I started my first consistent normal-ish job and am working from home now! I’m doing editing and publishing for a PR company. It’s been really fun, but has also kept me busy, and I still only have a certain amount of time I can spend on a computer without my elbows or neck beginning to hurt. I am making leaps and bounds of progress, though, and am so freaking happy about that! It’s sometimes funny to think about, but I honestly think I’m more thankful for my body now that still is not working the way it should be, than I ever was for my body pre-POTS. Before I got sick I played just about every sport, could run 6 miles no problem, and a half marathon with just a little bit of soreness after. I had a seemingly endless supply of energy and would wake up early, go to bed late, and made time for work and play almost every day. Looking back I don’t know how I didn’t realize how lucky I was. This is just how life works sometimes, though.
I never in a million years thought writing would ever be difficult. Mentally, yes, but physically I should have been able to write for decades before anything became remotely difficult. I have a hard time finding outlets for my feelings sometimes since running has been off the table, and even writing things down can be painful sometimes.
Anyway, I haven’t been able to write for fun very much lately, but there’s not a lot I’ve wanted to share. I’ve become much more private with my life in the past year or two; maybe I’ll explain why one day, but I’m not ready to right now. In the meantime, I am going to get back to my Trader Joe’s Tuesday posts because I have a very deep love for that grocery store. I’ve loved being a stay-at-home dog mom, and think I’ve become a very good cook this year. I figure I share my recipes with my closest friends each week; why not write about it a little too?!
I hope you all had a very nice fall. I’m not doing a very good job coming up with words right now, so I’ll save all of us some time and keep this post short. Have a great Thanksgiving if we don’t talk before then. ❤
I woke up this morning in a sweat. My heart was racing as I jolted awake from some sort of nightmare. I immediately started thinking about things that make me nervous about the future, and how the heck I’m going to get through it all. My stomach dropped deep down into my abdomen as my heart leapt straight through my chest. Apparently you sometimes can’t even escape anxiety in your dreams.
Anxiety is a cousin of depression. They’re close in the sense they both can be based on fear and uncertainty, but they give two very different feelings. Depression is hollow and dark. It feels like a rainy day in a swamp, with fog as far as the eye can see. You know it’s a wide open space, but you can’t muster up the energy to move around freely. You are curled up in a ball, only vaguely noticing that there is a world around you. I think often with depression, the person in the middle of the fog can really only see a few feet around them and can’t tell that there is light and beauty outside the dark swamp. In fact, there are still beautiful flowers and little glimmers of light while you are there, but they can be difficult to see if you give up and stay curled in your little ball. Rays of light come in the form of good friends, puppies, working out, and helping others. There is always a reason to keep fighting, but everyone understands if you need to take a break for awhile. It is exhausting when you feel like you’re alone and don’t know how to pull yourself up off the ground.
Anxiety paints a different picture. Instead of being a more introverted feeling, anxiety is the craziest extrovert you’ve ever seen. It is wild and red, and hot to the touch. Anxiety makes you feel claustrophobic in your own body, and creates a strong desire to run away from yourself. With depression, you would rather be able to get back in to your own body and figure out how to find yourself again. Anxiety makes you want to forget everything there is about you and run away to create a new life. You want to turn your brain off to stop thinking about anything and everything and find a way to sleep again, but you can’t take a vacation from your thoughts. Both depression and anxiety can create a pit in your stomach, but they’ve often settled there for entirely different reasons.
I have tiptoed along the line of depression sometimes, but I think having some down days is part of the human experience, so it’s very different than it was being in the darkness I have only been in once before. Anxiety is a much more familiar feeling I let sneak into my heart. It starts by catching the door with its foot, then shoves its way in guns blazing. “You’re not good enough,” “You won’t be able to handle the future,” and, “You can’t do the thing” are all lies anxiety screams as loudly as it can. It makes up elaborate and unlikely stories of what your future is going to look like, but speaks them with confidence and as truth. It’s a lot easier said than done to choose not to believe the lies, as a simple, “just don’t worry about it,” or, “calm down” won’t ease an anxious person’s heart. It is possible to find peace, but takes a lot of swallowing your own pride, accepting help from others, and being gentle with yourself.
Anxiety and depression are both so prevalent in today’s world. I don’t know if the age of social media has caused a rise in mental health issues or we’re just more open about them now, but I’d say more people than not have had a taste of these feelings, even if they haven’t been officially diagnosed with anything. I think we underestimate how not-alone we are in the world and how similar our feelings are to one another.
Talking about anxiety makes me anxious. I still think people are quick to judge, label, and make assumptions about people they don’t know. Despite genuinely believing most people have a good headspace about talking about mental health, I know there is still ignorance and confusion in this space of the world. I know that therapy is still stigmatized, and that people don’t always love and support things they don’t understand. So many people, though, who you would never guess are fighting difficult battles by themselves. Sometimes the most beautiful, smiley rays of sunshine have a darkness that is clouding their heart, and I am so thankful that celebrities and people in the limelight who have platforms are speaking up about their struggles more. Emma Stone, Ryan Reynolds, Mindy Kaling, and Stephen Colbert are all people who live to make others laugh, but struggle with anxiety. Jim Carey, Owen Wilson, Ellen DeGeneres, and Sarah Silverman have all been very open about dealing with depression. It isn’t just comedians who struggle with mental health, though. There is an enormous list of people who range from athletes to astronauts who have been affected by depression or anxiety. Even Abraham Lincoln is thought to have had severe depression and anxiety; they just didn’t have a word for it then.
My purpose in writing this is because I think it’s so important that we realize we are never alone in our thoughts or feelings. People need to be taught from a young age that it’s okay for everything to not be okay sometimes. People should realize that we all have battles we’re fighting, that we can share our struggles with our loved ones, and most of all, to be kind to everyone we meet. I am not “Instafamous,” do not have a large group of followers, or a particularly captivating life to share about, but I want to open my heart to the people who do read this in hopes it makes someone feel less alone. I see you, and care about you. We need you here, and you are important. Please don’t ever forget that.
I’m in so much freaking pain right now I don’t know if I want to throw up or cry. Preferably both would probably make me feel better. I don’t feel like this nearly as often as I used to, as my health is improving, but it still feels like it’s going to last forever. I can’t focus on anything else and just want the day to be over so I can have a clean start with refreshed muscles.
I always try to figure out why I’m in more pain than usual so it won’t happen again. Often, there isn’t a big cause — it’s just maybe the weather (I SWEAR I get bad headaches more often on rainy days) or the fact that I was standing too long in a day my POTS was acting up. There are other times, though, that I know I’ll feel bad the next day. Taking an airplane or sitting down for long periods of time, being much more active than usual, or staying out late are all things that can cause pain. Writing causes pain for me. I wrote a lot today. I didn’t focus on my ergonomics the way I should have. That might be a big reason I’m at an 8 and want to cry now.*
Some people might take this as a sign from God that writing may not be their thing. After all, my hands become stiff and my pain creeps up my arms and shoulders the longer I’m writing at a computer, so the writing does quite literally hurt me. It isn’t comfortable the way it used to be, and you’d think if it was my calling I wouldn’t have to take breaks to pace myself so much. Writers can sit down at a computer and churn out words for hours on end without taking so much as a bathroom break. This thought has crept into my mind before. Why can’t I do what I love and what my heart desires most as a full-time job? Why did my trajectory change so drastically? Is it because it isn’t my destiny to be a writer and I should look for something else to dig in deeply?
I am reading a book right now that talks a little about “signs” and Christianity. It talks about how sometimes things that happen are not as monumental as we want them to be — they’re just little blips in the grand scheme of things. Not everything in the world is a sign from God, even though He is always here with us. My pain that is linked to writing is not a sign from God that I need to stop. I know I am supposed to be here in this little space of the Internet, and it isn’t some big selfish desire my heart has. It’s just a deep-rooted yearning I have to connect with others, share my stories, and help each of us feel less alone in the world. The chronic pain I’ve dealt with might just be yet another way to connect with people, but it isn’t a sign that I need to stop writing. Sometimes people wait too much to try to listen to what God wants them to do, rather than just strapping on their boots and trying. I think we sometimes underestimate God and don’t realize that if we’re going in the totally wrong direction, He can find ways to pull us back on track. The most important thing is to get up, and go for what we think can change the world. If we’re wrong — which people often are — we can keep trying until we get things right. After all, that’s an enormous part of what it is to be human, right? Learning from our experiences and making ourselves better from them.
Hopefully tomorrow I’ll be feeling all better. Like I said, I was a little alarmed to feel this bad because I’ve had so many good days lately. I am grateful for that, and I hope to continue getting better and better.
*Those of you in the chronic illness community know we often rate our pain on a scale from 1-10, 1 being pain-free, to 10 being unbearable. It gives doctors a better way of seeing improvement and knowing how bad — or not — it really is.
One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.
I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.
If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.
Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.
I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.
On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.
I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.
One of my best friends, Nicole, called me from Trader Joe’s the other day because she knows how much of a TJ’s fan I am. She wanted to know about a few of the items there, and after chatting for awhile I decided she would probably love to try my crispy pesto salmon. It is absolutely delicious and has the perfect little crunch over a creamy basil pesto sauce. Hungry yet?
Gluten-free Crispy Pesto Crusted Salmon
Okay, so here are the ingredients:
-Wild Caught Salmon (Boneless)
-Corn Flakes Crumbs
-Extra Virgin Olive Oil
Step 1: Preheat oven to 400°F. I almost always do 400 because it’s just easy to remember and 50° above or below 350° and 450°, so I figure it works no matter what.
Step 2: Chop up the sweet potatoes and broccoli florets and put them on a cookie sheet. I always do the veggies first so I can use the same cutting board and knife for the meat. It makes cleanup so much easier having fewer dishes! I also always use aluminum foil because it’s easier to clean off a pan this way.
Step 3: Drizzle EVOO, salt, and pepper on the vegetables. Feel free to get crazy and add spices like cinnamon or turmeric to them if you’d like! They’re known for regulating blood sugar and helping with inflammation.
Step 4: Pat the salmon dry, and cut it into however many servings you’d like. It doesn’t matter how large or small the fillet is.
Step 5: Put the salmon on the same pan as the veggies. You can drizzle a little EVOO on the pan before placing it there, and then cover in salt and pepper.
Step 6: Make the pesto sauce. Mix 4/5 parts pesto, 1/5 parts mayo. It doesn’t really matter how much mayonnaise you decide to use, but I always like the pesto to still have a very green color. It just looks a little more pale when you put the mayonnaise in. I should note that I hate mayo in everyday life, but it adds a good creaminess to this dish!
Step 7: Spread as much of the sauce as you’d like on top of the salmon filets. I usually make it a little thick so there’s more flavor, but if you want it super-crispy, be more conservative with the sauce. Then, sprinkle as much of the Corn Flakes as you’d like on top of the mixture on the salmon, and put it in the oven to cook.
Step 8: Bake until the salmon is ready (It depends on how well done you’d like it), and the vegetables begin to brown.
Step 9: While your food cooks, make the extra pesto sauce. Mix the same ratio of pesto and mayo, then add a few squeezes lemon juice, a pinch of salt, and a few pinches of pepper.
Once everything is done cooking, take it out of the oven and top with as much of the extra pesto sauce as you’d like. Robert likes it on his veggies too, but I only eat it on the salmon because I think that’s kind of weird and I like the vegetables just the way they are.
Post a comment if you decide to try this how you like it! I didn’t post a picture of the end result because 1) I was too hungry and took a few bites before I realized I probably should have gotten a pretty picture and 2) I don’t know how to make brown things look appetizing. The end of this reminded me of Thanksgiving dinner — it tastes amazing but no matter how hard you try to make your plate look good, it never in a million years will.
Each period in my life has had something memorable that I can pinpoint and think back to. Except when I got sick with POTS. I remember very vividly how scary the first few days and nights were, but I don’t remember some kind of big details that were during that time period. Other than my family knowing what was going on from being there, I don’t remember telling anyone that I got sick overnight. I don’t recall even sending out one message saying I felt like I was dying and that I had gone into some sort of shock; I don’t think I did. I was so focused on how my body was completely giving up on me that I didn’t think to message anyone about it. Looking back, that was really strange and unlike me, but I think I was just too focused on the problem at hand to think straight. I’ve asked people who were close to me at the time what they remember about me getting sick, but I don’t think there was a monumental moment that anyone could recall. I don’t think the people who were really close to me understood how big of a deal this was until a few months later when I was still somehow sick.
I decided to do some digging and show you a little bit of my life pre-POTS, and then few things after getting diagnosed. So much of this time is so foggy to me because I was just in survival mode and trying to navigate life with a new collection of health problems. I don’t really remember living the first few months, with the exception of some pretty life-changing doctors appointments. Even those are a little bit foggy, though. I couldn’t stand very long when I went to my appointments, and often had to retake my blood pressure several times because I couldn’t stand very long without passing out.
One thing that is absolutely crazy to me is that my husband, Robert, never knew pre-POTS Krista. He’s heard about what I used to be like and the hobbies that I had before getting sick, but he didn’t experience going running with me or seeing my hilariously serious work ethic in school. He never held my hands before they were always hot or cold, and didn’t get to see how vicious I was in even a casual game of volleyball. This is something I wish was different, and that I feel sad about on occasion. It’s a big enough deal that my best friend Audrey included this tidbit in her maid of honor speech at our wedding — though she said the kindest things and that he didn’t need to know what I was like before I got sick to love me for my heart. It’s weird feeling like there are parts of me that are just gone completely now that I can’t be as active as I once was.
That was the Krista I felt proud of, and miss a lot of the time. Don’t get me wrong, I still think there are so many wonderful traits I have after getting sick, but work and sports are not a big part of my life anymore, and these were such a large part of my identity for so long that it’s been hard trying to recreate myself and figure out what I can do with my new restrictions. Since getting sick I lost so many things that brought me joy, and am still trying to find a balance between having experiences and continuing in my journey to getting better.
I got sick with POTS in August of 2013. Up until then, I loved working. In college I always had some sort of job in writing, and made money babysitting a few days a week after school. I worked for the school newspaper almost every semester as a columnist or editor, had several in the journalism field, and was involved in a few different clubs on campus. I loved being busy and whenever I had free time, I tried to find something new to occupy my time with.
2013 started off getting a phone call from my number one internship choice. After several interviews, I had snagged the editorial job at Seventeen magazine in New York City — my favorite place in the entire world. I was on top of the world, and although I wished a little bit that I had been able to enjoy the previous semester at college knowing it was going to be my last, I knew this was the step I wanted to take. I was ready to get out into the real world and start working. It had always been my dream to be a journalist, and I would finally get to do what I loved! Granted, I had a full course load I had to take online, but I knew it would all pay off when I could move to New York and continue working for a magazine with the Hearst corporation after completing my internship there. I was confident in my writing, and I knew someone would want to hire me full-time when I was done working for free. It turns out they would, but I wouldn’t be able to accept an offer to my dream job just two months after completing my time in the city.
Rewind to 2012, right before I got the phone call and moved to New York City. This was my last year without having POTS.
I celebrated my 22nd birthday at a Japanese steakhouse that had the most hilarious birthday ritual. They kicked the night off by bringing a balloon and a flaming shot. Then, all the lights in the restaurant went off and a disco ball came down from the ceiling. Five servers with different instruments began to play, and sing “happy birthday” at the top of their lungs. I cried I was laughing so hard. They spoiled me for the rest of the night and kept bringing little free dishes in between our stay there. I got sorbet, cheesecake, drinks, and little appetizers throughout the meal. Every time someone different came over and said, “happy birthday!” and delivered some sort of new surprise. They ended the night by putting a $3 charge on the bill titled, “Birthday Party.” It just made the night that much more funny, and this experience was what prompted me to take Robert to this exact restaurant after just a few dates with him to “celebrate his birthday” there too (Please read that link; to this day it’s one of my favorite posts on this blog. Thanks, babe!).
A few days after that, I ran my first half marathon. I had been training for it several months prior and was excited to set a new distance record for myself. Running had always been an activity that I loved and was a big part of my routine. I ran at least 4 days a week, usually more, for all of my adult life. I miss feeling my lungs burn from the cold, and running until all my thoughts just evaporated into the wind behind me. Running was one of my favorite stress-relievers, and I wish more than anything I could feel what it was like again.
I got the time I had hoped for and finished the race without having to stop. I was exhausted, but proud of myself. I wanted to run another one to see if I could beat my first time, but I was happy to be done for the day.
A couple of weeks later, I spent the new year out of town, and got an a call from one of the hiring managers at Seventeen saying that I got the internship I had interviewed for. It was a little bit of a shock having to pack my things, find someplace to live, and move to the Big Apple in the span of a week, but I always loved adventure and was so giddy with excitement that I didn’t really have enough time to think about anything else.
I packed up my life into a few suitcases and took the bus with my mom to move me into my new little 9X11 apartment and explore the city that was going to be my new home for the next several months. Lugging my bags up and down the stairs across town and learning how to use the subway is a memory I’ll never forget. It was so much fun moving to a place filled with so many of my dreams and endless possibilities.
The Hearst Building was the home of the Seventeen magazine office. We worked on the seventeenth floor, and I loved every day of work — so much that I often stayed late into the evening to keep working on projects because I enjoyed what I did and wanted to take on as much as my boss would allow. I was an editorial intern, but ended up being able to do some of my own writing for the magazine. My work involved a lot of research, interviewing, editing, and even helping pitch ideas to the executive editor. I got to go to business meetings all around the city, and had a few errands to run on occasion, but it felt a lot more like a real job than it did an internship. The better I did, the more they trusted me with real assignments, and I thrived in the high pressure, short-deadline world of journalism. I loved it so much that I knew I had picked a career where I wouldn’t hate going into work every day.
One of my favorite things about New York was that it truly is the city that never sleeps. Barnes and Noble became one of my favorite places to spend my free time because it was just the right amount of chaos to get work and studying done. My apartment was so tiny it felt like there wasn’t enough room to set up my books and laptop along with the rest of the things I had taken to the city. I took my textbooks and a snack to the store, and read and worked on papers for hours at a time. I enjoyed the classes I was taking, and only had 13 credits to complete that semester since I had packed my schedule the previous year.
New York offered the kind of life I loved. I was independent and worked hard at my job, and exercised regularly. In the past I hadn’t enjoyed being alone a lot, as I was an extreme extrovert, but I felt really comfortable being my own company in the city that felt so alive. I loved going on adventures, exploring, trying new things, and meeting new people. My favorite thing about New York was that every day was so drastically different, even if I began with the same route. I never knew what adventure would happen next, and I loved my life that way. It was exciting and fun learning how to constantly adapt to new things.
Going back and reading through my Tweets, Facebook posts, and journal entries from that time makes me so happy. Living in New York was truly one of the best times of my life, and I feel so thankful that I was able to experience it before I got sick. I used to often feel frustrated that I would never get the taste of working overtime in the big city again, but I am incredibly grateful for all the memories I have from that time. I have a million different things I could post on here, but will just share my favorites.
I found a Trader Joe’s across town and enjoyed “cooking” microwaveable food for lunch and dinner. I would walk if it was nice enough out, despite being almost 2 and a half miles from my apartment each way, and always stocked up on my favorite things. It’s actually kind of shocking looking at how much I could carry back then (and it wasn’t a difficult task for me either!).
Living in New York was so surreal. I always looked at the new world around me and would daydream about what it must be like to get to stay there forever. Valentine’s Day — my favorite holiday — was so much fun because I saw so much joy and happiness around me.
Some of the funniest moments happened in New York and I wish I had documented them better. Friends came to visit and we would go dancing on the weekend, our favorite place being “Turtle Bay,” a dive bar with an impromptu dance floor and crazy bartenders. I loved that I made new friends everywhere I went, and that they all seemed excited to see me too. I talked to anyone and everyone, and to this day I think New Yorkers get a really unfair bad rap.
I loved all the random people I met, but I also made some lifelong friends at my internship and in my apartment building. We still talk on a regular basis, and I feel so blessed to have those memories to share with such great people.
Fast-forward a few months after graduating in May and then leaving the city, this post was made two days before I got extremely ill overnight and began my journey with POTS. We were taking our last family vacation to the beach, and it was one of the final days there. I remember this night vividly, and the meteor shower is still one of the most beautiful things I’ve ever seen.
August 14, 2013 was the day I really started being terribly symptomatic. I’ve described that night in great detail before, but I don’t think I can put to words exactly how I felt. A few weeks later the doctors had an idea of what was going on, but it took several months to really get into a rhythm of realizing what my new life was like — and that it wasn’t just something I was going to get over quickly.
I’m someone who always minimizes things. I am not the best communicator sometimes because I hate inconveniencing others, and I don’t ever want anyone to pity me. When people feel bad for someone I feel like it makes them seem less of a human being, but I want people to understand. This is why I have always been very vocal about what’s going on in my life — even if I do make light of it all.
The tests I had to take since I got sick with POTS were awful because it took all week to recover afterward. I still have to prioritize things on my to-do list, and decide whether or not something is worth the energy and recovery time, but luckily I am able to do a lot more and a doctors appointment won’t keep me down for the rest of the week.
I’ve always loved writing, and blogging was a really nice way to get to express my frustration about the lack of knowledge people have about POTS — including doctors. I am so lucky to have a wonderful cardiologist who specializes in Dysautonmia close by, and have coping tools to enhance my quality of life. It’s amazing what a difference lifestyle changes make, but there is still so much for people to learn about this not-so-rare, but rarely diagnosed condition.
During the first couple years when my POTS was a lot worse, I consistently posted about my adventures on the recumbent bike, dogs, and television shows I enjoyed watching. Other than having friends come over, there was a time where I remember not being able to go anywhere I couldn’t elevate my feet. I went out to a movie night with a big group of my girl friends, and had to get driven home because I couldn’t sit upright without blacking out. I had to raise my feet above my head at the grocery store sometimes because standing upright to shop was often impossible for my autonomic nervous system to handle. Basically, it was really hard to even just get out of the house at one point.
Dogs were a huge part of world — and let’s be honest, they still are. Gracie and Macy were some of the most healing little creatures, and brought me joy every day, even when I felt my worst. I really do think dogs are little angels God sends to the world to bring us comfort, joy, and much more love than we even deserve.
I tried to make the most of everything I had to deal with. Some of the best advice I’ve been given is that even in my most trying times, I should write about my experiences. It gives me a more concrete reason of why something unpleasant might have happened, and more life experience. It also brings more of a purpose to this illness by helping spread awareness for other people suffering with Dysautonomia or invisible illnesses. My writing and ability to connect with others are the two things that keep me positive throughout all of this.
A lot of my writing about chronic illness is to educate people who maybe haven’t had to deal with anything like this before. It’s so weird looking like a completely normal, healthy twenty-something when your body isn’t working properly. I think there are a lot of people who mean well, but maybe just don’t understand that there is such a thing as invisible illness and you wouldn’t know someone was feeling terrible unless you talked to them.
It’s crazy thinking about all the time I’ve spent in the life of having a chronic illness. When I first got POTS I was terrified hearing that I would have it for the rest of my life. Then, I was optimistic that I would be better within 5 years because of some studies I had read about the condition. I reached the 5 year mark this August, and have felt frustrated at times that things still aren’t where I want them to be, but I am going to keep fighting to get a more normal life back, and I so appreciate how much I have improved since August 2013. It hasn’t been easy turning my everything upside down and learning to be positive though pain, but I have more faith that God has a plan for my life and will make something beautiful out of even unpleasant circumstances. After all, if I hadn’t gotten sick with POTS there is no way I would have met Robert, so I trust that God knows what He’s doing, even when it doesn’t always feel like it. I just might not know why everything is happening the way it is right now, but maybe one day I will.
Thanks for reading if you made it this far! I know this was a much longer and more informal blog post, but the old versus the new me is something that I think about often because it is just so freaking weird having this as my life. I still feel weird sometimes telling people I have a chronic illness, and it isn’t anything I ever imagined would happen to me — especially at such a young age. I just think it’s important to remind people that I have had a really normal life up until getting sick with POTS, and despite being different now, I still can relate to so much to normal people as well as the “new” community I’m a part of.
Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*
Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.
Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.
1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.
2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.
3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.
4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.
5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.
I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.
*For any POTSies who are curious, I am doing the Levine protocol.