Stuck

I sit here

feeling
stuck

in my head
in this body

stuck

not comfortable
or in control
to write
to read
to walk
to drive
to do
much of
anything
but wanting
to do something

no say
in how I feel
so life can feel
like nothing

sometimes

You’ve Got to Keep Going If You want to Keep Going

I received a note from a friend today, saying balancing taking care of herself and having Parkinson’s disease with taking care of her family as well was by and far the hardest thing she’s ever had to do.

It’s true.

You want to keep going, keep covering all aspects of your life to the best of your abilities but at times, your abilities don’t quite measure up to what is needed to keep going. You have to choose between what is more important to what is most needful to what you really want to do.

For example, do you take the after dinner walk as your Parkinson’s speech therapist prescribed in order to prevent the possibility of pneumonia or do you help your child with their homework or do you do the dishes, knowing in an hour you aren’t going to have the energy for much of anything?

Yes, it feels like the hardest thing to do sometimes. How do you balance it all? How do you make it all work? The truth is, you probably don’t – most of the time. Or you use smaller increments of time to do what needs to be done.

Finn and Grammy

Have you ever heard of the Spoon Theory? It operates on the idea that, as a person with a disability, each day you are given so many spoons. You are to budget them throughout the day as if they are your energy, your strength for the day. If you use more than you should – say you borrow some spoons from tomorrow – than you most likely won’t have the energy or strength for tomorrow and may spend the day in bed. I don’t know that I agree with the theory in it’s entirety nor do I believe it ‘works’ for everyone, but the concept is good. Relating it to balancing life with PD, yes, the concept is good.

Instead of spoons, I think of activities in my day as slots of energy needed or strength, which actually in the life of a Parkinson’s patient basically coincide with each other. I give up doing some things for the sake of being able to watch my little grandson. He is a gift of joy from God and there is nothing more important. Cleaning the bathroom will have to wait. The dishes will have to wait. And weeding and watering – they’ll have to wait. With a disability, you have to choose what is most important to you – that thing that keeps you going. The thing that you may have to put something else aside for. Something that keeps you moving so you don’t stop moving.

There has to be something that keeps you getting out of bed each morning. Something that keeps you pushing on when you feel you have nothing else to give.

For me, his name is Finn. And he keeps me going because…

I want to keep going.