Friday, March 1, 2013

Living and Writing with Chronic Pain: A Private Confession

M and I know that we're still a wee little blog with not a huge amount of content yet.  We're okay with this.  We think long-term so we're building the foundation of what we intend to be a long, prosperous writing career.

Blogging is an element of that.  Many readers like to see what their favorite writers think, what their lives are like, what books they like.  We're all voyeurs in one form or another.  (And even though M isn't a fan of it, I like rambling about stuff.)

Where it gets tricky is separating the private you from the public you on your writer blog.

Who we are on these pages is not the totality of us.  It's us, don't get me wrong, but it's the bits of us we feel comfortable sharing. 

So today is a personal blog, a bit more of the real me with a little less sass.  I've mentioned before that I am chronically ill and a chronic pain sufferer.  I usually joke about it because I'm not comfortable exposing my weaknesses to folks outside of my family.

But I've been thinking a lot lately about my illnesses and the whole coy thing I've been pulling.  I'm not ashamed that I'm ill or embarrassed because I had to take early retirement at 35 because my body wouldn't let me work.  However, when you're as ill as I am, it's very difficult to not let those illnesses define you. 

One way you allow them to define you is by pretending they don't exist or failing to accept the impact they have upon your life.  And there's no doubt my illnesses has affected my life - my ability to teach, my ability to help support my family, my ability to take care of myself.  It's affected my home, my family, my sweet hubby, my child, and my best friend and writing partner.  Being chronically ill turned my life upside down.

I turned it right side up again by funnelling my ambition and drive and creativity into writing, one of my life-long passions.  But sometimes my health steals even that away from me.

I have several of the so-called invisible illnesses - I look healthy even though I have a multitude of ailments.  And I'm very good at putting up the facade when I need to do - I don't weep and wail in front of folks about how bad I feel. 

I've been sick since the day I was born and I never let it stop me because I have immense strength of will.  Unfortunately, there is a point when a person's body can overcome his/her will.  My body pooped out on me a few years ago so I'm stuck letting go of that life and trying to build another one.

So here's the deal - I'm not gonna talk about this a lot because it doesn't define me.  But I'm not gonna hide it either.

I have treatment and diet non-responsive IBS and because of that I live on a liquid diet.  It sucks, but it keeps me out of the ER.  I have degenerative disc disease that is progressing at a much faster rate than my doctors predicted a decade ago - this means my spine is all whacked out.  I have fibromyalgia, which in simple terms is an auto-immune disease that causes problems through out my body.  I have advanced arthritis, although we're still not sure what kind. 

There's more and my docs are still testing for more, but those are the biggies.  I live in severe, constant, unremitting pain every day of my life.

My health is the biggest reason we're 7 months behind schedule on releasing the book.  M and I have learned some things this past year about how to work around my disabilities and accomodate these things to keep me writing, but there are still days and weeks when I can do nothing.

Anyhow, when I refer to being chronically ill, this is what I'm talking about.

All this shit is depressing, isn't it?

I choose to laugh at my disabilities, no matter how dehumanizing they become.  And I try to limit myself to 5 minutes on the pity pot per day. (Some days this doesn't work so well.)  Then I get up and get on with living.

And writing.

No comments:

Post a Comment