A Lymie Guide to the Holidays

With the holidays getting closer, there are a lot of mixed feelings around. There are those of us who love Christmas--every single thing about it. There are those of us who like Christmas, but don't fully get into it. There are those of us who are sad at Christmas, for one reason or another. There are those of us who are sick at Christmas. And there are those of us everywhere in between. 

Notice I didn't put "those of us who are sick at Christmas" into the same category as "those of us who are sad at Christmas." The two can go hand in hand, absolutely. Without a doubt. But they don't have to. Just because you're sick doesn't mean you have to be unhappy. And even if you are unhappy, it doesn't have to take away the magic and excitement of Christmas. 

But, it's not always easy. It's not easy to hang onto the Christmas spirit when you struggle to get out of bed. It's not easy when Christmas hurts just like every other day. It's not easy to watch your healthy friends go to ugly sweater parties, New Years parties, etc. when you can't. It's not easy to watch people live out their holiday season the way you used to be able to--the way you wish you could. 

So, I thought a Lymie's Guide to the Holidays might be helpful. Not just for those of you who have Lyme, but also for those of you who are around someone with Lyme during the holidays. 

So, here you go: 5 steps to not only surviving, but enjoying, the holiday season with Lyme. 

1. Breathe. The holidays can be overwhelming. That's not necessarily a bad thing, but it's definitely a true thing. There are a lot of things to do, a lot of people to see, and a lot of things that you are going to feel. You may not be able to keep up. You may feel like you're being left in the dust of the excited chaos of the season. But if you can remember to stop and take a deep breath, you're going to be okay. 

2. Allow yourself to be selfish. The holidays are supposed to be a time of giving, so having me tell you to be selfish probably sounds a little weird. But, hear me out. Because, when it comes down to it, allowing yourself to be selfish is a form of giving--giving to yourself. When you're sick, you have to learn to say no. "No, I can't come out tonight." "No, I can't go to the mall with you." "No, I can't go for a walk." And it gets a little old. You want to say yes. But, in order to make it through the holidays, you have to say no. There are so many holiday events. There are so many things to do. But you can't do them all. And that is okay. Be selfish. Say no. Think about the things you really want to do--be it Christmas Day with your family, a dinner out with friends, or whatever is the most important to you, and shoot for those. Give yourself the opportunity to rest so you can get through. 

3. Be thankful. If you know anything about me, you know that I am overly thankful and appreciative. But, not everyone is. And that's okay. But, if you haven't taken the time lately to thank the people in your life, what better time to do so than the holidays? Tell the people you love that you love them. Thank them for the things they've done for you. Thank them for sticking around. And, in stopping to think about who and what you are thankful for, you will be reminded how lucky you are. Even on your toughest days. 

4. Forgive. Forgive yourself for not having the year that you planned on having. Forgive the people in your life who may have just not gotten it, or the people who have left you behind. And forgive your body. Forgive your bones for forgetting sometimes that their job is to hold you up. Forgive your muscles for getting lazy. Forgive your brain for taking a break and leaving you hanging without words. Forgive your heart for losing its sense of rhythm at times. Forgive the bacteria that has long overstayed it's welcome. Forgiving won't take the troubles away, but it's necessary. Holding a grudge does no one any good. Forgive and move forward. 

5. Be mindful. Being mindful means being aware of everything in the moment. Your emotions. The way your body feels. The way your heart feels. The happiness. And even the sadness. Take it all in. And run with it. (Don't really run. This is a Lymie's guide, remember? No actual running here.) This will help you appreciate every second that you possibly can. It may not be easy to get through the holidays when you are sick, but it's possible. And if you make the effort to be mindful, you can say without a doubt that you are doing the best you can. 

I hope these ideas helped. And if they didn't help, I hope they at least made you think. If you are reading this and you have Lyme, know that you aren't alone. If you are reading this and you love someone with Lyme, know that you aren't alone either. But also know that your person with Lyme needs you during the holidays more than most other times. 

Together, with these steps and everyone's combined efforts, we can enjoy the holidays. 

It may seem like it's out of reach. It may be hard to remember what a holiday without Lyme feels like. And it may feel impossible to get into the holidays when things have been so rough. 

But, remember, regardless of anything else...

"The bell still rings for those who truly believe." -The Polar Express

"It's okay. I'm used to it."

As I was sitting in the doctors office one day last week, with a tourniquet around both of my wrists, willing the veins in my hands to show themselves so the lady could take my blood, I said something that I haven't been able to stop thinking about since. The lady was tapping my hand to get the veins to come up, and she apologized for having to work so hard and poke me so many times to get my blood. And, without even thinking about it I said "oh it's okay! I'm used to it." 

My intention in saying it was to try and make the poor lady feel better. She was the second person to be called in to try and get my blood, and she was struggling--at no fault of her own, at total fault of my veins--and I felt bad for her. I always do. I find myself apologizing every single time I have blood drawn because it's never an easy task for anyone involved. But, what really bothered me was the truth in what I said to her. 

"I'm used to it."

So often I brush off something that is happening or something that I'm feeling with those words. 

"It's okay. I'm used to it."

But, it's not okay. It's not okay to be used to pain. It's not okay to be used to fear, especially when it's fear of your own body. 

It's not okay to be used to waking up anxious, waiting to open your eyes to see if your head still hurts. It's not okay to be used to feeling like your heart is going to pop out of your chest when you have palpitations that just won't quit. It's not okay to be used to the stabbing pains that go on a tour of your entire body every day, stopping at each joint along the way. ("And to your left we have the enlarged spleen in its natural habitat.") It's not okay to be used to feeling like the ground isn't under you when you stand up. It's not okay to be used to being afraid to go to sleep when you're feeling bad because you're afraid you won't wake up. It's not okay to be used to struggling to remember the name of something that you use every single day. It's not okay to be used to putting chemicals into your body. And it's not okay to be used to feeling like you're going to die without them. 

It's not okay for your friends to be used to you canceling plans on them time and time again. It's not okay for your family to be used to you having to go to the car during a shopping trip because the lights are making you sick in the store again. It's not okay for the people that mean the most to you to be used to you dropping off the face of the earth for a few days because you have to just sleep off the pain.  

It's not okay. 

And, I will continue to tell the blood draw lady that it's okay. I will continue to shrug my shoulders when I wake up with a headache still because, 4 years later, I am used to it. I will continue to tell you that I'm okay with missing out on yet another family function or another day with friends, because it happens all the time. 

But, it's not okay.

Being used to being sick is not fair. And it will never be okay. 

Do's and Don't's of being a person with Lyme.

I have found myself getting really frustrated and confused lately by some things I have been told/have seen/have experienced in the lyme world. So I think it's time for a recap of things that being sick allows you to do vs. things being sick doesn't give you the excuse to do. 

Things being sick allows you to do:

1. Tell your friends, your family, and any other people in your life that you love, that you love them. Often. And sincerely.

2. Appreciate the little things. As cheesy as that sounds. 

3. Take the time to do what your body needs you to do--whether that's sleep all day, sit outside for some air even when it's 35 degrees out, or take 3 baths in one day. 

4. Relate to House episodes more than you ever thought you would. And be annoyed when they say something that's not right. Or when they give a medicine for something you've had that same medicine for and you haven't gotten better but they do. (And then get even more annoyed when you realize you're annoyed over a fictional character's health.) 

5. Really figure out who are you, what you want to do when you're better, and what really is important in your life. 

Things being sick does not give you the excuse to do: 

1. Beg for attention, ask for money all the time, believe that you deserve things handed to you. 

2. Give up on your friends. If your friends are willing to come to you, or do things that you are able to do with them, grab onto that and never let go. Not everyone is lucky enough to have the friends that stick around, so if you do, cherish it. If they're not giving up on you, don't give up on them. Yes they can't fully understand, but if they're still around they're willing to try. And that's worth it's weight in gold. (Or prescription costs. Worth it's weight in prescription costs.)

3. Be angry all the time. Sure, being sick is ridiculously frustrating. And I would be the biggest liar ever if I sat here and said I never got angry. I get angry for lots of reasons related to my health. But I also am really happy. I'm a really happy person 97.6% of the time. And that's okay. Just because I'm sick doesn't mean I always need to be a grump. And it doesn't make me any less sick just because I don't always dwell on how bad it is. The world isn't out to get you. You're out to get the world. And it's always worth the extra effort it takes to kick that anger and be happy. 

4. Think that you're so much worse off than everyone else. Because, maybe you're right. Maybe you are a lot sicker than a lot of people. But it's not a competition. I don't think any differently about you because you're less sick than me. And I wouldn't think any differently of you if you were more sick than me. I am me and you are you. It's not a competition. It doesn't do anyone any good to compete. 

5. Bring your health into ever single conversation ever. "The weather is beautiful today!" "No, it's 67 degrees. And one time when it was 67 degrees out I had this really bad headache and ended up in the ER because it was so bad because I'm really sick and I am on a lot of medicines because I'm really sick because I have lyme and I'm probably sicker than you and anyone you know and I win. I don't know why you like this weather." (Dialogue based off of actual events.) why? ...why? 

And, of course we all slip up. It's easy to get stuck in a lyme funk and not even care. But I just needed to throw it out there as a reminder. 

Positivity.

The way I look at it, every morning when you wake up you have two choices. You can choose to be positive, or you can choose to be negative. Okay, so you can also choose which cereal you want to eat, or if you'd rather have a cookie. So, I guess you really have more than two choices. But for the sake of this post, we're going with just two: being negative or being positive. 

It's easy some days to automatically choose negativity. If the day before ended badly, why not just assume you're going to have another bad day, right? I get that. I think everyone feels that way some days. But, no matter how the day before ended, it ended. It's over. And you have the incredible opportunity in front of you every single day to be positive. No matter what. 

Lately I have seen more negativity than I know what to do with. On Facebook. On the news. On Twitter. In real life. It's constant. It's overwhelming. And it doesn't make sense to me. Of course there are reasons to be negative. There are reasons to be in a bad mood. There are reasons to hate everyone and everything. I'm not sitting here telling you never to feel that way, ever. If I did that, I would be the biggest hypocrite in the world and I would suggest you never read what I had to say ever again. 

But, what it comes down to is really your choice. Are you going to let something that upset you today continue to brew and fester (ew) and take over your world? Or are you going to stop it dead it its tracks? Are you going to wallow in it? Or are you going to cry it out, eat some cake, and move on? It's your choice. And no one can take that from you. But, you owe it to yourself to make the decision that is going to make your life better. (Note: that choice is positivity.) 

Now you're probably wondering why I'm sitting here telling you what to do when I don't even know your story. And, you're right. I don't know your story. But that doesn't matter. You know your story. And the power to choose negativity or positivity is in your hands. Not mine. After you finish reading this, I'm out. I have no more control over anything regarding your life or your story. Your story is your story, just like my story is my story. And there's something uniquely beautiful about that. But what's even more beautiful is positivity. Add those things together and you have a recipe for success--a recipe for happiness.

So now I'm handing you the mixer, and leaving you with the choice. If you are reading this thinking that I'm absolutely crazy and that there is no way to always be positive, you are half right. (The half about not always being positive, in case you weren't sure.) And if you are reading this thinking that sometimes it's hard to be positive, you are absolutely right. It is a challenge. An ongoing challenge. But, if you're reading this thinking about taking on that challenge, even just for one day (because after one day you will realize that it really is worth it), my work here is done. 

So, tomorrow morning, it's all you. And if you can't do it tomorrow, try the next day. That is okay. It's not easy. That's why it's called a challenge. But, I'm in this challenge with you. And I know you can do it. 

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.