ms-covid-19

MS in the Time of COVID-19

I wanted to write a post about what it’s like to have MS in the time of COVID-19. A pandemic that overwhelmingly affects people with underlying conditions, which MS is. Chronic disease is an underlying condition. Adding in an immunosuppressant DMT can increase the risk of not being able to fight COVID-19. 

Does this mean I have an increased chance of dying from COVID-19 if I get it?

It’s not a simple “yes” or “no.” The answer is mostly, “I don’t know, but I can point to what the experts currently say on the matter.” Then I have to do what is right for me to stay safe. 

MS and COVID-19

First things, first. I am not a healthcare worker. Nor am I in public health. My knowledge in this area is minimal. It starts and stops with the amount of research I am willing to do on the matter. Therefore, take what follows, not as a replacement for medical expert advice.

And that’s what I want to may a point of: do your research on your condition. What you find might bring small comfort. 

When I sat down and researched my risk as someone with MS, who at one point in time was on an immunosuppressant DMT, I was shocked by what I found. For the current medical research out there, I am not at an increased risk of dying from COVID-19 if I got it. If I were older or had a comorbid condition, then I would be at a higher risk of contracting and struggling to fight the illness.

Outside of the MS, I am healthy. I have asthma, which is problematic. Still, my asthma is so well under control that you could make the argument that I don’t have it (diagnosed in childhood).

But if you have MS, your MS alone will not increase your chances of not being able to fight COVID-19. It’s everything surrounding the MS that might cause issues. That is why we, as people with chronic conditions, must be vigilant in how we approach this illness. 

Listen to current guidance from reputable health organizations, like the CDCWHO, or NHS. If you live in the United States, turn off the TV during the daily press briefings. Rarely will you get useful information on how to stay safe at this time, unless it is coming from the NIAID director. It is hard science and facts that will keep us safe and get us through this. Not intuition or feelings.

This is a great resource for what you can do to stay safe while living with MS.

When I was a Statistic

I recognize that not everyone is as lucky as me with their MS or chronic illness. At the very beginning of this crisis hitting the United States, I genuinely believed I was going to die from COVID-19. I swore that my MS would be the cause of it or my DMT.

For a solid month, I believed I was the person the news referred to when they said “underlying conditions” and “immunocompromised.” I was immunocompromised while on Tecfidera. But given the side effects I experienced and the pandemic, I decided to drop the DMT. I will be speaking more to my decision, and to my neurologist, on what my next steps will be in a later post. 

During this time, I was frightened. What I was most afraid of was not the illness itself, but leaving Jai and Ash. Jai would barely have memories of his mother, and I desperately wanted him to at least remember the love I have for him. Three is much too young to lose a parent, and my fear was for him rather than myself.

Believing I was a statistic brought on additional stress and frustration. It escalated my chances of an exacerbation (though I have yet to have one). It made my emotions run all over the place. I felt out of control, and I’ve talked about how problematic that is for me before. Grouping myself into the statistics was toxic for my mental health. 

I had to reign it in for myself and my family. That’s where the research helped me have a realistic picture of my situation. It gave me the necessary tools to feel more in control and how I managed my MS moving forward. I needed to find ways to provide myself comfort.

Finding Comfort

I want to preface this section by saying I am incredibly privileged to be secure in my home, my work, my food, and my family situation. I know not everyone is as lucky as me.

So, where do I find comfort at this time?

For me, it’s staying up-to-date on the latest science. I make sure to get it from vetted, reputable sources, not opinion-based “news” sites. There is only one way to look at the pandemic, and that is through hard science. The beauty of science is that it is always evolving. It is ever-changing when it runs into a dead-end or a faulty hypothesis. It adapts and finds new answers that push everything forward. 

It is through the science that I’ve found that I don’t need to live with the same level of fear I did a month ago. It is where I found my comfort.

But that said, the science is changing so much daily that it is sometimes best to give myself a day or two break from the latest news. Some days I only look at the information in the morning and don’t bother to interact with it for a day or two. 

Instead, I’ve created schedules for myself and the family that I stick by as much as possible. I try to create some version of a routine for us to help with our mental health.

Other things I am doing that provide comfort:

  • I minimalize our interaction with the public as much as possible. I’m getting us down to grocery shopping every other week. 
  • I made masks for the whole family. I wear the mask and gloves each time I have to go shopping (I properly dispose of the gloves, in my garbage at home).
  • I social distance as much as possible on runs or walks.
  • I wash my hands for 20 seconds and avoid touching my face for the day if I’ve been out in public.

The most important activity I do is to remind myself that this is temporary and will not be forever. I view all of this as a passing situation that I have to deal with for the next few months (or years), and will ultimately be a blip in what I hope will be a long life.

Yes, it hurts to be away from friends and running buddies. Yes, it hurts not to be able to go out in public spaces whenever I want. However, I am helping those on the frontlines of this fight by not putting myself in the hospital. 

Ultimately, I do not know which way the wind will blow if I catch COVID-19. I could be asymptomatic, it could be like a bad flu. Or it could be so devastating that I do need to be put on a ventilator. I don’t know how my body will react to it if I get it. Therefore, I take this time not to be angry at the injustice of it all, and it is unjust, but to appreciate what I am getting out of it. I am getting time with my family, time to read, time to explore new hobbies, and time to learn more about myself. 

I am grateful that I can write that last sentence. I know not everyone can.

We are in a difficult time, and living with MS makes it even more challenging. But the current science says that our MS alone will not increase our chances of getting and dying from COVID-19. The comorbid conditions impact that. I hope you find the same small comfort I did when I learned this information.

Remember, continue to follow the appropriate guidelines and keep yourself safe. We are in this together, and together we will get through it.

Attention to Chronic Illness Bloggers!

The MS Mommy Blog is looking to collaborate with other chronic illness bloggers for this year. If you have a chronic illness blog and would like an opportunity to tap into the MS Mommy Blog audience, please contact me here. I look forward to hearing from you.


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Illness as a Positive, Part II

In November 2018, I surprised myself when I wrote about how I was grateful for my MS diagnosis. Before writing it, I thought about the benefits of my diagnosis, in light of all limitations. I was healthier, mentally and physically because of it. I made and achieved personal goals since my teenage years. Can an illness be a positive? I asked myself.

As I wrote, I found the answer was “yes.”

This isn’t a case of the dreaded “inspiration porn,” that plagues people with chronic illness. I am not saying that chronic illness is some test that brings enlightenment to its sufferers meant to inspire others.

I was talking to Ash a few weeks ago about how my MS isn’t “sexy” enough to be inspirational. I’ve temporarily lost leg function before, but never to the extremes that other people with MS experience. There’s nothing inspirational about my diagnosis and disease-management story.

What I am saying is that, for me, getting ill was the wake-up call I waited for all my life. The call rang in the background, but I kept ignoring it. Getting the “all clear” from my neurologist on my brain lesions shook me out of complacency. I reached my “rock bottom” and needed to work towards the person I dreamed of becoming for so long.

I absolutely have my moments where my MS is a negative thing. I hate my brain fog, when objects slip out of my hands, or I struggle to get out of bed due to fatigue. There are days where I wish I could trade places with someone who isn’t chronically ill just to feel “normal.” I will admit: this daydream occurs at least once a week.

Taking a mental tally of the benefits my illness brought me versus the negative, I’ve found that the positive outweighs the negative. This won’t be the case for everyone, my MS was never that bad, to begin with, but making the decision to be positive is one form of disease management.

How? It gives me a more realistic view of the severity of my illness. Before, I had a hopeless view of my future. I waited until I progressed to Secondary-Progressive. I now see that the MS does not limit me as much as I thought it did.

Deepening Appreciation

My perspective on my illness is evolving. Rather than re-publish the post in November with some edits, I wanted a separate post to reflect on everything I’ve learned about myself and my MS in the last eight months. Life is a classroom, and I’ve learned a lot more about myself since November.

In childhood, I was taught adversity was a good thing: it’s what shapes us into stronger adults. It’s one of the reasons why I chose the lotus for MS Awareness on the blog. Through the mud does the beautiful lotus flower bloom: a perfect metaphor for what it’s like to live with a chronic illness.

We sit in our dark moments, in the middle of an exacerbation, unable to see the internal growth taking place. When the exacerbation is over, we blossom into a more resilient person, wiser from the experience.

I just passed my second anniversary since my last major exacerbation, but I still live with a fear that I will wake up with blindness in one eye, or unable to lift my leg to walk.

I am more aware of a lot of things in life.

I’ve become more mindful of my time, choosing to live in the moment more, rather than focusing on the future fear of an exacerbation. I appreciate each day I get exacerbation-free. I am aware of my aging, and what my elder years might look like with MS. I recognize my mortality more, not because MS might kill me, but it might take my ability to function away from me, so I have to wait for years to die in a hospital bed.

This is unlikely to be my situation, but this disease is so unpredictable that I cannot rule it out entirely.

That is something the MS taught me: the unpredictability of it all. Everything. Each time I go out to exercise, I play with Jai, I interact with Ash, or love on my cats; each of these moments is so precious because I do not know what I will wake up to in the morning. If I am lucky, MS won’t get me, but MS did make me aware that anything can. MS taught me that every day is a gift and you never know when it is your time to go.

I know that’s morbid, but it’s why I developed a more positive outlook. If we are given a brief chance to look back at our lives at the end, will I leave feeling positive about my life overall, or negative?

The Importance of a Positive Outlook

I am speaking from a place of acceptance with my illness, so it’s easy to maintain a positive outlook. We are not all there yet, as we work through the stages of grief post-diagnosis.

Once you reach a space of acceptance, try to look at life more positively. Look not at the series of moments of what you cannot do, but at the moments of what you can. You may be surprised that you can do a lot more than expected. Now re-examine the things you think you can’t do and see how you can adapt to make things happen.

I never thought I could be a runner, before MS and especially after my diagnosis. I did not think I could be a mother. I never anticipated getting into a positive space with my more adversarial acquaintances.

I never thought I could improve as a person, especially after my diagnosis.

And yet, here I am. If I had the opportunity to go back ten years to interact with myself, past me would not recognize present me both physically and in personality. I am a completely different person.

It started when I stopped looking at what I couldn’t do and adapted myself, so I could “do.” Embracing a more positive outlook, I started to say “yes,” to more opportunities to grow. I don’t know if that would have happened without my MS.

The Grace of Chronic Illness

Having a chronic illness is awful. This is never in dispute.

There are difficult days where we can’t get anything done. Where we are so miserable, physically, and emotionally, that we just wish it could be over. But the grace of the chronic illness is this: it teaches us compassion towards ourselves and to others in similar situations. We can share our knowledge and experiences with others who are struggling to navigate their chronic illness.

Another reason why we should view ourselves as lotus flowers: the lotus flower represents compassion and courage. We are reborn in our illness and able to cope in ways we previously wouldn’t expect.

The illness teaches us how much we can endure, and we are capable of enduring a lot. You might discover one day that a friend experiences the same pain you do, but cannot manage it without external help. Meanwhile, it’s a pain you experience daily but manage through mindfulness and perseverance.

It’s not about comparing pain or experiences, but acknowledging that our perspectives and thresholds differ from person-to-person. It’s also about acknowledging what you are capable of doing.

Who you are and who you can be.

It would be nice to have a cure for our illnesses in our lifetime. But that may not be on the horizon any time soon. Waiting for a cure and rehabilitation to change our lives is something we may not have the luxury in doing. Shifting our perspective towards our illness, no longer looking at it as an entirely negative force in our life, can help get us on the path of self-discovery and self-appreciation.

The grace of our illness teaches us to appreciate our lives as they are now and the value of life itself.


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Featured photo credit: Michelle Melton


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Self-Reflection with a Chronic Illness

My self-reflection journey had two significant steps: step one, reflecting on life immediately after receiving my diagnosis; and step two, reflecting on life after Jai’s birth. You could say that I am in the middle of step three because self-reflection with a chronic illness is a lifelong exercise. I am a firm believer that self-reflection should be a lifelong practice regardless of your health. It keeps us moving forward and prevents becoming stagnant.

Today’s post is about the answers I came up with when I looked at my life just after my diagnosis up until now. Like with Monday’s post, I will end with some questions to ask about your current situation.

Post-Diagnosis; Pre-Health Minded

I have discussed this period of my life a few times on the blog.

After my diagnosis, I was in not in a healthy emotional place. I grieved the loss of my “old life,” such that it was. I tried to process the physical betrayal I felt, the uncertainty of my future, and why I felt like life just hated me. Despite that, or perhaps to help cope with it, I did self-reflect a little bit about my life and MS.

A thought I kept coming back to was my mortality and what that might look like. While MS is unique to everyone, the only example I had in my life was Annette Funicello. I swore that my health trajectory would take me to a place where I would be trapped in my body like her. I told those close to me that I was convinced my RRMS would progress to SPMS by the time I was forty, just eight years away at the time.

I was in a weird space of fighting the progression of my disease, but also just accepting what was happening. Part of my anger and self-loathing I had at the time led me to just want to give in and let MS kill me. But I also wanted to fight MS and get healthier. Torn between the two extremes I got stuck in a holding pattern for several years.

I did make an effort, if you could call it that, by speaking with my neurologist about disease management through healthy living, but I didn’t make any of the changes I told him I would. Thankfully, he was patient with me to wait until I was ready to get onto a drug regimen to manage my MS.

Once on Copaxone and later Tecfidera, I managed my flare-ups. Any exacerbations I got tended to be mild compared to the ones I got off medication. I was still super stressed, not exercising, not eating well, and not feeling good. The medication worked overtime.

2014. Hampstead Heath, London, UK. I was on Copaxone at the time, but unmotivated to take care of myself. I tried several months before to live “healthy” for a while, but failed to actually do anything.
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Recovery after an MS Exacerbation

So you’ve had a relapse/exacerbation/flare up. Hopefully, you’ve already had the conversation with your healthcare professional about managing the flare-up. You may take high doses of steroids to reduce the inflammation, but you’re coming down from the drugs and looking at recovery. What does recovery after an MS exacerbation look like?

Like all things MS related, your recovery is going to look different from mine which is going to look different from someone else’s. Having some ideas of what you can expect and what you can do on your own might help plan your next exacerbation recovery.

I am not a healthcare professional so all that follows should not be taken as medical advice.

Relapse-Remitting & Recovery

With Relapse-Remitting Multiple Sclerosis (RRMS) there’s a chance of recovery after each exacerbation. That means, there’s also a chance you won’t go back to the way you were prior to the flare-up. After my second major flare-up when I was abroad, I never got my full feeling back in my right index finger and thumb.

When you don’t go completely back to the way you were before, it’s extremely frustrating. But there are some ways to manage your recovery as a means of self-care, i.e. taking back control of your body. These are forms of complementary care: suggestions to work in tandem with your medical treatment.

Because I have RRMS, I can only speak to what recovery looks like after each exacerbation. If you have Primary-Progressive or Secondary-Progressive, recovery is going to look completely different. What follows are based on my experience dealing with RRMS.

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MS Symptoms: Optic Neuritis

The very first MS symptom I experienced was Optic Neuritis. I woke up one morning in a hotel room unable to see out of my left eye after a stressful experience. I’ve talked about this particular symptom throughout the blog because it played such a significant role in getting my MS diagnosis.

From the time I’ve spent in online MS support groups, I’ve found that the majority of other people with MS received their diagnosis after experiencing the optic neuritis exacerbation. I imagine it is the shock value: waking up and suddenly having a blob in your field of vision? You have to pay attention to what is going on because it is literally in your face.

What is Optic Neuritis?

Simply put: it’s an inflammation of the optic nerve which causes a temporary loss of vision. It can be painful and is primarily linked with Multiple Sclerosis and a few other autoimmune diseases such as Lupus.

Symptoms of optic neuritis include:

  • Pain
  • Loss of vision in one eye
  • Reduced field of vision
  • Loss of color (colors are muted or vision is grayscale)
  • Flashing lights

Optic neuritis is primarily treated through steroids to help reduce the inflammation.

I cannot diagnose anyone online, but I can offer a suggestion to bring to your healthcare professional for discussion:

If you are experiencing loss of vision in one or both eyes and your otomotrist, primary care provider, or opthalmologist are unable to figure out what is going on, consider asking them to test for optic neuritis. I wish someone had told me to consider this option early on as it would have reduced months of confusing and frustrating tests and gotten me the necessary treatment sooner.

Canary in the Coalmine

While the L’Hermitte’s Sign is one of the first indications that I am really stressed out, waking up to an optic neuritis blotch in my field of vision means I have an exacerbation requiring medical intervention. Sometimes I get numbness in my limbs, but I know that I am in trouble when I cannot see or am losing vision in one of my eyes.

Prior to my diagnosis, I was completely unaware as to what was causing my optic neuritis flare-ups. I thought migraine auras, as I had migraines previously but no auras. I would eventually get a migraine and the optic neuritis would fade away, but I can imagine it was a coincidence.

Now, if I get the slightest blotch in my eyes, I immediately contact my neurologist so we can come up with a treatment plan. Sometimes we wait and see if it gets worse and other times I get on some steroids to help reduce the inflammation. Regardless, I know I need to figure out what is stressing me out to cause the initial inflammation episode.

Invisible Symptom = Lying?

Many people with MS have that story.

That story of: “but are you really sick or are you just lying for attention?” My optic neuritis gave me my first and hopefully the only story of ableist treatment by others.

It was prior to my diagnosis and I volunteered in graduate school over the summer. This position required my sight. No amount of accommodations would work: I needed to be able to read to perform my duties as a volunteer.

I tactfully told the people running the program that I could not volunteer and teach at the same time due to some health concerns. I couldn’t stop teaching, so I figured all unpaid work could wait until I was feeling better or at the start of the fall semester.

Because it was summer and I made plans prior to my flare-ups, I went to a concert with a friend and posted about it on social media.

I didn’t realize this caused a stir with those I volunteered for until someone unaffiliated reached out to me. I remember the conversation divulging how people said I lied about my health to get out of volunteering my time.

I was flabbergasted at so many people: at the person bringing this information to me; those in charge; and everyone unaffiliated with situation talking about how I was faking my health issues. My health issues were none of their business and they did not know how I got to the concert. I told the person who started the conversation that concerts do not require sight and I deserved a bit of a break from my health issues if only for a night.

This accusation of shirking my duties made me feel insecure about my health that I felt obligated to overshare with the program once I got my diagnosis. Up until recently, I would explain my issues with MS as a reason for not doing something.

I am at a point where I realize that I do not owe an explanation for myself or my health.

The Emotional Impact

Warning: talk of self harm ahead. If you or someone you know self-harms, please know you are not alone.


Now that I know how to treat this exacerbation, I typically go with the flow and it’s more of an inconvenience than anything. I am bothered when it happens, sure, but that has more to do with feeling frustrated that its happening in the first place.

But when I didn’t know what was going on, this symptom caused the greatest emotional breakdown I had prior to my diagnosis. I needed to see for school and work, I could do neither. I was terrified because the doctors were not providing me with any information or hope of getting better.

Each day, I would wake up hoping I could see out of my left eye again. Each day I woke up unable to see I grew more and more anxious and frustrationed with my body.

I remember taking a shower one day, in the middle of my worst optic neuritis exacerbation (I couldn’t see out of both eyes), completely frustrated over no answers to what was happening to me. I started bashing my head against the side of the shower wall because I was so angry at my body that I wanted to knock the sight back into my eyes.

Fortunately, Ash was there and heard the banging that he immediately jumped into the shower to stop me from causing any serious damage. I was lucky to not concuss myself or cause any lacerations. I just remember him holding me down to stop me from harming myself further and comforting me as I cried for myself.

It was one of my darkest emotional moments.

Even thinking about it puts me back into that mindset of abject hopelessness. That complete lack of control and confusion is indescribable. I hope never to be in that place again.

Once I was in the hospital after my MRI, I felt so much relief in finally getting treatment. An answer was secondary at that point, but I was glad to be on the road to receiving one. If you are interested in reading how I’ve learned to manage this symptom and my cognitive fog from Monday’s post, please sign up for my newsletter. I will be discussing both symptoms in Friday’s newsletter.


Featured Photo Credit: Amanda Dalbjörn on Unsplash