Friday, April 25, 2008

Diabetes Burnout: What Do You Do?

Everybody gets burned out sometimes. Sometimes you get burned out at your job. So, you take a vacation. If the burnout is really bad than you find another job.

Sometimes you can get burned out with a hobby of yours. You may take a few days, weeks, or months off to return to it refreshed. Or you just take up a new hobby.

But, what do you do when the one thing that makes you cry and scream, the one thing that you don't want to see, hear, or feel anymore, is the one thing that you just CANNOT walk away from?

That's where I am right now. I am sick of finger sticks. I'm sick of figuring out how to adjust basals. I'm sick of site changes. I'm sick of treating lows and worrying about highs.

Yet I can't back away from it. I can't just take some time off. I know, I know it's not my disease. I'm usually the first to point out that this is Riley's disease, not mine. He feels the highs and the lows. For now it's my job to figure out what to do about them.

Even when he's somewhere else, at school, at my mom's, or even with Michael, I get a call. "Riley's sugar is 52. I gave him juice. Do you want him to have a snack too?" Or "Riley's sugar is 440. It was 330 before and I gave him insulin, but it won't come down. Do you think you need to change his needle?" Or "How many carbs is in.....?"

Your advice may be that I need to give the reigns over to someone else for a while. But, I can't.

You PWD out there reading this think about what that means. You are the one who knows your body. You are the one that deals with the highs and the lows on a 24/7 basis. You are the one that knows how your sugars respond to exercise or stress.

Well, I'm that person for Riley. I've been making all the decisions about his diabetes for the last 2 1/2 years. I may not feel the lows and the highs but I'm the "expert" (if there is such a thing) at how to deal with them. I make the decision to give 1/2 of the usual amount of insulin the night after a soccer game. I'm the one who makes the decision about how much to decrease his basal and for how long when his sugar is 82 at bedtime and he still has insulin on board.

Would you just turn the reigns over to someone else? Would you let someone else treat your lows and bolus for your highs? We all know that diabetes is an individual disease. What works for one will not always work for another. In some people excitement or stress raises their blood sugar. With Riley, it makes him go low.

I'm not complaining really. I know that's what it sounds like. It's not that I don't have anyone else to give the reigns to. I just don't want to give the reigns to anyone else. I don't want people to stop calling me and asking me what to do. Because as long as I'm making the decisions I'm doing something to help Riley.

That's really what it's all about. I want to make life better for Riley, easier. I don't want him to be high or low too often because I know it affects his body and it affects his moods.

I want him to run at soccer games until he can't run anymore. I know I'll be dealing with a low later if I don't decrease his basal and give him less of a bolus. But, what matters at the moment is that he's having fun. I don't want diabetes slowing him down or making him second guess himself.

I'm just tired, that's all. I want it all to go away, but I know it isn't going anywhere anytime soon, if at all.

Prayer helps. "I can do all things through Christ you strengthens me". But, what about the anger that is bubbling up inside me? Anger at a disease that I cannot control no matter how hard I try.

I guess it's kind of like doing laundry. That is my least favorite chore because it's never-ending. I may work all day to get the hamper empty only to have it fill up at night with 4 sets (sometimes more) of clothes and towels. I feel a sense of accomplishment when the hamper is empty. Then when it fills right back up again there's a feeling of "why bother?". It's just going to fill up again anyway.

With diabetes the hamper is always full. There's always something that needs to be done.

How do you guys deal with it? What do you do when you're burned out with a disease that is relentless, a disease that you want to ignore but you can't because ignoring it only makes it worse?

What do you do?

11 comments:

Lea said...

After about the first 2 years or so, I went through a period of burnout similar to what you're describing. (the laundry analogy has me sitting here, nodding my head)
What snapped me out of the funk was the day I noticed Noah, taking cues from me- he started stressing to the point of panic about a string of crappy high blood sugars. He sounded just like me.
I decided then to surrender to it all. Diabetes is here, but I'll be damned if I will let it make us sad, or depressed anymore.
Now I'm not saying it's perfect every day. Some days it truly does suck- but I keep reminding myself that if we try to have a postiive attitude, he'll pick up on it, and that takes a certain amount of stress off him, too.
Us moms come equipped with some heavy duty armour, but sometimes we have to take the time to polish it up and work out the chinks diabetes puts in it.
Hugs to you, you're doing a phenomenal job!

George said...

A hamper that is always full. That is a great description.

when I am totally burnt out I do what you did. I write about and ask for some help or ideas. I can never figure it out on my own. As I read, am encouraged, and educated, I start to feel better.

Thank you for being such a great mom.

Penny said...

Lea,

Thanks for the advice. I don't think I'm overstressing about numbers. I think I've become the opposite. I don't log like I should. I react and move on without analyzing. I don't want to pass that along to Riley either. That is not the way to manage D.

George,
Thanks:-)

Anonymous said...

Hi Penny,

I've been reading your blog for almost two years now. My 7 year old son will mark his two years in July. I feel your exhaustion. It in some way helps me to know I'm not the only one.

Penny said...

Anonymous,

Thanks for commenting. No, you are not the only one. We're all in this thing together.

Jillian said...

First of all you are a wonderful mom!
I'd have to say Lea has the right idea. It might also help if you keep in mind that everything you do for Riley now will not only help him when he grows up and takes over, but it will also prolong the time until it all becomes "his". Perhaps if you think about each finger prick, set change, low, or high as one thing you can take on for Riley it might make it easier to deal with. I know it's tough, but you have the strength to do it.

Kate said...

Penny

I wrote a post on the exactly same issue, in fact considering the distance between us geographically, we were probably composing it at the same time!!! I called my post "Burnout." I felt a LOT better after I wrote it. Hang in there girl. There are rocky bumps and terrains all over the show with Diabetes, and the horrible part is, whilst you are the carer, you never know when they are going to show up an pound you into the earth.
We are good Mum's-nothing can take that away from us. There is nothing more that we could be doing that what we are doing now. Otherwise we'd be doing it.
Take care, Penny..
Feel free to chat if you need to..anytime!

Kate

Paige said...

Penny,

I'm not sure that I really have any advice...I just want you to know that I am listening and I empathize.

Anonymous said...

I linked in from the tudiabetes site, which I just joined, in response to your welcome message to me--thanks!

All I can say is, "Amen sister!" If I had participated in the project where you could write a single word on your hand about diabetes, mine would be: CONSTANT. After 22 years (dx at age 16), I find that I still cycle into those periods where I really want a vacation from the constant attention that diabetes demands. Most of the time I soldier on, and everyone thinks I'm a "good diabetic" because they see me testing, using the pump, not being in the hospital or with major complications, etc. But I still hit those periods where I just want OUT of this disease. Cure, please. Thanks so much.

If I could write a word on my other hand, it would probably be: LONELY. Because I have a lot of people who love me and would help with whatever I asked in terms of diabetes: my wonderful mom, my sister, my husband, good friends, a great endo. But the bottom line is that I'm the only one who is really responsible for being an expert on my own disease and health. I sometimes joke that diabetes is a "mental" illness, because so much of it involves lugging all this information around in your head, anticipating and planning. It's a drag sometimes.

No question, as the mama, you're doing all that for your son right now. And without the benefit of inhabiting the body that is affected, so you can't really tell how he's feeling. I'm diabetic, and I'm a mama, but I can still only guess how it must feel to be in your shoes.

Hang in there. I am 22 years diabetic, with no major complications, happily married, two beautiful daughters, a good job, healthy, happy, etc. Life is good.

Jenny
jennywoodall@comcast.net

Anonymous said...

My 11 year old daughter just marked her 2 year diagnosis anniversary in April. My thoughts were so confused on that day:
Wow, how far we've come!
What an awesome kid!
What a lousy disease!
What a lifetime we have lived in 2 years!
I am now so weary of the anxiety and constant vigilance. Reading your post makes me feel that I'm not alone. Thanks.

Anonymous said...

my son is 3 years old and was diagnosed with diabetes in january 2008, it felt like my world had fallen apart until we learnt to deal with it, you obviously go through bad days, my son keeps waking up in the night with high bloodsugars at the moment but we are dealing with it. What makes me carry on is when i think of other children and what type of lifetime illnesses they have far worse than diabetes, at least we can rule diabetes and not let it rule us. stay positive!