Long COVID Changed Everything, and it's going to be okay.

Trigger warning: I talk about disability, mental health, pelvic health, and traumatic personal experience in this post.  It's important for me to share in this way, to spread understanding on the diverse ways Long COVID may be experienced.  However, if these subjects or levels of disclosure are triggering for you, I completely understand your decision to not read on.  

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This is my story about how Long COVID changed everything. 

Because I'm a medical professional, definitions are important to me.  Long COVID is defined as symptoms that take place, for no other reason, within 2-4 weeks after initial COVID-19 infection and last longer than three months.  The most common symptoms are fatigue, post-exertional malaise, flu-like symptoms, headache, nausea, heart palpitations, brain fog, and dysautonomia.  This definition was just recently developed by the World Health Organization. The condition certainly wasn't widely recognized back in July 2022 when my husband and I contracted COVID-19. 

Our bout with acute COVID that July was pretty mild, all things considered.  I posted on Facebook about the irony of our dishwasher being broken, with nobody able to fix it while we were in quarantine.   We had fevers and some spectacular sore throats.  But all told, it felt like a moderately bad flu.  Nothing unexpected.

Honestly at the time I welcomed the rest.  I had just finished a round of intensive therapy for clinical depression, which runs in our family.  I was also working my business at the same time, seeing 16-20 patients a week.  I was feeling bright and confident in the future as I loved my job and really felt I had arrived at a place of healing in my mind and body.  I was also tired and burnt out.  

After two weeks at home resting, I went back to work.  I had a weird nagging feeling I wasn't ready, but pushed it to the back of my mind, thinking I was just being lazy.  After just a few days I began to experience headaches and exhaustion after working with patients, which didn't feel normal. I heard it can take time to feel normal after having COVID, so I attributed it to that and carried on.  

Later that month I thought it would be smart to go to my 20th high school reunion.  It was an impulse decision I made in the early afternoon and was on the road an hour later.  I arrived just in time for the festivities in Sartell, Minnesota around 6 PM.  I had a lot of fun, and of course it was also super weird in all the ways high school reunions are.  But overall it made me recognize the confidence I had gained as an adult.  A very refreshing feeling. 

Once I got to the hotel that night, I proceeded to feel very ill. I laid in the hotel bed with a pounding headache and could barely stand.  I only had one beer, so it wasn't a hangover.  But I didn't eat dinner other than snacks, so maybe that?  Weirdly I also had an irritated bladder, and visited the bathroom several times over the night.  I drove home the next morning and collapsed in the living room in exhaustion.  On Monday I finally realized I had the symptoms of a UTI (which I'd never had before) and took a home test.   It was positive. I contacted my doctor and got some antibiotics, but was bedridden for for a week.  We had to switch antibiotics twice, and I never felt completely better.  As a pelvic floor physical therapist, I assumed I had the symptoms of interstitial cystitis, which essentially is bladder inflammation that can occur during periods of high stress or after a bladder infection.  I upped the amount of liquids I was drinking and went back to work. 

Thus began a cycle of working for a week or so, then experiencing all the same symptoms until I had to stay at home sick.  I continued to have trouble sleeping at night, sometimes waking up 10x to use the bathroom.  I couldn't sleep flat or my symptoms would be worse.  I felt tired all the time.  I probably went on antibiotics 4-6 times over the course of 8 months, even though all my urinalyses were negative or had trace results for bacteria.  My doctor and I both felt, well, what else could it be?  We kept with the treatment plan.

I started to feel really badly about my job.  I wasn't reliable in showing up for my patients, sometimes late canceling with an hour notice, due to becoming suddenly faint, or feverish, or having flank pain. Pretty much everything I had on my "to-do" list for the business fell by the wayside.  In conversation with my administrative assistant or with a patient, I'd suddenly forget what I was saying and would have to pause for 10-20 seconds to collect myself.  My hands would shake by the end of helping someone and I would try to hide the tremors.  Then I would go sit or lay down until my brain and body felt good enough to drive home.  Many times I questioned if I was safe to drive.  At night I would come straight home and collapse in the living room or in bed, unable to help my husband with house chores and feeling pretty ashamed of it too.  

The best analogy I can give you is it was like standing in a field, frozen, because these bright lights are coming your way and you don't know what they are.  Orb?  UFO?  Northern lights?  You can't move, even though you want to.  So you just do the best you can, holding your stance.  

I did the best I could until February 2023, when I broke down with my husband and told him, "I don't know what's wrong, but I can't work right now." The best guess I had was a depression relapse, which can be associated with pain and fatigue.  With the support of my psychotherapists I took four weeks off in the hopes the rest and therapy would help me reset.   And oh my gosh the rest felt so good.  But it was confusing for me. Yes, depression can be disabling.  But my symptoms didn't feel like depression.  Maybe I just was being lazy? No.  I liked my career.  I enjoyed being active.  Why couldn't I do those things?  What the heck? 

In March I slowly built my schedule back up to seeing patients regularly.  I also hired a therapist for the first time.  Things seemed on the up and up.  However within a couple weeks the nighttime exhaustion, headaches, and bladder problems returned.  I met with my doctor and we didn't have a good reason for what was happening.  Admittedly I wasn't forthright about the severity of my symptoms.  I just wanted to move on.  I wanted to carry on with the acceptance that for whatever reason this was the way my body would be, and I'd adapt.  In hindsight, I recognize how silly that thinking was.  

On a cool summer night in June, I woke up from a sound sleep due to a gnawing pain in my left side.  I had just started a new medication for high cholesterol, so I wrote it off to nausea side effects, changed my sleep position, and drifted back off.  About an hour later, I woke up with a start.  The pain was a persistent, aching, throbbing sensation in my left upper abdomen and flank.  It spread around my ribs, into my stomach, into my back.  It came in waves that stole my breath and would not allow me to lay down.  I searched my brain for what could possibly be happening.  Maybe it was food poisoning, or a stomach bug.  I reasoned the worst was probably almost over.  But the pain didn’t shift or move like a digestion issue.  It stayed up high, in my flank, in my back, stealing my breath.  As the night wore on and the symptoms continued, there was no denying it.  Something was very wrong.

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I feel a reasonable person, given those symptoms, would go to urgent care.  A reasonable person would also seek medical intervention months before the pain got this severe!  I am not one of those people.  Even though I am a medical provider, I come from a family with a long history of avoiding doctors.  It’s not out of a lack of trust – it’s more of this odd Northern Minnesotan attitude of “taking care of your own needs,” and “not being a pain to others,” come hell or high water.  It is so ingrained in us that I’ve had siblings walk around with medical issues for years before getting them checked out.  

The females in our family are especially dogged in the face of illness.  In the fall of 2021 and winter of 2022, my mother spectacularly walked around with advanced pneumonia, and without knowing how sick she was, drove 10 hours to visit me in Madison for a girls weekend.  By the time she arrived she could barely walk a block, and spent most of the visit resting and sleeping.  I told her she needed a doctor and she very characteristically brushed it off.  It wasn’t until returning home (how she made it, I don’t know), and struggling for another month, that she finally made an appointment.  Her lungs were so sick at that point, they were bright white on the x-ray.  The pulmonologist told her he couldn’t believe she was upright and she was a couple weeks away from complete respiratory failure.  Thankfully she’s a strong resilient woman, responded well to the treatments, and made a full recovery.  (Love you, Mom!)

There is a more personal reason why I doubted my symptoms.  All my life, I’ve known myself to be “one of those” patients.  I have a long history of major depression episodes, endometriosis, painful periods, anemia, as well as autoimmune thyroid issues.  I’m used to bouts of debilitating fatigue and unexplained pains.  I’ve been in doctor’s offices, and had the conversations about, “being one of the more sensitive ones” that “just has more severe symptoms than the average person.” Where there are no real medical answers other than to take your medicine, and take care of your mental health.  I took that advice very seriously and was proud of all the progress I had made over the years.  I did not want to admit that YET ANOTHER thing was wrong. 

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So here I was, at 4 AM, experiencing one of the worst body pains of my life.  You would think I’d learned by this point that sometimes, you just need to go to the doctor.  But I stayed put, willing myself to get better.  I had work that day at my physical therapy practice, patients who I really cared for, and a new therapist employee.  “I need to be reliable, dammit!” I thought.  The hours ticked on.  At 7 AM, I woke up my husband, telling him, “I’m really sick” in desperation.  He tried to rub my back, which just made it worse.  I would groan in pain and move his hand away.  At 8, I called my primary care doctor’s office and left a message.  At 9 I reluctantly canceled my work schedule.  At 10, my physical therapist brain thought “Maybe I should get up and go for a walk.” “Yeah, that’ll do it.” 

After a 5 minute walk, head pounding, nausea rolling through, leaning on my husband, I gave up.  “I think I need to go to urgent care. “ I whispered.  

This was the turning point in getting the medical care I needed.  Starting with an ER visit, where they very nicely and compassionately made sure I wasn't dying or had a kidney stone.   I had another visit with my primary care in July, where we discussed cancer, a heart problem, or a kidney problem.  I went through many diagnostics and checked those possibilities off the list.  Finally we saw a urologist and gynecologist who confirmed I had numerous fibroids and endometriosis, likely compressing my left urinary tract.  The theory was that the compression would worsen whenever I laid down, mimicking kidney stone symptoms.  The urologist also brought up the possibility of Long COVID (research shows it can affect the urinary tract), which was my first experience seriously considering the possibility.  Relieved to have an answer for the flank pain, I scheduled a hysterectomy.  

The  surgery went very well.  I strangely enjoyed the entire process, nerding out about the anesthesia and what it felt like to be monitored by nursing staff.  I hooted “gait belt, yeah!” the first time the nurses got me out of bed.  I never doubted the surgery would help at least some of my symptoms if not all.  And indeed, within a few days it was very clear the bladder irritation and flank pain was.... gone.  I finally was able to sleep through the night.  It seemed like the nightmare was over.  

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But, fibroids and a cranky uterus just didn't quite seem to explain everything that happened.  Why the headaches?  Why the extreme fatigue?  Was it sleep exhaustion?  That seemed possible.  At this point all of my providers suspected Long COVID, as it is known to worsen pelvic pain problems and cause urinary tract issues.  We all held the hope this wasn't the case, and I'd be back to normal.  I took my 10 weeks of medical leave very seriously, knowing I was not recovering just from a surgery but from over a year of being ill.    

Unfortunately, I did not recover.  In mid-December I attempted a very light return to work, spending a couple hours doing admin work at the office.  I also started to exercise, doing the prescribed routine from my physical therapist (yes, physical therapists go to physical therapy too).  Like clockwork, I crashed for a week.  No bladder problems. But the headache, the nausea, the tremors, the extreme exhaustion.  All were present.  

I tried again.  I had a weekend where I did house chores with my husband, then I saw one patient the next day.  I met with my employees.  I crashed soon after, with a fever, headache, nausea, and utter exhaustion that kept me in bed for three days. 

I tried again, performing a couple hours of admin work and also going to a friends house for dinner the next day.  And I crashed.   I was sick for a week. 

I finally began tracking my heart rate with a Garmin watch.  Since July of 2022 I had sensed my heart rate was abnormally high for me.  I was blown away to realize I was right.  Anytime I tried to do a task in a standing position, my heart rate would react like I was going for a brisk walk and it would stay that way.  If I lifted or carried things my heart rate would spike.  I would get lightheaded and nauseous, sometimes needing to quickly sit on the floor in order to feel better. 

Back at the doctors office, my primary care was very concerned and agreed at this point this was not normal post hysterectomy recovery. I was in fact dealing with Long COVID, and had been dealing with it now for one and a half years.  I started an autoimmune drug called "Low Dose Naltrexone."  I got a referral to see a provider who specializes in Long COVID at UW Health. 

This did not feel as hopeful as the fibroid diagnosis.  Right now there are no answers in exactly what Long COVID is, or how to treat it.  It seems to be a combination of an autoimmune disease as well as post-viral proteins/remnants that the body has a hard time cleaning up.  The researchers know it impacts almost all body systems.  And the consensus among the experts is that pushing through the symptoms not only will not work, but could creates more damage in your brain and body.   

It's been four months since the diagnosis and much has happened since then.  I did try for a while to get back into working as a therapist, or at least hiring/supervising therapy staff.  Unfortunately I was unable to do either due to the damage Long COVID wrought on my brain and body.  I'd done such fulfilling work in creating a healing place for people, that accepted all bodies and compassionately integrated the mental health and spiritual needs of people in pain. Closing my business was one of the hardest decisions I ever made.

My daily life is now very simple. I nap for two hours a day and sleep for 8-10 hours a night.  I can go for walks or go in the therapy pool but if I do anything more than short duration light intensity exercise.... I get sick.  My body won't let me drink alcohol or caffeine anymore which is a very weird feeling.  I wear compression leggings to manage my fatigue -- which is actually caused by POTS - Postural Orthostatic Tachycardia Syndrome -- a condition which Long COVID can trigger.  

I've spent a fair amount of time being just devastated.  What happened to happy go-lucky Autumn who loved to climb, hike, ski, and be with friends and family?  What happened to the physical therapist I had been? Will I ever be able to go back?    

Sometimes I get so sad about it, I just need to sit quietly with my husband next to me with his hand on my back.  

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This story does not have a happy ending, for those of you hoping I've found a miracle cure.  Sorry. The truth is the research shows I may not ever return to the way life was before.  What I can tell you is while I haven't been able to go back to my normal self, this journey has helped me grow in self compassion and acceptance in ways I never knew were possible.  I consider that a gift. 

I see my providers regularly now, including an occupational therapist and acupuncturist.  We have friends who help us with our house chores and meals since I'm not able to do those tasks right now.   I do have personal disability claims in progress, but it is exceedingly hard for anyone with Long COVID to get approved, even though it is considered a disability by the ADA. 

I have a little patio garden that I can work in for 20 minute periods.  I sit with friends. I color.  I read easy books.  My husband and I now drive to places in our neighborhood where I can walk a bit, then sit on a bench.  I tell people that I am "steeping," like tea leaves, in my life right now.  In its own way, that is a gift. 

And I'm starting this blog. At first I only reached out to close friends and family. But now it is clear to me that people need to know about Long COVID.  Telling my story helps that. Telling my story also makes me understand the big picture a bit better.  Standing in the field, with that bright light bearing down on me (maybe it's a UFO :) ), I can see a bit more clearly the actions that are available.   

If you've made it this far, thank you for reading. Please talk about Long COVID with your friends, your family, your coworkers, your providers. Up to 30% of the US population has experienced symptoms of Long COVID.  While most recover within a month or so, there are many like me who do not. We need more research. We need advocacy. We need to be visible. 

If you are struggling with a chronic condition or have Long COVID, please please know you are not alone.  It is not your fault. We all deserve good medical care. None of us deserve to have our livelihoods taken away. Reach out for support from your friends, your family, and your medical providers. Keep the people who help and understand close to you.   

Long COVID changes everything. And... it will be okay.