A blog about my experience with chronic illness and finding hope in the darkest days

Month: June 2020

In My Dreams

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. 

Shivering in the Shower: Girl vs Heat Intolerance

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.

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. 

Powered by WordPress & Theme by Anders Norén