"If you're interested..."

Today I had two doctors appointments. At the first, I had 22 injections in my head/face/neck/ears. (By the way, if anyone ever offers you that, say no and run away quickly) At the second, we discussed the fact that now I've "failed enough medicines" that I am eligible for some different kinds of things to try and help my headaches. And, as my neurologist was sitting there describing the new options to me, she kept saying "if that's something you're interested in trying." 

And I wanted to laugh when she said it. Such a weird statement. Such a weird situation. If I'm interested. Of course I'm not interested. But at the same time, of course I am. 

I'm not interested in more injections. I'm not interested in more pills. I'm not interested in new things that may or may not work. I'm not interested in being sick. I'm not interested in more appointments. 

But I'm absolutely, 100%, hands down, no doubt about it, interested in feeling better. 

I would be dumb to turn down something that might help me, when a billion other things haven't. There's got to be something that does, right? But sometimes I think I'm also dumb to continue to put myself through this. I wouldn't wish this stuff on my worst enemy. (Okay, maybe my worst enemy. ...Kidding, kidding.) 

I guess what it comes down to is saying yes one more time. Yes I'm interested in trying. Yes I'm interested in seeing if it works. Yes I'm interested in hoping that this will be the last time I have to say yes. 

No, I don't want to do it. 

But yes, I'm interested. 

Thinking.

Tonight, I don't want to write about Lyme. I don't want to think about it. I don't want to talk about it. And I've been wracking my brain trying to figure out how to do it tonight. But then I started thinking--I don't just do this for me. I don't sit down everyday and write just because I get something out of it. Of course it's good for me. It's always good to get your thoughts and feelings out. It's even better to get them down in writing to look back at later. But I also write for you. I write for you if you also have Lyme. I write for you if you love someone with Lyme. I write for you if you think you might have Lyme but haven't gotten a diagnosis yet. I write for you if you know you have Lyme but no one believes you. I write for you if you didn't even know about Lyme before you started reading my blog. I write for you if I know you in real life. And I write for you if I've never even met you. 

Tonight, I don't feel like thinking about Lyme. But, the thing about being chronically ill is, it doesn't go away just because you don't feel like thinking about it. As I'm sitting here trying to not think about it, I feel firework-type pains shooting through my body. My fingers are double their normal size because it's raining outside. And my anxiety is off the charts because I have two appointments tomorrow and I'm traveling over the next few days. My body has a really annoying way of reminding me that it's not okay, even when I'm trying my hardest to tell it otherwise. Even when I'm trying not to think about it. 

Tonight, I don't feel like thinking about Lyme. I don't feel like thinking about how much it sucks. I don't feel like being strong and thinking about how it's made me a better person. I don't feel like even thinking that it exists. 

But I'll think of it a thousand times over if it means helping even one person who also doesn't want to think about it. If you know that you're not alone in wanting nothing to do with it, I've done my job. 

And, if all else fails, here's a picture of my puppy. Think about him instead. 

Anxiety.

I've been thinking about this post for a long time now. I am pretty sure I mentioned in a post a while back that I was going to be writing this, and then I never did. It's a touchy subject. It's hard to explain, and even harder to explain without seeming like I'm complaining. Or seeming like I'm making a big deal out of something that isn't. So I was putting off writing about it. But here I am. Finally writing it. And honestly, there couldn't be a better time to be doing so. 

I am an anxious freaking wreck. 

Yep. I said it. I have anxiety. And I have a lot of it. 

I don't get anxious about specific things. I'm not afraid of anything in particular. I can't pinpoint the cause of the feelings I get. I don't know the root of my panicky moments. I'm just anxious.

Almost every day I am reminded of my anxiety. Sometimes I wake up with it. Sometimes it hits me later on in the day. But most of the time it's the worst at night. And it's not because I'm actively thinking about anything that would make me anxious. It's not because I'm thinking about being anxious at all. I'm just anxious. 

So I thought I'd compile a list of things that I, as someone not only with Lyme, but also with anxiety, want you to know. If you have someone in your life that has anxiety, especially anxiety that comes along with having a chronic illness, maybe something on this list will help you understand them a little better. 

1. I can't control it. I don't have a switch that turns my anxiety on and off. It happens on its own, and I don't know when or why it's going to happen.

2. If I could get rid of it, I would have a long time ago. Taking medicine helps, but it's not a quick and easy fix by any means. 

3. I'm not doing this to myself. 

4. I'm not doing this to hurt you. (Because, again, I'm not doing it.) I'm not having an anxiety attack so that I don't have to hang out with you. I'm not staying home just because I'm lazy. I'm not conveniently situating my anxiety in my life to have any kind of impact on yours. 

5. Yes, the thought of waking up tomorrow and still being sick makes me anxious. I'm not going to sit here and deny that my anxiety is ever connected to my Lyme. If you had the flu and knew you were going to wake up every day still having the flu, with no one and nothing to help you fight that flu, it would start to affect you too. Yes, most of the people in your life who have a chronic illness probably have anxiety. And yes, they have a valid reason. 

6. Being anxious and being scared are two very different things. 

7. You can't always see someone's anxiety. It doesn't always show itself in panic attacks or anything outwardly visible at all. Everyone experiences anxiety differently and everyone deals with it differently. 

8. Just because I have anxiety doesn't mean I'm not happy. Just because I have anxiety doesn't mean I don't appreciate the good things in my life. Just because I have anxiety doesn't mean I can't, or don't want to, do things with you. 

9. If you have issues with anxiety, you aren't alone. I bet more people in your life have it than you even realize. 

10. There's a stigma surrounding anxiety, but there doesn't have to be. Be there for the person in your life who struggles with it. Let them try to explain it to you. A little effort goes a long way. 

So there it is. I have anxiety. (Every time I have written that in this post I have thought about "I have nodes. They sit on your windpipe and crush your dreams. ...I am living with nodes...but I am a survivor." from Pitch Perfect. Come on, you know you have too. Or at least now you are. You're welcome.) 

I'm sure, if you know me in real life, reading this post wasn't a shock to you. I'm not one to hide my anxiety. Yeah it sucks. Yeah I wish I didn't have it. Yeah I wish I didn't have to talk about it ever. But I do think it's important to get it out there. Because, chances are someone in your life also deals with it. And if my struggles can help you help even one person with their struggles, then we're doing a good thing. 

My bed.

When you spend a lot of time lying around, you get to do a lot of thinking. Today, as I was lying here in my bed, I started thinking about just that--my bed. 

(What, Leigh? You're writing a post about your bed?) Yes. Yes I am. 

When I had my port, I never once did my IV in my bedroom. I always did in downstairs, away from my room. Why? Because my room was my safe place. I didn't want to cross the ugliness of pumping medicine into my body, or having a needle in my chest, with the comfort and security of my bedroom. Now, I don't have a port. But my bed is still my safe place. If I wake up hurting, I stay in my bed. If I get up and realize I can't do it that day, I go back to my bed. If I can't handle the emotions of being sick, I always find my way back to my bed.

Recently, my symptoms have been taking over every afternoon. Around the same time each day, I get the overwhelming feeling that I need to lay down. And when I say overwhelming feeling it's not like "oh man, I'm so tired, I really wish I was in my bed right now." No. It's "if I don't get somewhere where I can lay down NOW, I am going to fall down." My body gives me two options--lay down or your own, or I will force it upon you. 

When that happens, I have no choice but to retreat to my bed. I feel like a cellphone, with 2% battery, that's just hoping with everything it has that it can get back to its charger. That's me. Every afternoon. My bed is the charger. 

And as much as it sucks--as much as I wish I didn't have to constantly go back to my bed--my bed is a constant in my life. And when your body is fighting you. When doctors are fighting you. When the world is fighting you and your truth, it's nice to have that constant. It's nice to have something that is going to be there no matter how I feel, how I look, if I'm crying or if I'm happy, if I'm texting friends or if I'm lonely, if I'm in a good spot or if I'm in a rut, no matter what. 

I'm trying really hard to put a positive spin on things these days, because honestly, right now, Lyme really sucks. So today, and every day, I'm thankful for my bed. If there's something/someone in your life that is your constant, tell it thank you.

As silly as it sounds. 

There's nothing silly about doing what you need to do to give yourself a little bit of that comfort in a life that hurts. If you have Lyme, or even if you don't, having a constant is vital. 

If you don't have one, find one. If you have one, be thankful. 

Now.

I figured I should start year two of this daily blogging thing with an update. Me now. A recap of me and my life this past year. Just in case you haven't read any of my posts since the end of May last year. (In which case, minimize this window and get 'ta reading! But be sure to come back! I'll be waiting.) 

1. I'm still sick. 

2. I still don't have a job. 

3. I don't see myself being able to get one anytime soon. 

4. I am semi-okay with that at this point. I have come to the realization that healing comes first. I can't help anyone else until I help myself. 

5. I don't have a port anymore. But I have two huge, puffy scars to remind me of them. 

6. I wish I still had my port. (Yes, you read that correctly.) There's a sense of security that comes with having the ability to get medicine directly into my body when I need it. And now I don't have that. It's kind of bittersweet. 

7. I don't have a doctor. My doctor passed away at the end of 2014 and I have yet to find a new one. (If you're reading this, have Lyme, have a doctor, and live near me, let me know!) The inability to find a new doctor that can/will help me is not for lack of trying. It's the battle I had at the beginning of my Lyme journey all over again. 

8. I still have a headache. 

9. Every day. 

10. I'm still hopeful. There isn't a day that goes by that I don't count my lucky stars, look in the mirror, and realize that I'm a lucky girl. It's been another year that has sucked the life right out of me. But I'm still standing. Somehow. (Actually I'm usually sitting/laying/reclining in some fashion) 

And that's nothing to take for granted. 

I can't promise you that this month of blogging is all going to be positive. I can't promise you that I'm not going to complain. I can't promise you 31 days of eloquently written thoughts. But I can promise you 31 days of the truth--be it ugly, happy, and anything in between. 

And I hope that, in turn, you can promise me 31 days of effort. Understanding isn't always easy, I know. But it's possible. You can do it. 

We did it together last year. We can do it again. 

Year two.

Well, here we are again! Happy May, happy Lyme month, happy month-where-I-blog-everyday! 

I originally wasn't sure if I was going to keep up the daily blogging this year. Mostly because I don't know if I'm going to be able to come up with 31 more things to tell you about. But I'm going to go for it! 

Here's to hoping that together we can work for 31 more days to raise awareness, spread understanding, and work on acceptance. 

Thank you for coming along for the ride again! 

#dearme

I've seen this thing going around the internet today called #dearme. The idea is that you talk, either through a video or writing, to your younger/high school self. I'm not usually one to participate in things going around like this, but I thought this one was pretty cool and harmless. So, here goes. 

Dear 16 year old Leigh--

First of all, I love you. You don't tell yourself that enough. But it's important. Say it more. And say it to other people as well. It's not lame to express your emotions. It's not lame to let people know how you feel. Remember that. But at the same time be careful. Be careful who you're opening up to. Not everyone cares as much as you think they do. And soon some of them will be out of your life as quickly as they came. It happens. College happens. And, as cliche as it sounds, life goes on. And you can't get it back. So just think before you talk. You're good at listening, but you'll soon learn that most people are better at talking than they are at listening. And that's okay. Keep listening. Let them talk. Soon you will find people who will do the listening. 

And, not to be a downer, but you know those headaches you've been having? They don't go away. They actually get worse, as hard as that probably is to believe. And, on your 20th birthday you will get the worst headache you've ever had. And you'll have it every day for at least 4 years. (Happy birthday to you!) So, be thankful for the time you have now. Hang out with your friends on school nights. You stay out past your curfew for the first time next year, but you really should do it more often. (Sorry mom). Go to the mall on the weekends. In a few years it will make you sick to be in there, so go now while you can. Get chickfila twice in one week. Spend too much money on things you don't need. (But seriously, stop getting your eyebrows waxed. You are going to regret this year's school picture.) Soon you will watch your body become filled with bacteria and infection and turn into a painful blob. So do whatever the hell you want now. Just because you can. Trust me on this one. 

And, most importantly, know that you're going to be okay. I know I just told you what probably feels like the saddest story of your life, but stick it on the back burner for now. There will come a time when it consumes you. So, for now, don't worry about it. And even when you get to the point in your life when it does consume you, spoiler alert: you are still going to be okay. You will be stronger than you ever knew you could be. And you will find the importance of people you never thought would be in your life. You're surrounded by people right now that you don't even know will become everything you need in a few years. (Does that make you curious? It should. It's like a weird precognition version of Where's Waldo.) 

Seriously though, 16 year old Leigh...take a deep breath, hug your mom (she gets cooler as time passes too, by the way), and know that you're doing okay. You're doing this life thing right. And I, your future self, am proud of you.