Let's talk a little bit about fear. Fear of the dark. Fear of sharks. Fear of spiders. Whatever you're afraid of. Are you thinking about it? Now imagine that it is always with you - you're always in a dark room, you are always lost at sea, you are always covered in spiders. This is what it's like when you have an infection that isn't going away.
When I first considered that I might have Lyme, and in the very long month I waited for the test results to come in, I was scared shitless. I learned what I could about it, watched documentaries and really did my research. (Because after all, 'knowledge is power,' right?) The scariest thing for me was when I was watching 'Under Our Skin,' a very informative documentary about Lyme Disease, and it gives a little lesson on the Lyme infection itself. It talks about the borrelia burgdorferi spirochete (a mouthfull which basically is the name of the bacteria itself indicating that it has a spiral shape, like a corkscrew) and how it gets into your body usually via a tick bite and how it gets into your blood, into your heart, and into your brain. ! It gets in your brain?! That was the 'holy crap' that really stuck with me - how do you wrap the idea around your head that you have an infection in your brain? I mean, that really sounds like a science fiction movie or something, doesn't it? Or it sounds made-up. 'I'm sorry mam, but you seem to have a brain infection.' It's just not a common thing that's talked about.
I really was forlorn for a long while and cried and cried when I my doctor told me the test was positive. I was so scared at the possibility of having Lyme Disease and now I knew I had it. And it was in my brain, evident by all the neurological problems that escalated quickly - the strange smells, the hearing problems, the bumping into stuff because my depth perception was off. Remember in my story when I got the cat scan and when I was in there had the really strong smell? That's because I had a bacterial infection in my brain. And I still have it.
I operated out of fear at first, scrambling to take as many drugs as I needed to, eating all the right stuff, taking all the right supplements - because, come on, things were serious here, we're talking neurological stuff. And that whole antibiotic thing was really ironic since I am normally of the mind that prescription drugs should be used as a very last resort since they are so powerful and I don't 100% trust drug companies in general to be testing things appropriately, or to have my health as their main interest, instead of the bottom line. In fact, I think the antibiotics I'm taking now are the 2nd time I've used prescription drugs for anything in my entire adult life, after a short course of an anti-parasitic drug when I got crypto and h. pylori. (That sounds like the name of some strange foreign kid's show, doesn't it? The Tales of Crypto and H. Pylori) Ha ha ha!
So. How do you deal with a fear that you can't escape? You can't turn the lights on, you can't just stay out of the ocean, and you can't get away. My infected brain, blood, and organs are with me all the time. Well, the biggest way to overcome my proverbial Boogeyman was to take as much action as I could. This meant: investing as many resources as possible into finding doctors, treatments, and making all the changes I could to save my life. So many Lymies really struggle with this. I mean, imagine: you can't work anymore, just when you need to spend a whole lot of money on getting better; and you need to make lots of changes like diet and keeping all your pills and supplements in order just when you don't have the energy or brain-power to do so! It really is some kind of weird punchline. But, this is when you really need to dig deep. This is a serious fight and fights are never easy. That's why they're called fights. For me, taking all this action and being empowered to take charge of my life and my health feeds me a lot. There is no one to blame, there isn't a way to run away and hide under some coats and hope that everything turns out fine. My health isn't anybody else's responsibility but my own. This is my body. This is my life. This is my responsibility to do the very best I can - and it means staring that stupid Boogeyman right in the face and saying 'I will win. Not you. Because I am bigger and stronger. You're just a bunch of stupid bugs. And I am bigger and stronger than bugs.'
Having Lyme can be devastating and heart-wrenching and scary, to be sure. But you also have to take heart. No problem is unsolvable. No challenge is too great. People can be so much stronger and more courageous than you ever would have imagined. You included.
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