Rising Again; Navigating MS Relapses
It’s MS awareness month and time for another snippet of my MS story. Over the past several months I have been sharing my story in chronological order-ish, in an effort to not only spread awareness, but to also provide a sense of hope for those that are still suffering, managing their disabilities, and working through diagnosis, lifestyle change, and medication choices.
When an MS relapse occurs, it’s very emotional. The ups and downs are a challenge to navigate and can make you feel as though all of your hard work doesn’t even matter. But it does. If you’re in the midst of an episode, hang in there. You’ll get back up, in your time, in your way. Don’t let MS dictate your spirit.
My second MS attack was far worse than my first. It caught me off guard and when it first hit, it didn’t even occur to me that it even was the MS—I thought for sure it was food poisoning, MS wasn’t even on my radar.
To my disappointment, it was not food poisoning…
Finally feeling better, just two years shy of my diagnosis, I had made the difficult lifestyle changes regarding food, lifestyle, medication, etc., and was fully recovered from my first episode. I could walk normally again, I had regained taste and sensation in my mouth, face, tongue, my energy levels were great, I was ready to move forward with my life. After a conversation with my brother, I even decided to go after an MBA— a Masters in Business Administration. As I said, I was ready to move on and leave this MS stuff behind me.
MS had different plans.
My cousin and I had gone out for sushi at our favorite little spot in Glendora earlier that day so when I woke up in the middle of the night feeling dizzy, I immediately assumed it was the fish. The feeling began to intensify, so I pulled myself out of bed and attempted to walk down the hall to my parents room—I was living at home, thank God. But when I got up and started to walk, I fell into the wall, holding myself up taken aback by how dizzy I actually was. The room was spinning intensely at this point and all I wanted to do was make it to my parent’s room.
I finally made it and announced to my mom that I was dizzy before making it to her bathroom floor to vomit.
The vomiting went on, and on, and on.
I couldn’t move with out vomiting. I didn’t want to be touched, couldn’t move an inch. My poor mom trying to help, to do something, but couldn’t do anything but be there. All I could do was cling to the cold toilet while vomiting and then return to the fetal positions on the floor in between rounds. The spinning so intense, it felt like I was on a marry-go-round that wouldn’t stop. All I can remember thinking is… don’t move. If you didn’t move, then maybe the vomiting will stop.
The sun was up now and I was still on the bathroom floor. My mom came in the bathroom and very quietly told me she had spoken to my neurologist. My neurologist? I remember thinking. Why? This is food poisoning for sure. But mom’s always know best and she had called my doctor, concerned this was something more serious. And it was. She was right.
My brother-in-law and sister were also living with us at the time, their new home wasn’t ready yet. Another “thank God” moment, because the only way to get me to the car and to the ER at this time was by my brother-in-law carrying me. He swooped me up and delivered me to my mom’s car.
We got to the ER and I was taken immediately. They first treated my vertigo to alleviate the vomiting alongside some fluids to hydrate me. Our local Glendora hospital is very basic, they didn’t have a the tools to help me properly, but did the best they could.
I spent the weekend at the hospital recovering. I don’t remember much, but I do remember the neurologist that they brought in to read my MRI which was done with a portable service since they didn’t have their own machine. The result, shit. The doctor couldn’t see my new lesion and made the assumption that I was having a panic attack.
So annoying.
This was not a panic attack! How could be be so ignorant knowing my past medical history?! Sadly, not all docs wearing medical coats and toting a degree deserve to be treating patients. He was one of them. But I had very little energy to bother with his stupidity and rather focused on resting and getting out of the hospital to go and see my real doc, the one who actually had a brain and compassion, not to mention proper medical equipment.
My only job, to rest. And rest I did.
My stay was quite hazy, I don’t remember much. But I do remember the overwhelming amount of love and support that I had from friends and family. The waiting area was flooded with friends and family. What a blessing. When you’re down and out in a hospital bed, there is nothing more comforting than knowing your people are there by your side, even if you aren’t fully aware, your energy is aware and your being responds.
As a result, even amidst the physical discomfort, I felt emotionally comforted. One of the many paradoxes of illness.
After the shitty doc gave us his shit assessment (excuse my tone with the doc, but this is a common issue that people with MS face and it’s SO frustrating. Being told your symptoms are just stress or anxiety 😥 ), we called my doc who then intervened. He authorized the course of treatment which was heavy steroids again, and scheduled an appointment for me to come and get an MRI in the machines that I had been using in order to get a proper visual once I was out of the hospital.
Sure enough, in a proper MRI machine, my second lesion was there. Although I assumed it was another MS attack at this point, there was a part of me that wasn’t ready for what the doc had to say.
If you remember the story of my first attack, there was a period where they were speculating on wether or not it was CIS (central isolated syndrome) or MS. My doc suggested that we treat for MS having a feeling that he would see me again in this same situation. And he did. He was right. Here I was, second attack, back in his office. I did the MRI and then went home, waiting for him to call with my results.
He called me later that evening, I’ll never forget, I can remember exactly where I was standing as he was sharing his findings. It was definitely another attack. He now could say I have, I have MS, conclusively.
I hung up the phone and as I started to tell my mom what he said, I began to cry. I felt defeated. Sad. Scared. Disappointed. My mom hugged me and said she was sorry. It wasn’t one of my top fave moments in life, I can tell you that for sure.
I was out of the hospital, the MRI done and conclusive, now, it was time to heal.
Unable to walk well, I was super unsteady on my feet, it felt weird, like I was disconnected. Really wobbly and spastic. My whole entire body felt like pins and needles, I was extremely weak and tired. My motor skills were off which made it hard to walk and stand steady on my feet. The vertigo had subsided, but I was still left with a feeling of nausea and I couldn’t make any sudden movements with my head. To walk, I needed the support of a wall, a hand, or technically, a cane.
Fun stuff!
In the beginning, rest was my number one priority. I was lucky enough to be working with my dad in our family’s restaurants which gave me the opportunity to take all the time I needed and to come back in a way that worked for me. Additionally, I was living with my parents. A huge plus and blessing that I know not everyone gets. Perk of getting diagnosed young, it was before I had my shit together. I do not want to understate how very blessed I was. I was able to make my health my priority as I didn’t really have any other major ones at the time.
This is not the case for all, unfortunately.
I didn’t have kids, I wasn’t married, didn’t own my own business, didn’t have the responsibility of rent to pay, and worked for my dad. My set up was pretty aligned in terms of being able to focus on my health and wellness. I actually had zero excuse not to.
My amazing yoga teacher, Kate, came to my house for a 1:1 sessions. I still remember the first one, I lied down on a lawn chair outside, it was a beautiful November day in CA, the fresh air felt amazing. The sunlight warm on my skin, a soft breeze. I didn’t know what to expect, I simply surrendered into her knowing, trusting she knew what to do. Kate proceeded with a lovely yoga nidra practice, helping me to calm my system and connect to my body.
My aunt booked a gentle massage at my home with a therapist that also worked with energy. It was my first experience with something like this and I was all for it. My body needed healing and if someone or something could support that, I was down. My whole family jumped in to help in so many different ways, too many to count and list. Whatever they could do, they did it.
It was maybe two-three weeks later that I found myself in the hallway of our house, hand on the wall for balance, that I paused. In that moment I was done. Done walking with support, my hand on the wall. It was time to take this “bull by the reigns”.
I channeled my inner gymnast, her tenacity and mind body connection, closed my eyes, and instructed myself to “just walk, Vas!”. Using my visualizations skills, I closed my eyes and pictured my body walking, performing the action. And then, in that moment, one foot in front of the other, I began to walk with no support.
I will never ever forget the feeling. Ever. I blew my own mind! Within a few more weeks I was walking on my own, no support. It took me time to regain all my strength, but I was improving greatly! I always refer to that moment in the movie “Kill Bill” when Uma Therman wakes up from the coma and is trying so hard to move her toe. It takes all of her mind body effort to do so, but she does it. That’s how I felt!
Here is a link to the scene in case you want to see 😊
Our bodies are amazing! If given the space, they crave healing, it’s what they are designed to do. To heal. Our brains are so magnificent they are able to rewire connections to get the job done. My lesion did not go away, but my ability to walk normally fully recovered over time.
What does that mean?! Exactly what I just mentioned—our brains and bodies are amazing. They can do profound things. All it takes is the belief, that is the seed of hope, action, and patience.
My body and brain found a new way to communicate, how cool is that?!
From that moment forward, my mindset shifted from that of being sick and weak, to that of “let’s do this”. It was time to help my body heal, to show up for her and give her what she needed.
It took me a few months to recover fully, where I felt like I was back to “normal”. I maintained my lifestyle changes, got a ton of rest, ate foods that nourished my body, continued gentle therapeutic yoga, and continued seeing my psychologist to work on my mental health. I leaned on the tools that I had accumulated up until that point to help my body heal. Giving up and saying fuck it, just wasn’t in the cards for me. I was going to keep at it, keep trying, keep fighting.
MS wasn’t going to keep me down. I was more determined than ever!
Despite the efforts of MS to keep me down, to “rain on my parade” as they say, I chose to fight back. To get back up and to keep trying. I had faith in myself and in my body, this wasn’t the end of the road for me. I had other plans… to get an MBA, to run a marathon, to find a career and passion that I loved, to own my own business, to travel, get married, have children, the list goes on!
MS can be a very tricky disease, a mind-f really. It shows up differently in all people, people respond differently to treatment, and all doctors have their own opinions on the matter only making it even more difficult to navigate.
Life with MS can be a lot of hard work. Physically and mentally. But the hard work has paid off for me and I don’t intend to stop. What was once hard in the past, is now easy, like most things in life. You just have to give it time and the commitment. Before you know it you too may be 13 years, no relapse, feeling great and LIVING!
If you missed my previous posts on my journey with MS you can find them here, just click on the title.
If you’ve made it this far, thank you for reading my story, please share with anyone that might find this helpful.
