Oh, the constant struggle between feeling sorry for him and frustration with him. I was trying to estimate it the other day, and it probably averages 4 times a week that Tom's glucose drops low enough that I notice that its low and he needs some form of sugar to bring him back to normal.

Can I tell you what number "low" is? No because I no longer demand that he test his blood nor do I force him to let me try to test his blood. I don't need to -- I know he is low, that he is unable to hold a sane conversation, that I wouldn't want to be in a car with him at the wheel.

And, this is when I am around -- who knows what happens when I'm not around.

Then there is the monitor that goes off in the middle of the night, beeping to let him know that he is either high or low -- I never know -- I just get woken up by the beeping.

Well, in the immediate moment of his low, or at the time of the device beeping, I'm feeling quite annoyed. But then I think, how frustrating for him to try to do for his body what biology does for mine.

Its such a struggle. But then again, he is the one who slept through that stupid device beeping away and I'm the one who was awake listening to it beep away.........

Always a B

A little off the diabetes topic tonight
this was what I was thinking today....

So I know its been 35 years since high school (I know this because a school friend contacted me recently and told me). But I still think of myself as a B student. OK, a B person. Yes I have done a lot in my life. I have a good job, a nice home, a good marriage etc. I got a great education from a great school, just not quite the best.

Let me try to put it this way. If you are familiar with NCAA basketball championships...its like a team that always makes it to the sweet 16 but never gets higher. They are one of the best teams in the country but never quite the best.

That's me, its who I work for, its the colleges I went to, its the grades I got, its the money I earn, its everything. Never the top, always close. I'm smart, just not "Harvard" smart. Most of the time, I'm fine with this. But every once in awhile (like today) it gets really hard.

I just don't know where I fit in. So, coming home and talking with Tom, I wondered, do I fit in better here? Is he a B also?

No, he is an A, for sure. There he is working the newspaper crossword puzzle in pen and getting it all right! He went to a school with its team in the Final Four almost every year! He is one of the really smart ones! he manages his diabetes really really tightly. He eats very carefully, he has been out of high school 40 years and weighs the same as he did back then, he can out-maneuver me in any conversation that he wants to.

that's it, I'm going upstairs. Its a good thing I enjoy my own company.

And, then again...

So, here is a comment,

Will he be alive in 10 years? Probably - because they just keep pumping more drugs into him.

and

...in a man who has had diabetes for 33 years and is over age 55. He is way past exercise...and a few other things. I do believe he could stop the progression....but he's simply not willing to do anything towards that end. At best, he will take the pills his doctors prescribe. He eats everything and anything that he wants - including eating out at least once every day, sometimes all 3 meals. He will not exercise and most days he won't even walk to the mailbox.

That is really scary! The good news with Tom is that he eats well and exercises. The bad news is that he is always going low and drives like a maniac. Those two things together leads me to believe that he is going to die of a hypo-induced car accident, probably with me in the car.
But then again, I think about the former post that considered the idea that when they have so many lows, maybe they are also having many highs. The highs may just not be so visible.

Another time, I want to talk about the anger.

Stay?

So, Do I ever question whether to stay or leave?
I didn't for the first 10 years of my marriage
Back then he did such a good job of keeping his promises

He kept his glucose under control most of the time
He seemed interested in traveling and reading and doing all kinds of things

Then, he started having more medical problems
they began to get worse
then the sexual problems started -- that was the beginning
that's when I started thinking about it
because how can you leave someone just because the sex is gone?

It wasn't until many years later that I realized it was so much more
it was about the consideration, the caring
it wasn't the physical limitation so much as the lack of consideration of my feelings, my needs
he didn't seem to care about what I wanted, he only cared about what he wanted
or what he thought was appropriate for the situation
he still likes to make decisions for what he thinks I need
then he goes with that
doesn't ask, just goes forward

so frustrating!

now that the medical issues are worse -- not nearly as bad as some others note
no amputations, no liver failures, nothing like that
just hitting hypos -- below 50 -- at least once a week
sometimes driving, sometimes after or during dinner, sometimes in the middle of the night
he has a pump, he has a monitor, he has everything

I've given up trying to figure out the right numbers
that's his job not mine
he won't share anyway
when he is low, I will offer the sugar,
sometimes trying to get him to test, sometimes just trying to get him to take the sugar
often, if we are home, I will offer the sugar and then leave
leave the room or leave the house if I have to
it gets too difficult to stay

if its the middle of the night and he doesn't quickly respond, I call the paramedics

it gets too much

do I think of leaving? you bet?
do I get scared? you bet?
do I get angry? you bet?
do I get love him? Yes, though sometimes I wonder why

what else can I say?

DRIVING -- ME CRAZY!!!

Thank you all for your encouragement. It helps.
I'm learning a lot. From one person:

"The phrase Type 3 was coined by somebody for the spouse of the PWD (person with diabetes). I, too, am the wife of a man in his mid 40's with diabetes. I am thrilled to have another blog to read..."

Who knew?

And from another:

"Been there, done that. I've been married to a non-compliant diabetic for 17 years. It has been a roller-coaster at best. My hubby has been on dialysis for 4 years and now is having surgery for Charcot foot. What a nightmare. I will not ride with him driving the car anymore. (Too many scary experiences) Just remember, this is his doing and his disease, we are just there for the ride. I have screamed, cried, yelled, begged, ignored, and just adjust, but nothing seems to matter. He is just doing things "his way" It doesn't work for me, but he will not change and I just have to adjust. For whatever reason (sometimes I question myself) I still stay and deal. I do love him with all my heart and wish things are different, but they are not. I know deep in my heart that all will be okay .. just know you are not the only one dealing with this nightmare of a disease. Just be strong!!!

So here are my thoughts on the driving "experience"
Tom is the most aggressive driver I have met
Some of my family members won't get in the car with him at all

You know those drivers that people talk about on all of those talk shows?
The guy who whips in and out of lanes between cars, just to get ahead by a car length or two?
He speeds up, tailgates, drives in the break-down lane, backs up on the freeway, etc

Yeah, he's that guy -- and that is NOT having a sugar low!
He only had his car one year when he had worn out a hole in the carpet where his heel sits by the gas pedal . . . He claims that this is the only way to drive -- and it's fun!!

So, yes, we have had many, many conversations
now, when I am in the car, I remind him of our agreement:
a) he scares me and out of respect for me he needs to slow down
b) I can't tell whether he is driving that way on purpose or because his sugar is low therefore he must drive better to prove that he is ok or pull over and let me drive

If he is ok, he drives better -- if he is not ok, I know I have to force him to let me drive

Its not great, but for now it still works

I fear the day when it will no longer work

As for the staying or leaving part,
well, I'll leave that discussion for another day

Cherise writes:
The other day my hubby and I (I'm the diabetic) went out for dinner. I thought was going to have a carb fest, bolused for 60 carbs. Did I eat 60 carbs at dinner?!?! Nope, but I told my hubby I bolused for 60 carbs. I told him I needed something to eat with 30 carbs. I am sorry your hubby didn't speak up for himself but glad you were there to help him out. T-3's ROCK!!!

Cherise, you are a woman -- you COMMUNICATE -- you realized you made a mistake and you told your husband. I don't know if its because you are really really smart, (I'm sure that's it - :) ) or what, but Tom never ever admits he made a mistake. Even after our dinner fiasco the other night, he blamed it on the food - not his miscalculation!

And, I'm probably really out of touch, but can you tell me? what's a "T-3" ?

And thank you, DW, for your comment and your link:

I think I'll write a new post later. I still have to get the hang of posting other people's notes and my thoughts.

thanks for your thoughts, it helps.

Toms Wife

A few days ago, we were at a large family dinner. Tom was sitting next to me and lots of conversations were going on all at once.

Across the table, I caught my sister looking from Tom to me with a shocked, questioning look; and I realized that she was trying to understand what Tom just said. He had answered her question in gibberish. Upon looking at him, I know in an instant. The glassy eyes, the pale skin, the lack of expression on his face . . .

You see, Tom tries so hard to manage his diabetes to a "perfect" 100, his glucose count drops very low very fast with increasing frequency these days. I do not need to test his blood, its as obvious to me as if he had fallen over on the floor. [This is so different from the early years of our marriage when I lacked confidence and tried desperately to figure out how to test and figure out numbers. Now I have the confidence to rely on my own instincts -- I'm never wrong!]

So, in an attempt to minimize disruption to the dinner, I get Tom out of the dining room and encourage him to drink some soda. Surprisingly, he agrees and recovers fairly quickly. This was critical because we each had driven our own cars -- there was no way I could let him drive without bringing him sugar up. The disruption was minimal.

But count me bad, but I was quite angry. He had just finished eating! How could he let himself get so low? When I asked he told me that he didn't like the food and that the chicken tasted sweet so he couldn't eat it. Does this make sense to any rational person? He couldn't eat the chicken because it was too sweet, but then had to drink a 16 ounce bottle of soda because his sugar had gotten so low. And he wants me to think I'm crazy!

Please, who is really the crazy person now?