I saw a couple of links posted on another discussion board, so I clicked on it and it brought me to a ton of videos we could all relate to(dlife.com)
One of the videos showed high schoolers talking about diabetes, and a question was asked "what do you hate most?"
Now, I try to be positive about my disease, and I try to believe I was given this disease because I am strong enough to handle it, and there has to be some positivity that I can bring out of it; however, there are times when I HATE it.
I'm just curious as to what all of you have or had the hardest time accepting? Or what you hate the most?
For me, it's knowing that I have to worry about additional things that a lot of others (my family, friends) don't. I never hear my friends complain about medical bills, insurance, feeling up & down, high, low, etc. I have the same adult responsibilities as they do, plus some and a disease. It's that extra effort on a daily basis, the extra concerns, and the fact nobody else but those of us who have it REALLY get it.
I have accepted the fact I have diabetes; I'd get rid of it in a hearbeat if I could, but it has made me who I am. I just hate the fact it brings with it so many other stresses and a feeling of unfairness.
I miss those times when hanging out friends for the day, like at the beach, and I could just have a hot dog or ice cream cone, etc., walking along the boardwalk, on a lark with the rest of them.
I completely agree, especially "the fact nobody else but those of us who have it REALLY get it". I tend to HATE IT most when I am around family and friends. Where all the differences and issues really stand out. I just spent a week in Maui and found myself having a hard time. As type 1's we can go on vacations, but we can never take a vacation from this.
i know it.. i was just @ the beach. instead of really vacationing im thinking about keeping supplies cold, do i have enough on me in case i go low? how am i feeling? etc.
Yep. And in some places you have to worry about your stuff being stolen. So in those scenarios, what do you do with an insulin pump. I love playing in the surf, but if I do not have enough of the "right" tape covering the cannula it will not last long. If you eat low-carb, you have to spend more time and effort planning meals instead of fully enjoying the paradise you are currently in. This is all a pain in the butt, but to enjoy life we do not have many other options.
I hate feeling sick when I'm not actually sick. I hate the fact that no one understands. I hate not knowing when I'll need a medication change and whether it will work or not. I hate not knowing exactly what's going on.
But most of all, I just hate feeling like I'm at a disadvantage compared to everyone else.
The thing I find the most difficult to deal with is just having D- I lived most of my life without any major health issues and unaware I had D. Having to keep myself alive everyday on insulin is not fun, worrying about hypos/hypers/complications is not fun. I'm relatively new to it all and still cannot believe what happened to me last year, still have days where I say I can't believe I have D. I don't believe I was given this for a reason. I just try to do the best I can each day and hope over time I will adjust more and be able to do more things without bg swings etc., be able to live like I used to live more, without worrying about so many things each day.
I agree with what others have said. I hate the lack of spontaneity. I hate never being able to take a real vacation (in some ways vacations are more stressful than staying home). I hate days that I feel terrible from high and low blood sugar but no one around me understands because I look fine.
But what I hate most, I think, is that I HATE the constant change with diabetes. You can never, never, NEVER just assume you have things figured out and settle into a routine and relax a bit. It's always work, always keeping on top of everything, always having to make adjustments. I feel like I am always under pressure from diabetes that never lets up. The minute you let down your guard down for a minute your blood sugar can go completely crazy so easily, and (for me at least) the smallest "mistake" (or wrong guess!) can send me over 200 or under 60 in no time.
My "things I hate most" are similar to others: I hate that it has necessitated becoming more rigid, when I've spent years of my life working on being less so! I hate that feeling of being "a pain" or "needy" I get when I'm around others and have to insert my needs loudly. I also hate when the foods I can't easily eat are ones that in a non-D universe I would consider healthy! Oh yeah and I hate the loss of trust in the medical profession. I don't mind knowing more about Type 1 than my doctors, but that loss of trust tends to bleed over into other things which is not a good thing, especially with an aging body that is subject to "conditions".
Zoe, I don't mind loudly asserting what I need most of the time.. although sometimes I can be the opposite too- it's called being a dominant woman, lol
Definitely the lack of spontaneity and feeling like you just can’t ever have a day off from this! I am planning a trip to WDW for just my hubby and I (leaving the kiddos with grandma, yay!), but all I can think about is…how will I keep my insulin cold? Will I have problems with security at the airports? I’ve got to make sure my dexcom receiver doesn’t get wet on the rides. Can I wear my pump on the rides? (I’ve heard that magnets and g-forces on many are no-nos for pumps). Will I be low? Or high? Will my legs and feet get too tired? Sore? Blistered? Even stuff as silly as where to wear my dexcom so it’s not smushed/rubbed/torn off by the ride restraints (I wear it on the top of my thigh, but it seems to be potentially intrusive no matter where). And to top it off, my endo, the only one I’ve had in my adult life, is retiring in three weeks! Grrrrr… I wish I could put food in my mouth without having to think about it in advance, or whether or not I should even eat it in the first place. I wish I didn’t feel like crap because of a day of running high…or low. I just want one day that I could leave it all behind
Phew! Thanks for the opportunity to vent a little!
"I wish I could put food in my mouth without having to think about it in advance, or whether or not I should even eat it in the first place. I wish I didn't feel like crap because of a day of running high...or low. I just want one day that I could leave it all behind :)"
The one good thing is that thinking about food is becoming more and more common. There are so many other conditions besides diabetes that affect food and that are also on the rise ... food allergies, celiac disease, obesity. I'd say at least 50-75% of the people I know who don't have diabetes are very diligent about what they eat, for various health reasons. Or even those who don't have a specific health restriction but just want to be aware of and diligent about what they're eating (my parents are like this).
So, while I do find it extremely annoying having to check nutritional information AND ingredients AND weigh/measure everything I eat, it's sort of become more socially acceptable to do this, at least. I do find it a major challenge when eating out or when eating at other people's homes, though.
i needed to vent too!! so, you are more than welcome! lol. WDW will be fun, and you are going to worry about those things.. anybody will.
You will also get them figured out, though.
My last trip to a theme park was a blast, but my adrenaline was soo high my BS stayed high while I was there. Yours may be affected completely different.
At the end of the day, after keeping supplies cool enough, asking ride attendants to keep an eye on my belongings,checking BS often.. i remember leaving so happy and telling myself it was so worth it.
There is so much that I have adapted to since my dx. I have less stuff I hate about having diabetes than a couple years ago. And I tend to stress the positive: the ways that controlling my diabetes forces me to live more healthfully. That said, I still HATE dealing with family holiday meals. I dread going to Thanksgiving or Passover--these are carb fests. Family members (including those who should know better) often expect me to eat some of everything. I'd rather stay home and avoid the anxiety/stress these situations cause for me.
