People who know you inside out, only have to take one look at you to know what is brewing in your brain and the rest of your central nervous system.
La Mama, as soon as my face filled her laptop screen during our daily Skype chat: “Oh, wow!”
While not an astounding flattering review, she had good reason to say so. Two hours of sleep all night. Pain everywhere. Restless. Rather wide awake but in an MS-fatigue filled manner. Itchy. And, of course, facial pain and tinnitus that would’ve driven any buzzing bee to madness.
In short, I felt like gutting my immune system from my entrails, while at the same time, scraping my mind from my brain. And, perhaps, treating my eyes’ life experiences to a spa dunked in a glass jar filled with ethanol.
Life with MS.
Nobody said it would be easy.
In short: “Wow.”
MS being an enigma to researchers, patients and all those in contact with people with it, equally experience neurodegeneration with certain wonder.
The other day, I was asked a rather intriguing question: “Considering it is chronic and neurodegenerative, do you actually feel lesions growing and eating away at your central nervous system?”
Not your typical, easy Sunday question, I agree, but one that nevertheless deserved to be answered. “Well… OK, it’s still early in the morning and I haven’t had my coffee yet, but I’ll give it a try.”
Two hours later, I was still wrecking my brain.
Another hour later, the only thing I could come up with was, “Actually, I’ve never thought about my MS this way!”
Like I said, no coffee yet.
And in weekend-mode.
Thinking about it some more and with more vigour (read: coffee), the question deserved a researched and more intelligently sounding answer so I read some old notes to see if the answer could be found in there.
That’s where the investigation stopped dead in its tracks.
Reading boring, dry hospital reports detailing the technical side of MS: no problem.
Reading detailed emails to my late brother, closest friends and colleagues from the time around my first symptoms five months before diagnosis to the following six months post-diagnosis: no.
A most definite NO.
To my surprise, I was and I’m still unable to read details about to those days where everything was so unlike anything I had ever lived through. What startled me was the severity of my symptoms, making me wonder how I made it through five months of excruciating pain until I could take it no more and dragged myself into A&E so many moons ago.
But, as serious as my symptoms were and still are, I have to see things in its proper framework: a decade and a half later, I still have a fantastic mother and medical team, and because of a very active MS society, I met the best of people who never question, judge or walk away when I’m not around. As for life itself, a new reality was shaped around reimagined, improved, happier and healthier days, months and years.
So, let’s celebrate the days full of wonder we have instead of being sad about the new future that is ahead of me.
2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland
◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.