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.


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.

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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A Return & Refocus

I spent the last month prepping and figuring out how to manage our new life in self-quarantine. Learning to adjust with a new normal? Something I’m used to with a Chronic Illness. I got this.

So far, we stayed safe and healthy. We are minimizing travel away from home as much as possible. I’ve reduced our movements more and more, stretching out the time between grocery store trips. 

I am currently going on Day 8 since the last store trip. I am hoping to make it to at least April 20 before needing to go back out again. We’re even minimizing deliveries from major online retailers.

It hasn’t been easy, and because of needing to make adjustments, it took me a while to settle into a new routine that included blog writing. I am hoping that I will be able to blog more frequently now that I have 1: more time and 2: more time.

Keeping Busy in a Pandemic

Keeping busy and focused at this time helps. I’ve taken advantage of the time to work on a couple of my goals for 2020. Back in December, I wanted to figure out a better daily schedule for myself. I’ve talked about finding workable time-management strategies before, and now was the time to hone it.

I understand that this is a unique situation. The daily schedule I set up for myself may not be feasible once we start getting back to it, but maybe if I do it long enough, I will find a way to adjust when things return to normal.

What I did was this: create a color-coordinated block schedule for myself, detailing all the different tasks I wanted to each day of the week. Have I stuck with it 100%? No. But I do try to stick to it as much as possible and be gentle when I get taken away to do a different task. That is key, and this schedule is a guideline to help keep me focused, not something to stress me out.

I also settled on a weekly to-do list. Pulled from Day Designer (not a sponsored link), I make adjustments to the Weekly Planner design every Monday and use that sheet for the whole week. I put down to-do items for the appropriate day as I think about them and then work off of that list for the day.

I find that this keeps me super productive throughout the week. When I feel productive, I feel better, mentally, and emotionally. I still have my moments where I feel particularly stressed over everything. Still, I do feel like I am making the best of the current situation. 

Going with the Flow

If the global slowdown reinforced anything with me, it’s the need to go with the flow. I was unable to focus on my writing during the last month as I prepped my family, managed my health, and figured out what we needed during this time. I decided that I was okay with this because I had to be. My health and my family comes first, and if it meant temporarily sacrificing something, then I would do it

I could either fight what was going on, or I could keep moving forward.

Fighting would mean more stress and frustration. Plus, what is there to fight? My favorite restaurant cannot do dine-in, so why be mad at them? Holding onto that anger of the injustice of it does me no good and only increases my stress. 

When I accept that I am not able to go where I want to go, run with who I want to run with, and do things as I usually do, I feel a less intense emotional pull. 

Yes, this is a frustrating situation. Yes, having feelings of anger are entirely valid and reasonable. But holding onto those feelings without providing a productive outlet only serves to poison me, not help me. Accepting that I have no control over this situation grants me a modicum of control. 

Best Laid Plans…

As a general blog policy, I like to have a theme for the year and sub-themes for each month. It keeps me focused, but allows me to explore different facets of each topic. I had ideas for balance and harmony in 2020, but when the pandemic hit, all was cast aside. I couldn’t focus on themes, research, and writing while preparing.

Now that I’ve found my stride, I still can’t. Not because I don’t want to, but it doesn’t seem appropriate. How can I write about balance and harmony when the whole world, without hyperbole, is out of balance? It looks rather privileged and lacking self-awareness.

So I’ve had to take a step back, for the time being, scrap my original plans and refocus for the next few months.

A Temporary Refocus

For the next few months, I am going to go without a theme. Instead, I am going to be writing about what I am thinking, feeling, and doing at this time. Both as a parent and as a person with a Chronic Illness. I am going to maintain my general position: self-care, self-compassion, and focusing on health.

I am not going to hide from what is going on, but rather embrace it. Some posts will be directly related to the pandemic, and other posts will be pandemic adjacent. As I said above, it’s essential to go with the flow, which is what I will be doing for the time being.

I hope you all are staying safe and healthy at this time and that you do what’s best for you to maintain your mental and emotional health.

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.

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


Self-Generosity

This post was originally published in December 2017. I have updated this post.


At this time of year, life can get overwhelming. There are social, familial, and professional obligations that all demand our full attention. While these demands don’t go away, they do seem more urgent at the end of the calendar year.

It is easy to get caught up in these demands and struggle to prioritize them (and sometimes they don’t allow for reasonable prioritization). It leaves a person feeling frazzled, burnt out, and hating the holiday season.

That isn’t the case for everyone, but I am sure we’ve all had moments in life where we would like to skip straight to January 2nd and move on with our lives.

We’ve run into others who feel this way: try going into a mall around this time of year. I’ll just leave it at that.

Piling on top of the usual life demands are calls for generosity from various organizations at the end of the year. Commercials are filled with pathos-based appeals to get the viewer to donate to multiple causes. Religious leaders ask their people to open up their wallets and give money, toys, or time to those who are less fortunate. Stories of tragic events lead to calls for donations of food, items, and blood. Passive social pressures increase with social media pages flooded with posts from others announcing their generosity.

It gets incredibly overwhelming.

The issue is that when we think about the term “generosity,” we think about it as giving to others. But look at the definition of the word:

Generosity
nounplural generosities.

1. readiness or liberality in giving.
2. freedom from meanness or smallness of mind or character.

3. a generous act:
   We thanked him for his many generosities.

4. largeness or fullness; amplitude.

Dictionary.com

Nowhere in the definition does it specifically define generosity as an act we give to others. It is an act of giving and love, but with no designated recipient.

When we get caught up in the minutiae, we completely forget about the importance of taking care of ourselves. Societal pressures states we should be generous with our time and care for others. Still, it’s tough to care about another person if we don’t take care of ourselves.

If we care for our own needs first, we can be more useful for others. And when everything becomes too overwhelming, we might be able to see through it with less stress and frustration.

The Importance of Self-Care

I saw this quote posted on a friend’s Facebook wall, and it was the foundation for this post. I kept the original formatting:

self care isn’t always lush bath bombs and $20 face masks. sometimes, it’s going to bed at 8pm or letting go of a bad friend. it’s forgiving yourself for not meeting your impossible standards & understanding u are worth it. self care isn’t always luxury, but a mean for survival

Cheerful Nihilism

Self-care quotes, personal revelations about self-care, articles expounding self-care all make the rounds on a reasonably frequent basis. Some of them connect with us and others we either ignore or go, “yeah, if only it were that easy.”

All the wisdom in the world about self-care/self-generosity does not mean anything if it doesn’t connect with you. And let’s be blunt about the quotes/revelations/articles: they aren’t saying anything new. It’s all steeped in common sense.

We just need them to remind us every so often.

I am not an expert that can espouse pearls of wisdom of how to better take care of yourself, but I do recommend that you be more generous to yourself. Allow yourself to be more selfish.

But this isn’t the same when we think about being selfish. It’s is a loving form of selfishness.

Recognize that you need to take care of yourself before you can care for others. The Mayo Clinic recommends that caregivers take care of themselves first before they take care of others. They acknowledge that a person must be selfish if they are going to be an effective long-term caregiver.

Everyone is a caregiver. For some, it’s for another person; for everyone, it’s themselves. We all must care for ourselves.

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Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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