Narcoleptic Knights

Friday, July 10, 2009

Groggy Gray Grumpies

I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:
  • House is messier today than it was on Monday
  • Lawn is still not mowed
  • I need to make two phone calls - one to set up yet another meeting
  • Our office is still not cleaned
  • Our finances are not yet up to date
  • Oodles of things need to get done for my job
  • Oodles of things need to get done for MOONS-MN
  • Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
  • My wife is depressed, and more from me would help
  • My daughter needs us to run errands and help packing for an overnight
I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just "work harder," but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won't in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

2 comments:

Dana said...

I love you Mike! Things will get better!

Jesse said...

Hey, thanks for writing and for venting a little and for sharing your experiences and insights! It absolutely helps being able to communicate with people that understand first-hand what some of your struggles are like. I just had to smile when I read the word "oodles" - I love that word for some reason and I rarely hear/see anyone use it! Don't let yourself feel down about the unfinished work - it's a shame that N places limitations on you so you can't get as much done, but feeling bad about it isn't going to help matters one bit. It's not like you have any control over it! (I've struggled with this in the past too, and probably still will again in the future.) Hang in there!