My Story of Being High-Risk with COVID-19

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It finally happened. 

After 10 months of caution and feeling like it was hanging over my head the entire time, I came down with COVID-19.

I have severe asthma that has nearly killed me many times. I also have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Generally speaking, I pick up just about every germ that I come across, and I get pretty sick. A common cold can put me on prednisone with serious breathing difficulties. In 2018 and 2019, I came down with Influenza A and was very sick for weeks each time. My lungs have never fully recovered from the bout in 2018. When I do finally start to recover from an illness, it takes a LONG time for me to get back to my baseline which, isn't very impressive to begin with thanks to my chronic illnesses. 

Before I go any farther, here's a brief description of the conditions I mentioned above:

Ehlers Danlos Syndrome (EDS): A connective tissue disorder that can cause hypermobility of the joints (what some people refer to incorrectly as "double jointed"), stretchy, fragile skin, gastrointestinal issues, and MUCH more. Connective tissue is the glue that holds a person's body together and when that is faulty, the body literally is falling apart from the inside. People with EDS often have the "trifecta" of EDS, POTS, and MCAS.

Postural Orthostatic Tachycardia Syndrome (POTS): POTS is a form of Dysautonomia which is a condition where the automatic functions of the body such as heart rate, blood pressure, temperature, digestion, etc. are essentially "out of whack" and don't operate properly.

Mast Cell Activation Syndrome (MCAS): Mast cells are what cause allergic reactions. For most people, they behave normally, but for people with MCAS, they're out of control, reacting to everything and nothing and causing repeated mild to severe anaphylaxis symptoms. When most people hear anaphylaxis, they picture someone with their throat closing up, but anaphylaxis can cause rapid pulse, low blood pressure, itching, hives, flushing, swelling, wheezing, difficulty breathing, abdominal cramping, diarrhea, and nausea. When I'm not on my treatment plan, I experience mild anaphylaxis symptoms multiple times a day, often with no known trigger, and more severe anaphylaxis several times a year. 

In addition to my asthma being a concern, my MCAS and POTS also made me think that I should really avoid catching COVID-19. Many patients who recover from COVID-19 end up with POTS-like symptoms for weeks or months after. Also, complications in COVID-19 are often attributed to the patient crashing due to a cytokine storm which involves an overreaction of mast cells (remember what I said about MCAS?). In fact, several of the medications and supplements I take regularly to help control my MCAS have been recommended for people with COVID-19.

So how did COVID-19 go for me? Overall, I would say surprising. I had heard that people with the virus have horrible coughs, sore throats, and high fevers. I had an extremely mild cough, a mild sore throat for one day, and only ran a fever twice that never got above 101 F. I did experience severe fatigue, body aches, a stuffy nose, and moderate breathing difficulties throughout the whole illness. I also intermittently experienced chills. 

On December 16th, I found out that someone I had been in contact with had tested positive for COVID-19. The next day, I started to feel sick and so the day after that, I went in to be tested. The next day (December 19), the results came back positive. I immediately quarantined myself in my room away from my family. On day four of being sick (December 20), my husband began to not feel well either. On day five (December 21), I lost my sense of taste and smell although it slowly came back 4-5 days later. My husband went in to get tested that day and the next day, his test came back positive as well and so he joined me in quarantine. Our kids are 12, 10, 8, and 6 and thankfully, were able to take care of themselves pretty well. They weren't allowed in my room and if Hubby or I left the room for any reason, we made sure that they didn't come near us. We were also very blessed that our family and friends dropped off meals for us so the kids didn't have to live on scrambled eggs, sandwiches, and macaroni and cheese the whole time. 

Hubby's fever mostly stayed above 100 for the first nine days of his illness, but thankfully let up after that. He never got as sick as me (of course. He's such a show-off) despite having a fever while I usually had none and was able to go back to work once his quarantine was up on January 1st. On December 25th, I spiked a fever during the night and felt very ill, but I think it was my body rallying and fighting the virus off as the next day, I finally started to feel like I was moving into the recovery stage after 9 days of severe body aches, fatigue so severe I could barely walk to the bathroom, a very stuffy nose, and headaches. My quarantine ended on December 27th, but I was still very weak and fatigued so I stayed in bed the rest of that week to let my body recover. Thankfully, none of the kids ever showed symptoms of being sick and after their quarantine ended on January 9th, they were able to go back to school.

Today is January 18, over a month after coming down with COVID-19, and I'm still not back to my baseline. I get fatigued very easily and my asthma is not under control as well as it normally is, but overall I'm happy with how I've recovered and the lack of complications while I was sick. Obviously, I know that not everyone's story of COVID-19 will be as good as mine. I have a number of friends and family who have also had it and several had life-threatening complications, but thankfully survived. 

Have you or someone you know had COVID-19? How did it go?