COVID
I’ve been pretty quiet for the past couple weeks. Long before the events that have been unfolding, but especially now because I really just don’t have the words to express how disappointed I have been, actually more like disgusted.
At the end of December I caught COVID.
Being chronically ill/immunocompromised in this world was already awful, but it’s been especially fun the last 2 years. Because at the end of the day no matter how much of myself I have tried to give to others and to my community it doesn’t seem to matter to some people. The people who in one breath praise me and in the other breath make excuses for if “people like me” die all because their “freedom” has been impacted by their own choices. I don’t get to choose whether I have MS or not, but I’m expected to deal with the consequences of everyone else’s choices. It’s fun, it’s really fun.
I had to wait 12 weeks after my new MS drug infusion to get a booster. I did it as soon as I could, as did everyone around me. In the end this is why we managed to prevent massive spread in our family. I had 2 shots pre Ocrevus and the booster after. As soon as I tested positive we all wore masks in the house and I isolated. Not sleeping in the same room as Paul for 5 days was one of my least favourite parts.
I have lived pandemic life doing my best to follow the rules. But no matter how much staying home I did, there are circumstances in my household that I unfortunately can’t control, like Paul having to be out in the public to keep the businesses alive.
My “good” days with MS could be numbered. When restrictions are lifted most people can go back to their normal lives. People living with MS don’t have the luxury of normal lives. I fight everyday not to live in fear of my body. I added an immunocompromising drug that is supposed to prolong the number of those “good” days but my god did it come at a cost. There is a constant fight in my mind between the you only live once mindset and the I also can’t take unnecessary risks mindset.
For me everyday is, if I eat this will I feel worse, if I don’t eat that will I feel worse, if I drink this will I feel worse, if I don’t drink that will I feel worse, if I don’t exercise will I feel worse, if I do exercise will I feel worse, there are no definitive answers. I do my best to read my body. Most of our lives are unconscious calculated risks but with MS the calculator is right in my face.
I tested before gathering with my family for Christmas Eve even with no symptoms. I tested again after some symptoms came up in our house. Both negative. Tested again before another family gathering, negative. Then 2 days later on January 29 I developed a rash on my face and a slight cough so I tested again. Negative. 3 hours later I walked by the test only to see a faint positive?! Tested again and got a positive. PCR test the next day. Positive. My symptoms were congestion and a tickle cough. No fever, no loss of taste or smell and no problems breathing.
January 2 I felt back to normal, it was such a relief, but then the next day it hit me again. Congestion, cough but this time something new. Nausea and a tightness in my chest. What was it? Just a usual MS hug? No it felt different. COVID moving into my lungs? Heart issue? I called 811 and was told to call an ambulance. Ummm no. Was told to go to the hospital. Still no. Then 4 days later my resting heart rate wouldn’t come down and my blood pressure dropped. If there is anything about me that I would bet money on it is my blood pressure is consistently text book. I knew something was wrong. When this happened I finally reluctantly went to the hospital. It just wasn’t going away. At work I had already taken 4 sick days to rest (that’s more than the previous 3 years combined).
I use exercise to manage my MS, can you imagine what my body felt like being at complete rest. I haven’t had a fever since 2007 so for me even a slight core temperature elevation could maybe send my MS out of whack. It was so hard to know what was what.
I waited 6 hours to be seen. I spent the first few hours of my birthday in the hospital. The doctor was wonderful given my history he did blood tests and X-rays.
The only answer that could explain this was the virus was causing an inflammatory disorder characterized by chest pain and swelling of the cartilage of one or more of the upper ribs (costochondral junction), specifically where the ribs attach to the sternum. It can be caused by many tiny traumas to the chest wall like if you've had a respiratory infection with bad coughing fits.
After about 2 weeks I finally felt better but I can tell you it is still noticeably harder to breathe in the cold and when exercising. My lungs hurt. I notice a difference in my previously incredibly healthy lungs. But with all this I’m so grateful for the vaccines that without a doubt kept my family safe and me out of the ICU. Now I’m just hopeful my lungs will eventually recover.
