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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What It’s Like: Taking Tecfidera

For January 2020, I committed myself to get back onto MS Disease-Modifying Therapy (DMT) or Disease-Modifying Drugs (DMD). My rationale is that while I am managing my MS well without medication, any DMT provides an insurance policy against disease progression. My healthy living changes were always with the end goal to work as a complement to my DMT. And as a blogger, I wanted to share what it’s like taking Tecfidera as a DMT.

Part of the reason why it was so quiet in January is because I focused on getting onto Tecfidera, managing my self-care, and my regular mother duties.

What follows is a brief introduction to Tecfidera, my experience getting back on it, a comparison to when I first took Tecfidera in December 2014, and my final thoughts on the whole experience.

As per my medical disclaimer, I am not a medical professional, so please take what follows as my personal experience and anecdotal, not scientific fact. If you are on Tecfidera or consider taking Tecfidera, you may find your experience varies from mine. 

The Medication

There is information on the website about Tecfidera, so if you are thinking about taking it for your MS, I recommend going directly to the source for your research. I wanted to highlight information that related to my experience.

Tecfidera is a DMT that is believed to “modulate the immune response to be less inflammatory and […] could be protective against damage to the brain and spinal cord.” It helps keep your body from inflammation, a common problem with MS exacerbations. Biogen isn’t able to pinpoint what about the drug works, just that it helps reduce the occurrence of exacerbations. In a 2-year study, 27% of the people on Tecfidera found their exacerbation cut by 47% (compared to a placebo). 

Note: Biogen only links to two two-year studies.

Some of the known side effects include flushing and stomach pain, usually within the first month of starting the therapy. Flushing can occur anywhere but typically face, chest, and hands. Stomach pain can range from mild discomfort to physical distress. Both of these side effects decrease the longer you take the medication. After a month, the stomach pains typically end, and within several months, the flushing stops. 

Tecfidera is also known to bring on Progressive Multifocal Leukoencephalopathy (PML), a disease that attacks your brain and leads to death if not treated. The JC Virus causes PML. Most adults carry the dormant JC Virus with no ill effects, but taking Tecfidera is known to reactivate the JC Virus. Unfortunately, three MS medications do this. Fortunately, getting PML is rare.

To combat this, Biogen recommends getting frequent blood tests to check for JC Virus antibodies. If you reach a specific number of antibodies in your blood, then there’s a chance you have PML and should stop your DMT immediately. If your prescribing doctor does not recommend regular blood tests, please ask for them.

There are more side effects, warnings, and suggestions related to Tecfidera, so I recommend you check that out here.

Biogen provides patients with a tapering pack when you begin the therapy. This pack includes fourteen 120-mg pills: take one 120-mg pill twice a day for seven days. It also consists of a container with 240-mg pills, which is the normal dosage: you take one 240-mg pill twice a day for the rest of the month.

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Reflecting on Life Before a Diagnosis

My MS diagnosis was one of the best things to happen to me. I hate admitting this because it means I needed a chronic illness to shake me out of complacency. I am one of those people that needs to be smacked in the face, hard, to get an important message. I know this because I’ve reflected a lot on my life prior to my diagnosis.

Hopefully, I learned the lesson to listen more closely to life before it needs to hit me with another big smack.

I think it’s important to acknowledge and honor our life before the diagnosis. It’s so hard to look back at that time: seeing how capable we were, what we could do, what we took for granted…

I wanted to highlight some of the thoughts I’ve had while I’ve self-reflected on my life before my MS diagnosis. Towards the end of the post, you’ll find some of the same questions I asked myself to get you started.

Unhealthy Before the Diagnosis

To say that I was unhealthy prior to my diagnosis is an understatement.

I was unhealthy in body, mind, and emotionally speaking. I will primarily focus on the negative aspects of my life in this section. As I mentioned last Wednesday, self-reflection takes us down paths we would instead not acknowledge. I have a lot of pain I carry around in my life, and I’ve found what I’ve done up to this point has not worked in effectively managing it. I noticed looking at the origins of the pain helps me begin the process of healing. I am able manage situations differently, in a mature manner, and manage my MS until I am ready to get back on medication.

I broke down each section of my life where I did significant self-reflection.

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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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Stress and MS



Stress and MS.

These two go hand-in-hand. Without one, you wouldn’t get the other. Stress is a universal problem, something everyone deals with at some point in their life. Sometimes it is good, it motivates us to push through a problem for a solution. Other times it can hinder us and negatively impact our health.

I’ve talked about stress multiple times on the blog, but I knew that for MS Awareness month it deserved its own post. Stress plays such a big role in coping with MS, that for some of us, it induce our initial symptoms.

What is Stress?

Experts talk about stress on the morning talk shows. We complain to friends about it. Universally, we know and understand stress. But physiologically, what is stress and how does it affect someone who isn’t suffering from MS?

Stress is the body’s response to changes in mental, emotional, or physical changes. While the body is designed to handle stress, too much can trigger a negative physical reaction. If enduring a period of long and extreme stress, you are more likely to get sick. Your body starts to work against itself: ulcers, headaches, depression, anxiety/panic attacks to name some conditions induced by stress.

But it’s not always a bad thing.

Stress as a Positive

I firmly believe in good and bad stress. I thrive on positive stress: working on an important personal project and working up to the deadline to complete it.

Stress is one of the main drivers to get me to write as much as I do for the blog. It keeps me on track and keeps me posting.

I find that it’s such a major motivator in my life: I am freaking out to complete something, but I feel so productive once it’s accomplished. Turns out that “good” stress is a thing: it’s also known as eustress. Eustress we know we can handle and it’s usually short-term. It’s not necessarily easy to handle, but it’s manageable and can be used to drive us forward.

It’s what helps make an effort towards self-improvement.

Stress as a Negative

When we think about stress, it’s usually negative. It’s what causes us to freeze and feel burnt out. It’s hard to work through and can leave us feeling tense and angry.

This sort of stress is the kind that shortens your lifespan. It’s the kind that you have very little control over. When life throws hurdle after hurdle at you, and there’s no way to get out from underneath it, it’s this form of “distress” we experience.

This distress is where morning shows stake their segments upon. We buy books, browse blogs, pin ideas, and take classes all trying to cope with the distress we experience. We want to get rid of it because of how uncomfortable and miserable it makes us feel.

Unfortunately, we have very little control over when it ends and what it does in our lives.

Stress and MS

I spoke with my neurologist a year or so into my diagnosis and mentioned a potentially stressful situation. I asked him about how this situation would impact my health and my MS.

“Negatively,” was his response, “ask [those involved] to knock it off and do you want a prescription to give them?”

We had a good laugh over the absurdity of doing such a thing, but it got me to thinking. I was still in the middle of a stressful situation with graduate school and I wondered if it was contributing to some of the “secondary” MS symptoms I experienced: memory fog and fatigue.

I was not wrong: stress does lead to flare-ups. Curious enough, having MS (or any chronic illness) can cause stress too. It turns into a vicious cycle: you worry about the disease, the disease acts up, which stresses you out even more.

Exacerbations Induced by Stress

This study, published in 2004, looked at all the studies associated with MS, stress, and exacerbations over the period of thirty-eight years. They found a connection between stress that increases the chances of exacerbations with those diagnosed with MS.

If you have MS and found that your exacerbations or just your normal symptoms get worse when coping with a stressful situation, you aren’t imagining it. I personally found relief in knowing that managing my stress was a way to lower my chances of getting an exacerbation.

I understand that I am in a unique position to be able to manage my disease to lower my chances of an exacerbation. Not all people with MS are able to do so, if at all. There are days where stress gets close to causing an exacerbation, but I am able to recognize what is happening to help slow everything down to avoid it.

The Emotional Toll

Anecdotally, I can say for certain that extremely stressful situations, particularly relating to my personal life, increases my chances of getting an exacerbation. I was shocked at how quickly a flare-up appeared when I was in the middle of an extremely stressful moment and my arm started to go numb. Normally, I wake up with the exacerbation. It doesn’t literally happen before my eyes.

Thankfully, when I resolved the situation, the numbness went away within a day.

What’s most annoying about stress is that I have to plan my life around it. I have to take it into consideration when making major decisions. Will this freak me out? Will this bring on an exacerbation?

As I mentioned in my posts about toxic relationships, I’ve had to learn to be okay with cutting toxic people out of my life because of the problems the relationship induces. It’s discouraging when I have to manage relationships for my MS because there’s always this fear of lacking compassion on my part.

I’ve had to learn how to deal with feeling selfish which is always an uncomfortable place to be in.

Managing my stress is emotionally draining and stressful in itself. Later this week, I will discuss how exactly I manage it. Hint: self-compassion is involved along with learning to no longer care.


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Featured photo credit: Leah Kelley from Pexels