This is my story about having AS and being infected with COVID-19.
I came to London at the end of January with plans to marry my fiancé in the beginning of May. Both here in the UK and back home in the states, COVID-19 was on the radar and information was ramping up. We were simply advised to wash our hands, don’t touch our faces, and just be mindful of symptoms.
We had begun to realize that things were going south, and that this wasn’t just going to go away, around mid-to-late February. Then March came, and the lockdowns began. We had social distancing and limited amounts of people in the shops, but I mostly stayed home a lot and didn’t venture out. In the back of my mind I was concerned, because I am an asthmatic as well as having AS.
My fiancé was pretty sick during the first week or two in January. He ended up going to the hospital and was diagnosed with an upper respiratory infection. He was sick for a week before he sought help for shortness of breath. That got me thinking… could he have had it then?
At the end of March, two weeks into lockdown, we ventured out to a grocery store. I’m pretty sure I picked it up that day, as it was a crowded store – despite social distancing – and I didn’t have a mask yet.
On April 3rd I started feeling run down; on April 6th I had full–on flu–like symptoms with body aches – just awful body aches, fever, loss of taste and smell. I kept thinking about the cough: Was I going to end up with that horrendous cough and lung pain everyone was describing? I was really worried due to being asthmatic.
About 4 to 5 days in, the cough started. The chest wall pain, the lung burning, the unending hacking cough. I was in a whole other country and scared to death to go to the hospital by myself, knowing my fiancé would not be allowed to go with me. I was afraid that if I went to the hospital, I might never see him again. We did call the national health system hotline here and they sent out a “nurse ambulance” that triaged me right here in the flat.
While I was not tested formally (they said, at the time, that the tests were only for the critically ill), they diagnosed me with possible COVID-19. I was told that I would not want to be at the hospital because it was like a war zone. The lung pain and burning was like nothing I’ve ever felt.
This went on until about the last week of April… about 23 to 24 days. I slowly began to regain strength and the pain was going away. But then something else happened. My skin began to blister and peel. My face, my chest, my hands. Then I remembered something that startled me. My daughter was diagnosed with Kawasaki disease when she was 4, and her entire body blistered and peeled for two weeks after onset.
By the beginning of June, I was pretty much 100% again, but I still felt like I was coming down with a cold periodically. My guy took great care of me. I had stopped taking Cosentyx before I flew over – my insurance denied it, so I eventually ran out of what my doctor had given me up to that point. I wonder if that would have affected my recovery.
I hope that those folks who have AS or nr-axSpA and have gone through COVID-19 are able to fully recover, and that maybe we can come away with further research for future treatments for the immunocompromised folks out there.
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