Sunday, September 19, 2010

Good days, bad days, and invisibility

An invisible illness is one that isn't readily apparent to the people who don't have it. Two factors contribute to a disease's invisibility:
  • No obvious signs. Sufferers don't use a wheelchair or crutches, don't exhibit hideous rashes or scarring, and generally don't "look sick."

  • Symptoms go underground. Due to the illness, sufferers often can't leave the house. When they do, it's on a relatively good day, when they're feeling better. The friends and family who see them on those good days assume, wrongly, that the sick person always looks and functions that well.
As National Invisible Chronic Illness Awareness Week draws to a close, I'm posting "Good Days," a song I wrote about dealing with the misconceptions attached to a good days/bad days disease. Ron the Drummer and I recorded this live in his living room. You may need to turn the volume all the way up if you're listening on tiny laptop speakers.

Lyrics are below. Enjoy!


Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

When I got up late this morning
I could sense a change
Felt a little stronger
Could push a little longer
Accomplish something more

So I got dressed and fed myself
And hopped into the car
Drove it all the way down
To the nearest grocery store

You say I'm wasting my potential
Moving through this life too slow
You only see me on my good days
How are you to know

I've been losing so much daylight
Lying on the bed
Half awake and half asleep
Half alive, half dead

But now I walk among you all
Just breathing in the air
Grinning like a madman
On a double-doggie dare

You think I'm addicted to the drama
Playing all of this for show
You only see my on my good days
How are you to know

I could almost make believe
This feeling's here to stay
But I know from experience
My body's gonna pay

Well, none of your equations
Ever calculate the price
And I do not remember
Asking you for your advice

Today is gonna go down easy
Take it nice and take it slow
I am having me a good day
That's all you need to know


CFS Facts said...

Amen, Sister! I had one doctor tell me that if I could get to his office (4 blocks away) I could get to a job. Never could convince him that I slept in my clothes (because getting dressed took so much out of me) so I could get up, go directly to his office, and 15 minutes later go home and collapse for 2 or 3 days. Oh, yeah, there are jobs that let you come in for 15 minutes at a time twice a week.

Laurel said...

Love it!

Sue Jackson said...

Hi, Susan -

A friend directed me to your blog, and I'm so glad she did!

I've just listened to all of the songs you have posted here and really enjoyed them. I like your musical style, and the lyrics so perfectly express what it's like to live with CFS!

I happen to be badly crashed today, and Quicksand really hit home with me - in fact, our ancient, broken-down couch physically resembles quicksand!

Thanks for your wonderful music. I posted a link from my own blog:


cinderkeys said...

Thanks for the kind words, all. Thanks for the link, Sue.

Looking forward to someday getting this recorded professionally. :)

Anonymous said...

That song expresses it perfectly! Love the music, love the lyrics, love the song! That's it exactly! Thanks for saying what I was thinking and saying it with insouciance! Well done!

cinderkeys said...

Thank you! Insouciance is what I was going for. :)

Susan said...

Thank you for writing this! Perfectly positioned, no apologies.

cheri said...

well put thank you.