Time

One of the greatest foes with ALS is time... As I write this it's February, and I wonder where did January go...  Often of late, I desperately want to stop time, to take a moment to process, consider, evaluate, and take stock.  Time however, continues and passes and the ability to stop it is not allowed.  There have been many science fiction movies and books written on time travel or living outside time, probably because we all have these periods when it moves far too quickly.

Buying for Time...

ALS is not a curable disease, my hope and prayers are that it will be one day and frankly the sooner the better, but today it is not. It's a degenerative disease that over time robs the person of any "voluntary" muscle function.  The rate of the disease varies and each patient's case is unique.  In Patrick's case, his symptoms started in his right hand which is by far his greatest challenge.  In any case, it means that our prayers and hopes revolve around trying to slow the disease down.  Patrick is on the medication, Rilutek, which in trials was found to increase the life of the patient by three months, however they are now finding it may actually be more like six months to two years.  Yes, we are buying time...

Moving too Fast...

Much of my anxiety these days stems from making sure that time is not wasted.  I'd like to say that I'm an expert at making the best of each moment, but not always.  In truth, day to day living requires that some moments are just not that awesome.  We all have to pay the bills, feed the dog, clean the laundry (my personal favorite) and answer the age old question of "what's for dinner." Of late I've also realized that some of the best moments are not planned, organized or coordinated - they just happen as a matter of happenstance.  It's the sunset I see from my living room window, the funny YouTube video of the baby basketball player, or the text from Patrick with a picture of Roxie sunbathing.  Great moments, that don't have a cost and require no planning.

Roxie

Managing Time...

Currently, there are so many things on my "to do" list (yes, I really do keep a written "to do" list) - I have for years.  Unfortunately, now the list is large and one line items include "remodel your house..." which in and of itself is many items.  I was given a wonderful piece of advice from a dear friend, facing her own family challenges, she said "you can't solve the world's problems in a day, so recognize this limitation and set daily goals that make you feel like you accomplished something."  A great piece of advice, I've been trying to remember.

Time Robbers...

Sadly, there are outside forces that rob us of our precious time.  We are challenged with health insurance issues that create anxiety and require constant vigilance and follow-up.  Frankly, I didn't really think too much about health insurance until recent years when we've really needed it.  This has caused much stress in our house over the past month wasting our precious time.

How do you spend your time...

Have you ever sat down and thought "what did I do today?"  I do this a lot, assessing time by the tasks I've completed or jobs I've processed.  I'm an accountant, we like to scratch things off the list... yep, its that "to do" list again.  As of this moment, I've decided to add to my "what did I do today" recap and consider the value of the day differently, to ask the question, did I hug my husband enough today, did I laugh with my children, check-in with my grand kids, sister and parents, scratch my dog and enjoy a moment with a friend or co-worker.  I think the value of the day goes up dramatically when looked at in this manner.

Anyway, my question to you is... "what did you do with your time today?"