A firsthand account of living with post-COVID syndrome. Please read until the end!
November 12th: 3:35 AM
Swimming in an ocean, maybe drifting across the top of the water, I see colors and faces and places I will soon forget. My feet must be propelling me forward as blue and green tides encircle me--I see my dad on the horizon and continue to float toward him, trying to move faster, but slowed by the stuck-in-muck phenomenon we find in our dreams--the muck that must mean more when we are awake. So I drift, drift, drift toward my dad in some form of time...and the blue and green begin to cloud heavier around my body. The haziness is dazing and I realize I am breathing as I choke on the dense blue fog and green seaweed that begins to climb around my chest, down my throat. I am coughing, drifting, choking ... coughing, drifting, choking...I am faltering, images doubling, in and out of focus, dad, help--
I wake up in the pitch black gagging and coughing. Gasping, I cannot get a breath in as I try to cough out whatever is strangling me. I'm dizzy and I find that even darkness can spin as I begin to shake my husband awake. He is deep asleep, but hearing my futile cough he jumps out of bed and runs to the bathroom, I think. I lie on my side, trying to stay on top of the pile of pillows I sleep on to elevate my lungs every night, just in case. Just in case this happens. Just in case it matters. It hasn't yet.
I am losing focus, but I feel the plastic chamber that attaches to my rescue inhaler shoved into my hands, hands over top of mine bringing it to my mouth. I never needed a rescue inhaler before this year. Pushing the button to release medicine I try to breathe it in and cough it all right back into the chamber. My husband hits my back the way he hates to. It doesn't hurt, but we are both already raw from the routine of this process. We repeat the procedure several times until I can hold some small amount in my lungs for a few seconds. Gradually, I am able to breathe in a full dose and hold it as our eyes meet in the room lit by the light spilling out of the bathroom. I glance out the window and see that the sun has begun to come up already and know we are both in for a long, sleep-deprived day.
November 14th: 4:45 PM
The ceiling fan is spinning above my head...sometimes I am able to follow the rotation of one blade of the fan and it looks like it changes the speed of the whole thing. It is as if the blade is being dragged around and around at a speed determined by some external force. I call out for my husband for the seventh time--he is on the other side of the house, but I know he will come find me eventually.
My body is still slicked in water and sweat--it has been for 48 hours. My muscles are cramping and so very heavy. I managed to turn the shower knob, sit in the shower, let the water fall and roll over my body. Using shampoo was just too hard today--too heavy to lift. I think back to the 65-lbs I deadlifted last week and fight back a pity party as more water gathers in the corners of my eyes. I am grateful I "survived" my first exposure to COVID-19. I do not need to be grateful for the after-effects.
So the shampoo was too hard today, maybe later this week I can try again, or after this flare is over, whenever that is or if that is... Goosebumps begin to break out on my arms and legs as I fight the cold from lying in a towel on the bed with the fan at full blast above me. My hair clings cold and heavy to my scalp and is plastered like frigid paint brush strokes across my shoulders and back as I wait.
My kind husband of just a year comes after the ceiling fan and I have had a good while to watch each other--determine the others unchosen patterns. I use muscles that don't feel like they should be muscles to smile as he walks in. I am not going to cry. I know he already knows what I need, but he respectfully waits for me to ask even if it feels like a facsimile of autonomy.
"I need some help getting dressed."
November 14th: 6:00 PM
"Do you know what you want?"
No. I don't know what I want. I never do, because nothing tastes right. I am not a picky eater. Nothing tastes like it used to and nothing is improved by its new taste. What I want is simple: my sense of taste and a Diet Sprite but it still tastes like soap.
It has tasted like soap for six months.
I had my first exposure and sickness somewhere between eight and nine months ago. Each flare of this insidious syndrome is different. It's the tour of a band I despise, always leaving a game-time decision whether to play their greatest hits: coughing, dropping oxygen, fever, nausea; or promote a new album. Some of the new albums include hits such as: sore throat, total laryngitis, headaches, abdominal cramping and GI symptoms, chest pain with wheezing, or congestion leading to an encore of sinus infection. But no matter what, regardless of whether I am in a current flare or not, I cannot shake the altered sense of taste, the excruciating muscle aches, the shortness of breath, and the fatigue. Those have been here since late March/early April and do not appear to be going anywhere fast.
"Diet Sprite, please."
November 19th: 4:30 PM
I can feel my temper rising as I try to sign the word again in American Sign Language while my husband reads my lips and watches what I am trying to say. He apologizes again. He says he can see my effort. I want to tell him to stop apologizing. I want to tell him that I can see his effort. That I am not mad at him.
I was able to talk very quietly until today even though it hurt like hell. Today, I cannot produce any sound and my hands are starting to give in to muscle spasms and aches from trying to communicate. This was just a tickle in the back of my throat. Now I am icing my hands when not using them to communicate to try to keep them functional. I am terrified of being locked into my own body. My e-visit with my doctor earlier this week was so positive as I had shaken the fever.
We lock eyes and both of us nod that we are going to give this one more try. I start trying to "finger spell" each letter while mouthing the words. He focuses intently and I see the sorrow pulling at the corners of his face. I make the motion to wipe the slate clean and start again.
"I, oh okay, you. Yes you, got it."
I nod.
"Gave? Had? I...have? Okay, gave. Sorry...have? Have. Okay, next."
I rub my hands while I nod, trying not to show how much this is costing.
"A. Okay, just 'a.'" I keep trying to signal a new word and plunge past the first letter also being an "a." This time I mouth the letters and make the spaces clear by waiting in between each word.
"Pain...paint...appointment, oh! You have an appointment?"
I nod and make the sign for "yes."
He bites his lip then nods fervently.
"Oh! You have an appointment with your doctor this afternoon and you want me to sit in on it to help talk for you. Good I am so glad she--oh okay more, yup. Go ahead."
November 22nd: 9:15 AM
My eyes open, swollen against the light filtering into the bedroom. My mouth feels and tastes like an expired bag cotton candy. I know my blood sugar is high, very high, from the taste and the pain in my stomach signaling ketones (concentration of sugar in the blood so high that it makes the pH acidic) from the course of steroids I am on once again to open my airways and reduce the total body inflammation. It has been three days since I have eaten something with sugar or more than four carbohydrates in it.
My husband helps me out of bed and I am able to go to the bathroom to test the level of ketones I have. My diabetes devices will not allow me to put in more insulin because I am already at a dangerously high level of insulin for a normal circumstance. Oral diabetic medication usually reserved for Type 2 diabetes is helping a little bit to make the insulin more efficient.
As we pull all my new daily medications together for the morning, I wonder offhand if today is going to be a day that I go to the ER. The thought flits in an out of my head during the day as my pulse jumps then normalizes. As I drink the 300 ounces of fluids. As we watch my O2 hover between 92-94%. As I force myself to stay propped up on the couch while we watch whatever it is we watched. As my fever vacillates between 99.4-100.8
November 29th: 4:00 PM
As I sit here typing, my voice has mostly returned after my most recent course of steroids. My body is another ten pounds heavier. My fever is gone right now, but could come back any hour--I know that. I am exhausted and my muscles ache, but the inhaler is making it more comfortable to breathe how I used to breathe. My primary care doctor is in communication with a pulmonologist--a doctor I never before needed. My ECHO came back and I do not have the COVID-induced heart failure my doctor was concerned I might have as so many recovering millennials do right now with my symptoms of this virus. I am fortunate and frustrated. These few examples of a "moment-in-the-life" are my everyday. My husband's everyday. My family's everyday.
COVID-19 is not flu--that goes without saying.
COVID-19 is not a condition that requires you to simply quarantine or isolate for 10-14 days.
COVID-19 casualties and "acceptable losses" are not limited to the deceased.
My first symptoms began in late March/early April nine months ago. Since then, I have had ten "flare-ups" of my symptoms which have lasted in duration from 3 days to 3 1/2 weeks. These flares have ranged in severity from recovering at home, in bed, away from others monitoring my own oxygen levels and other vitals to a five day hospital admission that required four days of oxygen therapy. I have been on six courses of steroids ranging from prednisone to a medrol-pack for courses lasting seven days up to 29 days.
Secondarily, I have fought through several health conditions brought on by COVID-19. I have been on five courses of antibiotics for different types of infections in different parts of my body. Both of my lungs partially collapsed and I developed pneumonia. Two of my ribs fractured from the persistent coughing. Blood sugars have been near impossible to manage even with the best technology. Speaking is no longer taken for granted as my voice can be here one day and gone the next. My 5'5 frame has taken on the burden of another 35 pounds of steroid-induced weight. The examples go on and on.
We have no idea how long I will continue to be affected by this virus, but it is terrifying and unpredictable. It makes managing all of my other conditions that much harder. People like me were initially grouped into a category called "long-haulers." As more and more of us have emerged, awareness is slowly starting to spread.
Now we all have a new line in our already towering medical charts reading: "post-COVID syndrome."
With how novel this virus is, our providers do not know what this means for us. I pray that future ECHOs of my heart continue to look good. I pray that someday my sense of taste is restored. I pray that I do not continue to need such high doses of steroids and antibiotics to breathe.
I will continue to be my best self for myself: exercising as my body allows, eating to nourish , communicating closely with my doctor, and believing that there will be an end date to this thing. Until then, I ask that you share these very few snapshots of what it can mean to be a living casualty of this virus as a 28-year-old active, healthy, adult woman. I share these stories so that we can all continue to support one another, lift each other up, and do our part to quell the fallout from this insidious condition. We are better together and armed with as much information as we can get. Let's go.
Prepare, don't panic,
-Allison
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