My Long Covid Experience

The headache was my first clue that something was wrong. At first, I thought it was one of my many chronic headaches but within 24 hours I knew I was sick. With the holiday weekend beginning, I took advantage of my last chance to get tested for the next 5 days; then, I canceled our Christmas plans.

December 25, 2020 at 7:54 am, the phone beeped. I had a message. Test results were available:

87635-SV – Coronavirus (SARS-CoV-2) PCR Test – Saliva

Reported 12/25/2020 7:54 AM Status Final Lab Name ASU Biodesign Clinical Testing Laboratory (ABCTL)

Test NameResultFlagsReference Range
ABCTL-Saliva-SARS-CoV-2 PCRPositive*ANegative
Your test result has been determined to be “positive.” This means that you are infected with the coronavirus, whether or not you are experiencing symptoms. 

There it was. Proof that I had COVID-19. Immediately, my mind replayed the events of the previous weeks. Who had I seen? Who did I need to warn? There weren’t many, praise the Lord, but there were a few. After contacting everyone I knew I’d been near for any length of time, I began to process what I was experiencing.

In addition to the headache, I now had congestion, a sore throat, a cough, and muscle aches. And it was Christmas day. Did any of my kids or husband have any symptoms? My youngest did. His throat hurt and he had a headache. He was probably positive.

My husband and two of our sons tested negative, and as I suspected, the youngest tested positive December 28, 2020.

Day 6, my son was feeling better. I was also starting to feel better. The headache wasn’t as bad, and I wasn’t sneezing or coughing as often. But I had more shortness of breath (SOB), a tight chest, and this is the day I lost my sense of smell.

Loss of smell and taste is further reaching than you might expect. Sure, okay, I can’t smell anything, but what does that look like? For me, that meant my morning tea was nothing more than hot water. This is what I miss the most. But it also means, I can’t smell when foods have gone bad, turned sour and it’s no fun drinking milk that’s gone bad. It also means, I’m more likely to burn stuff without knowing. I know, I know. I’m not supposed to walk away from the stove if I have anything cooking on it, but it happens. And then burnt grilled cheese happens and you don’t know it until your kids ask you why it’s so smoky in the house because you’ve disconnected the smoke detector because it was too sensitive and you haven’t even smelled the smoke. But it’s not all bad, not smelling. It made me aware of some of the bad habits I’d formed. And the best part about it was that living in a house full of boys meant, I no longer smelled all their farts.

“Day 10: Depending on the hour/day, I’m either feeling better or have a heavy chest and SOB, dizziness, fatigue, and headache. No smell still.”

My quarantine ended, and I was still experiencing symptoms. I had a tele-med appointment with my doctor who prescribed an inhaler for my tight chest and SOB then gave me a letter saying I’m no longer contagious (something I needed to be able to go back to Grand Jury duty).

I went back to Grand Jury January 21st, but I probably shouldn’t have. My chest was so tight that day, just wanted to curl up and sleep. But I made it through the day thanks to my new inhaler. I should mention that I really enjoyed being on the Grand Jury for the four months that I was, so I was rather conflicted about not being able to participate like I wanted to.

Over six months into this journey and my sense of smell and taste are still alluding me. Sometimes I can smell things but mostly, I can’t. And when I do smell something it lasts for only a few seconds before I smell nothing. Even stranger are the wrong scents I smell. Taste is also weird. Most of the time, what I think I’m tasting is actually just a memory of what I think it should taste like but if I stop to think about it, the flavor isn’t there. Maybe I’ll explore this more in another post, but for now, I want to focus on my shortness of breath and fatigue. They are getting worse, and keeping me awake at night. A few weeks ago, I woke up in the middle of the night, gasping for breath, unable to breathe, and I woke up at 3 am today, but when I tried to go back to sleep my heart rate was too high and my chest was too heavy. It’s moments like these when I am most grateful to have an inhaler and a husband who can help me if I need it.

I called my doctor after the first episode. We had a phone appointment, not the best, but at least it got the process started. You see, I had brain fog during the visit and was having a really hard time processing everything she was telling me. So, when she was done giving me the scoop for what they’re able to do for Long Haulers and asked me what I wanted to do, I didn’t have a clue what my options were. I told her about my brain fog and asked her what she would do if she were in my shoes. She sent in a pulmonary referral, and recommended counseling.

I waited for the referral to go through for five and a half weeks, and was actually glad to be woken up from my daily nap to be told I could go get my chest x-ray now and schedule an appointment. One step closer to figuring out what’s going on and getting help. As for my counselor, whom I’ve met with twice, she’s awesome. I didn’t know what to expect. But it has been a bit easier to adjust to my new reality, and she also followed up with my referral which is why I think it finally went through. She’s helped me learn how to pace myself. I can go on long walks but I won’t be able to do anything else the rest of the day. I can sing a song but will need to catch my breath afterwards. I have to give myself permission to not finish the song, to skip a verse during church or to not finish playing my flute with the community band if I’m out of breath or too tired. Right now, I’m just grateful that I can go to community band, and I can hang out with my friends. There are so many Long Haulers who can’t.

I would be amiss if I didn’t acknowledge the other 13.7% or more of Covid survivors like myself who are Long Haulers. While we have many things in common, namely, Covid symptoms that persist for 4 weeks or longer, I am really blessed to have good days mixed with the bad. More than that, I haven’t had to be hospitalized and am able to get on with my life for the most part. There are many who can’t. My heart goes out to them. If you are a Long Hauler, consider joining a support group. I just joined one on Facebook. Not only will you be able to know you are not alone, but you’ll be able to find other resources to help you in your recovery and you’ll be able to ask all your questions that no one seems to know the answers to and even if we don’t have the answers, you’ll know we’re struggling with the same questions, and we’ll struggle on with you.

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