People with MS Have An Important Role to Play in The Great Big COVID-19 Experiment.

Knowledge is power. The more we know about COVID-19, the more powerful we will be. This is why we spend eight to twelve hours a day checking our iPhones.. .to possibly learn twenty two seconds worth of relevant information that might SAVE OUR VERY LIVES. Or, at any rate, to learn another snippet about “The Tiger King.”

I thought I’d pass along a bit of relevant information I’ve gleaned , because it concerns my peeps, the folks with MS. Gentle Readers without MS…stay with me. I’ll be passing along a few bits of relevant information for you, too.

I’ve been taking the threat of COVID-19 extra seriously because I’m in that subgroup that’s supposed to be afraid… very afraid: I am one of the Immune Compromised. Like many of the insured with MS, I’ve been taking very expensive medication that I’ve since read may have made me fractionally more immune compromised in the face of COVID-19. Had I been on a more effective MS medication, I may have been significantly more immune compromised. So I guess I’m glad I was on a dud of a medication? Mostly, I feel those of us with MS and medical insurance have been played for suckers to generate profits.

Anyway, I’m off my meds. Good riddance. Except. I am now experiencing weird visual symptoms that may (or may not) have been prevented had I continued with my lame MS drug. There is no way to know if I’m having a relapse without going to a doctor, and who wants to do that? I don’t have a control-group-twin sister who is still on Tecfidera.

Yesterday I read about a tool more ethical than a control-group twin sister— a global initiative that is amassing data to help people with MS and other demyelinating diseases of the central nervous system to make more informed decisions about our risks related to COVID-19. It’s a database called COViMS.

We neuro-compromised don’t have to do much to participate in this database. We just have to a) catch COVID-19, b) get tested (good luck with that!) and c) tell our doctors to use this link to fill out a brief report, though “only after a minimum of 7 days and sufficient time has passed to observe the disease…through resolution of acute illness or death.”

The form takes ten minutes to fill out, but that’s not our problem; that’s our doctor’s problem. We will either be recovered or dead.

I am always looking for a way to be useful after I am dead. (I’m not too keen on being useful during this all-too-brief period before I am dead.) For years, I’ve been wanting my dead body turned into some form of compost. Seriously, that would be a dream come true. But if that dream is not to be, having my COVID-19 struggle recorded in a searchable database will have to do.

There is, however, a small but distinct possibility that my COVID-19 struggle has already come and gone and is only now getting documented in this very small database known as my blog. I was wrapping up a session of qi gong in our back yard during an unseasonably warm and sunny day when I suddenly experienced an acute pain in my lungs. It felt like I’d inhaled asbestos mixed with the smoke from a thousand cigarettes mixed with a thousand tiny daggers. There had been a brief regrettable period in my youth when I was a two and a half pack a day smoker. My lungs felt worse than they did then. And felt worse than they did through my childhood bouts of pneumonia. There was no database to consult about my chances of surviving COVID-19. As far as I knew, being Immune Compromised meant I was about to be a goner.

Operating under this speculation, I did a few embarrassing things.

I received a text from a friend of mine, who was anticipating the arrival of three grown children from New York. She had just discovered the toilet paper shortage was real. I replied by bequeathing her our precious Costco sized trove of toilet paper, without checking in with my husband first.

I then texted my son that I was proud of him. Or that I loved him. Or that he should do good in the world. Something that could have raised an alarm.

I then called my parents. They told me to hang up and call a doctor. So I hung up and tried for a telemedicine consult through my insurance company. In order to qualify for a telemedicine consult, I had to fill out a brief questionnaire about my health status and symptoms. The questionnaire asked if I were immune compromised. I was immediately patched through.

The doctor on the other end of the telemedicine consult was a young woman who looked and sounded ten times sicker than I felt. As she asked me questions, her toddler toddled into the background, asking questions of her invisible patient in her private toddler language. The doctor informed me that I would not qualify for the COVID-19 tests in my area. She advised me to get some rest. She told me that I was breathing more freely than a patient she’d be concerned about. Feel better, she said. Feel better, I said. The toddler said something in her private toddler language. The exchange cheered me up.

I realized that even though I have MS, and had inexplicably burning lungs, that didn’t necessarily mean I had COVID-19. And even if I did have COVID-19, it was not necessarily inevitable that I was about to die. Maybe there was a chance I could live through COVID-19. At the time, there was no database to consult. Instead, I grated ginger into my tea and I rubbed tea tree oil onto my chest and I did a round of qi gong with Jeff Chand on You Tube and I consulted with my body and my breath. Within a few hours, I was updating my parents that my lungs had stopped hurting so badly. I received a text that my friend would not be needing my toilet paper, after all. I received no reply whatsoever to my text to my son; clearly, I had not freaked him out.

I went to bed with my lungs aching, but not too badly. I woke up barely feeling my lungs at all. In the two weeks since then, I’ve had one other inexplicable scare wherein my lungs hurt severely for a few hours, but mostly, my lungs have been serving me quite well. How well? A few of my college friends talked me into trying Wim Hof’s guided breath meditation on YouTube. I learned I can hold my breath for two minutes, a super-power I would have loved to have known I was capable of back in 1972 or so, when I was watching a Batman and Robin episode in which the daring duo was trapped in a room with rising water. There isn’t much we can control during this COVID-19 crisis; controlling the breath has become ever more appealing.

My friend Monica also has MS and has also had a COVID-19 scare, although we didn’t know it at the time. She announced her symptoms as we sat in a sun-drenched lobby that looked like it belonged to an upscale hotel and not a Neuroscience Center. We’d all just finished what I announced would be my final MS yoga class for the nonce…I was at that point feeling a bit apologetic about my freakish instance that COVID-19 could be on its way. Our friend Kim was sipping the kale and blueberry smoothie we’d recommended. Monica had abstained from ordering a smoothie; she explained she was recovering from battling a freakish bought of diarrhea, and was still experiencing the strangest side effect—she seemed to have lost her sense of smell. None of us yet knew these were symptoms of COVID-19. I would miss only one MS yoga class before the hospital finally cancelled its sessions. Since then, I’ve been hosting the MS yoga sessions on Zoom.

At the end of the first Zoom yoga session, Monica and I were the last two participants left on the screen. She told me she was looking forward to the COVID-19 antibody test. Wouldn’t it be cool if we’d already had the virus, and could just relax? I countered that since COVID-19 was a novel virus, we had yet to learn how effective antibodies would be, and for how long. Today on NPR I learned that those antibody tests we’ve been looking forward to do are actually riddled with false positives. It’s still too early to relax.

Even so, the unique challenge we all face is that we have to relax…at least enough to keep ourselves from developing a harmful immune response should we encounter COVID-19. And we have to stay vigilant. At least enough to keep the virus from getting to us in the first place. It’s a tricky balancing act. Those of us with autoimmune disease are uniquely positioned to have already experienced the loss of control the rest of you are now experiencing. It’s not easy to be calm in the face of imminent danger. But it is imperative. The immune component of the disease opens up an opportunity for all of us to take back some control of our health by treating ourselves well.

Gentle Reader, what have you been doing to relax?

4 thoughts on “People with MS Have An Important Role to Play in The Great Big COVID-19 Experiment.

  1. Another thoughtful post. You have no idea how our world turned upside down the day you let us know you thought you were sick. Suddenly it was all too real.

    Today I watched my neighbor, who visited his mother, (along with who knows how many other family members), for Easter, as he conversed with his friend from two feet away. I actually walked over (20 feet away,) and said, “ X, I’m here to yell at you. 2000 people died yesterday. SIX FEET!” He looked at me dumbfounded. His friend said, “She’s right”. Later my neighbor thanked me for watching out for him. But later this afternoon, another guy visited him and the same lack of social distancing took place. So it’s up to us to protect ourselves, even from our friends and good neighbors. Keep reminding us.

    >

  2. WOW! I am so glad you are better, so sorry about searing lung pain and fear that it brought with it! You sound so good right now, sane and balanced and breathing well – GOOD NEWS! I have a friend who has Lupus who is also a lymphoma survivor; she’s a Dean of Nursing at a college and has been confined to her house now for a month, working everyday from home for nurses in MN, but seeing people only on zoom, etc. What I am so happy about is that you have John and friends who know what it’s like to have MS on top on the fear of a novel virus. Grateful for your spirit, your strength, your sense of humor, and you openness to the surprises still ahead. And about Henry not responding to what obviously was your goodbye – he’s a guy, and sometimes our sons don’t seem to be well tuned in. Mine included! Be well, continue to take good care of yourself, breath deeply and read with joy. Love you!!!

Leave a Reply to Catherine Moran Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s