I had stopped posting about my journey with COVID-19 because I kept on having the same symptoms recur over and over after them being gone for a few days. Let’s face it, it’s not very exciting to read “Well, shit. I feel the same headache, aches and exhaustion again today. I thought I was well, but I guess I’m not.”
Also, I figured people would think I was flaky or crazy if I stated that my symptoms just kept on returning after being gone for days. And, I have already had people accuse me of faking my symptoms for attention, since I was not able to get tested, and therefore could not “prove” my infection. This does not make it comfortable, or safe emotionally, to put it out there into the world that you are having symptoms again. Especially when you are already sick and have limited energy. In those times, you need support, not derision.
But the symptoms have returned. I started to feel sick the first time on March 16th. I finally thought I was better on April 30th. Then, on Wednesday night, May 6th, they returned full force. The headache is truly unique to Covid. I have had many migraines. This IS NOT a migraine. Also, the array of other, random symptoms that come and go. A rash on my arms and neck. The inability to think or read. Such exhaustion that watching a movie is too much. Being out of breath from lifting your purse or walking up the stairs. And, so, so many others.
Yesterday, a friend from the UK who has also had long-term symptoms and has not been able to be tested, invited me to join a Facebook group specifically for people having long-term COVID-19 symptoms. As I read the posts last night, I sat and wept with relief. I was not alone in my experience!! I was not crazy. In fact, an MD in the group is proposing a study of people having these experiences, for many people have doctors that are not believing them because they are testing negative and having clear chest x-rays, and employers insisting they come back after two weeks. We need to have medical documentation of the long-term occurrences of symptoms.
There is some thought that it might be a result of a heightened histamine response. About ¾ of the people, including myself, have various allergies. So, it might be due to mast cell activation. There is just so much we don’t know. But this is REAL. And long. And frustrating. And scary.
If any of you know someone in medical public policy, medical research, or the media, we are trying to get the word out about the potential long-haul response to this virus. Feel free to reach out to me here or to email me at firstname.lastname@example.org.
If you would like to read my entire coronavirus journal of my experience, you can find it here: www.kimberlihudson.com/post/coronavirusjournal
And, my purpose with this is to help people through this time and virus. Feel free to share my experience widely so other people can feel supported and that they are not alone.