborn 4 year old brings me to tears every time that happens. I'm working through all this day by day. I know we'll always worry about him. Just like we worry about the other two non diabetic kids. That's just being a parent lol.
Reading some of these stories have helped me some. Thanks to all who have responded.
Oh, and for the horror stories from type 2's? Don't even worry about that stuff. When my son first got diagnosed the doctors told us from the beginning that loosing eye sight, limbs, etc. is most common in the type 2 diabetics not type 1 so I don't worry about that stuff.
Thank you everyone for these responses. I know I'm late reading them (for some reason I haven't been getting my notifications for this particular thread but I've been getting notifications for threads I haven't even posted in?). Anyways, these brought me to tears - in a good way.
A-D, you have such an admirable positive perspective. I am going to try my best to think like you do when it comes to the negatives.
Gina, congrats on the baby! I think in the last few months I have been doing just that - finding my motivation and figuring out what works. Knowing that I'm not perfect and that no one else really is can be motivation to do better in itself. Thank you for the insight. I really appreciate it.
Eddie's mom - what kind of stomach bugs? Are they diabetes related? I had a lot of stomach issues growing up but was never able to get a diagnosis as the doctors couldn't figure out what was wrong. Hospitalization is so hard especially as a diabetic because it seams like every illness under the sun can be "caused by diabetes" in some way or another. I find when I get sick is when I am most afraid and these fears and insecurities really creep up on me.
Again, thank you to everyone who gave me some advice in this thread. T1 is a constant struggle and it's so comforting to know that there are people I can come to for support.