I’ve spent the past two days on the couch. Not by choice, but because of some testing one of my doctors ordered a few months back and I’ve had to come off my medication for it (which I’ve been absolutely dreading, hence the procrastination). Coming off medication is as much of a mental challenge as it is a physical struggle, and it’s definitely been a cruel blow to the bubble of peace my meds have graciously provided for me over the recent months. If anything, this testing has shown me the amount of freedom my meds give me, and in my hazy, symptomatic state, I’m convinced I will never take them for granted again.
I figured what better time to finally complete this testing than during a pandemic with loads to watch on my Netflix cue, but in all transparency, there’s never a good time to voluntarily subject to feeling unwell. I’ve done a lot of medical testing these past few years. Labs, scans, EEGs, autonomic functionality, the list goes on. I’ve spent a lot of this time, too much of this time really, feeling everything far from well, so I do everything in my power to prevent flares and symptoms, and more testing than what’s absolutely necessary. But sometimes these situations are unavoidable. Sometimes there’s testing that really must be done, so my only option is to hold on tight and brave the looming, incoming waves. Like I mentioned above, so much of chronic illness is a mental challenge as much as it is a physical struggle. POTS has certainly been the mental battle of a lifetime.
On a weirder note, my mom and dad drove downtown yesterday to pick up another sterile lab jug for me to urinate in. That’s true love (and also really gross, sorry!) and I don’t know how I’d survive POTS without them, frankly. Their love is a source of great strength for me, a deep reservoir I tap into often.
Coming off my meds for testing has been humbling to say the least, and I’ve gained valuble perspective on how much progress I’ve made in recent months. Last week, I went on a short walk in 90 degree Texas heat and was averaging around 4000 steps a day. I’ve been able to go swimming, walk through the grocery store (masked, of course), and I’ve begun an online class at a local community college, which has been enjoyable to give energy to. My medication regimen and physical therapy program are helping me claim my life back, but it’s a slow, lengthy marathon that happens gradually overtime. This type of progress can be harder to notice on a typical, day-to-day basis, so sometimes situations that put a jolt to my system (like this testing and weekend on the couch) remind me just how much better I am feeling these days. What a major victory!
But yesterday I didn’t feel quite so victorious. Yesterday it was a struggle just to walk to the bathroom. This can be the reality of chronic illness, the way it flows in and out of your life like an unwanted guest, ignoring rent payments and courteous roommate formality. It often loiters in the background before jumping out in fullforce, seizing days at a time and stealing pieces of you in its brisk, crippling stride. It’s a cruel, constant tug-of-war battle that I never agreed to play, but here I am holding on, grasping the weathered rope until my boney knuckles turn white.
I laid on this couch all day as people moved around me, going places, doing things. They had an actual day. They were free to roam wherever they chose, while I stayed still, cemented to this couch. I’ve gotten so used to this stillness, so used to the sitting out, that this worn out couch and I are almost buddies, a partnered, package deal. I kept wondering when I bumped paths with the world-renowned Cleopatra, wondering what kind of curse I encountered that damned me to this time of statue. Somewhere deep within me, I could hear my spirit whimper; held hostage within this body, it was chained entirely against my will.
That used to be my every day life for months and what a sad thought that is. Yesterday, I passed through that flare as a visitor, knowing no matter how bad it may get, I could resume my medications tomorrow. But that did little to calm the rattling of my bones, scarred and shaken from the days they have lived through. I truly don’t know how I got through that time, no matter how much I reflect or ponder. During those early, pre-diagnosis days, I don’t quite know what pulled me through the next moment, to the next morning, to the next month. Maybe it was my parents or that tiny glimmer of hope, but more often than not, my “strength” people commend me about seemed gone in all capacity. At the lowest points, on the darkest days, strength was nowhere to be found. Strength, I have learned, is more of a byproduct from pain, a callous on the soul that’s located deep within.
Even there, in that flare, there was progress. Immense progress. There was fear but there was knowledge, a trust and comfort in what I’ve learned about my body, about this disease, about how to get through hard days like those. It’s Monday, I am medicated, and I am already feeling better. But this morning I woke to a sweet surprise before I even swallowed my pills. The worst was over, the day was new, and I had survived the gnarly waves.
The peach is fuzzy. Firm. Extremely unripe. The microscopic hairs tickle my fingers as I place the summer fruit back in its cardboard crate. I take a few steps, eyeing the bright red strawberries that have never smelled sweeter when suddenly, I am filled with an overwhelming desire to fall to the floor. The mild dizziness that typically lives tamely in the background fills my body in full force, panic creeping in as I quickly realize I am too weak to finish my shop. The fresh strawberries blur into scarlet spots, filling my vision with red as anxiety seeps out my body in small droplets of perspiration. My mind is racing almost as fast as my heart, swarmed with questions like, “What’s going on? What do I do, and where on Earth can I sit down?” There’s not a chair in sight. Do I leave my cart and try to make it to the car? Am I closer to the entrance or the exit? How long have I been standing here and can anybody help me? The thumping of my heart echoes inside my head as my eyes shoot open, adrenaline coursing through my veins. Another bad dream. Another POTS dream. Leave it to my debilitating medical condition to turn a simple grocery store shop into a rattling nightmare.
Not many people would find grocery stores to be frightening places, but ever since I developed POTS, my subconscious is filled with fears of getting stuck in public settings, too weak and symptomatic to walk back to safety (i.e. my car, a bench, any available chair). Normally, I can contain the fear into a small hum of anxiety, nothing more than a stream of nervous thoughts that only exist when my body is upright. But due to the months I spent debilitated with no access to the medical care I needed, these fears are rooted strongly within me, even as my condition has improved through my current physical therapy treatment. These fears are rooted so deeply within me, they’ve started to appear in my dreams.
Although my anxiety about my condition has been cultivating for quite some time, dreaming about POTS has been a relatively new occurrence. In fact, as my illness spiraled out of control last September, my sleep fantasies were actually the one place I could be normal, unscathed by the medical condition that bulldozed through my life. For a while, my dreams were where I felt healthy again, putting me back into memories and feelings I could no longer experience during waking hours. Sometimes I’d dream I was standing at a dinner party, shoulders back, relaxed on my feet, wearing high heels and tight, glittery clothing as I charmed a circle of close friends. I felt confident and cool, attentive and successful, starkly different from the person I was forced into being during the day, who laid on the couch under crushing fatigue, binging show after show and staring blankly at walls. In my dreams, I could walk without my heart racing unbearably. I could stand for as long I wanted, without having to worry about dizziness or near-fainting episodes or how much time I had until my body gave out. In my dreams, I was a full, abled person, and for a few quiet hours each night, I got to be my old self again.
Picture of the moon and stars, found on Pinterest.
The more time I spent waiting for treatment and the more disabled I became, the more my anxiety about POTS settled into my subconscious, wedging its way into those precious hours of slumber and polluting the dreams that used to be cherished. That’s when the grocery store nightmares began, turning simple, everyday tasks into large medical disasters. That’s when quietly, I began to fear leaving my house, daunted and unsure of what could spark an assortment of symptoms. There was even a period of time where I’d unintentionally designated the couch as a “safe place”, a location where I was protected and nothing bad could happen to me. When I lied on the couch, there would be no dizziness, no heart palpitations or shortness of breath, no terrible collapsing episodes that sent me to the ER. Lying on the couch couldn’t exhaust me more than I already was, and without proper medical treatment, walking was a risk I often didn’t feel like taking.
When I was officially diagnosed with POTS, the slow process of acceptance began, and acceptance meant that the illness was now a part of me, even in my dreams. It was real, confirmed, prevalent now in all hours of the day. After my diagnosis, I started dreaming about having to tell people about my condition, talking about all the tasks I could and could not do and how much of my life had changed. In my dreams, I relived my losses all over again, stepping into stories I ached to shed like snake skin. I starting having nightly visions about sitting in coffee shops with old theatre directors, having honest, raw conversations with highly influential people from my teenage years, from my life before. In other dreams, I now had limitations. I no longer dreamt about performing in musicals or belting a song on stage, unless it was it tainted by a whirlwind of symptoms. I started to have nightly visions of myself sitting alone at my kitchen table, confined within my home while all of my friends enjoyed a summer day in my front yard, basking in the sun without me. POTS invaded my dreams like a belligerent foreign army, and even in this nightly time of rest, I could no longer take a break from my unwanted reality. My illness was everywhere I looked, like enemy propaganda, brainwashing me into believing it would always consume my life.
But a few nights ago, I had a dream that I was running. I started off wandering in a field of wildflowers, taking in the sharp scent of freshly cut grass blowing in with the breeze. The sun shined down on me like a spotlight, a golden, heavenly glimmer, a ray of light pecking my cheek like a tender kiss from God. For the first time in a long time, the sunny heat didn’t bother me, my body tolerating and enjoying the warm air that surrounded me. For the first time in a long time, I felt the urge to run. So I did. My sneakers hit the Earth beneath me, bouncing with energy, strong and stable. Even though my mind was timid, filled with cautious thoughts such as, “don’t push yourself” and “take it easy”, still, I was running. In this dream, I was myself again, but I was my new self. The one who had survived years of hardship and medical trauma. The one who was stronger for all she had endured, kinder and more resilient. The one who was healing, and had found a way to live beyond POTS, pushing it into the background where eventually, it would fade until it vanished. In that dream, I was suddenly the girl who had survived, the girl who had grown, the girl I work every day to become.
A few months ago, this dream would’ve been a nightmare. It would’ve been hijacked by symptoms: head spinning, heart pounding, my lungs unable to breathe. I wouldn’t have been able to smell the fresh grass, spring with strength atop the damp Earth, or feel the sunlight gently kiss my skin, tender and with care. The beautiful meadow would’ve seemed like Hell, the heat and pollen aggravating my illness as the adrenaline convinced my panicked mind that the world was surely collapsing in on me. I would’ve woken up from the dream in a horrible mood, grieving for all I’d lost and exasperated at all still beyond my control. But this time, after this dream, I woke up feeling inspired, thinking about all the strength and knowledge I’ve gained, and how much I’ve grown from the exhausted girl I was just a couple of months ago. This time, I woke up remembering my progress, trusting my path, knowing that even if I’ve got a ways to go, with time and hard work, I’ll surely reach the end of it.
A picture of my dog, Dodger, dreaming.
When I left school last year, I dreamt about it every night for a week. Each time I fell into slumber, I’d transport back inside my college apartment, laughing with my roommates and relaxing on the couch, or I’d travel to a practice room, jamming on a piano, enjoying my favorite thing in the world. In my dreams, I picked up right where I left off, a busy, abled college student prepping for class and rehearsals. But each time I woke from these nighttime journeys, I’d find myself back in my childhood bed again, painfully overwhelmed by another empty day before me. Believe me when I tell you there are so many better things for a young adult to dream about than passing out in grocery stores, or crying about a diagnosis. But I have faith that one day, as I heal and change, my dreams will too. I have faith that one day the grocery store will be a little less daunting and a little more of a weekly nuisance, and that I’ll get to groan about the inconvenience of long lines with all the other shoppers around me, instead of feeling anxious about the lengthy vertical wait. One day, I will run again, and it won’t be just a dream. One day, I will become the girl I dream about, and she will become me.
The steam was blinding. I inhaled it like it was cigarette smoke, inviting the vapor into my lungs and feeling it relax every tense muscle, one by one. The warm mist was like nicotine, soothing and addictive, and I came back every night to get my fix, eager and greedy. I was hooked, I was obsessed, I was completely dependent on a hot shower to keep me sane.
A hot shower used to be my daily ritual, my nightcap and melatonin, but more than anything, it was my happy place; I adored hot showers. I loved the clean feeling I’d wear for the remainder of the night, the soft smell of strawberry soap diffusing sweetly from my skin. I loved the warmth that radiated from my body for hours, feeling snug and cozy and tenderly taken care of. I loved everything the shower stood for: relaxation, serenity, peace. My nightly hot showers were dear to me, a privilege I understood to be a joy. A privilege that, due to a chronic medical condition, was swiped from my grasp over the course of a year.
I used to always say “there’s nothing a hot shower can’t fix”. And for a long time, I believed this to be true. It could sooth heartbreak, rejection, bad moods and bad days. It could ease sore muscles, clear out sinuses, effortlessly untangling twisted thoughts and feelings. But when I was diagnosed with a debilitating form of dysautonomia last year, my beloved hot showers couldn’t make it better. In fact, they only made it worse.
In December of 2019, a grueling tilt table test confirmed I was suffering from Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, partly because it’s a mouthful and partly because Big Long Doctor Words tend to freak people out. POTS is a benign condition, but don’t let the quirky acronym fool you; this disease derailed my life. I went from performing in three hour musical performances and juggling college courses with rehearsals to struggling to wash my hair or walk up a flight of stairs. This type of dysautonomia is typically characterized by racing heart rate and lightheadedness when the body is upright, due to a malfunction of the nervous system that poorly regulates blood pressure and heart rate. This makes walking or standing for moderate to long periods of time difficult and exhausting, and although this condition is not life-threatening, its debilitating symptoms are certainly life-altering.
POTS is usually managed by increased salt and fluid intake, medications, and a modified, consistent exercise program, but it can be triggered by many different things. Warm rooms, hot days, standing up too quickly or lying down for too long. POTS can be triggered by dehydration, alcohol and hormonal changes, even from eating a moderate to large sized meal or particular foods. It doesn’t take much to send my heart racing, but heat is a consistent trigger for me. Within fifteen to twenty minutes of sitting in the sun, I begin to get tremors in my fingers, my heart rate increases, and I start to feel woozy and lightheaded if I try to walk around. This is because heat is a vasodilator, so the warmth causes my blood vessels to widen, encouraging blood to pool in my lower extremities and forcing my heart to work harder to pump blood to the rest of my body. Because of this, I’ve had to say goodbye to hot yoga, long days spent in the sun, tanning and sunbathing. I’ve said goodbye to saunas and hot tubs, most outdoor summer activities, and last but certainly not least, my beloved hot showers. Stepping into the shower at the end of a long day quickly went from a cherished stress-reliever and a therapeutic experience to a whirlwind of symptoms that sends me stumbling to the floor.
A picture of me lying down after my shower, taken in May. I still do this often.
Within two minutes of standing in a hot shower, my heart begins to pound, my fingers start to shake, I struggle to breathe, and my feet turn purple. Afterwards, I’ll feel drained of all energy, dizzy and fatigued, and become glued to the couch for the remainder of the day. It still baffles me the way a simple activity can be such a challenge, and I’d be lying if I said I didn’t have a few colorful words waiting for whoever’s up top, in charge of the universe. But because of my stubborn heat intolerance, and because I’d rather not use all my energy for the day on a simple shower, I’ve been left with no choice: begrudgingly, I’ve adopted shorter, cooler showers and baths, sitting down in the shower in an attempt to avoid symptoms. Showers are now a “get in, get out” operation, and there’s no longer time or tolerance for things I used to cherish, like singing in the shower. As a singer and music-lover for as long as I can remember, this has been one of the hardest joys to lose. Frankly, I’d give anything to belt showtunes in the shower again.
Because of POTS, I went from singing in the shower to shivering in the shower. I went from running and dancing and singing on stage to feeling completely wiped out from simply washing my hair. It’s been five months now of this new bathing routine, five months of temptation to turn the shower knob to the left, to claim back the heat and wash like I used to. Slowly, I’ve adjusted and gotten used to the chilly water, but there’s not a day where I don’t miss when showers were no big deal. When I could hop in quickly to start my day, or take my time and unwind for the night. I miss when they didn’t have to be planned strategically with my medication regimen, aching to go back to the days when I had no idea what a beta-blocker did. I miss when water temperatures were out of preference and shower lengths were out of pleasure, when my bathroom was a private karaoke bar instead of a harsh, challenging terrain tackled day after day. There’s no denying my new shower routine is by far more eco-friendly, but I miss the privilege of a long, hot shower; a privilege that used to be mine.
These days, I can’t go outside without an ice pack or a fan. I can’t stand in the shower, take a hot bath, enjoy a long day at the beach, or sunbathe in the summer. Sometimes I feel overwhelmed by all the constant “can’t’s”. I get sick of the “used to’s”, of the “not right now’s”, of the “maybe’s”, and the “one day’s”. I feel like I’ve been waiting forever for the “one day’s”. For the day I’ll be able to stand in the shower again, belting and riffing to my heart’s desire. For the day I’ll run a mile and not think twice about it. For the day I won’t have to worry about hot days and ice packs and whether or not a lovely afternoon outdoors will spark a nightmare of symptoms. I don’t know if I’ll ever be able to truly express the strain of living restricted by your body, spending day after day dictated by an illness. I hope one day I’ll finally be free, and there is a part of me that’s brave enough to believe it, but sometimes “one day” feels perpetually far away.
Pictures of me and my gear: an ice pack, personal fan, cooling cloth, electrolyte drink and an ice cold smoothie. I don’t use all of these tools every time I go outside, but the ice pack, fan, and electrolyte drink are must haves whenever it’s time to brace the summer heat.
But within the past few weeks, something beautiful has happened. I’ve noticed myself singing again, mindlessly, as I move about my house. A few nights ago, as I grabbed my pajamas and drew up a cool bath, I noticed myself humming an old favorite Taylor Swift song, something I haven’t done in quite some time. I stopped for a second, realizing it’s been over a year since I’ve had the energy to do this, to hum and sing like the music was a part of me, an extension of my spirit. To feel comfortable enough walking around my house, with fewer symptoms and much more ease, to express peace and contentment as music into the air. These days, thanks to physical therapy and my medication regimen, I’ve been able to move through the world almost how I used to, with lyrics and melodies and catchy tunes pouring out of me. For a moment I was struck by this facet of myself, the one that has energy for singing, for creativity and artistic expression, was here again, and it had defied the odds and risen from the wreckage of a life I loved and lost. It was a simple moment shared with no one but me, yet instantly I felt unified, whole, like all the broken parts of me were mending together. Like my emptiness was beginning to fill, like all the love I thought I lost was finally coming back to me.
Sure, it’s still not singing in the shower, but I’d say it’s better than not singing at all.
It is a typical Tuesday morning, and my mother is knocking on my bedroom door. She comes bearing breakfast, carrying a vibrant red tray that holds a plate of fried egg and potatoes, a small, ripe orange, salt tablets and an electrolyte-filled water bottle. She’s wearing a smile and summons the sunshine, opening up my blinds to let the light in. “Good morning” she says, delivering a kiss to my head. She leaves me to wake up, and heads back downstairs.
I nibble on the kind food, waiting for my medicine to kick in before I can rush to the bathroom. I am grateful for her generous labor in the kitchen, aware of how much thought, time, and energy she put into making this food, but I also feel angry that I couldn’t walk downstairs and cook breakfast myself. I juggle this gratitude and resentment as I lazily circle my feet, stimulating blood flow and nudging my tired, cranky body to begin this new day.
My mornings weren’t always so slow, and it didn’t always take an average of two and a half hours to get my body functioning, but everything changed after being diagnosed with a chronic, disabling health condition last December. Vaguely, I can remember the days where I’d spring out of bed, throw on my sneakers, and head out for a two mile run before school. Those mornings seem like ages ago, like memories that belong to someone else except they don’t. They’re still mine. I have to remind myself of this often.
It’ll be at least another hour of circling my feet and waiting, an hour of getting up just to sit back down all the while chugging oceans and oceans of water. I’ve gotten pretty good at filling the minutes, taking up journaling, meditation, and games of Words With Friends, but some days I can’t help but loathe my demanding illness and the way it steals time from me, daily. Some days I’d trade the extra hour in bed in a heartbeat for those dingy sneakers and early morning runs. Some days I’m tempted to scream, “Screw it!” to the salt tablets and the water and the waiting, throwing on a pair of workout clothes and running out the front door. But I know I wouldn’t make it very far. I know with my condition and these early hours, I’d hardly make it to the living room, let alone down the street. On these days especially, my body feels like a cage.
Picture of my old running shoes.
It was December of 2019 when I was officially diagnosed with a common yet scarcely known medical condition. After over a year of debilitating fatigue, dizziness, heart palpitations, and other miscellaneous symptoms, my doctor confirmed I was suffering from a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (also known as POTS). This condition affects my heart rate and blood pressure whenever my body is upright, making it difficult to walk or stand for long periods of time. Things like dehydration, heat, or extended periods of inactivity can intensify my symptoms, which is why mornings can be such a particular challenge.
With POTS, every morning is a battle. After lying horizontal for eight hours, it takes a lot of time, salt, and fluid for my body to tolerate being vertical again. A good, long night of sleep means waking up dehydrated, and waking up dehydrated means it’s even harder for my stubborn, misbehaving nervous system to regulate my heart rate and blood pressure. On good days, my body will wake up within the hour. On bad days, it can take up to five hours before I am finally functioning. On flare days, I never reach “functioning” at all. It’s been almost a year and a half of these fluctuant mornings, and waking up into a flare day is still an infuriating letdown.
On this typical Tuesday, I have physical therapy in the late morning. After all my tedious preparations, my mom and I climb into my car, her in the driver’s seat and me riding shotgun; a switch that is now routine. I sneak a quick glance at my mother sitting in what used to be my seat and feel my heart twinge with longing. As a twenty year old, I miss the freedom of sitting behind the wheel, and the independence that comes with a license and a set of wheels. I miss coasting down wide Texas roads, belting all my favorite songs, and mindlessly heading wherever I needed to be headed. These days, I’m scarcely headed anywhere, save physical therapy and my favorite local burger joint, and even before the entire nation locked down for a raging pandemic, I’ve been essentially homebound, my life revolving around physical therapy, doctor’s appointments, and sitting in the park. How did this happen? I wonder yet again. When did I become so boring and sad and crippled, and how do I make it stop? Turning my head, I look out the window, knowing the unchanged answer to these persistent questions. Still, I can’t help wishing it was different.
Picture of me after physical therapy with lunch from my favorite local burger joint, P. Terry’s; My family likes to call this “PT after PT”.
I stroll up to the front desk, signing in for my session and beginning my usual small talk with the charismatic receptionist. “What did you do this weekend?” she asks, innocently and unassuming. Considering how it rarely varies, this question shouldn’t be so hard, but I find myself scrambling to think of anything significant. “Uh, honestly, I can’t remember. Just a typical weekend I guess.” I reply, paired with a basic shrug. My weekends are quiet now, given that I’m still quite physically limited and because of this they blur together, usually consisting of the following three things: reading, writing, and completing my at-home physical therapy exercises. It’s a routine that still feels novel and odd, another aspect of my new life I’ve yet to settle into, and I often find myself embarrassed of its stark simplicity; it’s painfully uncomfortable to admit how physically limited I currently am.
My illness has changed many things about me, including what I can and can’t do, and this new life I’ve been thrusted into frequently feels like it was meant for someone else. Even in the forgiving privacy of my bedroom, I am constantly surrounded by pictures, clothing, trinkets and trophies curtly reminding me of the life I’ve had to let go of this past year. I can’t get dressed in the morning without seeing t-shirts representing programs and communities I used to be a part of, or hop in the car without seeing college bumper stickers that were once filled with pride and promise, but now burn with the sour taste of sorrow. Every new day of mine starts and ends in a shrine of my old life, while the hours in between burst with reminders and recollections of everything I’ve lost. For the past eight months, I have fumbled around my childhood home, trying to accept this new version of myself, all the while resenting that it even exists.
I’ve become a regular at the physical therapy clinic over the past five months, consistently coming twice a week for my hour-long sessions. I’ve never really been a regular anywhere, and I certainly never expected it to be here, of all places. As I set up in the gym, waiting for my physical therapist to finish up with a previous patient, I take in my familiar surroundings and wonder how this accustomed routine can still manage to feel so foreign. A year ago, I was in class at a university I adored. A year ago, I was juggling homework assignments with rehearsals, singing Italian arias in practice rooms and wondering what musical might be chosen for the upcoming semester. Now I’m sitting in a gym at a physical therapy clinic, peddling my feet on a recumbent bike and doing exercises that are designed to help me stand in the shower and go to the grocery store. The change is enough to make me dizzy, or maybe that’s just POTS.
Despite the overwhelming change, I’ve discovered the remarkable capacity to adapt that every human carries within. I’ve learned that it doesn’t take long to latch onto the in’s and out’s of chronic illness, and I’ve quickly gotten used to the salt tablets and electrolyte drinks and slugging liter after liter of water. I’ve gotten used to my medication regimen, the slow mornings, even having to sit in the chilly, shorter showers I’ve begrudgingly been forced to adopt. But I’ve never gotten used to the loss illness brings, the persistent canceling of plans, and all of the sacrifice that comes with putting your health first. I’ve not yet gotten used to the novel post-diagnosis life, the “new normal” people speak about that’s never once felt normal to me. I trust one day it’ll click for me and I’ll find a way to live beside or without my illness, going through my days unchained, but for now, I’m still figuring it out, half heartedly trying to get used to things I frankly don’t want to get used to.
An assortment of my favorite salt tablets and electrolyte drinks.
I can get through a Tuesday with my eyes closed, and I can recite the sodium content in various different electrolyte drinks without missing a beat. Off the top of my head, I can tell you the average time it takes for someone to get diagnosed with POTS – a lengthy four years – and I can also probably crush you in a game of Words With Friends (I’m kind of a pro by now…). But the one thing I can’t do is get used to the realm of chronic illness, and all the sacrifice it demands. I can’t get used to the world of symptoms, the too many days spent feeling unwell, and the holidays and birthdays shared with my condition. I still have yet to settle into the unforgiving flare days, the laundry list of limitations, and all the stolen time that’s taken from me daily. I can’t, I won’t, and I don’t think I ever will.
You get used to chronic illness – after all, it is chronic – but you also never do. At least, I certainly haven’t.
It started with a viral illness. Maybe it was from the mono during my senior year of high school that I never really felt better from, or maybe it was the upper respiratory infection that landed me in the emergency room during my freshman year of college, fainting on a Friday morning. Which one was the initial onset, it is difficult to tell, but for the past three years of my young adult life, I have battled daily, chronic fatigue, followed by dizziness, heart palpitations, chronic pain, and more. The first two years of this time was spent denying, ignoring, and wishing my illness away, until about a year ago when it exploded all over my life, forcing me to rebuild atop the wreckage. I was dragged into the chronic illness world kicking, screaming, spitting out every obscenity I know, and like so many others, it was a world I never planned on visiting, or getting to know so well.
The first time the name “POTS” would ever be spoken to me would be in May of 2019, in the middle of a lengthy diagnosis journey. I’d been waiting on referrals for rheumatology and sleep neurology, terrified, impatient, and exasperated at how much of my worsening condition was still unknown. At the time, “POTS” was only a story about a friend of my brother, the diagnosis of a swimmer who’d battled headaches and vomited when she stood for long periods of time. In the retelling of her experience, I listened as the words “can’t stand”, “throws up”, “horrible headache”, and “no cure” poked through the narrative, striking details of a burden I couldn’t fully understand. “POTS” was still a cluster of cooking containers to me, the thing you use to heat food on the stove and the dish that’s a pain to clean. It was just a random acronym, a group of bold letters that had no significance in my life. Or so I thought. I was unaware at this point that “POTS” was in fact the name of the illness running rampant beneath my skin; the name of a chronic condition that would soon take more and more from me; the diagnosis I’d receive by the end of the long year. I remember blocking out her story, thinking my doctors would surely figure out what was wrong with me, but three months later, I would walk out of their offices empty handed, my heart dragging behind me on the ragged, grey pavement.
The next time I’d hear the name “POTS” would be in my internist’s office that August, three months following the story of my brother’s swimmer friend. It was during a follow-up appointment to regroup and address my unnamed illness when she threw out that vaguely familiar name. She stated “POTS” was essentially the only likely condition we had yet to test for, a condition that affects the autonomic nervous system and is characterized by high heart rate and fatigue. It’s known to occur in young women, and considering my heart was pounding away at 110 bpm just sitting on her table, my persistent, prevalent symptoms were enough to enquire. She wrote a referral to an electrophysiologist, wished me good luck, and I walked out the office, clutching her doctor’s note like it was my last and only hope. At that point, it was.
I went home and googled, my heart fluttering as I read symptoms that outlined the past year of my life. Heart palpitations, fatigue, fainting or near fainting, lightheadedness, tremors, shaking and nausea. There were GI issues, headaches, brain fog, and muscle aches. Temperature deregulation, vision changes, fast, rapid heart rate; almost everything under the sun and almost everything I’d experienced. That day I felt something I hadn’t felt in months. A tickle in my gut, an internal spark, an igniting of hope that had almost burnt out. The path forward was narrowing, a horizon finally breaking in the distance, and I wondered if walking down this road, if following this referral might finally lead me onwards and through.
I didn’t know that despite the right direction, the road would still be bumpy, plagued with heartbreak and loss. I didn’t know the road would still be a lengthy one, that although I was closer to a diagnosis than I’d ever been before, I was still three months away from sitting in the office of a doctor who could finally, actually help me. I didn’t know what was to come, I only hoped it would bring answers.
I received the referral in August, after an entire summer of medical testing, but school was set to start by the end of the month. In my mind, the summer I had just spent as a professional patient, completing three sleep studies, countless blood draws, an EEG, and a CT and MRI of my brain should’ve brought the answers I was looking for. I should’ve been going back to school with a diagnosis, with everything tied up in a nice, neat bow, figured out just in time to protect my precious plans. But the new patient appointment with the electrophysiologist wouldn’t be until October, halfway through the semester. Would I stay home from school to continue my quest for a diagnosis? Or would I continue it in an entirely other state and try to get a referral there?
I made the decision to return to school in the meantime, thinking I could either wait at home twiddling my thumbs, or I could wait at school, with homework and friends to keep me busy. Looking back, this was a bit of a mad decision, considering my body was far from well and crushing fatigue was constant, but with no diagnosis, I felt I didn’t have a concrete reason not to return. Plus, I didn’t want the unnamed illness to disrupt my life more than it already had. I’d pushed through with this unknown condition long enough, couldn’t I push through just a little longer?
I made adjustments to my schedule, leaving a demanding but beloved major. It was a hard decision but I knew it was best for my health at the time. I’d shorten the amount of hours I’d take that semester, nixing any physically demanding classes, and I’d let all my teachers know I was dealing with ongoing health issues. My doctor was kind enough to write a note, officially asking for assignment and attendance flexibility, and although I didn’t know if I could make it through the semester, I knew I wanted to try. I’d go to school while waiting for autonomic testing, praying my optimism would protect me from failing. I clutched my hope like it was a metal shield, hiding behind its sturdy support, but soon I would learn no amount of hoping could salvage the unraveling of my old life. It couldn’t save me from the pain, and it couldn’t reverse what was already in motion; nothing could. My illness would ultimately consume my life, and there was nothing I could do about it.
I lasted five weeks into the semester. In those five weeks, I never once completed a full week of classes. I crashed in bed at four in the afternoon, listening to my roommates come and go, off to parties and rehearsals, meeting up with friends. Lying on my bed, I’d watch the sun set every evening, alone, scared, and feeling so tired I could hardly move. Three weeks in, I visited my doctor in town, trying to get a referral to a local dysautonomia clinic, but it took six weeks to even schedule an appointment. By the fifth week of school, I ended up in the emergency room yet again, due to a 170 bpm heart rate while walking around my apartment. With my illness spiraling out of control once more, and after years of pushing and pushing my body to keep up, something inside me gave out, snapped, decided it had had enough. I wouldn’t be finishing the semester, and I wouldn’t find some way to miraculously soldier on. I would be going home, waiting on referrals in my hometown, leaving pieces of myself on the college campus I adored; pieces of myself that would never be mine again.
View of the sunset from my dorm room bed.
My apartment was five minutes away from a world-renowned dysautonomia clinic. I was a young, debilitated college student desperate for medical treatment, unable to walk to classes because my heart rate got so high. My internist in town did all that he could, sending letters to the clinic, his nurses calling every morning, but the clinic simply couldn’t squeeze me into their packed, rigid schedule. They were booked six months out, into the next year. And how would squeezing me in be fair to other patients who had waited the long six months for help? The demand for autonomic testing in America is so high, dysautonomia clinics across the country are swamped. There are not enough doctors or time in the day to see all the people who need to be seen, or to help all of the people who need to be helped. I was a person of many who needed to see an autonomic specialist, who was living with a quality of life similar to patients with congestive heart failure. The reality was, I could no longer take care of myself, could no longer cook or shower, and my illness was consuming me with each passing day. I withdrew from college, said my goodbye to my family of friends, and then I went home, and I waited. Help from doctors was months away.
The waiting was the hardest part. I watched my world become smaller and smaller, independence and freedom swirling down the drain as my mother washed my hair. Simple walks around the neighborhood became increasingly more depleting, and life became an activity I watched through a downstairs window. The sun would rise and fall, the birds would come and go. The neighbors’s cars pulled in and out of driveways, going places, doing things. I was no longer a participant in the world; all I could do was observe.
Although my body kept me breathing and woke me up for each new day, I wasn’t living, I was surviving. I waited for doctor appointments as my friends carried on at college, sending their love while their lives continued, essentially unchanged. They would continue to grow in school, continue to learn and deepen relationships, continue to live the college life that was swiftly taken from me. These were the days where movies were a life raft, floating me to the next hour; if it weren’t for the television, I would’ve drowned in my fatigue.
After two months of being out of school, I finally met the right doctor. It had been two months of meaningless tv shows, two months of writing angry entries in my journal, two months of avoiding music and reminders of the beloved life I lost. Two months of sitting at the park, two months of lying on the couch with a heating pad, two months of hardly telling anyone where I was, that I had left school, that I was back home and depressed. By the time I finally saw the right doctor, it would be another month until I’d be able to be tested. A month of more television, a month of more angry journal entries, a month of feeling increasingly more trapped inside my home, inside my body, inside a reality that I never imagined would happen to me. It was a reality I wanted a gift receipt for, some way to be refunded for the wild, energetic, young adult years I lost.
Journal entry from 12/13/2019.
In mid-December of 2019, after a grueling tilt table test preceded by three various autonomic function assessments, I was finally diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, and it was no longer just a group of cookware or a sickness that only happened to someone else; it was now the name of the health condition that had assigned itself to me. This form of dysautonomia makes it difficult to walk or stand, as the dysfunctional nervous system struggles to regulate heart rate and blood pressure when the body is upright. Although it is a benign condition, it can be incredibly debilitating, triggered by simple things such as a hot shower, a warm day, even from eating a moderate or large sized meal. A diagnosis opened up a whole new world for me, one I still didn’t particularly want to be a part of, but a world that had access to help; I walked out of that doctor’s office with pamphlets, referrals to a physical therapy clinic and a dietician, and now I had a relationship with a doctor who validated and understood my condition. From the very beginning, I never wanted a diagnosis, but that day, the year-old ball of angst that had cemented in my gut dissipated because finally, I had answers.
The treatment for POTS takes an individualized approach, as no two patients are the same. This syndrome can have varying degrees of debilitation, along with a vast assortment of symptoms and causes, so naturally, treatment varies per the individual. However, care for POTS often consists of increasing salt and fluid intake, modified, consistent exercise programs, various lifestyle changes, and a mixture of medications to help lower heart rate and raise blood pressure (typical medications are beta-blockers, vasoconstrictors, stimulants, and more). There is no cure for POTS so treatment is aimed at managing symptoms, and prognosis typically depends on the age of the patient and the cause of the disease. Because my doctor believes I contracted POTS as a result of a viral illness, my prognosis looks quite good, and it’s predicted I should see relief in a few years’ time.
Because so many people have not heard of POTS (including many doctors…yikes!), they assume my condition is rare and that my experience with a viral illness does not happen to people often. I wish this was the case. I wish there weren’t so many people in the world that understood my tale of pain and the struggle of POTS so well. It is estimated up to three million people in America alone are suffering from this disease, though it is likely more, considering how often the condition is misdiagnosed and how difficult it is to get access to the correct doctors and medical testing. While not all three million of these people developed POTS as a post-viral condition (there are several other causes such as EDS, autoimmune conditions, and pregnancy to name a few), that is a staggering amount of people living with this chronic disease. I just came down with a virus, the same way you’d catch a cold. It wasn’t a rare, freak event. It can happen to anybody, and it happened to me.
One viral illness. That’s all it took to transform my life. These days, I struggle to process the lasting impact of a single infection. The fact that it’s led me to over seven doctors in the span of a year. The way it has shifted, stalled, and shattered my life, my ideal college career, and plans I had for the future. Often, I think back to stomach bugs in my childhood and the typical colds and rounds of flu I’ve battled throughout my adolescent years, baffled at the way I was able to recover from them so quickly, unscarred and whole again within the course of a week. Back at school the next week. Now I live a life where time moves slow and fatigue comes fast and standing in the shower is a victory to be celebrated. Now I am faced with the daunting task of rebuilding an entire life, starting from the very beginning: teaching my body how to walk again.
The medical condition I have makes it hard to stand or walk for moderate to long periods of time. When I do, my blood pressure drops, my heart begins to race, and my nervous system begins its fight against gravity, battling the force that always wants to pull me down. But despite it all, I get up. I take my medicine, I swallow my salt tablets, I go to physical therapy. Despite it all, I’m still standing, even though there were many days in this health journey I was convinced I’d never see the end of. The ones that felt like even when the clock struck midnight, they would find a way to go on forever. I’m still standing, even when my body doesn’t want to; when my muscles ache, my head is foggy, and my dysfunctional nervous system would rather I lie in bed all day. Despite it all, I’m still standing. Maybe not better than I ever did, like the famous Elton John song goes, but standing, nevertheless.
Thank you to Dysautonomia International for the informative pictures, expending consistent effort to raise awareness for POTS and other forms of dysautonomia, and the resources it provides for those affected.
The dreaded question. The lethal question. The loaded emotional landmine that’s constantly strewn about. It’s asked at the grocery store, at your therapist’s office, when you bump into an old friend in the middle of a busy parking lot. Sometimes, it’s a question we’re ready for. We’ve come up with some clever, creative way to deflect what’s really going on inside, or we brace it like an aggressive bust of wind, brave and unnerved. Sometimes, we’re not so ready. It catches us off guard, sends daggers into fresh wounds, and adds another layer of confusion to our frayed, dismantled lives. “How are you” is a question with various layers, used in various situations, for various different reasons. If you’ve ever found yourself hating this question, then this post is for you.
I’ve been asked this question a lot this past year. Often from people who knew I was in the middle of a grueling, tedious diagnosis journey, but also from people who were completely unaware of the unnamed, internal battle that completely uprooted my life. I grew to loathe this question and dread those three words because I never knew the right way to respond. The people-pleaser in me was too scared to be frank about how absolutely not-fine I was, and then there were other variables such as who was asking, where we were, how much time we had to talk; I wasn’t going to unload my emotional baggage in the middle of the grocery store to a mom of an old classmate I hadn’t seen since elementary school. She had frozen peas in her cart. I had a racing heart rate and limited ability to stand. That was not the time to unpack the unraveling of my old life. That was not the time to be honest.
A lot of times, I lied about how I was doing out of the sole purpose of convenience. It’s easier to stay on the surface of feelings when time is running short, when schedules are packed and rigid, and diving down to the depths of our darkness is an activity we don’t have time for. Other times, I lied to avoid derailing the conversation, or making friends uneasy about how upset I really was. Many people don’t know what to say when the response to “How are you?” is anything less than “fine,” and I wanted to prevent the lengthy awkward pauses, the stammering and searching for words that come when people grow uncomfortable. I was tired of my reality making people uncomfortable. So at some point, I locked the truth away. I stuffed it into the bottom of a drawer like a ratty old t-shirt, unfit to wear in public.
Sometimes I did try to be honest. I tried to tell my friends and family how hard it was to be at home, debilitated and overwhelmbed by an illness that at this point, was still unnamed. I tried to tell them how envious I was of other people who were still at school, living the life I wanted, and how difficult it was to watch the world go on without me. Sometimes my candor would open up the conversation, allowing a deeper connection to take place between us. But many times, especially with young people, I found they would freeze up, starkly unequipped to deal with these kinds of heavy conversations. My young college friends offered support and encouragement in the ways they knew how, and while their kindness and compassion deeply touched me, they usually didn’t have the life experience to fully understand and many of them felt pressure to know the exact, right things to say.
I wish I would’ve told them that I never needed a perfect, comforting response. I wish I would’ve told them that it wasn’t advice or encouraging pinterest quotes I was looking for, but someone who would show up, who would weather the storms with me and speak honestly about what they couldn’t understand. I didn’t need my friend to be my therapist, I already had one of those and a great one, in fact. I didn’t need to be told “everything happens for a reason”, and I also didn’t need constant reassurance that everything was going to be okay. Somehow, I had quiet hope that everything would eventually work out (emphasis on eventually…), it was just buried underneath mountains of grief and hurt and anger and exhaustion. I didn’t need someone to fix my problems (though that would’ve been nice…), I just needed a friend to help me ride the waves.
Somewhere along the path of constant “How are you?” and “How have you been?” questions, I started to cling to the response of “hanging in there.” To me, it was like a neutral, meet-in-the-middle kind of answer; an optimistic reply that would assure my friends I wasn’t falling into a massive, black pit of despair. It wouldn’t cause the blunt discomfort the response, “absolutely, utterly terrible” would create, and it was also kind of halfway true, so it wouldn’t be considered a flat-out lie. And so it became my go-to. I used it at the grocery store, I used it on texts from friends at college, and I used it on distant family members, careful not to cause any unnecessary worry about my progressively worsening, undiagnosed medical condition. It was safe, it was easy, but it was actually still a lie. Looking back, I despise those three words now. I wasn’t “hanging in there,” I was hanging by a thread, and hardly, at that.
Picture of an old conversation via text, showcasing one of my classic “hanging in there” responses.
While I understand my motives and am aware of the sometimes necessary convenience of the typical “fine” response, I regret not being more honest when people asked me “How are you?” I used “hanging in there” like it was a synonym for “barely holding on.” I clung to the phrase like it was a state of being I could reach, if I just said it often enough. But “hanging in there” is not for when an illness uproots and derails your life. “Hanging in there” is for twiddling your thumbs as your dinner heats up, or waiting a week and a half for your online shopping order to be delivered. As much as I tried to deny it, “hanging in there” was a lie, and one I still regret to this day.
So how am I now? I’m a bit of a mix between restless and hopeful. Somewhere in between frustrated and okay. I jump between these like a ping pong ball, never quite landing in one, but not getting stuck in one either. I still haven’t mastered the loaded “How are you?” question, and I often find myself jumping to the “I’m good!” response a little too soon. But I’m learning. I’m making room for not being okay, and letting go of expectations of what that’s “supposed” to look like.
And what about you? Are you “fine?” Are you “hanging in there?” Or are you absolutely positively terrible, taking your days breath by breath and hour by hour? We’re living in unprecedented times, and that can bring unprecedented feelings. But I urge you to invite it all in, to reject the convenient, comfortable answers. I urge you to have those hard, heavy, honest conversations because frankly, now we’ve got nothin’ but time.
