A bed--survival key #2

#2: a bed (or a couch, or a reclining passenger seat in the car, or even a floor really.) 

Now, this one seems pretty self explanatory. Everyone needs a place to sleep, right? Well, yes. That is true.  However, I don't just mean a place to sleep at night. I don't mean you need a bed (or a couch or wherever you are able to sleep) just because it's a human necessity to sleep. I mean, there are times when you all of a sudden NEED to lie down or else your body will force it upon you in the form of passing out. And, at that point your body has given 100%, plus some, and it needs to recharge. 

I like to think of my bed as my charging station. 

I'm that phone that gets to 30% and then suddenly the battery goes dead and it needs a really long time even on the charger to come back on. We've all had that phone and we all know how annoying it is. 

Well imagine that happening to your body. 

You're chugging along (most days your chugging is along the lines of the little engine that could; "I think I can. I think I can.") and then all of a sudden your body is done. Usually without warning. And usually without much time to do anything about it. You need that charger and you need it now. Or else you're going to be absolutely no good for quite a while. 

It's not a question at that point--you have to lie down. 

So there's always that thought in the back of your mind of "where am I going to be able to lie down?" When you walk in a new place, you scan the room for a place you can at least sit, if not lay. And if all else fails, you find the exits so that you can get to your car as quickly as possible. 

(P.s. I can show you all of the quickest ways out of Walmart, Target, Michaels, etc. if you ever need to know.)  

Somewhere to lie down is 1,000 times over a survival necessity. 

You probably don't think much of your bed. It's just a thing. But, as I write this from the comfort and security of my own bed--knowing that I'm not going to fall down, I can close my eyes safely if I need to, and if I get dizzy I'm not going to go anywhere--I'm super thankful. 

Best friends--survival key #1

I've decided, for the next 10 days of posts, to talk about 10 things that you can't live without when you have Lyme--or any chronic illness, probably. 

So here we go! 

#1: a best friend. 

I'm super fortunate in the friend category. I have amazing humans that have somehow decided that I am an okay enough human that they want me in their world. How and why they have decided this, I'm never really sure. I am, however, always incredibly grateful. 

A best friend is an integral piece of survival when you're sick. Even though they don't necessarily understand the ins and outs of your illness or your exact struggles, they know the ins and outs of your heart. And, when it comes down to it, that's what's really important. 

A best friend is your sounding board. Your shoulder when you need one. Your distraction when you need one. Your chef when you need one. Their couch is your movie theatre seat when you can't do anything else. And they fill in every gap in between. 

A best friend gets it when you don't talk to them for a little while because your illness is taking over. A best friend doesn't make you feel guilty for the life you're having to live now. And a best friend will help you pick up the pieces--because, when you're sick, there are always pieces to be picked up. 

Without my best friends, I would be much more lonely, a lot more grumpy, and all around less of a functioning human. 

Without my best friends this journey would be hopeless. 

If you're reading this and you're one of the people that I am lucky enough to call my best friend, thank you. I am forever grateful. Forever honored to be walking this life with you, even though I can't always keep up. And forever thankful that you've stuck around. I truly believe that "in sickness and in health" is a friendship vow, as well, and I'm so glad you are honoring that one. I love you. 

And, if you're reading this and don't know me or you don't feel like this applies to you, I appreciate you reading, anyway. Everything that I'm going to talk about for the next 10 days (9 after this one) is an important part of awareness, too. Each one of these things is necessary, outside of the actual meds and stuff, for survival when you're sick. Because survival doesn't just mean that your heart is still beating--survival goes much deeper than that when it's what you're fighting for every day. And I hope over the next 9 days I can show you that. 

Thank you. Whoever you are. Thank YOU. 

The truth.

Sometimes I wonder how things would be different if I told the truth. 

Now, don't worry. I'm by no means saying that the things I talk about/the stories I tell aren't the truth. I pride myself on sharing my truth if it's going to be of any kind of service or have any kind of positive impact on someone else. I will forever share the truth that people need to hear to understand the severity of Lyme and the importance of awareness. 

But sometimes I say I'm okay when I'm not. And by sometimes, I mean a lot of the time. Sometimes I say "oh I'm good" when in reality I feel like my insides are burning, there's a vice on my head and fire ants in my brain, and my finger joints feel like they have balloons in each of them. Sometimes I say I don't need anything when in all actuality I need a hug, a shoulder to cry on, and a couch to sit on with a friend just so I'm not alone. And sometimes I say I'm feeling better just because I'm tired of having to say that I'm not. 

"How are you?" "Well, my head has been hurting for almost 6 years straight now, but today it feels worse than normal. The back of my neck is so weak that it can barely hold my head up. I get nauseous and my whole body gets hot almost every time I eat. My hands hurt 24/7. My hips feel like they're being ripped apart. And it feels like my clothes are burning holes in my skin." 

"...I'm fine" 

Sometimes I say I can do something when I shouldn't. Sometimes I offer to do something for someone I love because I want to be able to, not because I'm actually okay enough to do it. And I also feel the repercussions of my decisions. For days. Sometimes longer. 

"No sorry, I can't do that. It will make my pain 10x worse, I will be as exhausted as if I were to run 5 marathons in a row, and my brain will be so tired that it forgets how to be a brain." 

"...sure, what time do you need me there?" 

It's a constant battle between only telling what needs to be heard and telling the whole story. I'm lying by omission. I'm preaching the importance of knowing and owning your truth but I'm not even telling the entirety of mine. Am I a hypocrite or am I just doing what I need to survive? 

I'm not sure if I'll ever really know that answer. 

But I do know that I will continue to tell the truth that you need to hear. Because, it's my sincere hope that by telling that truth you won't ever have to understand the whole truth. 

I hope you never have to understand the whole truth. 

A letter to this past year.

Dear Past Year--

I think it's time we have a little chat. Now, don't worry, this is not a completely negative letter. I don't totally hate you. I just have some things I need to say to you. Things I've been waiting to say to you.

First of all, thank you. 

Thank you for taking away some things that needed to be out of my life. Including that pesky gallbladder; fist bump on that one. Thank you for taking some people that were doing more harm than good. Thank you for making me realize that I can, in fact, live without people who I once believed would be around forever. And thank you for taking away some expectations that I was holding onto too tightly. 

Thank you for showing me that I'm stronger than I ever realized. And thank you for helping me realize who can remind me of that when I can't do it myself.

Thank you for helping me find a doctor who believes me. And believes IN me. And thank you for helping me find a friend who helped to get me there. 

Thank you for building my cheering squad. And thank you for helping me realize who really isn't on my team.

Thank you for keeping me alive. That probably should have been the first thing I thanked you for. That, ultimately, matters the most. And also wasn't an easy task, I know. 

But...don't get too comfortable with the accolades. I also kind of hate you. 

I hate the fact that you took me on such a rollercoaster ride but also left me stuck in the same place. I hate that I am still stuck in between so many things. And I hate that that feels so comfortable and so awful at the same time. 

I hate that you didn't bring me remission. No matter what I do. No matter how many new medicines I let them put into my body. No matter how many tests, scans, surgeries, and appointments I go to. No matter how hard I wish for it. I hate that it still feels so far away. 

I have so many mixed feelings towards you, past year. So many wonderful reasons to be grateful. But also so many legitimate reasons to be frustrated and angry. We went through a lot together, you and I. But when it comes down to it I'm glad to see you go. 

Thanks for another 365 days. But please grab your things and get out. 

A little bit of love, I guess,

Leigh 

Lyme month--year 4!

Andddd, it's that's time again! Welcome to year 4 of Lyme awareness month here with me! 

If you're reading this and you are new here--welcome! Thanks for stopping by. It is my goal every May (and really every day all year) to share my story, and the reality of Lyme with you. If I do my job here right, when the month is over you will be one more person who can spread awareness and do all you can to keep the people in your world healthy and Lyme-free. And that's amazing. Thank you thank you. 

If you're reading this and you have been around for a while--welcome back! Thank you so much for your continued support and love. It's amazing to have a place where I can share my truth, no matter how ugly it is, and have people who care enough to read it and do good with it. I appreciate you so much. 

If you're reading this and you have Lyme, too--you are not alone. I know that the concept of needing awareness for something that is your life can be weird. I know that this journey sucks. And I know how deeply lonely it can be. But please, please know that you aren't truly alone. I believe in you and I am on your side. 

If you are reading this and you love someone with Lyme--you are not alone, either. I know that loving someone with Lyme, or any kind of illness, can be so tough. But I hope you know that you're appreciated and your efforts don't go unnoticed. Thank you for all that you do. 

If you are reading this and you don't believe in Lyme, or you don't believe that it's as bad as I make it seem--I'm sorry that you can not see the scary truth that's in front of you. And I also sincerely hope that you never have to live a life that is considered by so many people to be fake or over-exaggerated. I hope that you never have to be told that it's all in your head. I hope you never have to be doubted as your body is fighting as hard as it can and your heart can hardly take anymore. I hope you never truly understand. Because I would never wish this on anybody. 

If you are reading this and you think you may have Lyme--please stop what you're doing right now and make a doctors appointment. Be your own advocate. And do what you need to do to save your life. And please, please contact me if you have any questions or need any help doing so. It matters. You matter. 

And if you're reading this at all--be sure to come back tomorrow for another post! I can't promise that every post this month will be eloquently written and pretty, but I can promise you the truth that needs to be heard. 

Thank you for being here. You are the best. 

Yes, you. 

Stop and think.

We need to talk. 

A few days ago someone told me that Lyme is "nothing." 

Nothing. 

(Insert slow eye blink here.)

Yeah, it's nothing. The fact that I've been sick for almost 11 years--debilitatingly sick for the last 5 or 6--is nothing. The big, puffy, misshapen scars on my chest that are a result of devices being placed in my chest to administer medication directly into my heart are nothing. The constant fear that I live in due to the uncertainty of my body's next move is nothing. The heart palpitations that make my whole body shake as I lay in bed at night are nothing. The frustration that comes along with not remembering words, or names, or places because my brain has been taken over is nothing. The searing, almost constant, pain in my fingers is nothing. The 24/7 exhaustion that never goes away, no matter how much I sleep, is nothing. The emotions that I have no control over--the sadness, the anxiety--are nothing. The fact that I've lost one organ to it and I constantly am fearful for the others is nothing. The anxiety that comes along with every new pain in my body--the fear that it's the newest pain that's here to stay--is nothing. The friends I've lost because of it are nothing. And the fear of losing more people in my life to it is nothing. The effects of the medications are nothing. The feeling of my insides simultaneously being on fire and having millions of tiny bugs running around in them is nothing. The fact that the air, my clothes, and anything else touching my skin can make me want to scream is nothing. The agony--because that's the only way to describe it--is nothing. It's nothing. 

I wanted to be angry. I wanted to say something not very nice back to that person. I wanted to tell them how I was really feeling when I read what they wrote. But I couldn't. I didn't. 

Instead I responded with something along the lines of: "I mean, I've been sick for almost half of my life. I can't work a "normal" job because of it. I live with my parents. And my life is nowhere near where I expected it to be at this point. So I wouldn't say it's nothing." The response I got--an explanation of all the things they've gone through that are worse than Lyme--was equally as frustrating and the conversation ended there. 

So, why am I telling you this? Well, I didn't just write this to tell you how much my life sucks. Because it doesn't suck. I'm happy, I'm beyond blessed and I'm so grateful. 

I wrote this to ask you to stop and think for a second. 

Stop and think before you tell someone that what they are going through is nothing. Stop and think before you minimize a struggle that you know nothing about (because if you did know anything about it, you sure as hell wouldn't be minimizing it.) Stop and think before you place judgement upon someone's story--someone's life. Just stop and think. You never know what someone else is going through. You never know how your words might affect them or the impact they might have in that exact moment. You just don't know. 

You would never want someone to tell you that your life, your truth, your something, is nothing. 

So please, just stop and think. 

Week two.

Let's talk about week two of treatment, shall we?

Week two sucks.

In week one you're still cautiously optimistic because it's new. In week one you're still thinking that maybe this treatment is the one that's going to work. Week one is when you don't know yet how it's going to make you feel. Week one is when you are just normal Lyme tired, not treatment tired. Week one is when you're still half human.

Week two is when it gets ya.

Week two is when the extras kick in. The extra exhaustion. The extra nausea. The extra feeling that your internal organs are actually on fire. The extra swelling. The extra feeling like your joints have rubber bands around them. The extra weird food cravings. And the extra weird food aversions. The extra hard time finding your thoughts. The extra tooth pain and the mouth tingling that you know is the beginning of mouth sores.

And here is where I would normally say that it also kicks up the extra hope and the extra motivation and the extra positive things. But if I'm being real right now, I don't think I have it in me.

Because I'm extra worn out. And I'm extra depleted.

And I'm extra thankful for my bed.