02 December 2013

We had just finished a round of jumping jacks and sit-ups. The coach called for everybody to take a breather and I headed to the water fountain, wiping sweat from underneath my nose.

As I looked down at my sneakers, I suddenly realized I didn't know if I was really in the body that was controlling them, making them move forward. The fluorescent lights overhead pricked at my eyeballs, suddenly sore, forcing me to close them tight.

When I re-opened my eyes, everything was made up of stars. It would have been beautiful if I didn't feel the oncoming threat of a fainting spell. Bumping into the water fountain, I more than welcomed the stream of water into my mouth...as everything went black and I plummeted down, hitting my head on the steel as I fell.

Waking up, I felt so blank. Even though I had a headache, I was pretty sure that was vomit on my tank top, and my eyes were so sore I didn't dare move them, I felt no emotion. I was getting used to being sick, I thought.

But that was just the beginning.

The Ol' Lyme Disease (OLD)

I feel old. A lot. My family and I make jokes that I am inhabiting the body of a 90-year-old woman (and possibly the brain, too, sometimes). My joints hurt, crack, pop, swell; I have to take it easy with everything--including walking, bathing, even sitting in the sun can be detrimental! My memory has its good days, but mainly its bad days; I have "brain fog" and problems with "word finding." A girl who used to be able to go through a book a day now cannot go through a page without having to reread the same sentence over and over again, usually because of the inability to comprehend words, but sometimes due to concentration problems. I am fatigued every day and it is not because I have overexerted myself (unless you count lying in bed as a source of exhaustion). I am old. 

But when you are diagnosed with Lyme disease, which seems almost impossible considering our unreliable tests for it, it's not about how old you feel, but about how scared you are. 

In case you are one of the lucky ones to either find a tick on you, or to see the bull's-eye rash and get immediate treatment such as oral antibiotics like Doxycycline, I am so glad you were able to take care of yourself and find a doctor who was willing to take care of you as well. I'm also going to say this: we're different--you're most likely cured. I'm not. It's controversial. 

Here's a few things you might not know. For one thing, these ticks that you're looking for...they're about the size of a poppy seed. Sometimes I have a hard time finding a mole on me that I wanted to look at again, much less something that small. Let me just give you a visual. 

Now that you're completely freaked out and running to the bathroom to check yourself out thoroughly, I'll give you another heads-up. The bull's-eye rash that everyone (mainly doctors) say you absolutely must have in order to be diagnosed with Lyme disease? Yeah, that rash, called the erythema migrans, is not found nearly as much as claimed. But if you ever do see it, please, please--go see a doctor. And even if that doctor does say that "it's probably nothing" or you're a "hypochondriac" for even thinking something is wrong, be persistent. Please! 

If it's tough to get a diagnosis, that means it's even harder to receive treatment. And the longer you wait...well, this disease is not for wimps. The list of symptoms for Lyme disease is over 100 bullet points long, but don't think that everyone diagnosed has all of those symptoms or that they affect everyone the same way.

For one thing, the symptoms and the damage definitely depend on the amount of time you have had the critters in your system. It's been estimated I've had Lyme disease circulating in my body for around 10 years; because of this, it's hard to think of one part of me that Lyme has not affected--including my heart, my skin, and even my brain. 
Having something affect you neurologically is hard to describe to others without sounding crazy, especially when most doctors and some people already think you're insane, but it's nothing I ever want anyone to go through. 

Now the pain my body makes...chronic migraines, GI problems, constant aching muscles...that's something I can explain, but have done so more times than I want to remember. Both the pain and the explaining become tiring. 

The worst of it all has to be the Herxheimer reactions, though. 

My treatment involves antibiotics and along with that comes what is called "herxing," a reaction to the medicine in which the bacteria is being killed off. I've had some pretty serious Herxheimer reactions; in fact, they are almost worse than the disease itself. I would take anything, though, anything to recover. 

In my next Lyme disease post, I will talk about my Lyme-induced seizures. 

If you are a Lymie and you found this post, what was your first symptom?
OR If you have an invisible illness or chronic illness other than Lyme disease, same question?

I'm more than open to questions about my disease and would love your comments: oneticktobesick@gmail.com 

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