The Reality of Being Immune Compromised in a Viral World

This post is about Coronavirus. (Sorry, not sorry.) But not entirely, so stick with me. At this point I am kind of sick of hearing about it. But mostly I am so very sick of explaining to people that just because they have a 98% chance of surviving Coronavirus doesn’t mean that I do. Or that my grandmother does. And that just because YOU avoid death, doesn’t mean that you aren’t spreading it around to the part of the population that does need to be concerned.

There is of course no reason to freak out. As I’ve spoken about before, the unknown can be quite scary and all consuming. My guess is, the more we find out about this thing, the more toilet paper will be on the shelves again. It of course may take some time to work through all of it, so in the meantime, be patient. Stay safe. Shave your head in case the virus like to hide in hair…Just kidding. Try washing your hands, instead. Something we should all do more of anyhow.

I tend to lean toward laid back, but of course was immediately on alert due to the timing of it all. As it so happens I took my first two doses of an immune compromising medication that stays in my system for 6 months juuuuust before the outbreak became daily news. I have to find humor in that. If I thought I was nervous about taking Ocrevus before…geez, guys. You’re not helping.

I’ll admit. I am worried at times. One of the side effects of Ocrevus is being more prone to upper respiratory infections. Cue the release of a global viral infection that attacks the lungs. Cool. I was a little worried about getting the flu before. Why not add a more severe version to the mix floating around out there. But hey, I haven’t thought about PML in days. Mostly though, the novelty has worn off a little for me, and I am coping by being as knowledgeable as possible and doing my best to not catch or spread anything harmful to others – be it viral or any other form of misinformation.

For me that consists of a lot of hand washing and thinking twice before touching my face. It’s easy. I just pretend I’m on a surf trip in Mexico. The bigger picture of daily life is a little harder. I am not holing up at home completely and self quarantining, but I am conscious of the fact that I need to be more careful and consider what going to the grocery store or large gatherings might put me at risk of exposure to. I’m working from home as much as possible, and If I do go out, I am of course steering clear of people that are coughing or look sick and wiping down the ol’ grocery cart with a few Purell wipes before cruising around with that thing among a group of people that either traveled here or have been exposed to said travelers at work and doing everything else they do in a resort/destination community. At this point it sounds like the risk of exposure is pretty low unless you’ve been out of the country, but as more cases are identified, I’ll be keeping an eye on that and assess how I feel down the road. PS – While you’re getting crazy with all of those disinfection wipes, don’t forget to take a pass over your constant companion once in a while – your phone.

What I find even more terrifying is how quickly people react to everything on the internet. And with such vigor. My goodness, do people get worked up. We are getting a little inflammatory and negative with each other, if you can’t tell, so I am definitely trying to be conscious about getting information from non-biased, accurate sources. I am mindful that statistics can be bent to fit whatever case in point any given person is trying to make. And keep in mind most of what you see on Facebook has an agenda, so maybe do a little fact checking before commenting on or sharing something. There is an immense amount of information out there, the quantity is staggering. Not all of it is quality, and germs aren’t the only thing going viral these days.

I’ve also found that panic shoppers are driven partly by a need to have some level of control. “I can avoid illness with copious amounts of hand sanitizer,” for example. How much hand sanitizer you purchase (until it runs out at the store), is generally within your scope of control. Well, as someone with MS, I can tell you it is not always an easy fix like that. But, I can relate to the need for a little sense of control where you can get it.

So, my post today is really more about that. What can you control in your life when so much of your day is adapting to symptoms or situations you cannot control. One thing that took me years to find out, and was very promising for me, was the discovery of neurological reserve.

Up until that point, I was under the impression that once you have a lesion – once you have that scarring in your brain, it is there baby, and there is nothing you can do about it. Permanent damage. Yes, that is of course a concern with MS, however, I found a lot of hope in the fact that neurological reserve is there to help your brain cope and move around the damaged areas. The human brain is pretty incredible, folks! Believe it.

I didn’t know it, but for a few years that was already my mission. My passion toward feeling better was already heavily tilted toward things like my diet or exercise choices, and to hear from an MS specialist that neurological reserve is actually possible, that my body could adapt and that my symptoms could get better was extremely validating.

Regardless of whether you are dealing with an autoimmune disease or another chronic condition, we are all human and we are all getting older, so starting now with some ‘good for your brain’ habits isn’t a bad idea. Check out this rundown on brain preservation https://www.msmindshift.com/brain-preservation/ and maybe consider following Can Do Multiple Sclerosis for additional information on a variety of topics that effect someone with MS, in all it’s varying degrees. There is so much information out there. Some of it accurate, some not. Some pertains to someone you can’t relate to because their experience with MS has been quite different. Along my journey, I have found that Can Do MS has been a great resource over the years when I have questions or want to listen in to a webinar on a topic I am curious about.

I also cannot recommend the Rocky Mountain MS Center enough for their realistic approach and valuable advice. It is definitely the “real people” connection I have been looking for for a while. Kinda like how some people are handling the Coronavirus, they have a “keep calm and carry on” approach. They aren’t laying on the fear tactics, but they also understand the seriousness of the situation and the colossal impact it may have on your life. I am super grateful to have found them to help me through it.

On a less serious note, here is your Coronavirus humor for the day brought to you by Stephen King because sometimes when it gets scary you need to have a good laugh about it…Stay safe out there, folks. And remember to think with your heart a little more, if you can. When things get a little crazy in life, I always feel better when I can clear the noise and confusion and connect with my core, my heart center. It’s never wrong.

Trees remind us to grow tall, be strong. Yet they are flexible as wind blows through their branches. With solid roots you can weather any storm.

Published by Aimee Straw

Diagnosed with MS at 29, my journey toward higher heart and soul really began to unfold and flourish a few years later when I started to accept, and embrace, who I really am. There are many lessons to learn along the way and I am excited to share my story in the hopes that I can connect with and inspire others.

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