I've talked on my blog about feelings of failure before. A few times, I think. But this is a new year. I have new readers. And I have new feelings. And right now those are feelings of failure. So I'm talking about them again. Because maybe I'm not alone. Maybe you're feeling them too. And maybe you need to read this today.
Chronic illness and feelings of failure go hand-in-hand, I think. But really, sometimes life and feelings of failure go hand-in-hand, don't they? It's hard not to feel like you're failing when life doesn't go the way you expect it to. And when you're sick, it rarely ever goes the way you expect it to.
I went to college. Graduated college. Did my internship. Passed my certification exam. Did everything the way I was supposed to. And now look at me. I'm not doing anything I planned to be doing. I'm not at all where I planned to be.
It's hard not to feel like I'm failing. It's hard not to feel like everything I worked so hard for was for nothing. And it's hard not to be afraid that I will never get back to what I wanted for myself.
But I also have to be proud of myself for every day that I get out of bed when it feels impossible. I have to feel like I accomplished something when I get through a really difficult day. And I have to be happy with a good day even if it's not a day doing what I thought I would be at this point in my life.
No matter how hard it is.
So if you are sick and feel like you're failing too, you aren't. You are winning every day that you are breathing. You are the champion of your life. You can do anything. I believe in you.
Wednesday, May 4, 2016
Sometimes Lyme is hard.
Sometimes Lyme is hard.
Sometimes you wake up in the morning and your tongue is so swollen that you can't close your mouth around it. For no reason. No reason other than the fact that you have Lyme. Sometimes your clothes hurt. Sometimes everything hurts. Sometimes you walk across the room and the carpet hurts the bottom of your feet like it's little tiny needles piercing your skin with each step. Sometimes the sheets on your bed feel like sandpaper. So you can't escape the carpet there either. Sometimes the air even hurts as it hits your face. So going outside isn't a choice. Sometimes there's no escape from your own body. Sometimes all you need is a hug. But that will hurt too. So you don't even ask.
Sometimes you're scared. You're scared of how you're feeling. You're scared that you won't ever feel okay again. You're scared that you don't actually remember what it feels like to feel okay.
Sometimes you sleep a lot. Sometimes it's all you can do. Sometimes you wake up, move to another place and then go back to sleep. Sometimes that's all you can manage in a day. And sometimes you have to let that be okay.
Sometimes you can't talk to your friends. Sometimes it's easier to just be quiet than it is to explain how you're feeling. Sometimes you write a text message ten times and delete it every time instead of sending it because you don't want to be a burden. Sometimes you feel like a burden anyway. Sometimes means always in this case.
Sometimes you can't put the words together to write your blog. Sometimes you try anyway. Sometimes you get something like this. Sometimes your brain is a mess.
Sometimes Lyme is hard.
Sometimes you wake up in the morning and your tongue is so swollen that you can't close your mouth around it. For no reason. No reason other than the fact that you have Lyme. Sometimes your clothes hurt. Sometimes everything hurts. Sometimes you walk across the room and the carpet hurts the bottom of your feet like it's little tiny needles piercing your skin with each step. Sometimes the sheets on your bed feel like sandpaper. So you can't escape the carpet there either. Sometimes the air even hurts as it hits your face. So going outside isn't a choice. Sometimes there's no escape from your own body. Sometimes all you need is a hug. But that will hurt too. So you don't even ask.
Sometimes you're scared. You're scared of how you're feeling. You're scared that you won't ever feel okay again. You're scared that you don't actually remember what it feels like to feel okay.
Sometimes you sleep a lot. Sometimes it's all you can do. Sometimes you wake up, move to another place and then go back to sleep. Sometimes that's all you can manage in a day. And sometimes you have to let that be okay.
Sometimes you can't talk to your friends. Sometimes it's easier to just be quiet than it is to explain how you're feeling. Sometimes you write a text message ten times and delete it every time instead of sending it because you don't want to be a burden. Sometimes you feel like a burden anyway. Sometimes means always in this case.
Sometimes you can't put the words together to write your blog. Sometimes you try anyway. Sometimes you get something like this. Sometimes your brain is a mess.
Sometimes Lyme is hard.
Monday, May 2, 2016
One Year Older, One Year Wiser.
It's been a long time since last May 1st! 366 days, to be exact. I'm a whole year older. And, I wish I could say that I'm a year healthier. Unfortunately, that's not true.
But, I do think that the phrase "a year older and a year wiser" stands even more true when you're sick. I've learned a lot this year. A whole lot. About myself. About Lyme. About life. About what matters. And about what really doesn't.
And, by the end of this month I hope that if I'm able to teach you something too.
I hope that if you already have Lyme you will leave this month knowing that you aren't alone. You are strong. You can do anything you want. Even if you have to do it from your bed, from the car on the way to the doctors office, or from a hospital bed sometimes. If you want it, you can do it.
If you love someone with Lyme, you aren't alone either. I know it's not an easy road. Loving someone who just can't get better feels like a never-ending battle that you just can't win for them. But I can also tell you, with 100% certainty from the side of the person you are loving, you are appreciated more than you know.
And, I hope that if you don't have Lyme you learn that it is 1000% worth it to take every single preventative step that you can take to keep it away. It may not seem like a big deal before you have it, but it is. Is is a big deal. It is life-altering. It's heart-shattering. It's nothing you can imagine until you live it. And it's nothing I ever wish for you. Ever.
So, as I continue my Lyme journey this month, I'm glad you're here to learn with me. I hope that at the end of this month you will be one month wiser, too.
But, I do think that the phrase "a year older and a year wiser" stands even more true when you're sick. I've learned a lot this year. A whole lot. About myself. About Lyme. About life. About what matters. And about what really doesn't.
And, by the end of this month I hope that if I'm able to teach you something too.
I hope that if you already have Lyme you will leave this month knowing that you aren't alone. You are strong. You can do anything you want. Even if you have to do it from your bed, from the car on the way to the doctors office, or from a hospital bed sometimes. If you want it, you can do it.
If you love someone with Lyme, you aren't alone either. I know it's not an easy road. Loving someone who just can't get better feels like a never-ending battle that you just can't win for them. But I can also tell you, with 100% certainty from the side of the person you are loving, you are appreciated more than you know.
And, I hope that if you don't have Lyme you learn that it is 1000% worth it to take every single preventative step that you can take to keep it away. It may not seem like a big deal before you have it, but it is. Is is a big deal. It is life-altering. It's heart-shattering. It's nothing you can imagine until you live it. And it's nothing I ever wish for you. Ever.
So, as I continue my Lyme journey this month, I'm glad you're here to learn with me. I hope that at the end of this month you will be one month wiser, too.
Sunday, May 1, 2016
Lyme Month--Year 3!
Well, here we are again! It's May 1st. And you know what that means? It's Lyme awareness month! And you know what that means? I'm back to blog every day in May!
But let's be real for a second before we get this party started, shall we? I've been having a really big internal (and sometimes external if I trap a victim) debate over whether or not to do this this year. I have been really going back and forth over whether or not I have anything worth sharing, let alone a whole month's worth of things worth sharing. And mostly, I have been struggling to decide if I'm okay enough to write for a whole month.
Yeah, I just threw that last one out there.
You see, life has this way of throwing things at you. Lyme life has this way of throwing things at you while it's standing on top of you and also dangling you off of a cliff while it's holding onto you with something super sharp and also stacking elephants on top of you and asking you to sing the alphabet backwards all at the same time.
And that's what is happening to me right now.
So I wasn't going to write this month. Mostly because I thought I'd be lying to you. I thought I'd be lying if I came here and talked about Lyme awareness and spread positivity while I felt all of that weight on me. I thought I'd be lying if I told you just the sunshiney parts and left out the rain. But, the fact of the matter is that in not writing I would be lying to not only you but myself. I would be avoiding the truth. I would be lying by omission. And that's just as bad. And does no one any good.
So, if you're ready for another bumpy ride this month, I'm back. Let's do this.
But let's be real for a second before we get this party started, shall we? I've been having a really big internal (and sometimes external if I trap a victim) debate over whether or not to do this this year. I have been really going back and forth over whether or not I have anything worth sharing, let alone a whole month's worth of things worth sharing. And mostly, I have been struggling to decide if I'm okay enough to write for a whole month.
Yeah, I just threw that last one out there.
You see, life has this way of throwing things at you. Lyme life has this way of throwing things at you while it's standing on top of you and also dangling you off of a cliff while it's holding onto you with something super sharp and also stacking elephants on top of you and asking you to sing the alphabet backwards all at the same time.
And that's what is happening to me right now.
So I wasn't going to write this month. Mostly because I thought I'd be lying to you. I thought I'd be lying if I came here and talked about Lyme awareness and spread positivity while I felt all of that weight on me. I thought I'd be lying if I told you just the sunshiney parts and left out the rain. But, the fact of the matter is that in not writing I would be lying to not only you but myself. I would be avoiding the truth. I would be lying by omission. And that's just as bad. And does no one any good.
So, if you're ready for another bumpy ride this month, I'm back. Let's do this.
Monday, April 18, 2016
Scars 2.0
Tonight I looked in the mirror and I saw my port scars.
Most days I don't see them anymore. Sure, they're always there. They live on my chest. And yes, they're very obvious if you aren't me or if you aren't used to seeing them. But most days I don't even see them anymore. They're just part of me now. Just like the scar on my leg from my surgeries there. Or like my tattoos. In a weird way, scars kind of are like tattoos, aren't they? Weird tattoos that my body has given me as reminders of a struggle. Or maybe as reminders of strength. Whatever it is--however you want to look at it--I don't notice them most days.
But tonight I saw them. And I felt like I got punched in the stomach. I tasted the taste of a saline flush in my mouth. If you've ever had IV treatment of any kind you know what I'm talking about. And my whole body got hot thinking about the day that my port was manually flipped from outside of my body to try and save me from surgery. It was a weird flashback. And I don't know where it came from or why it happened tonight. But it hit me hard.
And as I stood there looking at my scars, more things started rushing back through my head. The day I got my diagnosis. Being so sick in college on new meds, just trying to push through til graduation. Then finally making it. Getting my first port. Crying to my angel of a home nurse at 7am most Friday mornings as she stuck a new needle in my chest. Meds and more meds. Hearing that my port wasn't salvageable after an awful day of trying to save it. Getting a new port. Passing out in the nurses arms at my post op. Even more meds. Having to get rid of my port. Losing my doctor. It all came back tonight.
And as it cleared, and I noticed the tears running down my cheeks, I started thinking about what those two scars on my chest have been through with me. And I guess I can't be mad about it. I can be sad. Because it's not something I would even wish on my worst enemy. But I can't be mad. Because I am a million times stronger for it. Because of what I've been through with those scars, I'm a better Leigh.
I know how hard things can be, but I know how beautiful they can be, too. I know how much pain my body can endure, but I know how great it can feel to know that you made it through that pain. I know how ugly a scar can look from the outside, but I also know how strong it can make you feel on the inside.
So tonight, I saw my port scars. And my heart broke a little as things came flooding back to me. And it broke a little more as I realized how much further I have to go. But I also saw my port scars and felt a little stronger knowing that they got me this far and there's absolutely nothing that I cannot do.
So if you're feeling sad tonight, too--if you're feeling like there's a mountain in your way that you can't climb--know that you aren't alone. My battle feels big tonight. But I have two permanent marks on my chest to remind me that I'm strong enough. And if you don't have something like that, let me be the thing right now to tell you--you are strong enough. You can do it. I just know you can.
Most days I don't see them anymore. Sure, they're always there. They live on my chest. And yes, they're very obvious if you aren't me or if you aren't used to seeing them. But most days I don't even see them anymore. They're just part of me now. Just like the scar on my leg from my surgeries there. Or like my tattoos. In a weird way, scars kind of are like tattoos, aren't they? Weird tattoos that my body has given me as reminders of a struggle. Or maybe as reminders of strength. Whatever it is--however you want to look at it--I don't notice them most days.
But tonight I saw them. And I felt like I got punched in the stomach. I tasted the taste of a saline flush in my mouth. If you've ever had IV treatment of any kind you know what I'm talking about. And my whole body got hot thinking about the day that my port was manually flipped from outside of my body to try and save me from surgery. It was a weird flashback. And I don't know where it came from or why it happened tonight. But it hit me hard.
And as I stood there looking at my scars, more things started rushing back through my head. The day I got my diagnosis. Being so sick in college on new meds, just trying to push through til graduation. Then finally making it. Getting my first port. Crying to my angel of a home nurse at 7am most Friday mornings as she stuck a new needle in my chest. Meds and more meds. Hearing that my port wasn't salvageable after an awful day of trying to save it. Getting a new port. Passing out in the nurses arms at my post op. Even more meds. Having to get rid of my port. Losing my doctor. It all came back tonight.
And as it cleared, and I noticed the tears running down my cheeks, I started thinking about what those two scars on my chest have been through with me. And I guess I can't be mad about it. I can be sad. Because it's not something I would even wish on my worst enemy. But I can't be mad. Because I am a million times stronger for it. Because of what I've been through with those scars, I'm a better Leigh.
I know how hard things can be, but I know how beautiful they can be, too. I know how much pain my body can endure, but I know how great it can feel to know that you made it through that pain. I know how ugly a scar can look from the outside, but I also know how strong it can make you feel on the inside.
So tonight, I saw my port scars. And my heart broke a little as things came flooding back to me. And it broke a little more as I realized how much further I have to go. But I also saw my port scars and felt a little stronger knowing that they got me this far and there's absolutely nothing that I cannot do.
So if you're feeling sad tonight, too--if you're feeling like there's a mountain in your way that you can't climb--know that you aren't alone. My battle feels big tonight. But I have two permanent marks on my chest to remind me that I'm strong enough. And if you don't have something like that, let me be the thing right now to tell you--you are strong enough. You can do it. I just know you can.
Thursday, April 14, 2016
Just keep waiting for your lizard.
I’ve found myself in a few situations lately where I’ve been
talking about my Lyme to new people in my life. Some new friends. Some new
doctors. And, after a long time of living with Lyme you’d think it would get
easier. You’d think it would get to a point where I would just be spurting off
the same information. And, I guess, in a way, it is like that. I’m telling the
same story time and time again.
“it started with headaches when I was 11…”
And the gist of the story never really changes.
“I had a few years of IV treatment…”
“yes, I really do hurt all of the time.”
And we always end up in the same place.
“…yep, I really am still sick.”
“It’s okay. I'll be okay! Thank you!”
But there’s still the sting that comes along with the fact
that the story I’m telling is my own. The words that I’m repeating are not made
up for interest; they are my truth. There’s still that punch in the stomach
that happens when I stop talking about my story but continue feeling it. And
there’s still the anxiety that comes with the “oh my goodness” realization of “that
really is my life.”
I wish I could just close a book and have the story stay
within the pages. And I wish telling the story got easier with time. But it
doesn’t. It doesn’t get easier. It doesn’t hurt less. And it doesn’t make me
hate it less the more I say it. If anything, it’s the opposite. Every time I tell the story, the words sound uglier. Every time I write it, they look more mean. Every time I talk about it I want it further away from me.
But, every day that I add to my story holds the possibility of being the day where the little green lizard with the giant cute eyes comes in. (Because who really cares about a knight in shining armor when you can have a cute little lizard?) So I will keep adding to it.
And yes, telling my story sucks. And it hurts. And it feels bad every single time. But if it can make even one person feel less alone, it's worth it. If it can make even one person understand someone else in their life, it's worth it. If it can make even one person realize that the things they've been feeling are real and legitimate and help them get their diagnosis before it gets to the point where mine is, it's so worth it. And, even if it's just me telling a new friend because that person legitimately cares about me and wants to know about my life, then that's worth it too.
So no, it doesn't get easier. Or at least it hasn't yet. But I will keep telling my story with the best intentions, no matter how hard it is. Because, like I've said time and time again--Lyme is tough but I am tougher. And, if you are feeling like your story is tough right now, be it a Lyme story or otherwise, know that you are tougher, too.
Everything will be okay. Just keep waiting for your lizard.
Thursday, April 7, 2016
I'm back!
Hey. Hi. Hello. Remember me? I'm the one who writes this blog. I know it's been a million and a half years since I've written anything here (actually almost four months--but it might as well be a million and a half years) but I'm back. Still me. And still super Lymey.
I can't wait for the day when I can write the blog post telling you (assuming there is still someone reading this) that I'm Lyme free! But today is not that day. Tomorrow's not looking good either. But I'm working on it!
I've been trying to think of what to do for Lyme awareness month this year. And I think I have a good idea! Stay tuned!! This will be my third year of blogging everyday in May for it! How crazy. What a journey. Thanks for sticking it out with me!
If you have your health today, take a second to say thank you for it. To whomever or whatever you want to. Your health is not the only thing--I still have quite a wonderful life without it--but it sure is a big thing. And I'd give anything to have mine back. And do something today to make you happy. Because even without your health you can hang onto your happiness. And that's nothing to ever take for granted.
I can't wait for the day when I can write the blog post telling you (assuming there is still someone reading this) that I'm Lyme free! But today is not that day. Tomorrow's not looking good either. But I'm working on it!
I've been trying to think of what to do for Lyme awareness month this year. And I think I have a good idea! Stay tuned!! This will be my third year of blogging everyday in May for it! How crazy. What a journey. Thanks for sticking it out with me!
If you have your health today, take a second to say thank you for it. To whomever or whatever you want to. Your health is not the only thing--I still have quite a wonderful life without it--but it sure is a big thing. And I'd give anything to have mine back. And do something today to make you happy. Because even without your health you can hang onto your happiness. And that's nothing to ever take for granted.
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