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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Featured photo credit: Canva

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Cleaning & Schedule Printables

Wrapping up this week on schedules, I wanted to share some printables I created for our household to help effectively manage our time. I threw in an extra bonus printable for the bloggers among us: how I try to schedule my blog work.

Cleaning Printables

Read the corresponding post here.

Daily Cleaning Schedule: There are tasks that need to be completed all the time, so I broke it down so there would be a room/cleaning task to be completed each day of the week. This prevents spending all day cleaning the entire house but maintains the house a little at a time. For example: every Monday, I clean the kitchen in the afternoon, so I wrote it down in the corresponding spot.

Monthly Cleaning Schedule: Just like the “Daily Cleaning Schedule” there are certain tasks that need to be completed throughout the month, but not every week. I scheduled a deeper clean of the bathroom every second Sunday of the month for example (versus a quick wipe-down of the high-traffic areas).

Month-to-Month Cleaning Schedule: This is where I get a little over-planning: I break down the tasks that need to happen each month throughout the year. These are more general nature, but I like reminders that every March and October there’s a local electronics recycling drop off one day on the weekend. By placing this reminder in the corresponding month, it allows me to check to find the actual date. I also put down what decorations I want to put up and when I want to take them down for the household.

Daily Schedule Printables

Read the corresponding post here.

Daily Agenda (Personal): I broke it down with the top priorities for the day and kept a loose agenda rather than writing out all the times (some days there just isn’t much to do). I also provided a space for tasks that carried over from the day before, additional to-do’s, and a “to buy” list because I am always needing to remember to purchase something.

Daily Blog Schedule: This is only one page in my expansive printable I created for my daily blog schedule. I will probably devote a whole post to this printable some time in the future, but I wanted to share a general page for those looking to start organizing their blogging. I try to put in the daily reminders/to-dos along with collaborative workspace. The schedule has a dual work area for blocking out time to work on the blog next to personal activities/requirements.

Please let me know what you think about these printables in the comments below. If you choose to use them, make sure to credit me and do not redistribute without my permission. Contact me here if you would like to make a request.


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Organizing the Family Schedule

Creating a schedule for yourself is one thing. But scheduling the whole family? It can be like herding cats, particularly if several members of the family have different schedule styles or rarely check the family calendar.

In our house, Ash and I approach scheduling differently. While we have a shared calendar, how we maintain it differs. This doesn’t cause conflict, but we had a conversation a few weeks ago over how I schedule things does not work for him and vice versa. It was an interesting conversation and gave me more insight into how his internal logic works.

Communication is key to any relationship, so setting up a family schedule that everyone has access to and can update helps keep everything straight to avoid conflict and double-booking.

Analog or Digital Calendars: Why Not Both?

We have several different ways we highlight the month’s schedule in our household: analog and digital. In our closet, we have a hanging whiteboard that I update every month with the main activities going on in the household. Ash’s roleplaying games, Jai’s playdates, my appointments.

This helps me plan out my day as I am getting dressed. Do I wear nice clothes for that appointment/coffee date? Or do I spend the day in comfortable clothes because we’re staying home all day?

It allows for quick reminders and conversations that we might need to have in the morning before Ash leaves for work or I go for my morning run.

Digitally, Ash and I have a family calendar that we share together that contains the events pertaining to the family as a whole. Additionally, we keep separate calendars for our own activities, but we mutually share them so we’re aware of each other’s schedules.

Ash put down a reoccurring event in his calendar that highlights two days each week he can help me out should I need it. That way, if I am in the middle of setting up an appointment, but know that Ash will be the only one to watch Jai during that appointment, I can schedule it for a day that won’t conflict the most with his work schedule.

Likewise, Ash knows when he’s able to schedule is medical and social events around me because he can see everything on the family and my personal calendars. Once Jai is old enough, he’ll gain access to and control over his own calendar which will sync with ours so he can be responsible for his own activities.

It seems like common sense, but I’ve seen in several different parenting forums about the struggle of maintaining a common calendar between partners and children. It can be hard to set up, but if using a digital platform, easy to maintain.

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Creating a Productive Schedule

Next to maintaining a clean house, having a daily personal schedule helps keep everything running smoothly because I love efficiency.

Ash will tell you that I get annoyed in the store if other customers navigate the aisles inefficiently and interfere with my shopping experience. Likewise, when I feel inefficient in my day-to-day routine, I get frustrated with myself. I am constantly trying to figure out the best way to manage my schedule in order to get the most efficiency and productivity within my day.

Having a toddler makes this doubly difficult because I have to be mindful of his needs and flexible to his own schedule. If he refuses to eat a meal when it’s time to eat, that can throw the day off because I will have to make sure he’s fed when he’s ready an hour later.

MS & Scheduling

With MS and any chronic illness that has some sort of energy or movement inhibitor, there are a limited amount of hours each day a person has to get things done. Those hours aren’t guaranteed because of the nature of the illness, therefore you have to account for the possibility of spending the day in bed and being okay with that scenario.

I’ve mentioned how important scheduling can be when dealing with children and MS. The key is to be mindful of when I have the most natural energy (un-caffeinated and no early morning exercise), what I want to get done during that period, and how I want to get it done.

My reasoning for this mindfulness:

  1. Knowing my daily natural energy peaks provides a baseline for the most I can expect to get done without any “outside” help. Drinking my morning cup of coffee or going for an early morning run/yoga session give me energy boosts that may not be there every day. If I set my daily goals based on my natural energy when I have days with an energy boost, I feel more productive which might help me get even more done.
  2. MS has forced me to prioritize my life where I have to set 3 major goals for the day during my high-energy periods. The first item is the most important where the third can be pushed back to tomorrow’s top item. Anything on my list that I complete beyond that helps feed the productivity ego boost.
  3. Figuring out how I am going to get something done is equally important. With my MS and a child, simply stating I will sit down and write a bunch of emails doesn’t cut it. I have to squeeze communications in while Jai is asleep or decide to multi-task laundry while I clean the kitchen during nap time.

Additionally, being mindful of my energy valleys is important. I know that around noon I start to get fatigued and after Jai eats lunch I am ready to lay down for a nap or rest between 2 – 4pm. On days where I am out of the house or so busy with a project that I miss my rest means that Ash has to take over parenting as soon as he gets home from work until it’s time to put Jai to bed.

I try to not overdo it, but I do find that because of the unpredictability of MS, it’s like a light switch. I will be fine, fine, fine, and then something flips and I am immediately exhausted with no warning. I try to be aware of any warning signs so I can rest before I overdo it, but most days I am too busy to pay attention.

I am still not sure if I have any warning signs.

Below are my tips for how I create an effective schedule that works with my MS:

  • Take a week or two to track your natural schedule. This will include your energy peaks and valleys, what you do when, and how you feel when you do it. Try to be mindful of whether or not you take an energy boost and how that affects your energy (medication, coffee, exercise, etc.).
  • Analyze your schedule and see if you can find a pattern. This is difficult with MS because each day can be completely different, but you might be able to see that around 10 am you have more energy than you do at 2pm.
  • Try to adjust your new schedule to reflect these high energy periods and schedule a rest during the low energy ones. Prioritize the more important items/appointments during a peak period of your day and not stress if the less important stuff doesn’t get accomplished until tomorrow.
    • If you work outside the home, napping at your work may not be a possibility, but finding a quiet space where you can sit with your eyes closed and undisturbed for 10 minutes might be something you can fit in. Scheduling meetings and important projects doing your high-energy periods work as well.
  • Embrace the productivity energy boosts when you get them. I find it invigorating when checking items off my to-do list. Those little boosts can be so energizing that it feeds into itself to get more done. Just be mindful to not overdo it and wear yourself out.

I think these tips are helpful for people without MS or an illness that interferes with energy levels, but it wouldn’t be my go-to set of suggestions for them. What follows are some broader observations/techniques that have helped me boost my productivity.

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