Right now.

(First of all, before we actually get into this post, I just wanted to say hi! I feel like I always just jump right into writing without acknowledging the fact that you're on the other end of the internet reading. So, hi there. Thank you for reading!) 

Focusing on right now is hard when you're sick. You always want to compare now to then. Today to yesterday, or today to tomorrow. It's so incredibly easy to get frustrated when you can't do today the same things you could do a week ago. And it's so easy to fall into a rut thinking about what you're missing and what you might not be able to do ten years down the road because of everything your disease is taking from you right now. And yes, those things matter. It's important to look back on the past, and it's important to look forward to the future...but not for the reasons that we do it. 

Let's take my right now for example. I could think back to a couple days ago when I was five hours away from home having an awesome adventure at a safari park with my best friend, and I could 1. be sad that I'm feeling so much worse today than I was that day, and wish I could have that day back....or, 2. be thankful that I had that good day, and be excited for more days like that in the future. (If you're lost, the one I should be doing is number 2.) It's so easy to find yourself feeling bad about the days you're having based on the days you've had...but, what's important is to get yourself into the mindset that you're having a day at all. And you will have more days, if all goes as planned. 

Before I started writing this post, I was sitting here feeling sorry for myself. Not because my life is bad, or because I have it worse than anyone else...but because I had a good day and now it's gone. But that's ridiculous. I'm totally missing the point. I had a good day. Yes I came home in a ridiculous amount of pain. Yes I slept half of the next day away. But I did it. I went five hours away from home (stay tuned for a future post about sick-girl-anxiety), I had an awesome time, and I recharged a little bit with my best friend by my side. I did it. And that's nothing to take for granted. 

The future is a tricky thing too. As you probably know from reading my blog in the past (if this is your first time reading, nice to meet you...now go read the rest of my posts!) I don't work. I'm twenty four years old and I have no job because I'm sick. My friends are getting awesome jobs, moving up in their companies, getting bonuses...and I'm reading books about how to sell things on Etsy so I can work around doctors appointments and bad Lyme days. It's hard not to sit here and think about my friends getting engaged, getting married, having kids, buying houses, and steadily moving forward with their lives. I look at my calendar everyday and almost everything is medical related. Doctors appointments. Pre-op appointments. Surgery dates. Days I need to give myself a shot. And when all you see is that, it's hard to convince yourself that the future is going to be any different. But what's important is to remind myself that it's not my future...it's my right now. 

You know what else is hard? Other people. They see that you're 24 and not working. They see that you don't seem to be moving forward with your life at the same rate as most people. They see that your life is different. But, unless they take the time to look further into it, they don't see why. They don't see your right now; they don't see your today. And it's hard to put your blinders up so you can't see outside of your right now, while at the same time wanting people to be able to see into your right now. I haven't quite mastered it yet. But when I do, I'll let you know the trick. 

But, for now, it's important to know that your right now is okay. It might seem scary (and by might I mean normally does, and by scary I mean absolutely terrifying) but, it really is okay. 

Try not to look too far back, or too far forward. But, if you find yourself doing it anyway, try and focus on the good things. The things that brought you to this point, and the things that you're looking forward to. Comparing right now to the past in terms of what you could do then that you can't now isn't healthy. Dreading the future because it's turning out differently than you expected is counterproductive. 

So, I leave you today with one of my favorite Dr. Seuss quotes..."today you are you, that is truer than true--there's no one alive who is you-er than you." Because, sometimes all you can say when you look at your day (just talking about Dr. Seuss made me a poet) is that you made it through. You did it. You survived. And that's okay. Right now is okay.

Believe in yourself. Believe in your right now. That's what matters. 

5 tips for surviving summer with Lyme.

1. Gatorade. Don't listen to anyone who tells you Gatorade is only for athletes. The point of Gatorade, and other sports drinks like it, is to replenish the electrolytes that your body loses. And, when you have Lyme your body doesn't function like the "normal" human body does. So, the electrolytes that would normally be just fine in a healthy body aren't fine in ours. (I honestly think my electrolytes get a kick out of randomly jumping out of my body and leaving me feeling like a grape on it's way to becoming a raisin.) 

Have a headache? Drink some Gatorade. Going for a walk to the mailbox (which is pretty much the equivalent of a trek up Mount Everest)? Drink some Gatorade. Having heart symptoms? Drink some Gatorade. When you are feeling something, your body is telling you something. And a good way to start listening to it without having to automatically jump to taking medication is to try to replenish your electrolytes first.  

2. Let yourself rest. There is nothing wrong with a nap (or three) in the middle of the day. If you get up in the morning and take ten steps to the bathroom and feel like you can't go any further, fine! Go back to your bed. Or make your way to the couch and flop back down there. And try again later. If you do what your body needs today, you will have plenty of tomorrows to go out and live your life. 

3. Sea-bands. I don't know about you, but I get nauseous. I get nauseous a lot. For logical reasons like riding in the back of a car. And for not at all logical reasons like reaching for something across the table or simply opening my eyes in the morning. (Like, what?!) And, sometimes--a lot of times--you just have to push through it. I've found that the most helpful product in making it through my moments of ridiculous nausea is my sea-bands. All they are are pressure point bands that you wear on your wrists. They have a plastic ball on them that pushes on the pressure point in your wrist that is supposed to help relieve nausea. And they actually work! They're ugly. And they make your wrists sweat. (They look like eighties aerobic class sweat bands.) But they work. I'll take it. 

4. Showers/baths. Now, don't get me wrong...I suggest everyone, whether you have Lyme or not, takes a shower/bath. And I suggest it all year round, not just in the summer. But, when you have Lyme, and you have to go outside (which is unavoidable sometimes) there is nothing like a shower/bath with cool water to help your body remember that it is supposed to be functioning. Don't use hot water, that will only make you feel worse. When you have a Lyme-y body, hot water sets off the detoxing process and leaves you feeling worse instead of better. Stick to cool water in the summer months. Putting cool water on your skin is similar to drinking Gatorade--it gives you a little bit of life back. 

5. Forgiveness. This is the most important one. As a Lymie, summer is going to be difficult. That's all there is to it. Breathing is harder. The clothes that you have to wear if you're going to be outside are generally tighter against your skin than the hoodies and sweatpants we can get away with in winter. Waistbands of shorts hurt. Bathing suit seams hurt. And even simple things like sweating can set off weird reactions in our bodies. And lord help us if we're on antibiotics. Say goodbye to even the tiniest bit of sun. Summer is a struggle. And you have to forgive yourself, and forgive your body, or it's going to be even harder. Can't go to the beach with friends? Go to something at night, or something indoors. Can't do that either? That's OKAY. Forgive yourself. Even if your friends don't, you have to. Summer is hard, but cooler days are right around the corner. That's the awesome thing about summer, it doesn't last long. (Unless you live somewhere that doesn't have cool seasons...in which case I'm sorry. Maybe you should buy a lot of ice packs.) 

Take it one day at a time. All year round, but especially in summer. If you can make it through the hottest, most uncomfortable days with Lyme, you can do anything. And, when all else fails, listen to your body. You know you better than anyone else does, no matter what anyone else thinks. If you listen to your body, and do what it needs you to do, it will repay you with moments of relief and less pain. And those moments will, hopefully, get longer and longer, and show up more and more often. 

Take on summer now (gently, slowly, cooly, and carefully) and you're one step closer to fully taking on life again. 

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.