How does it feel?

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#1

How does it feel to have Diabetes? I am very vocal about talking about my Diabetes, but there is one question I can't stand. How does it feel, that's it nice and basic. Do people really want to know my frustration, and worry?. Do they want to know my fear of sleeping, the anger I feel when I have no idea why my blood sugar is high then it should be or worse the anger an panic of a hard low when my last insulin injection was 8 hours before and I was fine an hour before.

Do they want to know the terror I feel every time one of my children goes through a I need a drink every 5 minute phase, or just the ticking fear always in the back of my head worrying which one if any of my children will continue the family tradition.Or do they want to know how much I hate the fact that i no longer look at food as "that looks good", but instead its "how many carbs is that" or "how much insulin will I need".

Do they want to know the panic of forgetting my meter or other supplies or worse doing out for an extended time and going to test and seeing that I only have one test strip or going low and having no tabs or a snack. What about the guilt of going low and getting mean and snapping at a loved one for some minor annoyance.

Or how about how much I love it when someone plays it off like, "Oh it's just diabetes". Oh yes why thank you my immune system has basically killed two organs, I have some nerve damage to my bladder and no matter what some place on my death certificate will say Diabetes. Do those same people want to know what it's like to jab my fingers 10 times a day or how much I love that look someone gives me when I take a shot in public?

Do they want to know they joy I feel to be alive. The pride of keeping my A1c down and Blood Sugar for the most part in control.(No lows that I haven't been able to treat myself and rarely highs over 180). The pride of seeing my children understand more then I did at their age.

When they ask how does it feel what do they want to know? Besides well it's life and I have to roll with it.

#2

really nice post, thank you for writing, I laughed the whole way, as I was nodding my head, "yep, yep, been there, know that one, oh yeah, that too"
Keep that head high, you're doing it right!

#3

Type1Gal I kept my feelings on cancer out as a friend of mine who just got finished with Chemotherapy has said one day joking "I may have cancer but if my Chemo works it's gone. You still will have to shoot up to live everyday."

#4

I want to ask them if they wake up every night to make sure that their son/daughter is ok, not in a coma, not at a high bg level for no reason, or just to make sure everything is ok. I too am so tired it the type2 commercials. What about the ones who can do nothing about their condition, like exercise or loose 50-100#'s? Don’t even get me started on the bodily damage, the constant thinking of what carbs are in food, or remembering the meter/strips. My son is almost a teenager, has had type one for 7 years this December, is a solid trooper, wants to be a soldier even though he never will be able to, and all I can think about is how he feels. God, why did you give us this disease? Why? Just know, we are all here for you and for each other. Maybe that was God’s plan all along. Take care and good on you for teaching your kids about this and how to deal with it. It will help. Keep the positive levels and keep on keeping on.

#5

Those of us who control their blood sugar 24/7 with insulin know what you mean and the feelings associated with this condition. Healthy people can not know how it is like. The idea that we control our blood glucose from minute to minute is total theory from the perspective of a healthy person. It is just knowledge and so little is obvious about our management. We seem to be doing fine and so I think they are entitled to ask how it feels. Even people in the honeymoon phase just get a taste of what it will feel like later.

But who is prepared to run a marathon for the rest of his life? Do they really need to know? By telling some of the truths you have mentioned they will be more worried than informed. We do deserve to be considered as being "normal" because we are investing much to get there. Thus I often tell my D story with more confidence in my control than is justified. I also leave out or play down many hardships because it does not help much to complain. Like you I think it is the optimistic outlook on the things ahead that will keep us going - so let's roll.

#6

I'd vote for roll with it.

#7

I agree w/ what Holger and others have said. It is definitely filled with ups and downs, but I invest so much in managing it that i choose to remember and share more of the ups than anything. I think depending on the situation and your relationship with the person asking, you could share some of the worries/concerns...but most of the time I'd say to roll with it and not dwell on those items.

#8

Mostly just venting I do roll with it. I just get fed with being asked "How does it feel". The only other comment/question that comes close in annoying me is "I couldn't give myself a shot, I would die". To which I recently told a vegetarian dog lover "You would eat your dog if it was the only way you could stay alive". Just been frustrated and stressed recently..

#9

Wow this was powerful and I thank you for writing it. I've been struggling lately and needed a good cry. It's hard to be positive ALL the time when this disease is so relentless. I can relate to every single thing you wrote. I remember when my daughter was 4 years old and I woke up from a nap to see her bending over me "to make sure I was still breathing". The lows always really scared her and still do at age 24. When she sees me testing she'll always ask if she can get me anything.

I can also relate to the "I couldn't give myself a shot" comment. I was diagnosed Type I at the age of 28. My grandmother had diabetes and before being diagnosed I can remember saying "I could never do that" as I watched her give herself an injection in her stomach. Never say never...we do what we have to do.

#10

Hey Anon. Jim. "How does it feel?" The only answer I would ever give is "Frustrated." (I might think, "Lucky to be alive," but I'd answer "Frustrated." Never worried about giving myself a shot; I take about 10 daily. (Threw a big fit at my pharmacy today when I got a new script for a month's supply of syringes: 1 box, that is 100 syringes. I get to use them about 3 times.) As for eating one or any of my dogs -- no thanks. Literally, actually, I'd die first. Oh, well, cheers!

#11

I too fell that way most times. I guess thats why I'm still a closet diabetic because of what people say and do, I find it hurts more to talk about it around people that just don't know what we go through especially when its your friends or co-workers. I fell your pain

#12

What a great post... I usually get the "what's it like" question and "how do you have sex with a pump." Seriously I have tell everyone it's like playing Rubic's cube and never completing the puzzle. It's going to a grocery store and wanting so many of those great fattening, sugary foods that the rest of society can enjoy and instead we head toward the broccoli..And whenever anyone gives me the flipping--"oh yeah a friend of mine had diabetes and she took pills. I always say, "Oh you mean the easy one where you can eat anything you want as long as you take a pill Diabetes?Yeah, I don't have that one. I have the one where I get to count, calculate, measure and stick myself up to 100 times a day one. As for the second question, I usually say, well I have never considered my husband a pump..LOL..

#13

T1Gal--Guess that is my point..No piece of candy is worth going through calculating and corrections. But good suggestion for the adventurers.

#14

Type1Gal I am the same way sugary stuff actually hits me less then things like rice and bread and if I do go high it's a much quicker spike. I usually save the treats for at work. If I am 80 or lower and physically active a candy bar will knock me up to 150 at the most and I'll be back down to around 110 in a hour and a half.

#15

Whew...This really was a great post as it just shows how passionate we are about ourselves and management. I do have the sweet snacks for those lows but I just don't go around eating them when I feel like it. I think it's unfair how we have to watch carbs all the time and we can't just eat anything we want, anytime we want without thinking.. It's funny because we are really all on the same page but even more interesting is "non-diabetics" would not have so much debate over candy and I think that really sums up this great post--How does it feel??

#16

Type1gal: so true :)

#17

I love this. thanks for sharing. The only one thing u forgot was. ohhh, u must have ate a lot of bad food when you were little. Yes, all that candy i ate gave me diabetes. Or i heard their is a diet out that u can follow and u wont be diabetic anymore. LOVE that One.

#18

Being LADA I I get that all the time or people assume I am T-2 and get the you don't look comment. It in some ways has made me learn more about T-2, not that at time I don't get touchy after hearing "you weren't that fat" comment. These are usually followed by "Type-1 not 2" and "See that guy other there" pointing at fairly skinny guy who is picking up a 150 lbs box. "He is Type-2 and a health food nut. I don't think you would call him fat now would you?"

#19

Don't be so offeded at this question. If someone could have told me how it felt I maybe would have been able to stear my doctor in this direction. I had been sick for a really long time..but my doctor never tested me for diabetes because I have no family history of it..I was finally sent to an endocrinologist and she tested me imediately...I am diabetic...and even though it is a pain to have to make good food choices and deal with this disease, it is really good to finally have the correct diagnosis. I now manage my life and I feel really good since. If someone with diabetes could have explained to me "what it feels like".....I would have gotten my diagnosis much sooner....we are not always asking how it feels to "deal with the issues"..sometimes we want to know what your body actually feels like..