Fear.

I have written a few posts lately and then deleted them because I didn't think they sounded right--too whiney, too much like I was begging for attention, too jumbled--just not right in one way or another. But I'm going to try again. And if you are reading this, then I succeeded. Yay me!

Sometimes Lyme is really scary. I try not to focus on that aspect of things. But, it makes its way in there every now and then. And fear is a big emotion. A big, heavy, rude, nasty emotion. And, no matter how hard you try to push it away, it pushes back just as hard, sometimes even a little harder. 

(If emotions were a thing you had to bring home to meet your parents, fear would not be the one to bring.)

And, sometimes, fear can be productive. It can motivate you to get things done, or to make a choice. But most of the time, it sucks. And, right now in my life, it's not productive at all. It's heavy. It's confusing. And, sometimes, it's damn near paralyzing. 

Right now, as I'm writing this, there are tears dripping down my cheeks. And I don't know why. I have no explanation as to why I'm crying, or why I've been randomly crying off and on all day. I'm not sad. I'm not angry. I'm not any kind of anything that should make me cry. But, out of the blue, all day, I've been crying. 

Now, for most people that wouldn't be scary. It's just an emotional day. But, for me, it's scary. It's scary because, for the last few days, I have been able to feel the Lyme moving through my body. I can feel it looking for its next victim, its next place to hide. And today, I can feel it in my brain. (Yeah, my brain. It's as creepy as it sounds. It feels like my brain is shaking. And it feels like there is something fuzzy in my head, making everything a little harder to understand, a little harder to say, and a little harder to make into thoughts. It feels like I'm living in a marshmallow with the occasional shaking of a snow globe.) And, it scares the hell out of me to think that the reason I'm crying is because the bacteria is exploring my brain, and leaving its mark on the part of my brain that controls my emotions. It's scary to think about where it's going to make itself at home next. I find myself feeling something and immediately worrying that it's going to be like that for the next four weeks until things move around again. 

I want it to stop. I want to feel in control of my emotions again. I want to feel in control of my brain again. I want to feel in control of my body again, in general.

And, I may be tough. I may be strong 99% of the time. But sometimes, no matter how hard I try to convince myself otherwise, Lyme is really scary. 

Gratitude, pt. 2

There are two things in life that I can't seem to wrap my mind around no matter how hard I try. The first is math. And the second is being ungrateful. 

I'm pretty sure I have written before about gratitude. I think I've mentioned that if I were to have to choose one word to describe myself, it would be "grateful."

And so I don't really get it. I don't get how someone can go through life without that. How can you get up every morning without thanking your lucky stars for simply waking up that morning? How can you go to bed without being thankful that you made it through another day? 

Sure, I have days that are terrible. We all have days that are terrible. That's life. But it doesn't matter. Getting through a bad day is getting through a day, regardless. And having gotten through it means it's over. Sure, maybe the situation that caused your bad day isn't over, but the day itself is over. And every day is a new start; every day is a new chance. 

And, I don't mean "I don't get it" in the sense that I can't believe someone would not live with the attitude of gratitude. (I just wrote and erased about five different ways to write that so it didn't sound cheesy, but it didn't work, so I resorted back to the cheesiest.) I mean "I don't get it" in the sense that I actually, sincerely do not understand. I'm not insulting those who aren't grateful. I guess, what it really comes down to is that I am grateful to be able to be grateful. I'm grateful that I have the mindset that allows me to feel the sincere gratitude that I pride myself on every single day. And when someone in my life is so actively ungrateful, I just can't wrap my mind around it. 

In case you're having a hard time feeling grateful tonight, here are a few things that might be able to spark some gratitude in you. No promises, but hope you might be able to find at least one thing on this list that will help you. 

1. It's almost Fall. And Fall means cooler weather, pumpkins, and the best candles at Bath and Body Works. 

2. You are reading this. Which means you have some method of getting on the internet. A smartphone, a computer, a computer at the library, a friend's computer. Whatever it may be. 

3. Pajama pants. There are few things better than putting pajama pants on at the end of the day. If nothing else, it's a sign that you made it. 

4. The new Dancing With The Stars cast was announced yesterday. 

5. Bath and Body Works body wash can double as bubble bath. I recently discovered this, and now I'm using up all the smells I've received as gifts and don't really want to use as body wash. Perfect solution. 

6. In number 5, I used the words double and bubble. Unexpected rhyming is the best kind of rhyming. 

7. Technology. Some of the most important people in my life I have to communicate with solely through technology. It's weird to rely on something that our parents didn't even have, but it's also the greatest thing ever. 

8. We have options. Every single day. Even if the only choice you make in a day is what to wear, or what to eat for breakfast, or how many more episodes you're going to watch before you go to bed, you have options. And they're yours and yours alone. Imagine a world without options. Options about how we live our life. Options about who we have in our life. Options about which font to use. So many options. 

9. Chick-fil-a sweet tea. Enough said.

10. You have the choice to change your attitude right now to one of gratitude. If you found something in this list that inspired you, great! Now take it, sleep on it, and wake up tomorrow and run with it. I guarantee your list of reasons to be grateful will grow without you even realizing it. 

Sometimes it takes work to be grateful. Some days in the darkest moments it's hard to remember why it's worth it to search high and low for those reasons. But it's always worth it. 

I've been told many times that my attitude is awesome. But what it stems from is gratitude. 

I am grateful. 

And you can be too. 

Distance.

Hi, I'm Leigh, and I'm in a long distance relationship. 

I am in a long distance relationship with my life. 

("How in the world can you be in a long distance relationship your life?" you may be asking.  Well, don't you even worry, I am here to explain.)

Some days it feels like the distance between sick Leigh and healthy Leigh is far beyond anything that I could ever travel. Far beyond anything achievable. And there's no amount of frequent flyer miles or hotel loyalty points that could make the trip any easier. 

My life is really far away from where I want it to be.

And, like any long distance relationship, it comes with a lot of emotions. Fear. Anxiety. Uncertainty. Jealousy. Anticipation. Hope. Excitement. And every now and then an emotion comes along that you didn't even know was possible and it throws itself into the mix. 

There are days when it doesn't seem too bad. Some days it's exciting to think about what you have to look forward to when distance is no longer a factor. And some days it's absolutely terrible, heart wrenching, and soul crushing. 

The fear some days is palpable. I wake up in the morning and the thought of going on with another day is physically painful. The fear just about takes over. But that's when that hope and excitement has to come in. The hope that some day the distance will go away and everything will be better. The excitement that you imagine yourself feeling when you can wrap your life up in your arms and never let it go again. (Maybe I should make a sign to hold up when it comes back, in case it forgot where to go since it's been gone for so long. You know, like people hold up in the airport?)

Sometimes the anxiety is paralyzing. What am I going to be doing when the nausea strikes to the point that I have to curl up and sleep to avoid throwing up? (because throwing up would mean throwing up my medicines, which is counterproductive.) Who am I going to be with when the dizziness takes over and I have to leave a store before I pass out? Who am I going to be having a conversation with when my brain decides it's not going to work with me and I'm left stumbling over my words as if I don't speak English? The anxiety about what's going to come next--the uncertainty of it all--is something I would never wish on my worst enemy. 

And, sometimes, it's impossible not to be jealous. It's hard to watch people achieve everything they want while I'm floating just out of reach of not only myself, but my goals and the things that I've worked so hard for for so long. It's hard not to envy that person who gets to go on regular dates with her life. Or the person who is introducing his life to his family at Christmas. It's hard to be the one who can't bring my life along, because it's so damn far away. And I'm still here, lonely and waiting. 

But the anticipation is always there, as well. A good kind of anticipation.  Reminding me that I always have something to look forward to. Reminding me that someday I will be able to reach out and grab that life again. Reminding me that someday I won't have to wear any more hospital gowns. I won't have to answer any more questions about my health history. I won't have to rip any more tape off my arm after the four attempts at getting my blood in one day. I won't have to take any more medicine that may or may not make my body rebel violently. And I won't have to wake up anymore wondering if today is going to be the day that things start getting better. 

The anticipation is killing me. But killing me in a good way. A hopeful way. 

And, just like any other long distance relationship, I'm not saying I don't love my life. It's actually quite the opposite. If I didn't love it, I wouldn't put in the effort to get it back. If I didn't love it, I wouldn't think about it every second of every day. If I didn't love it, I wouldn't write it's name with hearts around it on the front of my notebook. (Okay, so maybe I don't do that.) 

But what it really comes down to is this--I am constantly pushing towards the day when my life doesn't seem so far away. I am constantly putting myself through procedures, tests, new medications, and frustrating doctors appointments, because I will do anything to bring my life closer to where I want it--closer to where it should be. And, I'm constantly hopeful.

Now, don't get me wrong, that doesn't mean it doesn't suck. That doesn't mean it doesn't feel impossible somedays (a lot of days). That doesn't mean that I'm not constantly exhausted from the emotions that come along with it. And it doesn't mean I don't have days when all I can do is cry because I miss it. But, what it does mean is that I'm lucky enough to have my life at all--long distance or not. And, as long as my life will stick it out, I am happy to wait. (I may need a few extra boxes of tissues, a few more chick flicks, and some cookies while I wait, though.) 

It's hard work. But they say distance makes the heart grow fonder, and I couldn't believe that more. Every day that my life is far away, I learn to appreciate it more. I learn to appreciate myself, and my stubbornness and determination more. 

Lyme may be holding my life in a place far far away, but it can't keep it forever. 

And, I will be a stronger, better person when it comes back. 

Today.

This morning I put on my Lyme awareness shirt. I thought nothing of it. It was clean, I could find a headband that matched it, and I didn't wear it yesterday...check!

I was going to a new doctor today, for a totally non-Lyme-related problem. I was hopeful that I would get an answer to my pain, and that I'd be headed in the right direction again as quickly as it all started. I had no reason to believe otherwise. I've spoken here before about the anxiety that goes along with seeing a new doctor, but I didn't even feel any of that today. I was wearing my favorite lime green flip flops. My hair looked good. I was hopeful. 

I walked into the doctors office, met a friendly nurse, peed in a cup, and went into the room still hopeful. 

Then the doctor walked in. 

And, within 5 minutes all of my hope about the appointment was gone, everything that I know to be true was insulted, and I was left feeling like a puddle on the floor that the doctor had just stepped in, splashing parts of me every which way. I was angry. I was hurt. And I was walking out with no answers, and no relief. 

But then, I walked into the bathroom at a store a few minutes later, and I looked in the mirror. I saw my Lyme awareness shirt and suddenly it meant so much more than it did when I put it on this morning. I realized that my truth is still my truth. Despite the doctor's mean words. I'm still fighting. Despite the doubt that was thrown at me. I'm still winning. Despite the questions about whether or not I was even fighting anything real in the first place. 

And this doctor can knock me down, but he can't keep me there. There was a point when the things he said to me would have crushed me beyond repair. But as I was standing there looking at my Lyme shirt, I realized that my strength was still in there. 

Don't get me wrong, I'm still that puddle that the doctor stomped on today. But you know what's cool about a puddle? It evaporates. It doesn't stay on the ground forever. It makes its way back up to the sky. And that's what I'm going to do. 

I'm going to make my way back up. Maybe not tonight. But tomorrow is a new day. 

This morning when I put on my Lyme shirt, I didn't think anything of it. Tonight when I take it off, I will not take for granted the strength that it reminded me of today. 

If you're feeling like a puddle tonight, know that you aren't the only one. It's easy to feel like you have nowhere else to go once you're on the ground. But I promise you won't be there forever. 

I can do it. And I know that can do it, too. 

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.