Art by Jim Benton
A conversation with a friend:
"Kathy, I read your blog post and, honestly, it was kind of depressing. Don't you think you'd feel better if you focused on good stuff?"
The short answer...YES.
The more complicated answer...NO.
For 20 minutes, I tried to explain it....what it's like being shuffled from specialist to specialist, how my blog is an accumulation of emotions/thoughts/experiences, the sheer frustration of consulting with 21 doctors in nearly two years, how sometimes I just need to vent.
He got it (and was totally respectful).
He was also confused...
Didn't I recently say my energy was improving???!?!?
Hadn't I just had a "good" day with a friend???
Am I not doing better than I was a year ago?????
"Getting better" is tricky with chronic illness.
Every time someone asks "Are you better?" I'm conflicted.
Better than WHAT??? I think.
Better than when I couldn't get out of bed and feed myself? Yes.
Better than when I had to wear sunglasses and earplugs to watch a movie? Certainly.
Better than when I would fall over from pain in the gym/living room/grocery store? Amen.
Better than when I'd sit in a dark room with a migraine all day and cry? True.
Better than when I couldn't walk to the car without resting? Definitely.
That's the funny thing about better; the bar keeps moving.
When you have no energy, all you want is to be able to make it through the day without napping.
When you make it through the day without napping, all you want is to have enough energy to wash your hair, unload the dishwasher, go to the grocery store, and get through the day without some bizarre symptom.
That's still not happening.
This morning, I was jarred awake feeling like the left side of my head was being stabbed with an ice pick.
Last week, half of my face and legs went numb.
The week before, my left hand couldn't hold a fork.
Last night, I had two unexplained shaking/convulsing moments.
Daily, my body is burning and aching.
In between, there are glimpses of better: the absence of a leg ache after I've taken a muscle relaxer, an amazing burst of energy following a new Artemisinin protocol, the day only my right hip hurts vs. my right hip, my hand, my left arm, and my head.
But am I B-E-T-T-E-R? Like sustainably better???
Not in the way I'd like to be.
I'm not trying to sound negative, or victimy, or hopeless. Just trying to share my experience, let others know they are not alone, and tell the truth (as I see it) about Lyme disease and chronic illness.
Some days are good.
Some days are bad.
Some days are intolerable.
When the first category outweighs the second and third,
then we can talk about better.
Disclaimer to those who don't read this blog frequently: This blog post represents a glimpse into my life with lyme disease: an on line diary of sorts. It does NOT represent the sum total of who I am as a person. By the time you read this, I might be feeling better or worse. I might be having a good day or bad. I might be smiling. I might be crying under the covers. I write about what moves me, what inspires me, and what I struggle with....on a day to day basis. Lyme is a very up and down and journey. I try to include all of it.