Lyme-cation?

It's been a while since I wrote here, and I was going to title this post "Lyme-cation," meaning that I had been taking a break from writing about my Lyme. But, the more I thought about it, the more I realized that's a very misleading title. Because, I can't take a Lyme-cation. No matter how hard I try, or how much I work at it, I can not get away from my Lyme. Ever.

And, there are no fancy words, eloquently written phrases, or jokes that I could write right now that would describe that feeling better than these two words: it sucks. 

I think I've tried just about everything to get a break from my Lyme. 

--I've gone on vacation. But it's hard to forget about your Lyme when you open your luggage and find the bag of medicine that you've packed that rivals in size your bag of actual clothes for the weekend. And it's hard to push it to the back of your mind when you're trying to go shopping, or explore a new place, only to have to go back to the car because you're overwhelmed by lights or smells. And it's hard for the person/people you're with to have a good time when you're constantly leaving them (sorry, Mom!). So sure, vacation sounds like a good idea, but it's actually a lot harder than it seems. 

--I've gone to a friend's house. But, again, any length of time away from home requires medicine. And, if I don't stay overnight, I don't have to pack medicine...but I have to leave eventually to go home to take medicine. There's never the option of a spontaneous overnight anywhere without planning ahead of time to make sure you have your meds on hand (totally defeating the purpose of your spontaneity). 

--I've gone out and done the things a "normal" twenty three year old girl does. But, it's not worth it. It's not worth the pain that comes the next morning and sticks around for the next few days. Alcohol does bad things to a lymie body. Dancing does bad things to a lymie body. I have pretty much discovered the hard way that Lyme doesn't like to have fun. Biggest buzz kill award goes to...Lyme!

--I've woken up in the morning determined to go on with my day without thinking about Lyme from that point forward. And then I go to get out of bed and put my feet on the floor. And the pain that comes along with that seemingly simple task blows that whole attempt for me. Good morning, you have Lyme! 

And, it's not even just the days that you make a conscious effort to forget about it. Lyme has a way of finding its way into just about everything, whether you are trying to avoid it or not.

--Going to a new doctor, for something not Lyme related (i.e. a new dentist)? Have to tell them you have Lyme. (Because how else do you explain the absurd number of medications listed on your new patient paperwork?) And in telling them you have Lyme, you have to brace yourself for their response. Are they going to believe in Lyme? Are they going to tell you that you're crazy? Or are they going to be understanding? The anxiety that comes along with mentioning the L-word to someone new is indescribable.

--Want to go out to eat? That's fine. But, are they going to have anything you can eat? Or are you going to have to eat something that you shouldn't just so you're not eating literally just a single piece of lettuce? Is it worth it? Sometimes, yes. But sometimes it's not worth the struggle. And sometimes, if you're like me, you will eat something that you think is totally fine, only to end up with a swollen tongue and hives. That's a fun game. Not. 

--Want to go outside on a nice day? I'm not even talking exerting yourself (because god knows that's a whole 'nother topic) or doing anything crazy...I'm talking about literally walking from your couch inside to a chair outside. Like, standing up, walking, opening the door, walking, sitting. NOPE, sorry! That's crazy talk. Your heart starts to flutter, you get dizzy, everything starts to look a little weird. Better go back inside. We'll try again in November.

I could go on, but for your sake as well as mine, I will end the list here. 

The crazy thing about Lyme bacteria is that it is spiral-shaped. It burrows into every part of your body, and you never know where it's going to strike next. 

The crazy thing about living with Lyme is that the battle is you-shaped. It burrows into every part of your life, when you least expect it, and you never know when it's going to strike next.

And, there are no fancy words, eloquently written phrases, or jokes that I could write right now that would describe that feeling better than these two words: it sucks.