The worst…the constant effort to watch what I eat. I don’t mind to a point but at the same time those foods are so darned pricey and I feel like a burden at times, as I have to take my testing supplies with me and I have had idiots stare at me…it stinks! Also the cost of insulin and lack of low cost options for the uninsured! This country needs universal health care ! It scares me I almost died from this and that can still die from this…
Hi Katie, it hurts me to read what you wrote. It hurts me for you and your child. I want to say something helpful but I can’t. I can’t imagine what it’s like to have to hurt your child to help your child. You help remind me that for parents type 1 diabetes comes with an extra special bag of challenges.
I agree, Katie that has to be so difficult…give him lots of love and kisses!
you can never forget it, this is the worst thing for me. You can play, run, love, sleep … you can try everything, but you allways think “what effects does it haveon my BG?” You’re allways under this sword of Damocles…
The lack if spontaneity, the horrid highs (hate them more than the lows), disconnect with my husband (he does not have diabetes and doesn’t understand it), and fear of complications of diabetes.
@ Donna I so agree with you! It stinks the worry of the complications!
Riva, you wrote:
Are there any things regarding your diabetes she is willing to be part of? Are there things outside your healthy regimen you still share? I think the balance is important. Then of course some people will swear their spouses are diabetes wannabees.
So the short answer is yes we share some things about diabetes, but the long answer is complicated. We have both shared changes in diet and she has made efforts to be aware of some things. She has joined me for some doctors appointments and come to support group meetings. But I started insulin in december and told her, yet it was only two weeks ago that she even asked why and cared to listen to the story. And while I suggested she got "gyped" she may still get lucky, she had an A1c last year of 5.8%, prediabetes and is conflicted by that news. And I know she is frustrated by wishing to exercise, but not being successful in making it happen. And you are of course right, there is much more to life than diabetes and we would all wish that we could enjoy all those aspects of life "despite" diabetes.
bsc, it’s interesting you wrote your wife has pre-diabetes. Maybe it is hard for her to see how well you’re doing and have adjusted while she may be facing some big fears about her future. Of course, I have no idea about your relationship, but since it sounds like she’s having trouble meeting you where you are maybe you can try to go to where she is. Sometimes a simple questions like, “Tell me what this all feels like for you?” is an opening where you can begin to meet.
The worst thing for me is knowing that it’s never going to go away…I’m only 22 years old, and was diagnosed on my seven-month wedding anniversary. For me, that means that not only do my husband and I have to wait until my A1C is under 6.0% before we can start a family (while all of our friends are having babies); I’ll probably also have to continue to work full-time after we have kids just so I can have insurance to be able to afford my diabetes care, something that never crossed my mind before. I can deal with all of the inconveniences, discomforts, and annoyances of having diabetes (most of the time, anyway), but it’s the major life-altering things that get me the most. The fact that it isn’t going to quit or take a break means I can’t either. As you said, it’s very much like having a second job trying to stay on top of it. It’s that level of control and balance we’re all trying to achieve…The point at which we can say, “I have diabetes, but diabetes doesn’t have me.”
Did I not say life is complicated? I often felt that being diagnosed with diabetes is a life changing event and that you can go through a grieving process, just like Elizabeth Kubler-Ross describes. The stages are denial, anger, bargaining, depression, acceptance. The first part, sometimes called D’Nial is hard. My wife was not told she had diabetes by her doctor, it is hard for her to accept a diagnosis from me. I need to let her find it on her own way. I do hope she knows that I am here to talk and help.
I hate never, ever having the freedom to live my life the way I want to live it. I feel hounded, micromanaged and controlled by diabetes. Everything from when I go to bed, to what I eat, to when I exercise…all controlled by an invisible hand at my throat, ready to throttle me if I don’t behave in a certain way. I usually try to not think about it because it makes me crazy. I just want to LIVE like I did as a child and young adult. Eat a cookie? Or three? Fine. Stay out dancing all Friday night after leaving work with friends? Why not? Spontaneously spend the night on someone else’s couch if it’s late and I’m tired? Go ahead. Now I’m a slave to pills, syringes, test strips, pen needles, refrigeration, carb counting, my CPAP machine, the clock ticking, ticking, ticking till my next mandatory task.
Yeah, I get sick of it.
I feel sad that I can’t eat normally. I can’t go out for fish and chips or a take out Chinese unless I starve for the day. I just feel abnormal and I hate it.
Those moments when I am alone with my boys, my husband called away to work, and I have to tell them I can’t read to them right now, my blood sugar is low, stuffing my face, and seeing the worry in my oldest’s (7yr) eyes.
It is a quick moment, bs comes up, we read. But for that moment, that moment that you want to hate the disease, but you’re too busy trying to figure out where you went wrong, misfigured, made the wrong call that got you to that low.
I so agree with you I so miss Doritos, and eating anyway I wanted to, I was overweight, but at least I could come and go as I pleased. Now I have to plan everything…that’s the part that stinks ! Going organic is expensive but tasty at least ! : )
Namaste, Cathy
The sick feeling I get in the pit of my stomach when I take my sons’ BG and it’s below 45, or above 300. Yes, I know what to do to “fix” the problem, and yes, I know that keeping a cool head and taking appropriate action will keep any serious health concerns at bay. Doesn’t matter – I still feel terrified, way down deep.
Elizabeth, it is hard to watch your kids go through this, as I have kids I find not showing how upset i am ( even if I am ) demonstrates to them they can have confidence and not be afraid, I know that sounds easy, but with practice a good "poker face " and breathing exercises will help. Good luck.
Cathy
It is just a pain in the butt. Sometimes I feel like it doesn’t let me be me. With the mood swings, the hardwork and uncontrollable A1Cs. The billion dollar question of will I live to be 30 or 40?? If I do, will I be whole? or missing pieces? Well for me is a burden, I just try not to think about it. But most of the times I wish I could be a regular teenager that wasn’t robbed of her childhood at an early age.
Constant awareness. Am I high? Am I low? How can I handle it without disrupting what I’m doing (teaching a class full of high-schoolers). I really need to pee but I can’t go for another 15 minutes. I’m going folk-dancing tonight – should I eat a few extra carbs for dinner? How do I politely pass up the delicious-looking goodies that people always bring? Is my weight staying stable? Do I need to cut back on carbs for a while (or forever)? I have a sore on my toe. Shall I watch it, or see the doctor now? My BG is high, and it’s bedtime – do I stay up all night trying to get it down, and be exhausted tomorrow, or do I just let it float high overnight? By BG is seriously high, and getting higher, now what do I do? How do I get the damn nurses to give me a shot when my BG is 388, and the next shot isn’t due for another 4 hours?
Wouldn’t I really rather ignore this mess?
Natalie you summed up my aggravation - the constant having to figure something out. Last night was one of the first nights in ages I didn’t test my blood sugar before going to sleep - I was just too tired. I had tested at 9 PM so had a fair idea where I was and that I’d be OK. In the morning, actually, I was. Part of that is 30 plus years of doing this dance, part was just plain old luck. I happen to be very disciplined in my nature and often wonder how people who are not manage to manage this.
By far the worst thing is knowing that my kids have an increased risk of developing T1DM. I was dx at 26 years old and I can deal with it. I couldn’t imaging having to do this with my 5 yo. Autoimmunity runs right down the family tree, I’m the only one with T1, so I’m hoping everyone will just stick with thyroid problems.