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.

I have a body.

I don't have a perfect body.

I have a body that has been hurt. By myself. By others. And by processes and procedures in an attempt to make me better.

I have a body that's scarred. When I look in the mirror that's what I see. When I look at other people--in the store, when I meet them for the first time, whatever it may be--that's where their eyes are, too. Not meeting my eyes. Looking at my scars. "What are those?" "They're just scars. I had surgery there." "...oh."

I have a body that continually malfunctions. One way or another. One part or another. One organ or another. Without warning. Like it doesn't remember what it's supposed to be doing. Like it doesn't remember which way is up. Like it doesn't remember how to be a body anymore.

I have a body that I can't trust. A body that doesn't let me make plans for the future let alone get through one day without throwing me off my path.

I have a body that is scared. Scared that it isn't good enough. Scared that it isn't strong enough. Scared that it can't handle what's next.

I have a body that doesn't feel like I belong in it. With skin that feels too tight some days and too loose others. Like I'm going to pop out of it one minute and then like there's water under it and I'm floating ten minutes later. A body that doesn't even look like mine when I look in the mirror. A body that doesn't feel like mine either. Like I'm always either two steps ahead or behind it.

I have a body that has been taken apart and pieced back together. Things have been added to try and help me. Things have been taken away to try and help me, too. I've been a pin cushion. A puzzle.

I don't have a perfect body.

I just have a body.

I have a body that's hanging in there. A body that is trying. A body that never could have imagined being this body. A body that gets lost in a world that isn't what it imagined for itself.

A body that is fighting anyway.

Dating.

You know what's difficult? Dating.
You know what's even more difficult? Dating as an adult.
You know what's even more difficult than that? Dating as an adult with a chronic illness.

Let's talk about why, shall we?

1. If you're not able to work, how are you going to meet people?
2. If you go the online dating route there's that awkward factor of having to tell people in your life that you're online dating. There really should be no shame in your game, but there's definitely a stigma surrounding it in some people's minds that you have to get around.
3. What do you write as your occupation when you do decide to go the online dating route? "Professional sick girl. Really good at it. Winning."
4. All of your profile pictures are with your dog because you don't go out and do anything.
5. You have to decide when you're going to bring up your health situation in conversation. Do you approach it close to the beginning to get it out of the way/see if they're going to run? Or do you ease it into conversation later once you've already won them over?
6. The fact that you even have to think about whether or not your health situation is going to make them run SUCKS.
7. If you don't directly approach it you get comments like "you seem to have a lot of health problems" (I got this one the other day). And then you have to explain. (Or, you go into defense mode and explain how you also have a lot of other good qualities and how your health is really just a small part of you before realizing that he didn't know that was a touchy subject and he didn't deserve your freakout. Oops.)
8. When they ask you why your last relationship ended, you have to make up a reason because "my health was too much for him" isn't painting yourself in a way that makes you seem dateable.
9. Your anxiety makes everything bigger than it is.
10. Sometimes you think it might just be easier to just stay alone forever because you already know yourself and your weird health quirks.

So there. See? It's super difficult. Exciting sometimes. But difficult, nonetheless.

So for now I'm going to put on my pajamas, my fuzzy socks, and cuddle with my puppy because he already knows me and my health quirks too. And loves me for them. And he likes napping even more than I do.

And that's really saying something.