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


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


MS-Mommy-Blog-Update

300th Post & Blog Update

It’s the 300th MS Mommy Blog post! I didn’t imagine ever reaching this point when I first started my blog nearly three years ago. I assumed I would lose interest. A big thank you to all my followers. I appreciate all of you. In honor of this milestone post, I wanted to provide some interesting facts about the blog and an update about the future of the MS Mommy Blog.

Interesting Facts about the Blog

These are some of the current insights I wanted to share. It’s all modest, as I am a small-time blogger with limited resources. But I am proud of it.

  • The current most popular post is “Early Childhood Education Blogs
  • The most popular post of all-time is “The First Couple of Days…” with 390 total views
  • March is always my most popular month (MS Awareness)
  • I average between 1,100-1,200 words with each post
  • I’ve re-branded the blog three times: tracking my health changes, focusing on motherhood, and finally healthy living with a chronic illness
  • The three top countries of visitors: United States, United Kingdom, and Canada

The Future of the Blog

So while a 300th post is something to celebrate, I am finding it harder to keep it up as I would like. Partially because the blog costs a lot financially, mentally, and physically for me to maintain.

I put a lot of work into writing each post. I am providing a service to people struggling with a chronic illness, specifically MS, with each post. I want people recently diagnosed to see there are options. MS and chronic disease is not a death sentence. It’s a chance to embrace resiliency and learn to adapt to a new normal.

This is a service I am providing for free. The ad revenue on my blog will not payout for years. Maybe this means that I am offering a service nobody wants, and I understand that. I still want to provide it in some capacity. But I cannot do it the way I’ve been going. 

I struggle to ask for money, and I tend to undervalue my work because of it. I know there are options for me as a blogger, but I do not have the time to pursue them. I had a Ko-Fi page at one point but never pushed it because I struggle to ask readers to help.

With that said, if the financial support of the blog does not change, I must reconsider how much time I put into the blog. With all the significant changes I’ve dealt with these past few months, I recognize that I may need to re-prioritize my time.

What this means is the frequency of my posting may go down to once or twice a week. I am hoping to maintain consistency with the content themes, though I feel like February is a little haphazard. If the blog does start to bring in more income, my posting frequency will be more consistent, reflecting demand. 

So, if you ever found my writing useful or comforting, please consider contributing a few dollars through my Ko-Fi page. If you are unable to donate, please share my blog whenever a post resonates with you to friends and family. It helps my blog grow.

All of this is a good thing. I am not sad, and I am not disappointed. I am honest with myself and with you about my capabilities. I love writing what I write, and I plan to continue to do so, it just may change over the next few months.

Thank you to everyone who’s followed my blog from the beginning and to all the supporters I’ve built along the way. I appreciate every one of you even if I don’t say it or respond to your comments. Here’s to another 300 posts (even if it takes five more years).

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


a-test-in-resilience

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.

Read More

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