What MS Awareness Month Taught Me

Knowledge is power or, at least, validation

Stay tuned to the end to this blog for a really big announcement!

 

Alright, that’s it!

Who do I sue?

Where do I find a copyright infringement attorney? Because I’ve had enough. I’m definitely suing!

Please allow me to explain.

About six months into the pandemic I used this space to whine about Covid robbing me of one of my most prized skills. As a woman of few talents, I treasure each one. And this skill was also the most practical.

It was my innate ability of knowing all the cleanliest and convenient public restrooms on various roadways. I was a master at this, due to my problematic MS bladder combined with my comorbidity of germaphobia.

Then Covid hit and that knowledge went right out the window we opened to yell thank yous to the pandemic frontliners. Suddenly, many of my old standbys were closed or wouldn’t allow you inside, and the trusty doctor’s offices I took my mom to no longer let me come in with her, if only to sneak into their bathroom. My skills were shot, just as I planned on designing an app selling my knowledge to the masses. (Check out the blog post, Where Do You Go?)

During March, Multiple Sclerosis Awareness Month, a time when patients, loved ones, and medical professionals are learning and sharing their knowledge of this particular illness, I learned that these apps already exist!!!!!

Bastards.

Turns out Charmin- of Mr. Whipple please the Don’t Squeeze the Charmin fame- started an app called Sit Or Squat.

Since then, they have been copied by other restroom finders such as Flush, PooPee and the ever original Where is Public Toilet?

It doesn’t matter that Charmin came up with their Sit or Squat app in 2017, as I was busy gathering information for my own app. They had to have stolen the idea from me, or at least, from some other desperate MS’er with a side affliction of germaphobia.

And you can’t tell me that these apps are on target with the personal information that my app would have had. Do they factor in fast food restaurant shift changes? Or medical building’s restrooms within a particular doctor’s office restrooms as opposed to the main lobby ones right by the entrance that maybe aren’t cleaned as often?

No, I bet they don’t. Yet here they are making money off poor, folks with bladder issues without a care as to how needed their service is and that it was my idea first!

Ok, it wasn’t, but I thought it was so that should totally count.

Yes this was some distressing knowledge I obtained during MS Awareness Month. But luckily, I learned some other things too.

Big announcement coming up soon

Did you know that what part of an MS’er’s body has a lesion/lesions has a direct correlation to what their symptoms will likely be? I kind of knew that but thought I was making it up. Turns out, I wasn’t. I can’t share with you which MS article I read this in because I forgot to save it, but I was pretty stoked that all the times I have been spreading this particular MS knowledge, I wasn’t lying!

My sister who is biologically my half sister but is really just my sister also has MS and she uses a walking aid. The majority of her lesions are on her spine. As of yet, I don’t need assistance to walk, unless you count a good kick in butt when I’m being lazy, but most of my lesions are on my brain and I can zone out and make cognitive mistakes with the best of them.  Case in point- pretty much every blog I’ve ever written.

Speaking of my sister, we always knew that MS wasn’t hereditary but that there had to be some unknown link within families. This was further emphasized when my other half-sister, who is really just my sister but biologically is also a half, was also diagnosed with MS. We three share the same grandmother and we have long believed she lived with MS but was never diagnosed.

According to an article by Tammy Worth in EverydayHealth “What Causes MS?” the reason you may have one or more family members also living with multiple sclerosis is that they may share a gene, thus there is a genetic link.

I don’t really understand that but I guess it means having MS doesn’t mean someone else in your family will have it too, but IF there is someone else in your family who does, you may have a similar gene and that’s why you both, or all three of you, have it.

Go figure. We would fight about sharing jeans, but the whole time we were growing up we shared an MS gene. Maybe if we’d known, the denim would have gotten passed around too, just like the ugly 70’s school picture dresses.

Keep scrolling- you are almost at the very big announcement.

 

And thanks to a meme from PositiveLivingWithMS, I learned that vertigo was more likely a cause of a multiple sclerosis exacerbation than simply a weird side effect from Covid. When I got Covid in 2022, I woke up with the worst hangover I ever had; the bed spinning like a top and it was hard to get up without falling over. Confusing thing was, I hadn’t had any alcohol in weeks.

I took a Covid test and it was negative. Five days later, I developed what felt like a bad cold and received a positive Covid diagnosis. So likely the Covid virus started poking around my body which caused an MS exacerbation which brought on horrible vertigo which lasted during and past my length of Covid.

Or something like that. I just know it was miserable, lasted 2 months and every once in a while it hints at coming back. But mercifully, it never has.

I also learned that trouble with making decisions is also a symptom of MS. I totally thought so!!

Now, thanks to Caroline Craven and her article in Healthline “How Multiple Sclerosis Can Affect Decision Making,” I have proof!

Sometimes trying to decide something just does me in. I can spend 20 minutes just trying to decide which socks to put on. These socks are super comfy but also warm- what if it gets hot out? These socks are more stylish but my feet tend to slide around in my shoes when I’m wearing them. These socks are perfect but the color kind of clashes with my shirt- does that matter? Are my pants long enough to hide them?

See?

I bet you’re starting to get tired too.

Now do you see why MS is so exhausting?

So while I didn’t really learn anything new this past MS Awareness Month, except for the potty app thing that I am STILL mad about, I learned that some of the things I was stressing over, the things I blame on MS out of frustration and fear, really are part of my complex MS world.

For some reason, knowing that I was right about this makes me feel better.  Sometimes we need validation. Sometimes we need science. When the latter is slow to catch up, sometimes we need to remember that the patient maybe does know best. Even if they don’t know why.

Are you confused yet?

Blame MS!

Now, as promised, the big announcement!!!

Drum roll please!!

I’m happy to report that I have signed a contract with an independent publisher for my second book, Shelter of the Monument: A Provincetown Love Story.

As we say in my area, I’m wicked excited!

Be forewarned, this book isn’t about multiple sclerosis like MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis. This one is a coming-of-age memoir that takes place in Provincetown, MA. And while there are some funny moments in it, it is mostly about serious issues such as first love, loss, addiction and finding your own voice. It is due to be released this November and I can’t wait to share it with you.

As my publisher and I gear up to the release date, things may change a bit at yvonnedesousa.com. I will be posting updates and adding the new book to the website. I’m not sure what that will look like exactly, but will be working on it in the coming weeks.

(Warning to my web guru who reads my blog, I will be contacting you very soon. You may want to take your phone off the hook- lol!)

Thank you all for your support with both the blog and with MS Madness!  I hope you will check out and enjoy Shelter of the Monument as well!!