My One Year Anniversary with Covid.
365 days of questions and self care.
Exactly one year ago today I was in my kitchen making dinner when my body started to feel like it was shutting down. There was a sudden and severe wave of fatigue. My body started to pulse with pain like pushing down on a bruise, but from the inside out with no provocation. It went off like sensory alarms in my body, lighting up in my thigh, then my arm, next my chest.
It was the chest pain that didn’t dim which began to scare me. I was fearful for what it means to have a medical emergency in a country that was preparing for a complete shut down. “The next Italy,” they were saying on the news. We were still processing what the current Italy was. What any of it was.
I had gone running on March 10th in Retiro Park, a cloudy but warmish day in Madrid, Spain. There was a faint promise of spring in the air. I imagined another year, my fourth one living abroad, with runs and picnics in the park. A far cry from the Chicago winters I had endured prior to my move, those chilling months that extended some years well into May. Spring is my favorite season, and I joyfully stopped throughout my run to photograph the blooming magnolias that seemed to appear overnight.
Later at home when my body started aching, I thought, how ridiculous that I am so out of shape!, but having swapped jogging in the park with bikram yoga and the elliptical that winter, I thought maybe a break from my usual routine caused unused muscles to cry out for stretching. Tomorrow will be better.
When I sat down to dinner with my best friend and boyfriend, I could’ve fallen asleep in the salad. We talked about Covid, laughing that me not feeling well might be the virus everyone was freaking out about. We talked about the schools closing as I started to cough. I took everyone’s temperature to put our minds at ease. All good, I said.
The next day I woke up with the same symptoms plus a sore throat, deeper cough and narly headache that amplified with even the slightest movement. That pulsing in my body was now baked into my head. There was a thunderous throbbing, unfamiliar and almost audible, so painful it felt like it could make my skull crack. I couldn’t lift my head from the pillow that day and slept 24 hours through to Thursday.
On March 12th I started having chest pain in my sternum area. By that point there was a hotline to call where no one would answer, inundated with calls, I gave up after a few hours. The message would have been to stay home and nothing more to offer at that time I was willing to bet. The virus was sweeping invisibly through a country preparing to “lock down”, everyone uncertain of what that meant. Aisles in grocery stores were emptying. Men in white hazmat suits were cleaning the streets outside my apartment. There was a lot of information about cruise ships on tv, though very little about the virus itself.
I was more concerned with the chest pain than other symptoms. At the time, only fever, mucus, and exposure were indicators of having the virus, and qualifiers for being tested. The day after my chest pain started, we learned my boyfriend’s brother had tested positive in Portugal where he lives.
We had spent the weekend prior together, celebrating mine and my boyfriend’s birthdays. His only symptom was a high fever, something I never had. Out all weekend, dining in the charming and famously small eateries of Spain, dancing to live flamenco in a crowded bar, and embracing like children without a second thought to germs. We were practically high fiving the virus all over town, ignoring months of warnings, just like most everyone else in Madrid. We passed through the Women’s March on the 9th, crowds “scaled back” due to Covid, still hosting tens of thousands in the streets of the city.
To me, there was no doubt that my body was fighting Covid, but at work, and in the world at large, my body pain was a story, a curiosity more than a reality. It was something to be questioned and feared. I’ve said many times this year that no one has navigated a pandemic before. For this, I have made a great effort to be forgiving of many interactions that left me feeling hollowed, isolated, falling silent, and distrusting. Relationships that have wilted and waned are now celebrated reminders of what friendship and love are, and are most certainly not.
I broke up with my boyfriend, asked him to move out two days after falling ill, and spent the next two months of lockdown alone, experimenting with faith, something I didn’t draw from so much in life and am still learning to hone. I would wake up in the early morning with a deeper chest pain. It felt like a cold wind whipping through an open wound. I would call my friend in Chicago crying, certain that I was dying. Talk to me, I’m scared. He would talk to me sometimes for an hour while I drank a pot of tea to help me fall back asleep. He made me laugh. I felt less alone.
When the call ended, the only sound I heard were ambulance sirens going off, too many in succession. In the evening there was the clapping for essential workers from the terraces, mine from a little sunroof where I’d peek my head out and lift my arms up like in tree pose, rooting myself in the experience, creating energy as my hands thanked those that were, as I often would remind myself, suffering more.
I was lucky, I told myself. I cried every night for a month during clapping in the evenings. I would imagine what it would be to go home from a long day working in a hospital. Those people who needed a hug as much as I did, isolating in small rooms and apartments, to save lives everyday in a surreal and chaotic environment.
It has been a cruel reality for everyone this year. At the time clapping was an event to interrupt my lonely and frightening days. I had somewhere to be at 8 PM. I was at my window or sunroof, connecting to the communal experience of gratitude. I let my emotions flow and felt them strongly. Sometimes I was choked up, and other times my heart beat faster listening to the neighborhood echo with applause for essential workers. Sometimes my downstairs neighbor would shout from his window, Viva España! This either made me laugh or cry depending on the day.
I only told a few family members what I had been experiencing because Madrid was the focus on international news at the time, and I didn’t want to cause worry. The news was scary enough and my situation wouldn’t improve with their knowledge. No one would know what to say, or be able to offer any relief. Instead I decided to manage what I could control amidst the quiet chaos. It was all too much.
I started to go to bed at 10pm, stopped drinking, cut out sugar, processed foods, upped my vitamins to an impressive amount. Rather than suffer from the common symptom of the loss of taste smell and taste, I had a heightened contempt for the smell of meat. It made me feel queasy, so giving it up was stress free and I felt like I had arrived in the champions league of ethical consumption. I had finally gone from an 80% gluten free healthy girl diet, to full throttle pescatarian, immune boosting wellness ninja with plan of action.
This was a major achievement for me, an aspiring and struggling health nut with an overwhelming love of all food. It was amazing to discover that chronic pain, quarantine, and a global pandemic were the cocktail for success to commit to healthy eating. Everyday I woke up early to stretch, make breakfast, do breathing exercises, and sometimes when I felt really scared, I would record myself talking about my experience and watch it later to process my emotions, recalibrate, and lighten the load before I started my day. I call it free therapy.
In May, the city allowed us out for walks within specific hours. The green of the trees on Paseo de Prado delighted me. It was an absolute feeling of land sickness, almost a dizzying joy to walk outside and see other people jogging, walking, existing outdoors with shielded faces and all. The sun was bright and everything felt like a dream, with an otherworldly newness. As I came up a slight hill in a very flat city, I felt my breath hit a ceiling and then a floor when I exhaled. Something had changed, something I did not want to confront.
In March I had spoken with an ER doctor on a phone call. He told me chest pain is common for people who have had Covid, but to come in if you have shortness of breath. On the third day of being let out for walks, I had what I now understand to have been an asthma attack. It would be 355 days from my first Covid symptoms when I would have this diagnosis.
Up until ten days ago, I would stop and sit on benches like an old woman to catch my breath, contemplating death for the first time in my life, with an unknowable proximity. Sometimes I would shed a few tears while I sat there, not sure if I would be able to get up again. My pace and my speech slowed, running out of breath even when I spoke. A thousand new and interesting moments were presenting themselves to me each day, and self prescribed science experiments and strategies to overcome them.
I had gone for a longer walk that morning in May to push my body back into what I thought was out of shape. When I got home the ceiling and floor sensation in my chest had amplified. I could only sip the air like drinking liquid through a needle sized hole.
There was no wheezing like I had seen with other people who had asthma, so it didn’t even occur to me that it might be that. It felt more sinister because my body had been fighting a respiratory virus, I was vulnerable, and answers were hard to come by. My experience with what is called air hunger felt like less space for my breath to move like it had previously, and a sharp pain and pressure that I was all too familiar with.
That morning I called my insurance provider crying. I didn’t want to go to the hospital. I cried, I pleaded, please no is there a regular appointment I could have now instead? I don’t know what I expected for them to do. I wanted there to be someone by my side to go with me, hold my hand, help me down the stairs that exhausted me whether it was two flights up or down.
I wanted them to stay on the phone until it stopped hurting and I could breathe normal again, then to be able to hang up and sit at my desk to work. On the other end of the line I was met with kindness, and even a comforting laugh, like a family member might who knows something you don’t as they observe you overreact, It’s not like before at the hospitals they said, there is room for you.
When the nurse in the ER asked how long I’ve had chest pain and I told her two months, she looked at me disapproving, dos meses?! she asked, shocked, as if the entire world hadn’t shifted into what it now was, restricted and inaccessible. It felt human to be met with recognition of the grave absurdity of my situation.
I had been practicing that illusive faith I was getting to know instead of doing what would have been normal, get medical treatment. I had decided that I would be ok because it was the best and only choice. Some people never had access to healthcare in their life, I often thought in quarantine, how horrible to accept that as a life sentence.
I got a set of xrays from the ER doctor and was told I have Chostocondritis, an inflammation of the cartilage between the ribs that mimics the pain of a heart attack. That explains a lot, I said to the doctor. He told me to take Ibuprofen and it should go away on its own. I had been taking that and similar over the counter drugs for two months so it wasn’t a major relief. It felt like I was being told to treat a broken leg with a band aid. I also had by that time some information on people who were experiencing the same symptoms, echoes of what recovery sometimes entailed, post viral inflammation, not enough research, long haul.
There was never a single day where I doubted my own experience. I’ve read about many people who have felt tortured by doubt cast on to them by others, questioning their own minds, feeling gaslighted, are you sure it’s not “just” anxiety? or, you’re imaging it, “just” relax, we’re all stressed right now. When people “just” your experience, it carries its own trauma, trivializing what is deeply painful and real.
I had suffered from panic attacks 20 years ago, familiar with what I was being dismissed as struggling with. I have learned cognitive behavioral therapy, practice meditation, am a student of stoicism, and knew my body was speaking to me in a foreign language. I will never fully understand what people gain from denying another’s suffering, or reframing it as something they are comfortable with. Maybe it’s just that, a way to comfort themselves.
Mental health is a crucial part of the journey, and not something to be flippant about. I hope the landscape of care for mental health is transformed and our relationship with its ever presence is destigmatized and addressed. I expect this will be a positive outcome of the crisis we’ve seen this last year. Though it will take longer than my own journey toward recovery, of that I’m certain.
When I learned more about the actual condition at home, I was distraught to find that Costochondritis is a diagnosis of elimination. It was not a diagnosis determined through by doing an x ray and pushing on the ribs like the doctor had done. There would need to be many more tests, an approach that no longer existed as part of the scientific process. When at home, the pain in rooms alone called out again. I created distractions for myself, making videos for friends and connecting on Zoom more than I had the energy for.
It was hard to describe what I felt, so I didn’t. If I had to say, it would be something like glass shattering across the top of my chest, or broken bones healing in limbo. I could understand how those descriptions could be taken as melodrama, but they are honest. I read online about a 50 year old man who had been to the hospital three times in a month due to Costochondritis. Certain he was experiencing a heart attack, he thanked his family and the healthcare workers who cared for him. I thanked myself for being brave and thought about what treat I would give myself later for fulfilling my civic duty of staying at home for two months, with what did really feel like daily heart attacks, just riding them out like it was a prick from a splinter.
When I got back home from the hospital, I wrote a note and taped it on top of my desk with my medical history and the progression of my symptoms over the last two months. I had unceremoniously prepared what I thought would be helpful in case my breathing got worse. There seemed to be some glitch in my system. I imagined that morning that my lungs might close like elevator doors shutting mechanically, a feeling like the cold metallic sound of the curtains being drawn aside the bed in the ER that I had heard earlier, separating me from an elderly man who was calling out feabley for the nurse.
In the hospital they had told me that the inflammation can make it difficult to breathe and that was normal. I had heart palpitations, the body aches would return as whispers of the pain they were initially, almost taunting me. I could feel dizzy and fatigued suddenly, then I’d be totally myself only with the constant chest pain.
I’m still here, I would remind myself on really bad days. I had helped the old man call for the nurse in the hospital. If what I experienced that morning happened to me again but more severely, there would at least be a note, in case no one would be there to help me call out for help.
I’ve had a frustrating run of doctor’s visits, many times met with doubt, bounced from one specialty only to be told the referring specialty is the correct one, waiting 4 weeks to schedule the original appointment again. It’s not Costochondritis, two of them said. Well did you have a Covid test?, some would ask.
Tests were as impossible to come by as toilet paper at the time I became sick. Many were false positives or negatives anyway, but there would be nothing gained from these explanations. I wanted help for the now, the lingering fatigue, headaches, sips of air, and chest “discomfort” as it was glibly described. I understood it was too soon to fully understand what I was experiencing, so instead I joined support groups, slowly doing what I could with appointments in a healthcare system that had been shaken terribly.
When I was met with any doubts, I would remind the doctor, in slow Spanish, like the podcast I listened to daily when I first moved here, You don’t know me, so please let me explain. I do not want to be here. This is not fun for me. The last place I want to be is in a clinic or hospital in a waiting room with sick people, a migraine and harsh lighting during a pandemic, to see you for two minutes and be dismissed. What would you do if I were your daughter? Lets start there, I told one doctor.
He was writing notes on a piece of paper and didn’t ask about or pull up my medical history online. There was no computer. There was just a man in a lab coat behind a desk surrounded by books. It felt like he was waiting for me to say a few words and give me a rehearsed speech about ibuprofen and rest. Standing up to push my chest like the ER doctor had, he in 30 seconds determined it’s not Chosto, but offered no other conclusion or referral. I learned how to advocate for myself. My Spanish was good, but I was exhausted and frustrated, so I must have in some tone or foreign attribute at times incited doubts.
It was what I had heard people experience within certain communities in the US, not being taken seriously. It was also not an uncommon experience for many who were going through similar long term symptoms. I had normal MRIs, Cat Scans, blood tests, and two negative asthma tests, just like many other people.
I was beginning to think I would just have to wait it out, having read in post-Covid forums that many had fully recovered with the treatment plan of time, choosing to ignore those posts about aneurysms and blood clots.
I went to see a good pulmonologist in November after a string of other visits, and just last week, on a third asthma test since July, I learned that I have severe asthma. This time the test was with Metacolina, a medicine that narrows your airways to determine the bronchial capacity. They finally pulled out the big guns. Someone had decided to believe me.
The medication is given in doses, and after each dose is inhaled, you breathe into a spirometry and the nurse guides you to inhale and blow, coge aire, más!, más!, más! Ahora, her voice getting louder, sople! sople! sople!, she would repeat each time encouragingly. By the third dose, my breath became like the sips of air in May, and periodically over the ten months since then, when I would walk up a hill or lift a heavy object. I could only cough out and sip.
The nurse ran back in the room with a large tube of albuterol. I had to hold it with both my hands, breathe in and out, wait. She told me she had never seen it go so low before, you scared me she said, visibly shaken asking me to wait while she called in the doctor.
I sat there, with the same stoic silence that had gotten me through the year. I knew that I would be ok because I had made it that far. I waited twenty minutes outside the room without my mask, until my breathing became what was the new normal, not normal at all, but better than before. I cried in the waiting room, keeping my mask on so no one could see. I was in the place where people either die or get better. I felt like I was somewhere in between. Focused on expanding my chest to breathe, among other clumsy techniques I had learned online, I was always committed to moving toward getting better
I went home without an inhaler and was told I’d have to wait to see the referring doctor for medicine. The nurse reassured me empathetically that I would be ok, I have asthma too and I go running and do everything, she said kindly. I could have burst into tears from having witness to what was a long, lonely and deeply personal year of suffering.
It was the first time I had experienced such strong breathlessness with someone by my side to react and offer some kind of informed support. Gracias, de verdad, muchas gracias, I said to her instead. I was relieved that there was now a test result, a diagnosis that was treatable for that “something sinister”, a muted and somewhat sarcastic hurray for asthma.
Ten days after the metacolina test, and 364 days since covid knocked me on my ass, I got a prescription for an inhaler and anti inflammatories. I started to cry in the doctor’s office yesterday. Up until that point I had only cried quietly and comfortably behind the shield of my mask, at home, or in a few waiting rooms and at my first CT Scan.
I needed to be strong and unemotional at doctor’s appointments, too difficult to come by to mess up by crying and be handed over a quick diagnosis of anxiety. I had to keep it together every visit. Why are you crying? the doctor asked me yesterday, genuinely shocked, you should be happy you know now what it is. I told him it’s the third time I’ve done a test for asthma, it’s been almost one year of doctor and hospital visits, I’ve changed my life radically, I’m still in pain everyday, and you’ve just told me asthma is for life.
My therapist told me last week that many doctors will see you as an organism, don’t expect much more. I didn’t expect anything. I just needed to let myself cry in his office. He had been writing tests for me now for four months and could have been dismissive, disbelieving, and given me the run around. He had believed me, was kind, thorough, and was now writing me a concrete treatment plan. This was the real reason I was crying. It has meant so much to be heard.
He listened to me without my having to muster an Oscar award winning speech out of weak breath and exhaustion. I didn’t have to build a case for my suffering like I was going to court, furiously googling vocabulary in Spanish that hadn’t come up before. There have been other doctors with great compassion and honesty, that don’t pretend to know and don’t give answers that are not available. I’ve learned there are pockets of good air to draw from. If I had told the doctor how much it meant to me I would have started sobbing. If it weren’t for Covid safety regulations or or were it not culturally tone deaf to do so, I would have given my neumologist a great big hug. I gave him the logical answer, not the emotional one. I took a deep breath, felt the familiar pang it incites, and thanked him.
Today is March 10th 2021, and I get to start a week of treatment for my asthma before I go back for a follow up. One full cycle around the sun until finally finding light in a dark place. Doctor’s appointments are easier to come by now. I have a strong support system and moved in with roommates, no longer glamorizing the luxury of having my own apartment. Spring is blooming in plain sight. I laugh everyday and focus even more vigilantly on what I can control. I now think of March 10, 2020 as the beginning of recovery in so many aspects of my life. One day at a time I made it to the anniversary of my Covid story.
This year I’ve read articles about people with similar Covid journeys, of frustrations, pain, courage. They always made me weep. I’ve found the most support from those same people in online forums, and a small group of trusted friends and family.
I’ve been met with other challenges this year, like many people, but snowballs melt. What has become obvious to me is that through sharing we can heal. My most real and healing moments have come through the borrowed strength from other people’s support and stories. I plan to continue writing and sharing about my journey of recovery, resilience, and what faith has meant to me through this year of discovery.
I have been nearly just as scared to hit the publish button on this article as I have been to confront much of what I have had to this year with my health. One of the greatest gifts has been the calling to write, connect with and cherish people in my life, to take more chances. One thing for certain is that I will one day actually stop breathing, and so will you, as the mortal humans we are (I know it’s tragic), but I have many other stories worth telling, that I now, thanks to reflections on my Covid anniversary, have found the courage to tell.