I decided to make this a blog post to help myself, but also hopefully help someone else, whether it’s someone with MS, or someone who knows someone with MS.If it reaches just one person, then it’s totally worth it.
I was diagnosed on December 18th, 2013. It was honestly a very fast process. I was diagnosed within 24 hours of seeing the first doctor. It was impressive!
A bit of a background:
I woke up early December and had majorly blurred vision, turns out it was optic neuritis. Woo! So fun! I was diagnosed the very next day after an MRI.
In January I started a medicine called Copaxone, and it did nothing. Literally, nothing. It was basically like injecting myself with water every day.
July I changed to Rebif (AKA Satan), and it did nothing but destroy me from the inside out. 2014 was a really, really bad (and scary) year for me, especially the end. I ended up getting on Tysabri in March of 2015, and went into remission that very month. I had to switch to Tedfidera in November of this year, Tysabri was just exhausting me, now it’s just a waiting game to see if Tecfidera will be as great as Tysabri was (so far, I’m not impressed).
Problems Caused by The MS:
- Blurred/double vision
- Pain, basically, everywhere.
- Cognitive issues (memory problems, cog-fog, etc.)
- Hearing loss
- Weakness in my limbs
- “Baby deer syndrome” (I have no control over my legs, sometimes. Totally named this one haha)
- Bladder issues
And honestly, I could go on. Everyone with MS is different, that’s why It’s called “The Snowflake disease” because no two people will be suffering the same, but make no mistake, we’re all suffering in our own ways. It’s so easy to let the fact someone had MS slip your mind, I totally understand, it’s an invisible disease. You wont look at me and see a bloody mess of a person, but that’s how I feel a lot of the time. You wont look over and see i’m missing an arm, but that’s how I feel.
I could make 34,324 posts about the last 3 years and the issues it causes, but I wont. I have, however, considered making a YouTube serious about all of it in more detail. It would be easier, for sure. MS is such a complicated little disease.
MS really causes issues in my life, but one of the most depressing areas it impacts is my hobbies.
I’ve always loved playing with make-up. I’m not good, but I love it. The MS makes it so frustrating though. You think winged liner is hard? Try doing it with uncontrollable shaking. I, sometimes, have pure rage leak through during this process haha. But.. i’m learning. I’m learning how to be this “new-me”, figuring out my “new-normal”. Yeah, I get a new normal about once a month, but at least it keeps things interesting!
Painting my nails is also something that causes me a great deal of frustration these days, I shake entirely too much to deal with that! I actually go get my nails done professionally now because the Tysabri makes me nails extremely thin and I can’t stand that.
Losing the progress you make in something you enjoy is hard, but it’s all what you make of it, and I chose to make it fun. I chose to keep at it, to keep learning, to keep trying to figure out ways to make it easier. It gets really depressing though, to know I’ll never be able to do a fierce wing like the beautiful Jaclyn Hill, but dammit, my MS wing could totally stab a bitch some days!
In July of 2014, I actually woke up feeling like myself for the first time in 6 months. 6 months of intense depression, of no hope, of frustration. I was me again.
I had wanted a tattoo for so long, but I couldn’t decide what I wanted, until that morning.
It’s small and simple, but come with a powerful message to myself. It’s a constant reminder of that day, and a constant reminder to never give up hope. To keep fighting.
My cousin actually got the same one in support of me and my fight. My dad though, he went out and got one that brought me to tears.
He’s been my biggest supporter during this time.
It’s so awesome to know that my family supports me to the point that they’d go out and get that support permanently inked on their body. It’s heartwarming.
The entire point of this post is to tell you it’s okay. It’s okay that you have a condition, or issue, that makes something more difficult for you than it does other people. That’s fine! Own that! Make it yours! Keep at it! Enjoy it! Do. Not. Give. Up!
It’s also to point out to everyone, that we are all battling silent demons. Depression, Anxiety, disease/illness. We are all fighting battles, and we need each other. We need to support and motivate each other. Don’t judge when you can’t see the full story. Sure, there are assholes out there, but I promise I don’t always mean to be an ass. Sometimes i’m just in so much pain that I lash out, but I’m sorry. I don’t mean it and It’s something I’m working on! You never know how many people out there are doing the same thing.
Love each other, support each other, and be kind.
Until next time,