Chronic Lyme feels like…
Falling
off a cliff
into a freezing pond
and being fished out
with a hook
by the skin of your side
and being tossed
overhead
on your head
on the rocks
dizzy and confused
foggy and forgetful
you rise
and stumble on
You’ve been here before.
I didn’t fully admit it until last week, when I finally decided to call my doctor.
I’m having a relapse. Some will say there is no such thing as a Lyme relapse or Chronic Lyme Disease. I’m living it. I can tell you with 100% certainty that Lyme Disease can be chronic, regardless of what the insurance companies (who refuse to pay for treatment) claim.
How do I know? The blinding headaches. The inability to make it all the way up a flight of stairs without cringing. The sudden inability to spell without reversing words and letters. The total brain fog.
It’s been almost 8 years since I was bitten here in the lovely birth place of Lyme. I was infected on a beautiful March day while hiking with a friend and the kids.
It took 6 years of a daily headaches (earning me a diagnosis of New Daily Persistent Headache) before finding out that I actually had Lyme.
The first three Lyme tests came up negative. Two years ago I was tested again “just to be safe,” by a doctor that was convinced that all of my problems were simply caused by stress and anxiety. He agreed to do the blood work and handed me the business card of his favorite therapist.
Following 18 months of antibiotic treatment, I thought I was done. I wanted to be healthy again more than anything.
Living with chronic pain for years is life altering.
I hesitated to go back to my Lyme doctor. Although I’ve had a constant headache for nearly a month now, I wasn’t ready to deal with this all again.
You see, the thing with Lyme is that the treatment can be it’s own unique hell. As the little spirochetes die off during treatment, they break apart and flood your body with toxins, causing you to feel even worse.
To top it off, there are the dietary requirements. No sugar. Nothing that turns to sugar in your system. No wine. No carbs. If you really want to get serious, eliminate gluten.
I was very good about this during my initial treatment. And I know you have the urge to say, “Amy, if it is going to make you feel better, just do it.”
Don’t get all superior with me now.
I will do it. I will also whine about it.
When I declared myself well last time, I went back to eating a few banned foods, but in a whole new way. This brings us to the topic of the doctor’s office weigh in, which was entirely unpleasant.
I discovered Pioneer Woman and it’s her damn fault that my weigh in wasn’t a pleasurable thing. She introduced me to things like baked mac and cheese with a layer of bacon on top and my beloved sesame noodles. If awesomesauce could be eaten, this is what is would taste like. Want to gain weight fast and enjoy every second of it? Buy her book.
As I write this, my husband is eating leftover birthday cake, torturing me.
I’m telling you, Lyme is a dark and twisted punishment.
So there, I said it. And this will be the first and only post in which I allow myself to wallow in self pity. Tomorrow, I will get up and start the battle with the nasty little critters that have worked their way into my body.
Death to the spirochetes –again.
You can read the first two parts of my Lyme story in Out of the Woods and This is Lyme.
I highly recommend the movie Under Our Skin to gain a full understanding of the Lyme epidemic and the political / economic factors that contribute to the suffering, misdiagnosis and mistreatment of patients all over the country. (It’s on Netflix)
