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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.


Please consider supporting the MS Mommy Blog by buying a cup of coffee. If you find my content helpful, a little support helps keep the blog going.

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A Test in Resilience

I am not complaining when I say it’s been a rough couple of months for me. I am just stating a fact. I lost Lytton, re-started a DMT with unexpected side effects, and recently dealt with a training setback. It’s been a test in resilience from October 2019 to February 2020. I think I am passing, but I am still in the middle of it, and I know my perspective may be wrong.

Initially, I planned to make this post about my running. I entered two marathons for 2020: one in March and November. The March marathon would be my first ever, after several years of running multiple half marathons. I made it a goal to qualify for Boston, my college hometown, despite my MS.

#GOALS

Qualifying for Boston is a multi-year goal. I am not fast enough at this point, and I am only able to get myself down to 9:15 minute miles for 3.1 miles. I need to get myself down to 8:09 or faster for 26.2 miles to qualify. The first step is to run a marathon to see if I can even run one, let alone train myself to such speeds.

Granted, training to those speeds wouldn’t be awful even if I never qualify for Boston. It’ll put me into competitive waves with local races, and gives me a healthy fitness goal. 

I chose a March marathon for my first because it’s the last of the season, locally, until the fall due to Southern temperatures. It was deeply symbolic because I ran my first half marathon at this race in 2013. It’s also a day before the 2020 Olympic trials. All signs pointed to this being a perfect test run on whether I could even finish a marathon.

But by mid-January, I recognized that I was in the middle of a massive setback, and I needed to listen to my body.

Running as Disease-Modifying Therapy

Before I delve into the first setback, I want to talk a little bit about the importance of running to me. I mention it in passing on the blog because I am of two minds about it. On the one hand, I recognize how fortunate I am to be doing it with MS. I know not everyone has the same freedom of mobility I do. I want to be sensitive to that. On the other hand, I want to show that mobility-impairing diseases, like MS, don’t have to stop you from being physically active.

I try to walk a fine line between being sensitive and promoting healthy living. This year, I wanted to explore what running means to me as I train for a marathon and work towards a balanced life with complementary therapies.

Running is my primary form of managing my MS. It is the umbrella that all my care falls under, whether it’s eating or stress-reduction. I am chasing a goal of getting faster in my races; therefore, I make healthier eating choices to fuel my body appropriately. The act of exercising lowers my stress and gives me meditative moments when I am alone. Running helped get me to a physical space where I think Tecfidera will be more effective.

I credit running for balancing my mental health. I know this isn’t possible for everyone, so I acknowledge my privilege. But once my mental health stabilized, I was able to make other changes in my life that benefited how I managed my MS. It is a form of disease-modifying therapy for me.

And then I experienced my first setback.

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Is More Better?

I fall into the trap of thinking more, newer, shinier is better. When a new phone generation comes out, I am counting down the days when I can trade my working phone in. If I am purchasing a new product, I always check to see when the company plans to release an updated version to avoid buyer’s remorse. One thing I dislike is buying a new gadget and finding out I could have waited a week for a newer one. Buying multiple devices to do one thing in my kitchen happens. I sometimes feel more is better.

Having a child changed my perspective. When the house started to get cluttered with toys, I realized more is not better. Less really is more. 

It was at the height of the Kon-Mari craze that I realized clutter was getting in the way of my satisfaction. But it wasn’t just physical clutter; it was mental clutter as well. I spoke about this in my two-part post about toxic relationships.

Sometimes I jam up my physical and mental space with a lot of stuff to feel distracted and in control. Upon reflection, I realize I am more out of control with the more stuff I accumulate. 

The Drive For Things

It’s a much longer post to dissect the human drive for “things.” Rather than doing a deep dive into psychological research on a macro-level, I want to reflect on my own experience accumulating “stuff.”

I think I, like many other people, buy into the idea that more is better and better makes me happy. It’s necessary to make that statement in the present tense because it is something I am currently working on. For example, I am attending a wedding soon. I feel a cultural drive to go out and buy a brand new dress for the occasion. I have at least one acceptable dress, yet I still feel this strong urge to get a new one.

Why is that? I honestly can’t explain it, and in light of recent celebrity events, purchasing a new dress isn’t environmentally sustainable.

I can’t help but feel like I am committing a social faux pas if I don’t buy a new dress. The bride doesn’t care; the groom doesn’t care, and no one but myself cares over this relative trifle matter. Yet the drive for more is there.

This drive for things is standard, at least for a person living in America. Our country grounded itself in Manifest Destiny, the journey forward, and for more resources. I do not imagine a cultural push towards accumulation; it is there, telling me I am discontent with what I have. Western culture, at large, thrives on materialism. 

Each time I want a newer phone, a newer kitchen gadget, a newer dress, I am engaging in that cultural drive for more stuff. But what happens when I get what I want?

According to science, wanting is all well and good, but our reasons for wanting material goods is problematic. We want things because we think that a new item will make us happy. Often, it does not because it does not solve the core issue: what makes us discontent. My wanting a new dress is stemming from a desire to show off something new. But will that make me happy? Probably not. 

Instead, I will feel bad for wasting resources on an article of clothing that I will either wear once or rarely. 

Limited Resources

With a chronic illness, we are limited in our resources. For some, our financial resources are low due to care costs, and for most of us, our mental resources are little due to the disease. 

We do not have the space for clutter. Yet, somehow I can convince myself a second slow cooker will be helpful around the house. Granted, it was an Instant Pot, and it has been beneficial, but now my older slow cooker is taking up precious space. 

Having extra things causes me anxiety, and that’s normal. I feel anxious every time I walk into the house and see something out of place. I am not looking for pristine perfection in my house, but not feeling overwhelmed by items would be nice.

It is the same with my mental clutter. When I have too much going on in my mind, too many things “to-do,” worries about social mistakes, or just general messy thoughts, I get anxious.

I believe, for me, accumulating stuff and thoughts are ways to control the environment around me. I’ve talked about my need for control before and how illusive control is in life. If I keep buying stuff, maybe some of those items will make my life easier. Often, they end up collecting dust because I go back to my old way of doing things. I end up wasting time, money, and learn nothing about how I don’t need to fix something that isn’t broken.

If I am looking to be more efficient with something, chances are I don’t need a new item, but can be creative with what I already have. When I am more resourceful, I find pleasure in the challenge and a solution that works.

Likewise, I clutter my mind by distracting myself with reading, gaming, and wasting time online because I don’t want to be alone with some of my thoughts. Occasional distraction is good, but we’re talking about spending days trying to keep my mind so distracted to avoid dealing with an issue. 

Reflecting on Moderation

So far, the best solution I’ve found for myself is to begin stripping down my life. I realized this in December 2019, before the Christmas Holiday. A holiday that embraces material excess, I recognized the need to move things out of the house before bringing in new stuff. We never excessively celebrate Christmas, but bringing in two new items is still two new things that need space.

Ash and I started to assess what we needed and what we could live without. Unfortunately, the first section was our books. We have hundreds of books that we don’t read, but take up space. We stripped down most of our collection, and I bought a Kindle PaperWhite. Another item! However, I can access most of the books I purged and utilize the local library online. I traded hundreds of books, hundreds of pounds of items, and multiple shelf spaces for a small, lightweight gadget. 

So while I still engaged in materialism, I did so in a smarter way. Rather than buying a new book that I may not read, I can borrow it when I am ready to read it, and it remains in a digital space. Since taking this small step towards moderation, I feel more relaxed. I have more space to store other items, and I no longer feel the need to acquire more physical books. 

I am living in one extreme, with too much stuff, and I am taking small steps towards moving towards the middle. I feel more in control because of it. I think because I am decreasing my desire to chase after things and reflecting on an intelligent way to spend my money. 

Likewise, with my thoughts, I am forcing myself to confront them more often. I still distract myself, but I make an effort to tackle a “to-do” item or soothe a negative thought at least once a day. The more I do in a day, without feeling overwhelmed, the better I feel. 

I am becoming balanced because I am learning to embrace moderation and appreciate the value of “less is more.”

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva


embrace-moderation

Embrace Moderation

Let’s be honest for a minute. It’s hard to embrace moderation sometimes. Some days you want to pile fried food on top of fried food, so you have a mountain of crispy, oily, golden goodness. Or you go out with your friends and decide “I’ve been good with my drinking lately, let’s just go wild and worry about the consequences later.” After each of these incidents, you may say to yourself, “I am eating nothing but salads for the rest of the week,” or “I am never drinking again.” 

You’ve just swung to extremes.

Have you noticed that when you are amid an extreme, how unsettled you feel? As you pile on another onion ring from the buffet, there may be a voice in the back of your mind saying, “maybe you shouldn’t do that?” Or when you accept that third shot, that voice says, “you’re going to regret this in the morning.Likewise, that voice is back there when you are piling on the salad greens, “this is gross, and I am sick of salads.” Or, “I wish I could have just one drink because that cocktail looks delicious.

I think our bodies and minds desire moderation. Having some restraint in our decisions leaves us feeling balanced and in control. When we ignore or drown out the voice suggesting moderation, we throw everything off balance in favor of extreme behavior. Sometimes we don’t recognize it as extreme.  

Moderation isn’t just Physical

In the above examples, I highlighted the physical side of moderation. It’s easy to show the swing of excess to prohibition with food and drink. But consider this: we do the same with emotions and our thinking. We can allow our feelings to overrun our perspectives, so we act out without thinking. Embarrassed or ashamed, we may try to steel ourselves against any future emotional outbursts. We vacillate between overly emotional to stone cold.

Or, we allow specific thoughts to overrun our minds until we are thoroughly stressed out. Then we swing to escaping into watching tv, playing games, or finding some other way not to think.

When we experience uncontrollable thoughts/emotions and move to hyper-restrained thoughts/emotions, that leaves us unsettled just as the physical extremes do. We become off-balance and feel more out of control, despite believing we are getting everything under control.

Remember the last time you were in an “extreme” state? What caused you to swing in the opposite direction, and how did you feel when that happened? Often, the event that triggers the swing is trivial, but our distress is so intense that we over “correct.”

Now think of the times where you felt balanced. It may be a specific area of your life, not all of it. Imagine how you might be deflecting situations that generally cause you to swing back and forth. Do you? Or do you brush these incidents off and keep moving, staying in balance?

That’s moderation, and it’s vital to bring moderation into all aspects of your life to bring yourself more in balance.

Embrace Moderation

In short, moderation couples with mindfulness. I wish I could escape talking about mindfulness, but as I deal with my chronic illness and life changes, I’ve found that being mindful keeps me on the path of moderation and contentment.

Over the last few months, I’ve been working through the lessons that moderation teaches me. I want to share what I’ve learned, what I am currently learning, and what I hope to gain from these lessons for the rest of February.

This year is going to be a year of extremes, so learning to embrace moderation on a mental level will help protect me emotionally and physically for what’s to come. I want to share this insight at the beginning of the year, so understand where we go for the rest of the year.

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva


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Balance & Harmony in Chronic Illness

2020 is now upon us, and that means a new blog theme for the year at MS Mommy Blog. 2020 is the year of vision: think about the importance of 20/20 vision, and the phrase “hindsight is 20/20.” It is also a year of balance, something that happens once a century. With that in mind, I wanted to focus this year’s theme on balance and harmony. While the year itself holds no power, we can use it to remind ourselves of the importance of incorporating balance and harmony in our lives with chronic illness.

I feel that focusing our energy on personal balance and harmony is timely considering the surge of global unrest and the role this year plays in American politics. I promise never to get political on this blog, but what I will advocate is finding ways to give yourself a break when the news gets to be too much. 

2020 is a year geared towards making a commitment to yourself and finding what keeps you centered in the face of politics, painful news stories, your health, your professional life, and your personal life. There’s a lot to handle this year, so now is the time to say, “I can handle it healthily.”

Let’s take a quick look for what to expect for the rest of this year.

Looking Ahead

In the coming months, look forward to posts on the following themes:

  • Moderation in our habits & mind
  • MS Awareness
  • Further examination with self-compassion in the face of physical limitations
  • Learning to balance strong emotions
  • Working through mental imbalance and bringing that into harmony
  • Embracing self-acceptance
  • The importance of work-life balance with a chronic illness
  • Embracing self-care for overall satisfaction
  • In the face of uncertainty, finding internal balance
  • Healing from disappointment and external turmoil
  • What is inner peace and how to find it

Balance & Harmony in a Chronic Illness

So what is balance and harmony with a chronic illness?

I am hoping that this year will help answer that question. I have my ideas of what it looks like for me, but as I do an in-depth examination into what others say on the matter, I might find my answer changes. I want to spend this year exploring this theme not just for myself, but for my readers as well.

Like last year, I will be chronicling my journey as I learn more about myself and what helps me manage my MS

New Features to the Blog

2020 is a year of different opportunities for me that I want to share with you. I plan on having several new features that run weekly or monthly on the blog. These include:

The weekly newsletter will be revamped shortly, so look for new newsletters in the coming weeks. If you haven’t signed up for it yet, please do so now!

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.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Canva