On the one year anniversary of my life being turned upside down by COVID-19, I decided to share my story. I hope to give fellow long haulers comfort in knowing they’re not alone. I also want to help people understand what we’re going through. At the time of this writing around 1/3 of COVID survivors experience varying degrees of lingering symptoms, which amounts to more than 8 million people in the US alone. This is just one of those stories.
The Battle Begins
At the time I got sick, I was 37 years old and the only health issue I had was a lingering back injury. When I heard about the new virus that seemed to only attack the sick and elderly I didn’t consider it a threat to me. I’ve never been so wrong.
Early March 2020 the virus was just starting to creep into SE Pennsylvania. Lucky me, I caught it right away. My symptoms started off with a mild fever, fatigue, body aches and getting slightly winded doing minor tasks. It wasn’t until I came down off a little 5’-6’ ladder and almost blacked out that I seriously considered I may have COVID-19. I went to the break room and sat down. At which point I tried to take a deep breath and realized it actually hurt to do. So when I got home I called my doctor. He told me to quarantine myself immediately.
At home my symptoms quickly progressed. Taking a hot shower felt like drowning. Walking up a single flight of stairs took my breath away. I became incredibly fatigued doing nothing. But the pain in my lungs was the worst part. Every. Single. Breath. became an agonizing chore.
At the height of my illness the pain in my lungs turned to burning and I could only take shallow breaths. While lying completely still in bed I would get intense heart palpitations. It felt like my heart would turn into a bird and try to flutter out of my chest. I also became incredibly weak. My body felt like it turned to stone. It took energy I did not have just to move a single arm, leg or my head. It took every last bit of strength and willpower I had to get up and walk 20’ to the bathroom. Afterwards I would collapse back down onto my bed and pass out again.
For anyone who still thinks it’s “just the flu” I can assure you it is not even close. I’ve had too many colds, flus and viruses to keep track of. I’ve dealt with food poisoning and even had my appendix removed when it was on the verge of rupturing. I’ve never legitimately thought I might die until I caught COVID-19.
As quickly as the most intense symptoms came on they seemed to dissipate almost as fast. I was starting to feel real good compared to lying on my deathbed. This was however, hanging out around the house not doing much. Going back to work was a whole different story, which I was cleared to do May 1st.
The Long Haul
It didn’t take long to realize I was not ok, physically or mentally. Seemingly minor tasks that I’ve always taken for granted such as, walking from the parking lot to the building at a normal pace, or going up a small ladder would cause alarming symptoms. These included chest pains, lightheadedness, shortness of breath and a racing heartbeat.
Then there are other lingering physical issues not tied to exertion. These fluctuate in intensity. Sometimes I feel almost normal. Sometimes just a few pop up. Sometimes they all hit me at once like a Mack truck.
Waking up feeling like my lungs are full of concrete. Muscle weakness that will make a stack of cardboard feel like a stack of bricks. My legs will feel like there are weights strapped to them.
I’ve been told that my color looks off and I just plain “look like shit” or “exhausted” frequently. I had a mortified coworker tell me she watched all the color drain from my face and come back again in under a minute.
Then there are bizarre things going on with my feet and ankles. My feet and toes get little pin prick spots on them. They’re not raised and they don’t itch but they look like a gnarly rash. I’ll also get swollen, red, hot, itchy blisters on my toes. Then there’s the excruciating ankle pain. It only happens if they are elevated up level with my heart for even just a short period of time. It won’t hurt until I put weight on them, at which point I’ll experience a sharp stabbing pain that shoots from my ankles up the back of my legs. I’ll walk for a few excruciating steps and it’s gone. I experience this every morning and sometimes it still catches me off guard and I have to catch myself from falling to the floor.
Mentally it has been an even bigger struggle. The general term they use for it is “brain fog.” Which kind of makes it seem a little fun dark and mysterious, it’s anything but that. It causes thought processes to move much slower, comprehension skills to drop off a cliff, trouble getting new information to stick, and memory problems. My speech/ cognitive therapist told me it’s similar to her patients with post concussion syndrome. This has been my most frustrating symptom so far. It feels like my IQ dropped quite a few points.
The mental issues do drift in and out like a fog. Sometimes I almost feel like myself again and other days it feels like I woke up 3 sheets to the wind. Other times it’s similar to skipping that morning cup of coffee when you’re used to it.
The best way I’ve found to describe it is if comparing your thoughts to moving your feet. Before COVID-19 my thoughts were like walking on nice smooth clean asphalt street. After COVID-19 there’s always a layer of sand under my feet. Sometimes it’s ankle deep and every step forward is 2/3 of a step back. Other times it’s more of a light slippery coating. I have yet to get back on that solid clean asphalt surface since getting sick.
Somebody Help
I hadn’t realized it but my awesome coworkers in the next department over had been keeping an eye on me since my return. During a particularly bad episode one of those coworkers grabbed me by the arm and walked me into the office. He wouldn’t leave until he was sure I wasn’t going back onto the floor. I left work and went straight to the ER. I’d been back to work less than a month.
When I got to the ER I explained to them that I had COVID 3 months prior and I was experiencing all these concerning symptoms now. My main complaints were chest pain, lightheadedness, shortness of breath, and muscle weakness. They treated me like I was having a panic attack and shot me up with Ativan. After the injection, the nurse even said “I bet you feel a lot better now don’t you?” I said “no, not at all. I’m still lightheaded, short of breath, my muscles are weak and I have intense chest pain.” To which she replied: oh well, we only have one COVID room and it takes hours to disinfect it so you have to go. You also can’t legally drive after that shot so you’ll need to find a ride home. She was short with me and complained very loudly, about having to put on PPE right outside my door, all 3 times she came in the room. My bill after insurance for that nightmare visit was over $3k and I was still getting various individual bills for it 7 months later.
When I got home I looked at my bloodwork results and noticed multiple things with a (H) high or (L) low indicator next to them. Low carbon dioxide and globulin. High chloride, calcium and albumin/globulin ratio. Not being a doctor, I called my primary care physician to see what they meant. He told me it was a shame they discharged me because he could see from the bloodwork I wasn’t breathing correctly.
Shortly afterwards my primary care physician recommended a local pulmonologist and then a cardiologist. They sent me for various testing. Chest X-ray, chest CTA, pulmonary function test, electrocardiogram, echocardiogram, and more bloodwork. Everything came back normal. I still had no answers and they didn’t know what to do with me. The pulmonologist told me that he had 3 other patients with “perfect tests” and the same symptoms and there was nothing he could do for any of us.
Fast forward a few months and I find out there is a post COVID treatment clinic down at Penn. That is where I’ve been going ever since. Everyone I’ve dealt with at Penn has been professional, caring and they’ve tried their best to find some answers. Despite the team effort I still have very few answers.
They sent me for more extensive bloodwork and I wore a heart monitor for 2 weeks. Again, everything was normal. Then came the stress test. My cardiologist tried to get me a stress/echocardiogram but my insurance company said it wasn’t “medically necessary” and kicked it back. So I went for the standard stress test on a tread mill instead. The results prompted them to try and get an MRI stress test scheduled ASAP. Which took almost 2 weeks for my insurance to approve.
That MRI stress test absolutely destroyed me. The drip they use to get your heart rate up usually takes about 5 minutes but my heart jumped up to the target rate almost immediately. During the test a heavy wave washed over me and it felt like an elephant sat on my chest. As expected all my exertion symptoms happened including getting intense chest pains, lightheaded and short of breath. A brand new one also happened tingling/numbness in my chest and arms, mostly in my left arm. All this stuff is supposed to stop when the test is over but it did not. I spent weeks mostly lying down after that. The tingling and numbness was constant and took weeks to subside. The other symptoms would happen with even less exertion. Going from laying down to sitting up and walking into the next room was enough to bring them on. Just rolling over in bed was enough to get my heart pounding.
My muscle weakness was also amplified, it wasn’t just my arms and legs anymore. Even my face was weaker. I would take a drink of water and it would trickle down my chin. At 37 years old, I know how to take a drink of water without dribbling. It took weeks for my body to calm down back to the level of unwell I’ve become accustomed to.
It is mind boggling that with how much that specific test amplified my symptoms it still didn’t show anything wrong. I know there are people out there who are suffering more than me. I don’t take for granted that my organs aren’t showing damage on traditional tests. I don’t take for granted that I’m still alive. I try to remind myself of those people whenever I get frustrated with the lack of answers. The lack of answers does not come from a lack of trying.
Treatments
Speech/cognitive therapy. There is no cure for whatever is wrong with my brain, this type of therapy is to help deal with it. My therapist taught me multiple techniques on trying to reprocess my thoughts to get things to stick. She also taught me about the spoon theory and how to budget my mental “spoons” which has helped considerably. If there is no cure, learning to cope with it will have to do.
Physical therapy helped a little bit. I was making some progress but dropped out after the stress MRI. I’ve been doing some of it at home again and it feels ok.
Then there is therapy for my mental health. Believe it or not but going from only having a bad back to this massive list of health problems is incredibly depressing. The fact that there are still people out there convinced it’s an overblown hoax or a liberal media conspiracy was absolutely infuriating. For a while I was extremely bitter and genuinely wished harm upon them. Through therapy I’ve moved past that. I now realize that they are ignorantly fortunate to not have anyone they love be seriously affected by this horrible virus.
I was given a course of steroid pills and a steroid inhaler by the first pulmonologist I saw. Neither of those helped. I’m currently on a 200 mg dose of the beta blocker acebutolol. That has been helping a little bit with the symptoms that happen with mild exertion.
Staying extra hydrated helps with the fatigue a little bit. Also with the brain fog just a tiny bit. Any sort of relief, no matter how minor, is worth pursuing.
One Year Later
I still have a heaviness in my chest most days. Sometimes it also feels like tearing and I get the distinct metallic taste of blood. It’s not enough to spit or cough up but it’s absolutely the taste of blood. Other times I just get a minor tickle that prompts a cough.
I still experience muscle weakness regularly. It takes slightly more exertion for the chest pain, lightheadedness and racing heartbeat to happen. That is most likely from the beta blocker helping. One of my favorite activities before getting sick was hiking. I hope to be able to go again some day. I’m still a long way away from being able to do that again.
I still experience brain fog but I rarely wake up feeling completely in immersed in it anymore. Mostly I just run out of spoons if I don’t budget them correctly.
My color still fluctuates wildly for no reason.
I still have the stabbing ankle pains and randomly get the weird spots/blisters on my feet.
Hope
The vaccines are here, even if their roll out is agonizingly slow. Here in Bucks County PA they’re still working on rolling out the first phase of doses. Medical workers absolutely need a vaccine more than I do. So I’ll just keep continuing to social distance and wait until my number is called.
Fortunately there are many people hard at work looking for effective treatments every day. Remdesivir has been a major breakthrough. Back when I was sick the only thing they could do at the hospital was give supplemental oxygen and jam a ventilator down your throat when you couldn’t breathe on your own anymore.
There are plenty of long COVID survivors out there and plenty of people looking for answers. They are finding new information about this virus every day. Someday they’ll figure out what’s going on with people like me. Until then I’ll just wait until my number is called.
My Long Covid Story 