grievingmyself

[grievingmyself]

01 - The virus

I let my foul mouth show in the title of this new account. I thought about deleting it momentarily, "the sky isn't falling, but I sure as fuck will," but as I stretched my fingers toward the backspace button, I chuckled at it a little. It has been difficult lately to bring myself to laugh joyfully at much of anything, so it's staying. Excuse my language in advance, I am sure there will be more profanities to come.

I was healthy until just after my 28th birthday. When I blew out my birthday candles six months ago, chronic illness was definitely not what I wished for, but it's what I got. Fifteen days later, I woke up feeling off. I figured I hadn't gotten enough sleep and pushed through it, but as I sat at work speaking with my second client of the day, pain crept into my lower back. I began wiggling around in the chair, shifting my weight from one position to another, trying to ignore it and thinking to myself, "wow, this chair sucks," even though it was the same chair I had sat in for the prior 7 months since I was hired without issue. I finished up with the client and drove to my weekly therapy session with this horrific pulsating ache that clenched my lower back and hips gradually worsening. I could have broken the door to my therapist's office off of the hinges with how quickly I flung it open. I just wanted to lie down, so I sat on her couch, swung my feet up, and slid down flat. She asked if I was okay.

"My back is killing me for some reason."

I was no stranger to back pain. I have worked in retail where I've spent all day standing, and in offices where I've spent all day sitting, and both have caused me pain over time. My posture has historically been terrible and I don't rest enough. I thought this pain couldn't have been any different, but I was haunted by that off feeling I had experienced that morning. By the time my session with my therapist wrapped up, the pain was excruciating. I drove straight home and went to sleep. The next day, Saturday, August 24th, 2024, was the day I entered my own personal hell. I'm still living in it.

I don't know what compelled me to take a Covid test. I didn't have any respiratory symptoms, and overall, didn't feel much other than pain. The pain in my lower back had expanded overnight into a shooting, stabbing pain in the back left side of my neck, and more subtle aches across my entire body. I rummaged through the cabinet and pulled out our last Covid test.

Positive. Fuck.

I love my job. The only thing I could think about in that moment was texting my boss to let her know I was positive and would not be coming in on Monday. What I definitely was not thinking about in that moment was what the next six months of my life were going to look like. I just wanted to go to work.

The aches and pains lasted ten unbearable days managed as best as possible by Ibuprofen and a constant sleep state I induced with Nyquil. On the fifth day, I developed a cough, and a wheeze that made me sound like the clickers from The Last of Us. My doctor gave me another cough medication and inhaler that didn't help. It took until about day seven to get out of bed, have a cup of coffee, and eat a normal meal. I went back to work on day 10, and began a new semester of college on day 12.

I thought that everything was over.

Don't get me wrong, I didn't believe that I was exempt from the impact of Covid. When the pandemic started, I stayed in my home for 120 days. I was one of those people who ordered my groceries on Instacart and stood outside wiping the packaging down wearing a mask and gloves. I got the two initial vaccines, the first of which I drove an hour away to get so that I could receive it as quickly as possible. I got two boosters afterwards. More than a year after the pandemic began, my partner and I still wore masks in most spaces. Four years after the pandemic began, we still wore masks in crowded spaces. I deeply believed I could be impacted by this virus.

But not like this.

I thought that if I ever got Covid, I'd get a cough and some cold symptoms, recover from it, and move on with my life. After all, I was young and healthy. I had never caught anything more severe than a sniffle, and went to the doctor so infrequently that I didn't even bother to enroll in health insurance for many years. A week after returning to work, though, I sat at my desk white-knuckling the arm-rest of my chair as I desperately tried not to pass out in the middle of an intake assessment with a client. I'm an interning addiction counselor, by the way, and quite frankly, the clients I work with have been through enough already, so the last thing they need on their first day of substance use disorder treatment is to see the intake counselor fall to the ground behind her desk. I pushed through the rest of it, slowly stood up from my chair in a room I felt was spinning, and walked to the clinical director's office saying I was having a medical episode.

"Is it possible you're just having anxiety?" She asked me.

Fair question. I've been very open with my boss and coworkers about my autism diagnosis, PTSD, and other struggles. However, I had never experienced this before. I had no idea what was happening.

"I don't know."

I laid on the couch in her office for a while thinking I would calm down and it would go away. Then, I went back to mine, shut off the lights, curled up in the recliner my clients typically sit in, and called my partner. She insisted I go to the hospital, and next thing I knew, my supervisor was dropping me off in front of the ER, and I was crawling out of the car to a world that was still spinning beneath me.

The ER doctor said I had vertigo and needed to see an ENT. He handed me a prescription for Meclizine and sent me on my way. The following week, it happened again, but this time I was driving. I quickly pulled over into the parking lot of a bagel shop. Suddenly, the left side of my face and left arm were tingling, and my feet were numb. I began to feel foggy, like I couldn't think straight, and losing vision in my left eye. I called my partner who picked me up from the parking lot and took me back to the ER. While there, the back left side of my neck began to hurt. This ER doctor told me it was vertigo, that I needed to see an ENT, and that the tingling and numbness were merely anxiety. She gave me an Ativan, and sent me home. I visited the ER two more times in October, with the neck pain, dizziness, cough, wheeze, and tingling down my left side severely intensifying. I had purchased a cane to help with my balance because I became fearful of falling. My boss had swapped out my chair at work for one more comfortable because sitting worsened my pain. My partner sat by my side at each ER visit, begging for an answer that I was too tired to beg for as the word "anxiety" continued to be tossed around the room. I had some relief in November. I thought it was finally over.

Then, it all came crashing down again.

In early December, I experienced a major stressor and trauma trigger. A conflict broke out between myself and my mother that ultimately led to us ceasing contact. Within days, I was in some of the worst pain I had ever had in my life. Not only did the neck pain return so intensely I couldn't handle it, but the dizziness went from a weekly problem to an every-couple-days problem. My boss replaced my chair again, and I tried anything I could to manage. I returned to the ER when the fatigue and brain fog joined the party again on top of it. The ER was packed. It was so packed that they had run out of space and were taking people back for testing and consultation and spitting them back out in the ER waiting room. This doctor was different. He believed me. That was the day I got my first CT scan of my head and neck, along with repeated bloodwork, and what had been several chest x-rays and EKGs. All of the results were normal. I viewed them on the hospital's patient portal, took a deep sigh, and went home. On the way home, the doctor called looking for me. He recommended I get a full workup for multiple sclerosis.

I said thank you and hung up the phone.

"What did he say?" My partner asked from the driver's seat.

"Nothing, just that the tests were normal," I replied to my wonderfully supportive partner who was diagnosed with multiple sclerosis in April 2024 after her first flare of symptoms following contracting Covid herself.

Things kept going from bad to worse. Next, I had three days of intense pain in both legs, followed by seven straight days of dizziness and neck pain, followed by weakness and pain in my left leg causing me to walk with the cane daily, followed by muscle spasms in both legs, followed by significant loss of vision and double-vision in my right eye, and while sitting in the ER begging for help, the pain in my lower back from the very beginning of the virus returned, radiating down to my tailbone and around my hips. More CTs, x-rays, and EKGs later, my results came back normal again.

On January 22, 2025, the weakness in my left side moved up to my arm and turned to shooting pain and shortness of breath. The dizziness persisted. Again, I was in the middle of an intake I insisted on finishing to avoid sparking fear for the client. I got up, walked to my boss' office, and ended up in an ambulance where I could not even remember my social security number.

Can you guess what happened next?

The tests were all normal.

Now, the dizziness continues. The neck pain continues. The tingling and numbness and weakness continues. I still have a wheeze many nights and sometimes have hours-long coughing fits. The lower back pain didn't go away after returning in late December. It rages daily at the back of my pelvis and through my tailbone.

It hurts to sit. It hurts to stand. It hurts to lie down. It hurts to move.

Everything hurts all of the time.

I have an ENT, a neurologist, a pulmonologist, a rheumatologist, a cardiologist, an OBGYN, a vascular specialist, and more.

Now, I wait on insurance authorizations for further testing. Now, I wait for something.

For anything.