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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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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Embracing Big Changes in Life

At the end of October, I wrote about the prospect of losing Lytton to a mysterious illness. I had hoped to get more time with him as we thought we had a few options to manage his health. But towards the end of November, we had to do the compassionate thing and end his suffering. I learned a lot about embracing big changes in life during that time.

While I consider myself fortunate to have a few weeks to prepare for it, I am still in shock over the quickness he went from healthy to terminally ill. From the first sign of his illness to when we said goodbye was a month and a half. I prepared, but it’s hard to move that fast for such a substantial change.

Yet, significant life changes happen all the time. Our diagnosis. Buying a house. Losing a loved one. Finding someone new to love. The changes discussed in this post are the ones completely out of our control.

Change happens. Sometimes we can prepare ourselves for it, but often we cannot. What we can do is take the time to embrace the change. Regardless of whether you consider the change positive or negative, it’s going to happen regardless of your wishes. Rather than fight it, we find a way to work through it.

How Can Change Help You?

Change can help us, even if it’s unwelcome. I don’t know when I will reach the point where I can sincerely say losing Lytton helped me. Each day, I go through all the stages of grief as I try to move through my new normal.

Yet, I admit that losing him tested the effectiveness of the wellness journey I’ve made over the past few years. I did not need the confirmation that it works. But, the fact that I still haven’t experienced an exacerbation is proof that I am managing healthily. 

Lytton’s death reminded me of the impermanence of life. I pushed death to the back of my mind as something that happens to other people but hasn’t touched me. With that attitude, I did not appreciate everyone around me in the way I do now. I recognize that anyone can leave me permanently, with no explanation. 

Finally, it reminded me that change happens, and I can get through it. The last time I experienced a “negative” life shift was after my diagnosis, almost seven years ago. I regrouped and was eventually able to move forward. 

Change, whether it’s good or bad, can help you discover essential things:

  1. The importance of taking time for yourself. If you experience a life change, negative or positive, take some time to sit with it. 
  2. Self-care, again. The further I get into life, the more confirmation I get surrounding the importance of self-care. Self-care can be in celebration or to help calm oneself after the change.
  3. How resilient we are and why finding ways to adapt is essential. While we must accept an uncontrollable change, we don’t have to roll over. We can find ways to adapt and adjust to change. 
  4. Appreciate life before, during, and after the change. We can recognize what we had before, find ways to enjoy life as it is, and understand what life might be in the future.
  5. Finding the positive in the negative. It might take some time, but there’s always a silver lining even in the negative changes. You might find comfort knowing what’s going on with you, be at peace because a person no longer suffers, or allowed to try a new career opportunity.

Embracing Big Life Changes

The key, I’ve found, is to lean into the uncontrollable changes for better or for worse. There are some changes we can fight for, opportunities we can pursue even if the door keeps shutting. But often, significant changes are out of our hands. We cannot prevent the new direction our life goes in, so we can accept the outcome and find ways to adapt.

The first step is acceptance and embracing the big changes. Finding ways to adapt follow closely behind.

For me, while I would love to run out and find a Bombay kitten similar to Lytton, I am learning to reconnect with our other two cats as a form of acceptance. Lytton was such a significant presence in our household that often, the other two cats functioned like roommates we cared and fed. I am spending more time with them, whether they appreciate it or not, and loving on them.

After my diagnosis, I fought the information, choosing to be ignorant of my MS because it was too painful to acknowledge. Behaving this way did not improve my quality of life. But once I took steps to accept and adapt my reality, I found greater satisfaction with everything.

If there are negative feelings associated with significant life changes, it’s hard to accept and adapt, especially in what we feel is a timely manner. Remember to honor your timetable, but be open to acceptance as your goal once you’ve finished mourning (death or health change). 

Big changes are going to happen in life. We have two options when encountering change: embrace it or reject it. When we embrace the change, it allows us to heal and move forward. When we reject it, it can prolong our dissatisfaction and cause stress.

In the end, the decision is ours how we deal with change.


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Checking In: MS Symptoms

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


What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better. Still, on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a virus like this, they may feel wiped out but can go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep. This afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a crucial example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm. Still, infections are a significant cause of flare-ups, so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick. Still, I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

I usually wouldn’t write about getting sick factoring into how I am currently feeling because I tend not to get sick all that often. Still, since having Jai, it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted. I am doing what is best for my overall health, and that is more important. My brain fog and memory issues haven’t lessened, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days mean that I have more energy throughout the day. On the days I only do yoga, there might be a more significant dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no apparent changes to my MS symptoms.

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Immune & Energy Booster Turmeric Shots

This post was originally published in December 2017.


Several years ago, I participated in an intensive yoga course, which required attending classes at a local studio almost daily and first thing in the morning. This was before my diagnosis, but just after I experienced my first flare-up, so fatigue was an issue for me at the time.

I was complaining to another student while we were waiting to step into the studio about how tired I was. We were doing a strict detox diet, and coffee was not on the approved list. She pulled this small bottle* out of her bag and handed it to me.

Her: “It’s a turmeric shot. These things are great natural energy boosts.”
Me: “Turmeric? As in the spice?”
Her: “Yeah, have you heard about it? It’s got all these great ayurvedic properties, but it’s been found to boost your energy naturally. It’s more potent than caffeine.”
Me: “And it’s safe?”
Her: “Absolutely. It’s all-natural. Just try half of it and let me know what you think after class.”

I tried it, and she was correct. I felt extremely energized. I was almost shaking to get the class started, that’s how powerful it was for me. I will add this note: it was the first of any sort of energy drink I had in weeks. We couldn’t even drink green tea, so the results might have been slightly skewed due to my body just going into overload.

I didn’t get a chance to follow up with the turmeric as an energy booster after that experience. But it stayed in the back of my mind. When I read about the benefits of turmeric in the diet for brain health and as an anti-inflammatory, I decided to look back into it. It might be worth trying to help manage my MS.

The Health Benefits of Turmeric

What makes turmeric the wonder spice is the curcumin. Curcumin is believed to be a beneficial supplement to fight Alzheimer’s due to its anti-inflammatory and brain-boosting properties. It also is found to have cognitive-boosting abilities, though this needs to be researched further. It can also help prevent certain forms of cancer.

These two things alone: inflammation and cognition are issues a person with MS deals with daily. I am not advocating forsaking all other forms of MS therapy. I am adding it to my daily diet to supplement traditional forms of MS therapy. And as a runner, the anti-inflammatory benefits are beneficial to recovery.

But the energy/metabolism and the immune benefits? This becomes a universal appeal for daily consumption of turmeric. Even if you don’t have MS, having a natural way to get more energy and boost the immune system will be beneficial to your health. It may not cure a cold or prevent getting one, but it will give you that extra boost your body might need.

Making My Own Turmeric Drink

Before removing sugar from my diet, I found it harder to stomach turmeric even in a drink form. The taste was too weird, and I needed something sweet to help cover it up. It’s how I handled flavors I didn’t care for in the past: add sugar to make it more palatable.

A few weeks after quitting sugar, I bought several shots of turmeric for an early morning road trip I was making to Tennessee. I took some sips and found that I actually enjoyed the flavor and felt quite the energy boost. Sugar struck again as a ruiner of flavors. Now that it was out of my system, I was able to enjoy something I previously disliked.

But what took my breath away was the price per bottle. I could drink one bottle per day for the health benefits, but my wallet wasn’t going to be fond of the ~$6.00 per 3 fl oz. I knew I could make it even cheaper.

I found a couple of recipes online. However, they didn’t adhere to the vegan diet. They used honey or some other animal-based additive. I decided to create my own recipe. Below the break, you will find my recipe and some ideas for modifications.

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