My Experience With MS
When I was first diagnosed with MS, I had no idea what the future would hold.
One thing is certain though, I never expected this is where I would be 15 years later, but I am digging it.
For the first decade, I mirrored what other people told me about MS. I took on the shock, sadness and fear that they projected onto me as if it were my own. Not once, did I think about what I wanted from my life with MS. Instead, I fought my body, compared myself to others, and drug along the heavy weight that is MS.
During that time, I had an average of 1 relapse/year. Initially they were further apart, but as time went on I was having relapses every 6-8 months. My first two relapses were the most severe (thanks optic neuritis). The others predominantly affected my legs, making them heavy and hard to coordinate. In addition to that, odd sensations, numbness, weakness, bladder problems + difficulty swallowing have made their appearances in past relapses.
In 10 years, I had been on all the injectable medicines (Rebif, Avonex, Copaxone, Betaseron) along with one oral medication, Gilenya. Those all came with their own side effects that were…let’s just say…fun. Frequently I would think ‘for one day I just want to not be fighting my body - that would feel so freeing.’ It was lonely, but I was so used to having to put on a brave face, it became my new normal.
Then, five years ago something clicked.
There wasn’t one light bulb moment that motivated me to shift my mindset around MS and get physically healthier, it was more of a combination of 10 years of moments. Being at war with yourself 24/7/365 is exhausting - I was fucking done.
At the end of the day I didn’t want to look good or lose weight, I just wanted to feel better. My goal was not intimidating because that is all I could handle at the time. I focused on doing things that I would feel better after doing vs. worse.
I slowly made small changes to my daily habits in an effort to be physically and mentally healthier - I drank more water. I ate more balanced, healthy food and eliminated food that didn’t agree with my body. I exercised regularly. I reframed my perspective and changed my thought patterns. I prioritized sleep and eliminated stress.
I wasn’t perfect by any means - I was patient with myself and took breaks when I needed to. When I ‘messed up’ I started back up the next day, instead of feeling guilty or ashamed.
I was consistent - I held myself accountable. I kept going - day after day after day.
The positive changes in how I felt inside and out snowballed over time. I learned so much about my body, and gained confidence in myself and my ability to do hard things - all I had to do was just keep going. And for a stubborn bitch like myself, not giving up was realllllly easy. :)
This newfound self confidence gave me the push I needed to get into my own nitty gritty emotions about having MS.
If you have MS you know that its not black and white, perfect or not perfect. Instead, there are at least 5 million shades of gray in between. Often, multiple feelings exist at once and that is okay.
Applying that way of thought to MS as a whole changed my life.
I accepted that there is a lot I can’t control with MS, and that will never change.
For example, I can be pissed that the chronic pain in my legs is raging and I can accept that it’s happening whether I like it or not because I can’t control it.
That last part is where the magic happens.
Instead of being angry about an acute uptick in pain, I focus on what I can control, which is accepting my life as it is right now. This ensures my pain isn’t prolonged with additional suffering.
That acceptance frees up space for positive emotions and moving forward too. For me, it literally clears out brain space so I can see possibility through my current limitations. That is the beauty of radically accepting your diagnosis and life.
Don’t be fooled, I still have plenty of MS symptoms on a daily basis (pain, fatigue, muscle spasticity + tremors, weakness, numbness/weird sensations, brain fog) and I can’t see out of my left eye very well from a relapse that never fully healed. But, I know that I am a strong ass bitch that can handle whatever ‘fun’ things MS decides to throw at me.
I know that MS will be a pain in the ass that I can’t (completely) control and that sucks. At the same time, I am going to control what I can by shifting my mindset and living a healthy, balanced lifestyle until the next inevitable curveball comes around.
And that is my MS journey of how I got from diagnosis, through shame and onto thriving.
Much love,
Sam
