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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Sunday, January 21, 2007

What exactly is it...

What is it that I hate so much about Diabetes?

I spend a fair amount of time and energy being angry about diabetes. There is a lot of raw emotion there. There are a lot of feelings of it being unfair, of it being hard to do well. There is a lot of vague fear or worry about what is in store for me later in life.

But I have recently started to wonder, what exactly is it that I hate so much about diabetes? Why does it bother me so much on some days, and what exactly am I so mad about?

Is it a tangible thing? Is it some physical thing that I can touch and feel? Something real? Or is it all of the intangible emotions that go along with a chronic condition? Might I be better able to cope with it all if I can identify what exactly is going on?

There is a lot of work that has to be done when trying to manage diabetes well. We all know that. Some days it feels like it is just too much. But what feels like too much? What is it that pushes those frustration buttons?

There are days where you feel like crap. You have some highs or lows that literally wipe you out. They take you down and hold you there until they’ve had their way with you.
Sometimes they are unavoidable. They just happen.

What is so frustrating about those is the fact that life does not slow down and wait for you. Most of the time you have to find a way to push through whatever difficulties you are having.

How many of you have been at work, with a high blood sugar for whatever reason, the blood in your veins feeling as thick as molasses. Feeling so very tired. Every blink feels like there are magnets trying to keep your top & bottom eyelids together. You would give anything to just sleep until your insulin brings that high blood sugar back down.

Frustrated because it will take HOURS for that to happen, and you have so much to do.

Or how about being bitten with a ripping low blood sugar during a meeting or an important phone call? I consider that one to be a very tangible frustration.

There are financial frustrations too. I am very fortunate to have health insurance, and I am thankful for it. But there is still a very real financial burden to deal with for supplies and medicine. I know that there are many of you out there who simply can’t afford to get what you need for optimal care.

How about other aspects of that financial piece such as the denial of private life insurance or disability coverage?

Is it the fact that we have to plan and prepare for everything? We have to do our best to anticipate everything that might happen and be ready for it? Most of the time that is not too hard – or maybe we’re just getting good at it. So much practice you know…

Is it the ever present fear of future complications? It’s like a big storm cloud always on the horizon. We all do our best to stay clear from that storm, but what if it’s not good enough? What if we are not trying hard enough? And just how fierce will that storm be? Will we be able to deal with it?

There are almost always a bunch of extra hoops for us to jump through. Little things like time for medical appointments, or needing to take a little extra time to prepare for an outing. The work involved in making those preparations mentioned above.

We have to be so damn conscious of the food we eat. Even if the dietary choices are not the best, we still need to know how many carbs we are eating. I think that is the hardest part for me. Not hard as in difficult, but rather just the fact that I need to count (or try to count) every damn thing! I hate it.

Another aspect of things that gets to me often is the fact that I did everything “right” and didn’t get the result I was expecting. Two plus two does not always equal four.

After almost 27 years, I know that it doesn’t always work like that, but it still makes me mad every time. It feels like a slap in the face.

I look at my average day to day stuff, and in the big picture it’s really not that bad. But maybe it’s the fact that it’s day-to-day, everyday, forever and always, that makes it hard to bear.

What is your story? What is it that you really hate about diabetes? Have you come to a point where you are able to healthily deal with it all mentally? How?

35 Comments:

Blogger Jessica said...

In church today, our pastor gave a sermon on the storms of life. Basically he was saying that we are either in one, entering one, or leaving one. As diabetics, I feel like we are always IN one...it may be a light spring shower, a thunderstorm or a hurricane depending on the day. But it is always there. We never have the opportunity to watch the clouds blow over and enjoy the sun. We never have a day off. I am not trying to be depressing or disheartening, it is just a reality. I could not cope knowing I did not have God walking with me all the way. I enjoy the sunbeams when they shine and hate the clouds when they roll on in...daily! The amount of thought we put into this disease is amazing. If we could put all of the diabetic thoughts throughout the day into solving some other problems, well, just think what we could accomplish!!! We are all doing or best and that is all we can do...we can hate it but there is no getting around it. We are strong, we are awesome!

2:06 PM  
Anonymous In Search Of Balance said...

It was hard to read this, in that it was true, and frightening. The hardest thing for me to deal with re: diabetes is the constant uncertainty, and the way there's never a break. Never. And that's often so tiring and discouraging.

What makes me hopeful is the love I receive from my family and friends, and the way that every day I am learning more about my illness, and building my ability to manage it.

I hope you have some easy days ahead :)

Also, nice new layout!

2:44 PM  
Blogger AmyT said...

Oh Scott, I try so hard no to be mad. But damn it, I am mad! Thank you for putting it so succinctly.

(oooh, and nice new blog skin design over here, too!)

3:17 PM  
Blogger MileMasterSarah said...

Scott,
The hardest thing with diabetes for me to deal with is my daughter's diabetes. That more than anything else tears me down and makes me mad, sad, angry, upset, tears, the whole bit. After that, for the past few days I've run so low that I literally have not bolussed for one meal. Not one unit of insulin. And I haven't gone high. I spent a day bolussing for insulin and bottoming out before I just STOPPED. Isn't that stupid? How does that work? It won't last forever......Before that I spent a few days bottoming out and then spent 1 am super high. Gastroparesis. That pisses me off. Feeling full as soon as I start eating and then farting all afternoon. That pisses me off. anyhow, thanks for letting me vent!

3:38 PM  
Blogger Penny said...

Scott,
I've been dealing with D for almost 16 months now, and I must say it's not nearly as upsetting as it once was.
In the beginning I was sad and angry much of the time. The saddness I've pretty much learned to keep at bay. I just feel blessed to have Riley at all.
It's the anger that I have the most problem with. I'm mad at this stupid disease and I can't make it go away.
And, I'm tired. I'm tired of counting carbs and checking sugars only to do it again in a couple of hours. I'm tired of worrying if I should decrease Riley's basals when he's running around the house. The fact that this is never-ending makes me madder than anything else.

4:08 PM  
Blogger Nina said...

The carb counting doesn't really get to me. Wearing a pump all day everyday is fine too. What bums me out is when I think about how at some point in my life I would LOVE to just "check out" with my fiance and travel around for 3 months or 6 months, but that would be so hard for me. It wouldn't be impossible, but I'd have to figure out how to pay for health insurance on my own, and make sure that I have enough insulin and supplies to last all of that time. I hate the restriction that diabetes put on me in that way. I'll never be able to jot "go".

5:56 PM  
Blogger George said...

This is a total "practice what you preach" comment but I think it will be good for both of us to reflect on it.

Think of it like this. We eat food for energy. Say Like Weaties. Weaties will give you the energy you need to get through the day.

Diabetes, takes up a ton of mental energy and we should not give it any more then it deserves. I know it is difficult but try not to waste such precious energy hating diabetes. It is not worth it.

Don't waste your Weaties on Diabetes! LOL

<3 - SG

7:48 PM  
Blogger Bernard said...

Scott

Thanks for such a thoughtful posting. Each and every point you made hit a nerve with me.

I guess the only thing that gets me through all this is the hope that management and control will continue to improve and that one day (before too long) we'll have something close to a cure.

Hang in there brother.

8:32 PM  
Blogger Hannah said...

It's the fact that I can't just relax. It's the fact that I yell at my husband sometimes, for no good reason other than the fact that he didn't put a glass in the dishwasher and my blood sugar is skyrocketing. It's being moody, even while on antidepressants. It's the feeling that I need to hide my occasional mistakes from people for fear of a lecture on how I need to take better care of myself.

Look, I'm still learning my boundaries, but I know a small chocolate chip cookie and a small potato will do the SAME THING to my blood sugar, so get your nose out of my business.

There's a lot to be angry about.

I suggest we take all this crap and channel it into a Lewis Black-esque comedy routine. Haha.

8:49 PM  
Blogger Zazzy said...

I think I'm in George's camp. Buddha says that nothing is permanent, neither the good nor the bad. It's a hard concept for me since some things feel like they are all the time.

But I do think we waste too much time and energy being angry and upset over things which we can't control. It's not that there aren't plenty of things to be angry and frustrated about with diabetes - I just think we have to pick our battles.

Not, you understand, that I'm that good at taking my own advice.

1:03 AM  
Blogger Chrissie in Belgium said...

GREAT POST Scott! You ask what it is that each of us REALLY hate - it is all of it; EVERY DAM thing you mentioned. If it is not one thing it is the other that is hammering us. I hate the planning. I hate that it NEVER ends. Imagine a day's vacation from it all. I could never take it, a one day vacation. I simply couldn't stand returning to the grind. I really don't think I could do it. What do you think of my idea in my last post concerning a group SCREAM?!! I know that this is totally fruitless, but oh so relieving. But than what?

5:26 AM  
Blogger Chrissie in Belgium said...

Second comment - oh George you ARE right - "Don't wast your wheaties on diabetes". You ought to coin that phrase - LOL. But how do I get that through my thick skull when I am fuming?

5:41 AM  
Blogger Chrissie in Belgium said...

Second comment - oh George you ARE right - "Don't wast your wheaties on diabetes". You ought to coin that phrase - LOL. But how do I get that through my thick skull when I am fuming?

5:41 AM  
Blogger Scott said...

As a type A personality, I find that the "two plus two does not always equal four" really irritating, and to top it off, I may visit an endocrinologist who does not have diabetes and have him or her say "did you count the carbs correctly?" or "was there an unusual amount of fat in the meal which caused it to be absorbed more slowly than usual?" or any number of other idiotic question, where you just want to say "Uh, duh ... I never even considered that ... of course I considered that you pinhead, but you cannot give me any more accurate guidance or strategies for dosing insulin than was available 20 years ago." Fortunately, both my CDE and nutritionists both have type 1 themselves, so I seldom get comments like that from them, but their responses aren't any more comforting, saying "well, sometimes we cannot estimate any more precisely than that ... it sucks".

7:29 AM  
Blogger Carol said...

Great post Scott! Two primary things lead to wasted wheaties for me....(1) Ignorance about diabetes, specifically T1. Last night there was a story on the evening news about pharmacists helping with diabetes care. The reporter ended the story stating, as if it were a universal fact, that diabetes is both preventable and controllable. Definitely not preventable, and only sometimes controllable! (2) The fact that keeping good health insurance coverage drives, at least in part, my career and life decisions. What Nina said.

8:42 AM  
Blogger Heidi said...

Once again, great post Scott!!

I usually only hate diabetes when sugars are acting up for whatever reason. That being said, I sure wish that the continuous BG-monitors were more abundant and precise, because I have always had issues with the whole finger-pricking-for-BG-test-thing (it took me 2 years to finally be able to restrict myself not to move my finger, when trying to use it for a test. I either had my parents help me or I was fighting in front of the mirror myself in order to get blood from the earlobe!). It sucks when fingertips are sore after too many tests, it sucks that you have to draw blood when it is not possible to wash your more or less dirty hands beforehand. It just sucks...

On the other hand I like to think that somehow diabetes has actually made me stronger, in the sense that I am forced to - and used to - listen to my body, try to eat well and exercise. Especially the part about listening to your body I think is advantageous to us, even if it can be a hassle to have to do so :-)

Hang in there!

9:15 AM  
Blogger Minnesota Nice said...

Great post and wonderful, insightful comments.
I hate it because it's forever.
I hate it because other non-pwds seem to have it so much easier. I feel like the little match girl, shivering outside in the cold, looking through the window into a lovely warm house where people are feasting on the goodness of life.
I hate the constant fear of wondering what complication is hovering just around the corner.
And, I feel weak and lacking in strength of character because I have trouble coping with all of the above.
I have, throughout my life, made a series of unwise (also known as "dumb-ass") decisions, and db is certainly not to blame for this. If I were not afflicated, I'd surely be fretting and angry about something else.
Yet, all of these disturbances come in waves - some big, some little, and they always retreat. There is an ever-present chance that today will be better than yesterday - it's what I call "the promise".

12:31 PM  
Blogger Molly said...

Scott--
Nice to see you back!
What do I hate about diabetes. Same as what most wrote. The time and uncertainty of it all. Doing things "right" and not getting a positive outcome. Always thinking. Man, my brain gets tired. Thinking of carbs and insulin and how much is on board and if I have my supplies..... the list goes on. I hate treating lows when I'm not hungry. I hate worrying about possible complications.

Diabetes has given me friends and an unbeatable support system. It's taught me patience and persistence. It is part of who I am. And with it or without, I'm happy just to be me.

DAM DIABETES!

5:42 PM  
Blogger Adjoa said...

Great post Scott,

You took the thoughts right out of my head making me understand "What exactly it is..." that has been bugging me along with the flu I am battling.

9:35 PM  
Blogger karondaray said...

WOw..... very cool post. I worry about all of this i am not the one with Diabetes....my kids are. I hate that they will have to worry about this sometime in thier lives. I worry now...... i will worry about it later. IT SUCKS

11:09 PM  
Blogger karondaray said...

please keep posting for another 10-20 years so my kids can read this. Sorry about the second post :)

11:11 PM  
Blogger Sasha said...

I wish. I wish I can mentally deal with it, but the fact is when you are physically stressed and exhausted by highs and lows and by just all the amount of work and effort you have to put in daily, you can't even think to find strengths or will to try to deal with it mentally.

I'm pretty ok with my diabetes on the good days with reasonable sugars and all. But when even one number is out of range, all the energy and positivism seems to be sucked out of me, and not only work is getting hard then, but even smiling at people and talking to them becomes unbearable.

No, I still don't know how to deal with the bad days. May be 15 years is not long enough to figure it out but I so wish I did. To me 15 seem very long. I actually don't remember my life before those 15.

The most part I hate about the diabetes is how tired it makes me all the time, both physically and mentally.

2:18 AM  
Blogger type1emt said...

Why I hate diabetes-
I think I just hate it in general. Hating all the specifics is generally too time consuming. Except when something pops up to remind you just how SPECIFICALLY you hate it.
The one thing I'll definatly never stop hating would be lows.

4:27 PM  
Blogger Mike said...

I guess I've gotten to a point where I come close to dealing with diabetes in a healthy manner. I let diabetes control my life for 5 years while I was non compliant. Now I'm in much better control and all of lifes other complications seem less threatening.

For me it had a lot to do with going on the insulin pump and leaving my job. I don't really hate diabetes anymore.

Mike Barela
The Dawn Phenomena

6:13 PM  
Anonymous Jayne said...

It's all that. Thank you for posting with honesty and compassion. I see you helping others all over the OC. Keep on keeping on. You have helped me.

8:51 AM  
Anonymous the completely inconsequential flux capacitor said...

Howdy.

I've gotten now with type 1 for 21 years and 10 months, but who's counting? But that's a way of saying that I've had my time to think about it, but then no one with type 1 diabetes can't think about it. Well you can, but it requires a pretty harsh level of denial.

I've come to think that as a type 1 diabetic, it's like being in a constant state of grieving. Psychological models describe the 5 stages of grieving like this:

1. Denial
2. Bargaining
3. Anger
4. Despair
5. Acceptance

There is nothing wrong in feeling those things. The big question tends to be how much we can maintain acceptance of what has happened and what it means for us to live. I think very few type 1 diabetics are ever fortunate enough to find complete acceptance of what has happened, and for those few it just may be their inborn nature.

For me almost every day I find instances of the 4 stages before acceptance creeping in, or finding some event to come to the front of my mood. Fortunately, I've pretty well eliminated denial, but bargaining still shows up, anger happens over the little insults (that my fingertips are often sore while I work at the keyboard, that the large majority of people don't understand what it's like to live with the constant fear of complications) and despair, those black moments when I wish I could close my eyes for 8 hours or perhaps even longer without any thought whatsoever.

--the completely inconsequential flux capacitor

9:16 AM  
Blogger Erica said...

Great post - I think it really resonates with all of us...

And omg George's "Don't waste your Wheaties on Diabetes" had me LMAO!

1:28 PM  
Anonymous Anonymous said...

You have no right to say anything to me because you are just as bad as Allison. All of you are here. You all make me feel like shit day in and day out. Most of you never include me in anything, you barely acknowledge me. I leave you guys comments and you don't comment back. I'm sorry if I'm not good enough for all of you guys and I don't fit perfectly in your little blog world. Soon, hopefully very soon I'll be deleting my blog so that none of you have to deal with me anymore.

6:02 PM  
Blogger Scott K. Johnson said...

I'm very sorry you feel that way. It's certainly not intentional.

I can't possibly keep up with all of the blogs and all of the comments on all of the blogs. I won't even pretend that I'm able to do that.

I'll also say that I don't do any of this for anyone. This blog is an outlet for me, and I don't really care about keeping anyone out in the wild world of the Internet happy.

You go ahead and do whatever it is you feel you need to do.

I'll still be here if you change your mind about that hug...

6:11 PM  
Blogger Sara said...

Re: Anonymous
How can we visit his/her blog to leave a comment if they don't say who they are?

12:24 PM  
Blogger Nicole P said...

Scott -

I hate some of the tangible stuff - the set changes, the testing, the carb counting, the panic of lows and exhaustion of highs, all of those things - but what I HATE - really HATE the most - is the infiltration. The way this disease has gotten into my pores and made me think about every little thing, the guilt and the worry and the frustration. It's like a sneaky, clever, well-armed enemy that uses everything in it's power to knock me down. And all I can do is try to prepare myself for the knock downs - and get up and brush myself off when I'm caught off guard.

I think I'm always strong, but really, I'm sometimes weak and tired and broken - I'm sometimes at the end of my rope. I guess the best course of action for me has been to let myself be frustrated and tired - to accept that sometimes I won't succeed, that sometimes diabetes WILL win the battle. But to know, all the while, I'll win the war.

Hope all is well.
Nicole

3:16 PM  
Blogger RyanBruner said...

I just can't relate to this. Diabetes isn't that bad. It isn't bad at all, in fact. I can think of and see those around me all the time who have it far worse than I have. If diabetes is all I have to be angry about, it isn't much.

What right do I have to be angry about something like diabetes when I could have something like cancer or mental illness or what-have-you? None!

I think it comes down to a "grass is always greener" mentality. Those who despise diabetes do so because they see those who don't go through the same struggles we have. It is tempting to say, "Oh, it could be so much better if..."

But "if", what? That very person you are jealous of might have just found out they have at best a year to live, or that they are going to gradually lose control of their muscles, or some other disease. They may be living among family turmoil, divorce, abuse.

The grass isn't greener anywhere else. When my children tell me that something isn't fair, I remind them that everything all balances out in the end.

If diabetes is my affliction, I'll take it. Gladly.

1:19 PM  
Blogger Anne said...

My diabetes pet peeve: brushing my teeth 3 times before bed because of an endless low BG--eat sugar--brush teeth cycle.

Most of the time, though, I try not to give diabetes too much of my emotional energy. I do what I can to keep my control in good shape but try not to let it get to me when things don't go perfectly, which is often. Being a "good" or "bad" diabetic is not a moral thing; my approach is treat the whole thing like a fascinating science experiment!

Of course, sometimes I am really bummed out but I then feel guilty for feeling bad when I could have it soo much worse. I still get to swim, bike, run, hike, enjoy friends and family, and do pretty much anything I set my mind to. Diabetes is this extra burden riding along.

Maybe I am in denial; but I am happier when I try not to dwell on the scarier parts of the disease. I do what I can to prevent them, but I have type 1 and there isn't much I can do about that (yet).

Well, anyway, this is the attitude I strive for. But you can still find me milking for sympathy when I squeeze my finger and it starts bleeding in 4 places. yikes.

11:56 PM  
Blogger cfrank said...

I don't have diabetes but my seven year old daughter was diagnosed when she was 18 months old. I can't even imagine what you go through each day but you explained what I feel from time to time in worrying about my daughter. She seems to roll with the ups and downs fairly well and is just getting to the age where she is starting to wonder why she has to deal with this and feel different from her friends. The worst part for me is when she is sick and her blood sugar is harder to manage - sometimes I set my alarm 2 or 3 times in the night just to check her blood for fear that we over-compensated for her being too high. I feel mentally exhausted over worrying about her during these times. I pray that better treatment comes along in the near future. Diabetics are full of courage and strength. Thanks for sharing.

11:59 PM  
Anonymous Bonnie said...

Scott,
Loved your blog! After 31 years with type I, here is my thoughts on what it is that is so hard to grapple with. Diabetes is like being in a car race with your opponents being in an identical car, with identical speeds, drivers, tires, engines--no one is going to win you have to keep your cars all lined up and if you and they(your body, diabetes)are not even you both suffer. After 31 years of type 1 this is my analogy of diabetes. I am at war but I want no one to win just level the playing field. I can be very mature about having it and I can have a temper tantrum worthy of my 5 yr old! After going through elementary school, high school, college, jobs-life diabetes will always make me mad. I will have to see how I feel in twenty years when i'll have had it for half a century...

1:46 PM  

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