Opinions on The Internet

I’m kind of terrified to write about anything that could be remotely considered an opinion these days. The Internet is an amazing, but scary place. You can find information on any given topic and no matter how rare you feel like something about you is, 99% of the time you see person after person who has that in common with you. The computer is a fantastic place to connect people with one another, to rally around each other for causes or through hardships, and feel less alone in this big world. It’s a great way to gain knowledge and learn how to be more empathetic, and can be an incredible tool to help others.

I think most people are good and mean well. We all want to make the world a better place, we just sometimes have different ways of getting there. The biggest thing I see people fight about online is politics, but I’ve seen vicious arguments about something as trivial as whether Chips Ahoy or Oreo cookies are better. I see Republicans and Democrats fighting right and left (No pun intended), name-calling and bashing each other for having different solutions on getting to a similar end goal. Each and every one of them thinks their plan is the best way to bring peace on Earth and end great amounts of suffering in the world — they just disagree on the practical steps it takes to get there. Instead of realizing that they are, in fact, on the same team, people yell at each other and resort to name-calling. Rather than wondering why someone might feel there is a different solution, people remain stubborn and set in their ways, and neglect to open their mind to other ideas. It’s really dangerous when we stop critical thinking and forget how to communicate effectively with others. 

Politics is the easiest example to give, but I clearly am not going to be starting a blog talking about current political events, so why should I feel worried about being attacked on here?

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I am afraid to write about my opinions because people on the Internet can be so darn mean about nothing. I see celebrities bullied on a daily basis just for sharing their lives with their fans, and I see well-intentioned posts by girls in Facebook groups get attacked because someone was offended by the way something was worded. Everyone wants to be a social justice warrior so damn badly that they forget the people they are tearing down are human beings with hearts and feelings too. It’s so ironic. In my mind, these people just have one type of person they feel compassion and empathy toward — those who think the exact same way that they do.

One of my favorite quotes by Martin Luther King Jr is,

“Love is the only force capable of transforming an enemy into a friend.”

Another great one is,

“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”

If you want to talk about tolerance and love, the first step is to be tolerant and loving. This means loving even those who are wrong.

MLK Jr is someone who truly understands what it’s like to be treated poorly, but chooses kindness anyway. He was a pioneer who changed life drastically for people who were not being treated well. He isn’t known for being offensive, rude, or condescending — rather, he is known for being kind and compassionate, even when he had every right not to be. He was the King of peaceful protests, and fought seamlessly for what was right while remaining calm and respectful. I think we could learn a lot from the way he handled conflict and injustice.

The truth of it is, we live in one of the most unforgiving times ever. A tweet from an angsty teenage version of someone ten years ago can completely destroy a career, a “like” on Instagram can lead to death threats, and voicing your opinion can be one of the scariest and bravest things you possibly do, especially if it is unpopular.

If the world keeps moving this way I think we’re going to miss out on so many creative minds. A world like this doesn’t promote creative thinking, rather it screams that you need to fit into a certain mold to be accepted and loved. I believe bullying is one of the worst things human beings are capable of doing, and I think there are so many online bullies who have absolutely no idea that they’re actually the ones who are being cruel. I’d love to see people ask more questions and find out why someone perceives the world differently than they do. Instead of trying to cram ideas down someone’s throat, find out why they believe what they do and have a civil conversation about it. Agreeing to disagree is what makes America such a great nation, and I hate seeing this notion getting flushed down the toilet with the age of the Internet. Great things will start happening when we learn to work with each other, rather than choosing to focus on and fight about our differences.

Scary Statistics

My interest in blogging so much happened a year or two after I got sick with POTS. I’ve always loved to write and have had several different blogs or online journals throughout the years, but this is the first one that is really here to stay.

Despite today being Halloween, it is also the last day of Dysautonomia Awareness month, which is something I haven’t been able to touch on a ton since I was gone for much of October. Instead of writing about my own viewpoint, I am going to post some fun facts from the Dysautonomia International Facebook page — along with a few little comments about some of them. Also, Dysautonomia is an umbrella term for autonomic nervous system disorders, and POTS is my specific disorder.

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All photos credit of DysautonomiaInternational.org. Check it out!

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Brain fog is perhaps one of the most frustrating symptoms of Dysautonomia because not only do you feel like you’ve lost a working body, but your brain gets riled up and confused. I am able to manage this one pretty well these days, but can always think better when I am laying down on the couch and have a normal amount of blood pumping to my brain.

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It took me about a week and a half to get a proper POTS diagnosis, mainly because it just took time to get into the doctor who is now my cardiologist. The first doctor who saw me speculated I that had POTS since he could see the drastic changes in heart rate and blood pressure when I changed positions, but we did more extensive testing when I went to a second doctor who is an expert in Dysautonomia. Which leads me to this little fact:

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No wonder every single person I meet in this area goes to the same doctors office and knows about the little red leather chairs. It’s crazy to me that something as widespread as POTS still has so few people who are considered experts in it. I think this will be changing drastically in the next few years.

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My biggest issue these days is pain. It fluctuates greatly from day to day or month to month, but the coat hanger pain and arm pain is the worst. It is difficult to sit at a computer and just type as long as I want to because my arms, shoulders, and pecs have lots of trigger points. I am still going to physical therapy, and hope to work my way up to using a computer for a normal amount of time.

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This makes me FUME. Anyone who tells a person that their chronic illness is in their head clearly has no empathy and has likely been blessed with good health for their entire life. Like, come to any doctor with me and they’ll tell you something is off with my autonomic nervous system. Come to my cardiologist and he’ll tell you every single thing that is going on, and why my body behaves the way it does. I may not always understand why I am having certain symptoms, but there is a logical explanation behind each and every one of them. 

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POTS is not a rare illness, it’s just rarely diagnosed or talked about. I happen to have a more severe case of POTS, however I guarantee if you are friends with a couple hundred people on Facebook that at least a few of them have been effected by it in one way or another. Since the number guesstimating how many people have it is so high (about 1 in 100 people), I speculate many of these POTSies have infrequent fainting spells, some unexplained vertigo, or a little handful of symptoms they are able to tolerate enough that they don’t go searching for answers. As the graphic mentioned earlier, it is only about 25% of people with POTS who are disabled from it.

Whether or not this is something close to your heart (no pun intended!), please take a minute to check out the foundation and educate yourself a little more about Dysautonomia. It will definitely be something you will notice at some point in the future, whether it’s with a friend or an acquaintance. POTS is a very easy thing to test for, as long as a doctor knows what to look for — which can be the hardest part of any chronic illness. Hopefully we will have a cure soon!

A Scary Halloween Eve

I was supposed to watch a scary movie tomorrow, but it looks like we’ll be doing something more along the lines of Halloweentown or Hocus Pocus. A Disney movie is kind of what I need right now. You see, I had the bright idea of watching a scary movie tonight, and settled on the first one we found on demand. BIG. MISTAKE.

It ended up grabbing me in just enough to care about whether or not the girls were okay at the end of the movie, but I hated every single minute of watching it. I went under the covers, would “go to the bathroom” basically every other scene, and used my hands as shields. It was the first time I realized Kanye glasses actually make some sort of sense.

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Photo Credit: CapitalFM.com

Anyway, I am sitting at the kitchen table, wide awake, trying to laugh the fright away. I started by making some tasty ravioli while listening to a funny podcast, but that wasn’t strong enough. So I brought in the cheeriest thing I could think of: a rootbeer float.

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Normally I watch a Hilary Duff movie after a scary flick, but I am just not feeling Material Girls or A Cinderella Story tonight. I think a nice caffeine-free dessert was just what I needed to calm the jitters a little… I now know that when I am scared, I get hungry and just want to eat. Somehow I think that’s not a normal human instinct that goes along with fear, but I’m okay with masking my fear with a little ice cream and soda.

Now I am off to binge on The Office or a nice, funny episode of Nathan for You. Happy Halloween everyone!

Base, Foot, and Basket ‘Ballin

This weekend has been filled to the brim with sports. If there isn’t football on Saturday, then there is baseball and basketball going on. If basketball is taking a break, there are three football games and another baseball game to watch. As someone who has enjoyed spending her evenings watching The Hallmark Channel or reality TV, getting married and having sports on television so frequently has been jarring to say the least. In fact, despite Robert claiming he doesn’t watch every single athletic event that is aired, I would be shocked if there was much more available for viewing.

Here are a few things I have learned since taking such a big “interest” in sports for the past few weeks:

#1: Baseball doesn’t sleep. Literally. Like, on Friday (Slash, through Saturday) they went into 18 innings and didn’t finish until 3:30 in the morning. What kind of sport makes its fans watch that darn late?! Rude!! Also, baseball is always on. They apparently have games basically every single day, with a few short months of a break in the winter months. I am skeptical, as I think they’ll still find a way to weasel their way into our homes the next few months. I’ll report back.

#2: A sports fan might root for a certain team, but they apparently like watching anyone play. For example, we are a New England Patriots family, but we still watched the Eagles play, the Chiefs play, the Panthers play, and the Steelers play. Fantasy teams have made this a lot more bearable for me, because it’s actually kind of fun having people on the field to root for, but it still seems excessive to have 3 games in a row on Sunday — especially considering the length of a football game. It seems counterintuitive that a sports fan would spend their entire Sunday sitting on the couch, but that’s how the world of sports works.

#3: Sports can be interesting even to clueless people like me because thinking about everything with a newly-forming sports brain is kind of entertaining. For example, the goal of baseball is to hit a grapefruit-sized ball as far as you possibly can, in hopes of avoiding a few people who are covering the entirety of a field. These people run to catch the grapefruit, and somehow grab it almost every single time despite having so much land to cover! I am shocked every time the grapefruit plops into the glove because despite Robert saying they almost always catch it, I don’t freaking understand how. The grapefruit is tossed far and high, and at incredibly fast speeds. It seems impossible that people could run that far and  fast to catch the tiny object, but they have become masters of it.

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I know enough about sports and the English language to realize my hat is backwards in this picture, but this selfie was taken with the correct head tilt seen in the camera. It would look weird if I flipped it.

To make sports a little more bearable, I have started doing a few things. First, I try to get into the game by Googling any questions I might have. Not the boring questions like, “Why is that guy in the Red Sox uniform catching balls behind the LA hitter?” but ones like, “How many sunflower seeds are found on the baseball field after the game?” or, “Is Nathan Eovaldi dating anyone?” Here is a screenshot of the questions I Googled last night:

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To clarify, I googled the tongue thing because sometimes when I chew gum and walk at the same time, I bite my tongue. How do they do both while running at top speed from base to base?!

Since I love reality television and hearing all about other people’s lives, knowing more about the players as individuals is really crucial for me to have a good time watching any sport. The more I know about their dating lives, what they had for breakfast, how they caption pictures on Instagram, and whether or not they’re generally considered a “good guy,” the happier I will be to watch them play on the field/court/whatever you’d call the ice that is skated upon for hockey games. It’s a lot more fun rooting for people you feel like you know than a random man in a jersey. I mentioned that Robert should start studying about the athlete’s personal lives so he could tell me more about them while we are watching, and he told me that would be “boring.” How is that boring?! Something think is boring is a game that’s score is 1-1 and has no end in sight and nothing to talk about regarding what watching. That was my Friday night, and I’m still bitter about it.

I am going to continue to watch sports on television and will keep you all in the loop of what I learn. In the meantime, I am thankful tomorrow is Tuesday, because it will give me a chance to start watching The Hallmark Channel Christmas movies without being interrupted by a football or baseball game… Please tell me there isn’t any basketball on then.

One Happy Island

I typically write as I go through life, but lately everything has been way too hectic to sit down and share my thoughts on here. Now that I have some free time again, I want to catch you all up on everything. I’m going to start with our honeymoon, then work backwards to our wedding and the planning process.

We went to Aruba for a week and a half, and it was absolutely amazing. I am kind of obsessed with the island now, and despite having a good amount of time there, I wasn’t fully ready to come back yet. Our first day there was exhausting because we had to wake up at 4 in the morning to go. This was our first honeymoon lesson as a married couple. I don’t do well waking up early like that, and it turns out Robert isn’t the biggest fan of it either. So next trip — leave a little later. Noted.

Our flight was pretty easy. Robert carried our suitcases through the airport and I made sure we had plenty of snacks and gum for the road. Even enough, right? Really, though, one thing I am quickly learning about marriage is that it isn’t about evening out the playing field or exchanging chore for chore. I think it’s more of a team effort to create similar goals and desires, then find creative ways to achieve them. We will talk about this in another post, though.

Once we arrived to the resort, we were exhausted. We looked at our beautiful view of the beach, and decided to spend the rest of the day recharging.

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We had such a beautiful view with two balconies, but after finding out it was our honeymoon one of the managers decided to upgrade us to a gorgeous suite. It felt like a dream and was really what a honeymoon should feel like! My only concern now is that we won’t ever get anything quite as nice as this.

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We stayed in a smaller building called “The Villa,” and still had a beachy view from our third floor balcony. We had a private pool and a little bar right outside our room for us and the other Villa people.

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We had a great routine in Aruba. Wake up, eat breakfast at the buffet, grab a cappuccino, and play cards until we were ready to go out to the pool. Then, we relaxed in the cool pool water with a refreshing drink until we were ready to venture out to the beach for the rest of the day.

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The beach at Aruba was one of the most beautiful ones I’ve ever been to. The water was bright blue, and the sky was always the perfect shade — with the exception of ten minutes of rain a few days. We enjoyed letting the water toss us around and swimming into the deeper area of the “swim zone” every day. I really felt like the water was so healing and good for my heart.

The last full day of our trip we decided to go on an ATV tour. We had left the resort once before to go explore and shop, but we wanted to see some of the other sights Aruba is famous for. We saw the Natural Bridge, Andicuri Beach, the Alto Vista Chapel, and the California Lighthouse. I was really stiff after the adventure, but it was so worth it. We drove on the streets of Aruba with other cars, then made our way to the beaches to go off-roading. Towards the middle of our excursion it started to rain, so instead of sulking when we got soaking wet we decided to make a game of it and drive through the giant mud puddles that were forming. I had a blast and wouldn’t have changed a thing.

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Selfie after we hit a huge mud puddle. I did not get new freckles this trip; that is pure mud!

Our honeymoon was so amazing and I wish we could go back again like, tomorrow. I highly recommend going to Aruba if you can make the trip, and will offer a few tips on honeymooning in one of my next posts. This is going to be one of the most special vacations, but I know we have so many more great ones to come.


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Honorable mention to our little Iguana friend, Mojito. He loves lettuce and coconut water, and will fight other lizards for food. 

First Week of Married Life

I’m sitting at the kitchen table right now eating a sliver of dark chocolate and catching up on my emails — finally back to my usual routine. Something is different, though. Instead of being in my parents’ home at their warm oak table to do my writing, I am sitting at Robert’s cherry one. I am also learning to quickly correct myself from saying things like “Robert’s table,” “Robert’s living room,” or “Robert’s home,” to ours. So right now I am sitting at our kitchen table, about to write a little blog post about married life.

We’ve been married for 11 days now so I can’t really tell you all of the ins and outs of marriage, but I can tell you that yes, it has been different than being engaged. A question I have gotten since the moment we said “I do” is, “Do you feel different now that you’re a married woman?” At the time it felt the way it does when everyone begins asking you if you feel a year older on your birthday. No, obviously I don’t, is what we all think when we reach the anniversary of our birth. Not much changes from year to year unless it’s a milestone birthday like say, turning 21 and being able to sit at a bar. I digress.

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Saying our vows
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Our first moment as husband and wife. 🙂

The day of our wedding was wonderful, but there wasn’t a major change in my relationship with Robert right that second. Sure it felt good adding a wedding band to each of our hands, but then we focused on having a nice time together on the dance floor and visiting with loved ones. The big change came after the wedding — I finally moved in with Robert!

I had stayed at his place a lot in the past, but I never moved all my stuff in or called it my own. When he first purchased his home I helped him decorate some, but I didn’t think of myself in the equation a ton. We painted the walls a few different shades of gray and got dark wood finishes for his bedroom set and side tables. I thought it was all beautiful, but very masculine. It’s been fun for me to move in and add little homey touches that make me feel comfortable too now. My favorite pieces are fluffy blankets and our little pink and blue Kate Spade vases, and I am sifting through wedding photos to add some nice frames to the mix.

It’s been fun making his our home a little more cozy, and the main thing I think I’ve learned so far is that there are a lot of sports on TV. Like, not only is football on 3 days a week, but each game lasts several hours, and on Sunday they have 3 games in a row. THREE! What?!  I knew that Robert really liked sports and watched them a decent amount, but I usually spent some of that time with my friends or family, so didn’t pay a lot of attention to how much is actually on TV. Luckily I am more invested than I used to be, as I have a fantasy league to look after — and I really want to win this year.

Tonight we are going to be making a Blue Apron meal, courtesy of my sweet friend Kirsten! One of my favorite date nights is spending time together cooking (well, me reading the instructions and Robert doing most of the chopping and mixing) and getting to catch up over homemade food. I’m super excited about evening 11, and can’t wait to write my next update. It feels good to be back. 🙂

September 22

It’s so funny how much web traffic I got on September 22 and 23. I guess a lot of you guys must have known our wedding date! If you’ve ever gotten married, though, you also know just how crazy the time leading up to the wedding is, and then the week or so after.

I am finally back and have lots and lots to write about! I’m excited to share some of my stories about wedding planning, offer advice on what I’ve learned through the experience, and most of all, share what it’s like being a newlywed! So far it’s been really great and so much fun, but it’s also been a lot busier than I expected. I can’t wait to share more with you all! In the meantime, here are a few pictures our photographer, Katie Nesbitt took.

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One Month To Go, And A Big Anniversary

I had my 5 year anniversary with POTS this month. It’s really weird because part of me feels like it’s been forever since I’ve been normal. College and before feels like some sort of dream, and I am so conditioned to take care of myself like a POTSie that I don’t think just standing up after lying down feels normal for anyone, and carrying a case of water bottles without pulling something out of a socket or going through excruciating pain is impossible to all human beings. The other part of me feels like I was well just yesterday, and my body misses just living life physically feeling nothing. I’m not used to being in pain so much, and although I am able to feel more optimistic when I do have a stretch of high pain days, I still question how tough I really am and whether I can keep loving my life through all of the intense and nauseating hurt. I can’t describe my pain well. It’s not aching, but it’s what I imagine arthritis feels like, along with a lot of burning, knotted tightness.

It frustrates me that instead of writing about all the joy I’ve had in my life the past few months, and about how the wedding planning process has gone, I just keep going back to writing about this because I can’t sit down and think of anything else when I sit down and focus on the way my body is feeling. The pain is at the forefront of my mind because I can’t just shove it down anymore and try to ignore the 4-6 my body normally rests at. It’s been a blaring 8 for about a week now, and I’m just really worn out at this point.

Through all of this, I am still genuinely happy. Despite feeling heartbroken or frustrated with loss, I don’t feel depressed about my illness, which is kind of shocking when I really think about it. I completely attribute this to God putting a loving hand on my heart, and I am thankful that throughout all of this my mental health has stayed in tact, as that would be a whole other battle in itself. Getting the chances to be so joyful with a chronic illness isn’t necessarily common amongst people who are sick, and I can see why. It’s absolutely exhausting waking up day after day being in pain and having a wide range of symptoms  that you just have to deal with while living life.

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Photo Credit: Katie Nesbitt Photography

I am hoping to get a few little updates done about wedding planning, since we have less than a month to go now, but I’m thinking many will come after our big day. I want with all my heart to be writing a lot right now, but it just isn’t realistic with how I have been lately. In the meantime I am trying to enjoy the little things in life like watching Big Brother, talking to good friends on the phone, going for walks, and enjoying the company of loved ones.

You Up?

My arms are killing me right now. I am beyond exhausted, but I can’t seem to fall asleep. This can be a common problem for people with all sorts of chronic illnesses, or even just regular people with stress. My problem is that I am sometimes worn out from just living day to day life.

I don’t complain to people very much in person because complaining isn’t really my thing. I love being positive, and honestly feel like I am a lot happier when I can look at the bright side of things in life. Sometimes you just fake it till you make it, right? This can be a double-edged sword, though. It’s wonderful because I can keep my relationships light, and add more joy to both my own life and the lives of my loved ones. It’s hard, though, because I feel like the less I talk about my symptoms, the more they are just forgotten.

You can’t see when I’m dizzy or nauseous or in pain. I have said it a million times, and I’m sure I’ll keep chatting about it on here — you cannot see signs of invisible illness. If you look closely, you’ll notice the bags under my eyes have become darker and deeper the past several weeks. I look in the mirror when I take my makeup off and can tell there’s been more wear lately. You can’t see the way my arms feel ropey and knotted, or the fact that my thoracic spine is as stiff as a board, though. I went to a Nationals game a few weeks ago and thought I might faint a few times. I stood and talked candidly about my wedding plans and how I don’t know very much about baseball, but I felt the stadium spinning circles around me as I spoke. It felt like I had left my body and was being twirled around and around on an amusement park ride.

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When my POTS acts up it starts by slowly tightening everything in my chest and heating up my face, then moves to what feels like my body overheating and getting ready to shut down. In the same way that Robert’s gaming computer’s fans started whirring frantically when it was overheating, my body goes into panic mode to try to keep myself conscious by either getting into a horizontal position or rushing blood back up to my brain in any way it can. Sometimes that involves fainting to facilitate the blood flow, but luckily I have learned the signs of when I need to sit down.

Emotionally, I can feel drained with all of this. The more I write the more I expect people to understand. The less I feel understood, the more I want to scream. “I know I am the exact same person in your mind because I look normal, but how the heck would you feel if you woke up tomorrow and had to give up your job, your independence, your financial stability, and your working body?!” What frustrates me the most is how hard it is to wrap your mind around what life must be like as a young person who is sick. It kills me that I can’t go out with friends and family on long hikes, and that I don’t have the option to turn down camping just because it’s too hot out and I don’t feel like getting sweaty. I miss running, I miss going out dancing until the wee hours of the morning, and I miss competing. I absolutely hate not being able to compete in any kind of sport anymore, which is why I have opted for being a cutthroat board game player instead. It often doesn’t feel fair that other twenty-somethings take their bodies for granted or understand just how lucky they are to go to work every day and walk around pain-free.

I will keep writing because I want so badly for you to understand. I want you to love your own body fiercely for the things it can do, and I want you to realize that just because I am not playing volleyball or tagging along on your wilderness hikes doesn’t mean I don’t want to — it just means I either physically can’t, or it’s not worth how many days I know I will pay for the fun after the fact. I remember when I graduated from college and a friend began having severe chronic pain. I felt terrible for her, but I also didn’t get that her life would be changed forever with her new fibromyalgia diagnosis. It’s easy to move on with your day and forget about how other people are feeling when you don’t understand their journey, but it becomes a whole new ballgame when you meet someone who is struggling with something that you have already been through. Next week I am going to talk some about empathy versus sympathy. I have learned how to be empathetic to others the hard way, but I also think it is one of the most beautiful characteristics I own now. You don’t always have to walk a mile in someone else’s shoes for your heart to really understand what they are going through.

Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

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Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

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