Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Life\’s For the Living

Written by Katie. Posted in About Me, Chronic Illness, Writing

When the summer started I had this grandiose idea that I would blog all summer.  Like real, meaty posts rather than just the quick “Five for Friday” check-ins that allow me to keep a quick record of life.

Because of this idea, I have struggled all summer with writer’s guilt, as the sweet summer weeks continue to pass by and this poor blog continues to suffer from neglect.

You see, I always have a to-do list next to me on the coffee table.  Each week I make a new one.  I have been doing pretty well accomplishing the items on the list…all except the ones under the category, “Blog.” (Yes, I categorize my to-do lists.  I know, I know. Type A, much?)  Each week I have had to carry over the topics I had planned, and each week those topics are still sitting there, staring at me.

I was talking with a friend the other day about the frustration and the guilt I feel about not writing more this summer.  I told her it amazes me that my stats show I still have loyal readers when I haven’t put much out there in a while.  She quickly asked me what I HAVE done this summer.  I rattled off a lengthy list. One that included doing a lot of work on Life as a Zebra (the foundation), doing more outreach with fellow zebras, pushing myself to accomplish more exercise goals (and then of course recovering), traveling, going to lots of concerts, spending time with my family and friends, and working on my house.

As I got done, she said, “So let me get this straight.  You’re feeling guilty and beating yourself up for making LIVING a priority.”


After a few seconds I managed, “Well, when you put it that way, I guess it does sound kinda silly.”

That got me thinking.  Three summers ago, I spent my days being wheeled from doctor’s office to doctor’s office in my wheelchair, relying on others to bathe me.  I was only able to drink Ensure and most of my free time was spent bedridden, in tears, and wondering if the doctors were either: a) ever going to figure out what the heck was wrong with me, or b) if the doctors who thought I had muscular dystrophy or ALS were correct in their diagnosis.  Two summers ago, I spent 90% of my time rehabbing to be able to function again.

Since that conversation, I have decided that there will be time to carry out my love for writing.  It may be tomorrow, or in three weeks, but this blog will always be here as something I love, value, and want to continue to foster. I will have days like this when I want to sit down with music playing, a cup of coffee in hand, and put all of my thoughts out there.  But for right now I am loving the “doing” with the free time I have.  I am loving and appreciating the ability to soak up and enjoy every adventure I have been lucky enough and healthy enough to encounter this summer.

And let’s face it. When you have a chronic illness, prioritizing is one of the biggest keys to living a happy and purposeful life.  For now, I am embracing that being busy living and doing are my priorities with the energy I do have, and writing will happen when it happens.

Life is too short.  It can change in an instant. I want to spend every second breathing it in…and loving it out.

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