It IS manageable - get on the ADA discussion boards - loads of highly experienced people there (just like here )I second this.
I live with a Type II currently, and my first spouse was a Type I-- diagnosed back in the days when "cause of coma" was the usual means of suspecting diabetes, and testing involved imprecise and expensive colorimetric comparison charts...
It
is do-able. Once you learn the quirks of the individual person's diabetes, that is... you can really control all of it. You aren't at anyone else's mercy in terms of management. It's just that the management is a lot more
complicated than it is for food allergy.
Having lived with both things...
Food allergy = simple, but pragmatically impossible to achieve management. I
do fear that DD will die as a result of simply failing-- just once-- to be suspicious enough of others. Not a good feeling at all... and I still never really relax even with her tucked in at night. Not saying that's how everyone lives, but we do.
Diabetes = complex, but theoretically achievable management... assuming that you never suffer from fatigue in terms of doing it day in and day out. (Yeah-- BIG assumption) I found that having a loved one with diabetes (and this goes for both Types) was MADDENING because they would get "lazy" about their choices. They
knew-- but just couldn't be "bothered" to do the right thing(s). In some ways that anger is MUCH worse than the fear in parenting food allergy. Managing well is really both too hard and too much of a grind for 95% of people with diabetes to do it right. It
can be done-- but you have to be very patient, and very diligent. Type II is more
predictable than Type I, in my experience... but the long-term stuff is every bit as scary... and the meds are terrifying because so many of them are too new to really have full profiles of side effects. DH has been on two different meds that he was later switched from because of really scary emergent long-term risks. The hard part with Type I is
doing it all right day after day... and being ready/willing/able to figure it out on the fly-- you feel like you're working in mission control a lot.
With Type II, it's in making treatment
decisions, because the risk-benefit is anything but clear for most of it. DH takes about four meds each day that frankly have no real proven benefit-- merely a potential, hypothetical one. Nobody really knows WHY certain long-term consequences seem to be linked to diabetes. Is it just blood sugar control? Nope, apparently not, since "tight" control doesn't necessarily prevent them well... and tight control comes with it's own price.
Anyway.
As for your anger toward your medical professionals and diabetes experts... OH YEAH.
If this is so EASY, then why don't YOU take over for me for a while, then, and tell me how easy you find it THEN... Yup. Same surreal feeling as being told "oh, it's only that you have to avoid wheat (soy... milk... etc)." SERIOUSLY??
Oh, well, if THAT's all... The first year is the hardest, just like with FA. Even worse, is that during that first year, a lot of kids are still in the process of BECOMING fully diabetic... and if you adjust to a honeymooning set of conditions, wow, what a rude awakening when those beta cells finally give out for good. Yikes.
BEST advice ever?
Build a routine, and KNOW that routine... use that as a scaffold to learn management as you go. My DH, for example, CAN NOT "run" for exercise. He just can't. It sends his blood sugar into a crazy-volatile oscillation for some reason. He requires
low intensity physical activity over a longer period of time. My first DH found that upper respiratory infections would send his sugars SOARING out of control-- to the point that he usually required hospitalization to stabilize.
The learning curve is way worse with Diabetes, and it's harder to train kids for compliance given that the consequences can be so far removed
temporally from the actions. The outcomes are also highly idiosyncratic-- some people can get away with things that others can't. (As noted above-- maddening as a parent.) That's where routine really helps-- because you can figure out that when X is in the presence of Y, then Z... and when X is NOT in the presence of Y, then M instead. Nobody else can really TELL you those things initially because the system you're trying to learn to manage is simply too individual and complex.
Blood sugar swings don't happen for
no reason... but it can sure feel that way initially. After a while, though, you learn to know which situations are likely to lead to more volatility, and you will know to be more vigilant then, and less so when things are likely to be more predictable.
One other bright spot, though, is that ADA has a LOT more on the ball with respect to advocacy of patients. They're at least a decade beyond where FAAN/FARE are. Treatment and practitioner understanding is also light years better than with FA-- you'll never be quite as alone as it can feel when you're sitting in a room with an allergist that knows far less than you do about your child's condition.
You can do it!!!
There is also a LOT more (IMO) hope on the horizon for Type I
cure at some point down the road, here, too. So it may really be true that treatment/management will look nothing like it currently does by the time that your kids are college aged.
Insulin pumps, even, have radically changed management (for the better).
One final word of advice from someone who has known a lot of young adults with Type I (my ex-IL's were instrumental and VERY active in a regional ADA chapter)...
please, please, PLEASE do not treat your diabetic child as though this is too hard, too complicated, or that s/he is "fragile/doomed/a victim" and needs "extra protecting" as a result of his/her diabetes. You can THINK those things (and probably WILL)... but you have to be able to give them space to make mistakes, and show them that you have confidence in their ability to learn self-sufficiency. Yes, it's
terrifying. I'd argue that it's the same exact KIND of terrifying as parenting food allergy, at least for parents who have low-threshold or MFA kids. I still regularly fear that when I say goodbye to my teen, it could be the last time. There's a part of me that never, ever forgets that.
But the alternative is a child who develops a sense of learned helplessness and fatalism that they will never shake; leading to someone who
cannot be independent (or, in all probability HAPPY).
PS. I debated whether to include this...
My first spouse died fairly young, and there's no doubt that his diabetes played a large role. BUT. He was a veritable poster child for how NOT to manage Type I for almost all of those 30 years post-diagnosis. He would go DAYS without checking his sugars, relying on "feel" alone... would eat junk and "wing" insulin amounts... regularly drank in excess (another thing that often resulted in HORRIFIC blood sugar swings), never learned to value "moderate" living in terms of diet/exercise, and quite frankly didn't take care of himself well at all.
Either someone else did it for him, or he didn't do it at all. His sugars
regularly crashed to 40-60, or spiked into the 500's. He refused to have regular A1C's done. Even I was no match for him on that score. Probably because he knew what they'd say, and he knew he didn't stand a chance if his mom and I
both knew what they were...
So why do I mention this? Because
he managed to do pretty much EVERYTHING wrong and still not sustain major brain damage or health consequences for well over twenty years. I knew him intimately for nearly fifteen of them. Some of that was luck, for sure. But some of it wasn't, too-- some of it is just that the really crazy-scary things
are the long-term ones.
"perfect" management isn't really possible.
"Excellent" management is hard.
"Good" management is not so bad, and honestly, with "good" management, I think that my ex would still be alive-- and he'd have been living with Type I for forty years.