Krista Lauren

@krista-lauren | contributor
I got sick with POTS & EDS a month after graduating college as I was preparing to move to NYC to start my dream job at Seventeen magazine. Chronically positive, Nutella enthusiast, and dog lover.
Krista Lauren

Not Feeling Alone With Anxiety

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 at times, you can’t even escape anxiety in your dreams. Anxiety is a cousin of depression. They’re close in the sense they can both 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 there is a world around you. I think that with depression, the person is often in the middle of the fog and can really only see a few feet around them. They can’t tell 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 a while. It is exhausting when you feel 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, 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. 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.” “You can’t do that one thing.” These 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 about them with confidence and as truth. It’s a lot easier said than done to choose not to believe the lies. 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 it 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. 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 therapy is still stigmatized and people don’t always love and support things they don’t understand. So many people you would never guess have a mental illness 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 celebrities and people in the limelight who have platforms are speaking up about their struggles. Emma Stone, Ryan Reynolds, Mindy Kaling and Stephen Colbert are all people who live to make others laugh, but struggle with anxiety. Jim Carrey, Owen Wilson, Ellen DeGeneres and Sarah Silverman have all been very open about dealing with depression. It isn’t just actors and comedians who struggle with mental health, though. There is a long list of other high-profile people, ranging from athletes to astronauts, who are also 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 we realize we are never alone in our thoughts or feelings. People need to be taught from a young age it’s fine for everything to not be OK sometimes. People should also realize we all have battles we’re fighting and that we can share our struggles with our loved ones. And most of all, it’s important to be kind to everyone we meet. I am not “Instafamous” so I do not have a large group of followers, or a particularly captivating life to share about. But I want to open my heart up to the people who do read this in hopes it can make 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. Follow this journey at Krista Lauren’s blog.

Krista Lauren

When I Question My Worth as Someone With Chronic Illness

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, I have made leaps and bounds in progress, but I am still 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 embarrassed 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 feel 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. It says we are made in God’s image, and He only creates beauty for the world. I think it’s very powerful believing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say 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 no one else could. 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 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 can teach you what is important in the world, though, and give you an amazing perspective people often don’t have until much later on in life. It can teach 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 can teach lessons of patience, hard work and resilience. You can 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 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 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 why I’m here. 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 OK.

Krista Lauren

The Differences Between Temporary and Chronic Pain

Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling, but many people have never dealt with before, is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet to experience it. You can use the right words, but they won’t really connect until they have something to relate it to. For example, think about the way some of your first crushes felt, versus how actually being in love feels. They both have the same warm and fuzzy feelings as a base, but feel drastically different. That’s how I would compare temporary short-term pain, such as an injury or a broken bone, to chronic, long-lasting pain. I’ve experienced both, and before getting sick, I wouldn’t have had anything to draw from to compare to the new exhaustion chronic pain brings. You don’t ever get a break from chronic pain. Even when you can kind of ignore some of your problems on your good days, the bad days are right around the corner. I do a great job of not thinking too much about that when I am well, and I’ve gotten really good at living in the present when I can. Then, the bright side is that on bad days I know a good one just has to be right around the corner. Chronic pain is a vicious cycle, though, and wears you out to your core. Not only does everything hurt, but you also are always so incredibly tired from not being able to sleep. Whether your body is annoyed from being tense and having your muscles screaming at you all day long, or your brain keeps you up thinking about the pain you’re feeling, you don’t get good rest. I don’t remember the last time I got in bed and just fell right asleep. It’s been years. I’m constantly sending articles and trying to pull up scientific findings about my conditions to people I love because I want them to understand how I feel. God, I want to be understood. I hate feeling cranky because of my pain or having days where I can’t stand it anymore and just break down and cry. Granted, the latter are few and far between, but sometimes my body just can’t take anything else and needs some sort of outlet. Talking isn’t my best one because I want to help other people feel happy and good, so I don’t like to complain – or maybe I don’t know how to complain properly; I haven’t quite figured that one out yet. I love to write, but I don’t always have the strength, and frankly I don’t want to leave behind troves of essays on how much my body hurts. I just don’t feel like anyone I’m incredibly close to has been in a situation quite like mine, and it’s minorly heartbreaking knowing that yes, I always have a shoulder to cry on, but I don’t have anyone who really gets it and can tell me that they know how I feel. That’s why I am motivated to write about my struggles. Don’t get me wrong; I don’t want anyone I love and care about to ever understand chronic pain or any other kind of difficulties in life. One thing I’ve always been thankful for is that I’m the one with this problem. I would gladly take every pain away from the people I care about if it meant they didn’t ever need to face it themselves. Not only do I feel like God gave me a strong heart and will to keep pushing forward, but I think He gave me a beautifully optimistic outlook on things, and I’m really grateful for that. I think I’m handling the hurdles I’ve been thrown the best I possibly can, and I actually think that despite being a painfully average 20-something, I am exceptional in accepting the negative things in life as a reality and then figuring out how they can turn into a blessing – or at the very least, something that doesn’t consume me. I have always said that I may have postural orthostatic tachycardia syndrome (POTS), but POTS doesn’t have me. The same goes for my chronic widespread pain; it’s a big part of my life, but there’s no way in hell that chronic pain is going to take my entire life from me. I will count my blessings until the day I die, and today those are my loved ones, dogs, chocolate, Taylor Swift, Brad Paisley, and each and every one of my readers for this little blog. Follow this journey on Single in the Suburbs. We want to hear your story. Become a Mighty contributor here . Gettyimage by: kieferpix

Krista Lauren

Officer's Response to Woman With POTS Parking in Disability Spot

One thing every single young chronically ill person will tell you about is the incredibly frustrating battle that comes with having an invisible illness. We are constantly trying to regain normalcy in our lives, but also have to roll with the punches through the symptoms our illness brings along for the ride. For example, I can’t do many of my favorite activities anymore – let alone even just be outdoors in ridiculous heat – however, I don’t like being different and asking for help, even when I need it. Today I went to my alma mater to run a quick errand. I wasn’t feeling particularly great, but I told myself it would only take five minutes and to suck it up and get it over with. I mapped everything out in my head and went to my usual parking space. It’s one of two disability visitors spaces, both of which are always available. I sat for a minute to prepare for my walk up the hill and grumbled in my head about how I wasn’t up to my heart racing today so to just take it slow. As I began my miniature hike, my heart began to thud swiftly and hard (for those of you who don’t know, when POTSies even just go from sitting to standing our heart literally beats as fast as someone running a marathon… No wonder I’m always so tired!). I walked slowly and carefully up the hill and focused on each step so I wouldn’t trip – that’s just because I’m Krista and a little bit clumsy – it has nothing to do with POTS. I smiled at two young police officers when I looked up, and as I passed by them I heard one say to the other, “Handicapped? Really?” with a snicker. My heart stopped – then went back to racing even faster than before. For a split second I was shocked, then brushed it off as my imagination. I always feel embarrassed when people can tell I’m different, and I hate having any sort of extra attention. This makes me feel like people are staring sometimes, even when they’re not really paying too much attention. I had a gut instinct, though, that I needed to turn around when I got to the top of the hill. I wanted to make sure my car was going to be OK in the visitor’s spot and that I didn’t need a university parking pass to be there. Despite having parked at that spot a hundred times, you can never be too careful at my alma mater. Sure enough, they were smiling and looking at my bright blue sticker with a little black device. Great, I thought to myself, now I have to trek back down the hill to see what’s going on. I wasn’t in the mood to deal with confrontation, but I know how ridiculous our school was about ticketing, so I wanted to make sure I wouldn’t have any trouble when I came back from my meeting. Deep down I knew it was because of the way I looked, though, that the officers rushed down to check my credentials. I quickly realized I hadn’t been imagining things with the officer’s remark, and that if he was gutsy enough to say that while I was right next to him, he might be confrontational when I chatted with him about my disability. “Excuse me, can I help you?” I asked. “We’re just making sure your pass matches up with your car,” one of the officers replied with a grin. “We know people often take advantage of these spots.” “I have my DMV card, hang on,” I replied shortly. I wished I had called him out on making a snide remark earlier, but I honestly didn’t think a trained police officer would have been that loud and unprofessional about being so snarky. At least if you’re thinking that about me, keep it to yourself and your partner, don’t bring me into your little joke. I didn’t smile as I showed my pass. Not smiling at someone when I’m interacting with them is actually one of the hardest things for me to do, but I felt frustrated that I was having to deal with this when I already wasn’t feeling great. “OK, good,” he replied. “Thanks. We just didn’t want you to be using grandma’s parking pass to get a better parking spot,” he said. “You know – so we can protect people like you who really need it,” he corrected himself. Honestly, this part of the interaction bugged me a little, but I don’t fault people for saying goofy things like that anymore. I understand it isn’t normal to see a 26-year-old who is disabled but looks healthy, and a lot of people haven’t even really had to interact with someone like me before. The thing that bothers me about the whole ordeal was the way they went about everything. I completely agree that they should check to make sure I’m actually disabled. People who use the stickers but don’t need them should absolutely get in trouble. The way they went about it was wrong, though. I shouldn’t feel like I am doing something bad by using a disabled parking space when I need one, and I should feel comfortable using the resources that help make my life a little more normal. I already feel embarrassed enough when I have to park in one of those spots at Trader Joe’s and make three trips back and forth to carry $20 worth of groceries to my car without hurting myself. I hate that people stare at me to try and figure out why I am in that blue space, and I hate going grocery shopping with my mom and having people think I am a jerk for making her carry everything to the car by herself. I don’t want to feel like the people who are supposed to be protecting me are also going to give me grief about being a weak 20-something. I realize the police officers were just trying to do their job, but I also know enough people in that field to know there is a lot of sensitivity training so they can be professional while they are on the job. I would have had absolutely no issues with them checking my pass – even right after I left my car – however, making me feel uncomfortable by being snarky loudly enough for me to hear was completely uncalled for. In hindsight, after talking to a few people about it, the officer more than likely wanted me to hear his comment, as he waited until I was 200 feet from my car and right next to him, and thought he was catching me in the act of something I shouldn’t be doing. I didn’t write about this to shame the police officer or have a pity party for myself. This is just such a perfect example that you never really know what someone is going through unless they tell you. I look fine, and if you stuck me next to a dozen other 20-somethings you would never guess I was the sick one. I hope this story helps people be more gentle towards other human beings, as you never know what someone else is dealing with. Another reason I wanted to write about this to raise awareness about invisible illnesses is because not everyone with a chronic illness is as bold and open about their problems as I am. A few years ago when I first got POTS, my mom had to be my advocate because I couldn’t even stand without getting incredibly sick. People who are going through things like that should not have any extra obstacles that could easily be avoided, so I think it’s important for me to speak up about my experiences in hopes to better the lives of others who are chronically ill and don’t have someone to advocate for them. A good lesson from all of this is to be kind to everyone you meet, and never make assumptions based on the way someone looks. I am going to be writing a letter to the police department so they can hopefully be better equipped to deal with others who are like me on campus. This post originally appeared on Single in the Suburbs. We want to hear your story. Become a Mighty contributor here.

Krista Lauren

A Letter From a 'Slow Walker' Due to Postural Orthostatic Tachycardia

There is often a lot of talk about how annoying “slow walkers” are. I have always fallen into the “annoyed” category since God gave me long legs at birth. When I was 22 I got sick with a chronic illness — postural orthostatic tachycardia syndrome. It started off as a debilitating sickness. I could only walk about 12 feet without resting, and could only make the long journey up a flight of stairs to my bed once a day with the help of my parents and taking little breaks between climbing a few steps and sitting down to rest until I reached the top. When I was finally well enough to go out of the house for a 15-minute errand to the grocery store it was a big deal. I felt like I had this tiny piece of normalcy in my life, even though I felt constantly dizzy and nauseous. Wegmans was my number one choice for a field trip, and I wanted to see if I could go find a salty snack and chocolate bar while I was there. One salty snack, one sweet treat. That’s it. I walked to the dessert aisle first, as it was closer to the entrance, and my eyes grazed over dozens of choices. The room spun as I tried to read new labels, and my body started to gently sway. I knew I wasn’t feeling well enough to stay in this upright position much longer, but I was determined to be normal again — at least for a few minutes. I snagged a bar I thought might be halfway decent and took each step to the popcorn aisle as carefully as I possibly could. I didn’t want to fall, and I absolutely was not about to faint in public for the first time — not today. As I put one foot in front of the other I vaguely noticed the bustling around me. I felt mildly panicked as I began to realize I shouldn’t be alone anymore and that my heart was racing the way it does when I’m about to pass out. My eyes slowly scanned the aisle, and I couldn’t feel my footing anymore. My feet were still planted firmly on the ground, but my head was spinning in circles. “What the hell is her problem,” I hear behind me. I turn, dazed, as a woman my mom’s age firmly nudged me into the shelf that held some sort of food I couldn’t quite make out. It wasn’t until I was intentionally lying on the ground (this is a tactic POTSies use to ward off some symptoms and feel a little better, hence the “postural” in “POTS”) to get the blood to flow back to my brain moments later that it all clicked. I was the one with the “problem.” Tears welled up behind my foggy eyes. I had never been “different” before, and I wasn’t used to having a disability. No one could tell by looking at me that I was sick, but my body reminded me every second of every day that I was ill. The room kept spinning, but somehow I kept thinking. I was a heavy mix of angry, frustrated, and devastated. Why aren’t people more patient? Why can’t we have some sort of label for the chronically ill so that people would know I need extra help? But wait, why can’t people just be kind to others in general and realize that you never know what someone else is going through by of the way they look? These are questions I never really thought about before I got sick. I am guilty of complaining to friends about “slow walkers,” moody waiters, and distracted baristas. Having a chronic illness has taught me the very important lesson that just because someone looks fine doesn’t mean that they are. People can have a hard time for a number of different reasons, and instead of making their life any more difficult by making snarky remarks or getting frustrated, we should all take a minute to practice patience and kindness. After all, even if someone doesn’t need it, there is never any harm in being kind to others and treating them the way you would like to be treated. Sure, people can be frustrating sometimes, but is the hustle and bustle and rush of life really worth hurting another human? Is whatever you are rushing to really worth upsetting anyone over? I think the answer for most of us, if we sat down and thought about it, would be “no.” This story was originally published on Single in the Suburbs. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Kritchanut

Krista Lauren

What It Means to 'Be Strong' With POTS

Today I would like to dissect what it means to be “strong.” This has been a word used to describe me by so many people since I graduated college, got POTS and went through a number of difficult trials, but it still feels kind of funny when I hear someone throw this adjective next to my name. Dictionary.com defines strong as “mentally powerful or vigorous,” but it doesn’t offer any tips on how to be strong or what kind of trials make you strong. I was made strong. I didn’t choose to be strong and I am in no way admirably resilient. Before getting sick I was used to a fairly comfortable life, and never in a million years thought of myself as tough or as someone who would face trials well. Almost four years later though, here I am. I had a choice to make when I got sick. I could take what the doctors said, admit defeat and recognize that my life would never be the same, or I could fight for the best life I could possibly have. I quickly chose the latter. This involves keeping an open and optimistic mindset, being incredibly diligent with my doctor appointments, physical therapy and diet, and finally — learning how to rest. When I first got my diagnoses I asked through tears whether I’d ever get better. The nurse laughed and told me I wouldn’t and my mind immediately went into a dark abyss, thinking about a long life of dizzy spells, fainting and feeling miserable. I was incredibly lucky to have my encouraging mother with me, who followed me to the parking lot and said the nurse didn’t know what she was talking about. She said I needed to take each day as it came to me, and think positive thoughts. To this day I believe this is one reason I am slowly getting better and have been able to make peace with my new life. I’ve had POTS for three and a half years now and haven’t had a week off from going to visit some sort of doctor. I typically have two physical therapy appointments and either acupuncture or a massage to work on managing my chronic pain, as well as regular visits to my cardiologist, neurologist and endocrinologist. I go to the gym five days a week — even when I am feeling awful — because one of the worst possible things for a POTSie to do is get de-conditioned. My gym routine involves a short 30-minute recumbent bike ride, as I could easily faint if I am in an upright position. I get B12 shots every other week since I am deficient in it and B12 seems to be a link to chronic pain. Then I have to take a lot of time to rest so that my body can settle down a bit. I get worn out incredibly easy, and a trip to the grocery store turns into a long ordeal because of the recovery time afterward. Lots of POTS patients develop adult allergies, so I can’t eat many of my favorite foods anymore. I have given up nightshade vegetables (potatoes are my favorite food and I miss French fries dearly!), gluten and I really limit my dairy and sugar intake. I don’t drink coffee at all, partly because I can’t have caffeine and partly because I just can’t have coffee, period, and I don’t drink alcohol at all anymore. The coffee is definitely a million times more difficult. Lastly, I have had to learn to listen to my body and rest. This is such a hard thing for me to do, as my mind is incredibly active. Anyone who knew me before I got sick knows I love to work and play, so sleeping and rest were never really a big part of my vocabulary. I joke to my friends that I’m just catching up on all the time I missed in my life before, but it really is a difficult thing for me to wrap my mind around. I always have a million and one things I want to do and write about; however, my body isn’t very kind to me. Writing hurts after 10 minutes, and the dictation software I have used is grueling. I can’t sit at a desk chair very long without having a lot of pain in my shoulders, and some days I can’t stand without feeling dizzy. Sometimes all I can do is rest, and I’ve learned that it’s OK to spend time listening to podcasts and watching HGTV when I really can’t do anything else. Yes, I would much rather be working and making a living for myself. I wish I could live in New York and write for a magazine, I wish I could have a paycheck to save for a new car or fun wardrobe, but that’s just not in the cards for me right now. Right now it’s my job to focus on getting better, keep taking care of myself, and trust that God will make something beautiful out of my struggle. The best advice I could possibly give anyone going through something tough is to take each day as it comes to you. Worrying about things in the future that you cannot control won’t help you change them, and looking back on the past won’t make your present any more satisfying. I know what it’s like to feel helpless and I know what it’s like to feel like life isn’t fair. I have found that the greatest feeling when my world is crumbling in on me is learning to give my problems to God and let Him take care of the things that are outside my control. If I can be strong, you can too. I’ve always thought I am an incredibly average person in most regards, which should offer an incredible amount of encouragement to anyone reading this. If I can do it, so can you. This post originally appeared on Single in the Suburbs. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via kieferpix.

Krista Lauren

What Two Hours Feel Like With Chronic Pain

6:15 p.m. “Shit,” I mumble as my leg gives out from the shooting pain striking through my body like a lightening bolt. I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about. 6:20 p.m. I make my way over to the couch, carrying my pre-made dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house. 6:24 p.m. It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful trigger point knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled. 6:27 p.m. I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use? 6:45 p.m. I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again. 7 p.m. I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere. 7:03 p.m. I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. Postural orthostatic tachycardia syndrome (POTS) can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much! The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. “Gossip Girl” is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and turn on “The Kane Show” podcast I had been listening to for the past several years. I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water. 7:16 p.m. Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think. 7:50 p.m. My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain. Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, cannot. 8:03 p.m. I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait. 8:05 p.m. I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my 20-something friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are “normal.” I know that better than most. 8:06 p.m. My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television. 8:08 p.m. I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck. Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today. I searched the document and the word “pain” was listed 21 times in the two-hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface of how hard it is to deal with so much pain, day in, and day out. Twenty-two. This blog was originally published on Single in the Suburbs . We want to hear your story. Become a Mighty contributor here . Thinkstock photo by m-gucci