Monday, May 30, 2011

Intensive Management vs. Emotional Burnout

This post was prompted by a fellow Diabetes Warrior Parent, who wrote about "When is Too Much, Too Much?" Thanks for the inspiration Reyna from Beta Buddies

That phrase echoes my experience three fold.  I have gone OCD on diabetes in the past. Testing too much, analysing like a crazy mad scientist, CGM, Pumping, weighing, measuring, counting the carbs right down to a half gram. 

Was my Control improved?  Absolutely. Was I happy? Absolutely Not! 

Diabetes was dominating my every waking moment more then it should.  Which brings me to the conclusion that sometimes simple is nice. Now I should add that I definitely advocate for intensive diabetes management, but not at the expense of emotional burnout. And, It really is a fine line.

Now my one Type 1 daughter Rowan, went from MDI, to Pump, now back to MDI.  Why? Primarily for physical reasons, as her pump sites were looking a little on the lumpy side (Hyperlipodystrophy) Also, It too was necessary for mental sanity. We were micro-managing her diabetes and pump.  I was getting texts 3-4 times a week from her school informing me her readings were wonky. Now I am lucky to get one once a  month. We've simplified things dramatically, and as a result, we are feeling some emotional reprieve and her control has improved.

As a parent of 2 children with Type 1 it is very easy to chase numbers, over react, change things, basals, boluses, testings a gazillion times a day, worry or cheer. All this at the will of the results on the CGM or in our case the Meter.

I do know how exhausting this is, and how every reading isn't just a reading, it represents sooo much more then that. It is a Mark, or measure as to how well we(as parents) are managing our innocent vulnerable child's Diabetes. And some of those reading can emotionally crush us.

This insurmountable task of managing as an external pancreas takes a huge toll on us emotionally. So can we simplify things, or at least mentally simplify things? Good Question. And something I encourage all of us Parents and PWD(People with Diabetes) to reflect on. I know my awareness about Quantity vs Quality is evident often. I think it is a Nursing thing, when a person who is told they can live 3 extra months but need to spend half that time sick with no quality of life. What is the point of living if the disease or illness dominiates our life to the point that our quality of life is severely hampered. Not this guy, no freakin way.  I want to prevent longterm complications for all of us but I also want to live Life!

I love the saying KISS, or Keep it simple stupid.  Now before you all swear at me, I am not calling anyone stupid other then myself, cause somehow I make things more complicated then they need to be. My regime for example, always improves when I stick to a simple plan. Eat sensibly,  measurable carbs, test 4-5 times a day, look at the trends weekly and tweak.  It works and no I don't do this all the time, and Yes I often drive myself to the brink of insanity. But lately it is about finding the balance between quantity and quality. Life should be all about diabetes but about Life and Diabetes on the side.

I do know this though, Simple works. I don't mean simpler technology, my pump works better with 4 basal rates as opposed to 8. It is a fabulous device. But I know that I can over complicate things by analyzing things to frequently, over thinking decisions, second guessing my self.

The complexity in diabetes management is taxing on the brain and the trick is to ask - How can I balance all this physical stuff(testing, injecting, pumping) with the Life, so that it doesn't out balance quality of life and lead to burn out?

That's the balancing act for us folks living with diabetes daily.



Reyna said...

So well said Trev. I see it. I have gotten balance..for the most part. I weigh the "at what cost" time and time again as I look for and watch for burnout signs in Joe. He still remains "JOE"...balls to the wall, no holds bar, gonna live life to the fullest side-by-side with intensive "D" management.

Thanks for the shout out.

Lora said...

Wise words master Trev :)
No really, I agree. It is a tough balance but it is so important not to drive yourself staight to the funny farm.

great post!

Denise aka 'Mom of Bean' said...

Simple really does make things, well, simpler! Balance is life is very important...being able to do both is reall, really important!

Roselady said...

Balance is definitely key.
I always think that I don't spend all my life consumed over the perfect health of my other kids, so I shouldn't try to get my d-kiddo 100 percent perfect either. Waste of time that could be used for something better.

Sarah said...

I agree with you completely. I also wonder about some of the folks to cling to a "good" number and celebrate it as if it is the key to making all of their child's future brighter. I want to hug them and say, it's not a number it's a lifestyle. I honestly feel like that is what we're teaching our children - how to take care of their diabetes with a mentality that life is great, there's just a few things they have to keep in check as well as they can in order to enjoy all they love. This is what I see with my husband, yes he lets out a curse word or two at 4am when he's low and wants to sleep - but he still wakes up at 8am to do his 40 mile bike ride, this disease hasn't taken anything from him. Nada, he is has been the best at teaching me to relax.
Thanks for reminding me, too - seems I never tire of being told to let go and just live :)