A Peek Inside the Brain of Someone With Advanced Lyme Disease

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A peek inside my Lyme-filled, neurologically impaired, frustrated brain:

Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We chronic pain patients become a pro at hiding pain, at blending in. It’s just part of the job.

Then there’s the lungs. Every labored breath feels like a 40-pound bag of flour is sitting on your chest. Worst of all is the brain. I was a former athlete, yet I spent four years needing a wheelchair and was often bed-bound. Trapped, like a prison cell. But the bars are invisible, and to the naked eye it looks like nothing’s wrong.

The physical symptoms aren’t nearly the worst though. It’s the neurological stuff. I can handle pain, but when your brain is under attack, it’s infested with millions of spirochetes spiraling their way into every crevice of your tissue, cells, muscles. When your brain is in a battle, you’re not you. You lose your personality. In a matter of a week your reading capacity drops grade levels. Your IQ drops and if you’re lucky, maybe some of it will come back one day. I cannot put into words the feeling when you can’t remember how to pick up a pencil and write. You can sit there for hours and hours, simply staring at it. But nothing changes. You’re no longer you.

This is the reality of advanced, neurological Lyme disease. I’ve come a long way. A hell of a long way. There’s a light at the end of the tunnel – that, I’m sure of. But some days – those days where you’re alive but not really living, subsisting off pain narcotics just to get through the night – those days feel like that light is an oncoming train. That said, there are tomorrows for a reason. Tonight might be one of those nights, but I know without a doubt that there’ll always be better days to come. So you take your treatment, distract yourself from the pain and live to fight another day.

This is my life as someone with advanced tick-borne disease. And sometimes the only relief available is to say to yourself “tomorrow is a new day.”

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