I started writing this blog and shooting videos because I had no idea what to do. I was just realizing that I was in full denial of my condition, and I wasn’t addressing my MS. I figured this would help me to get it out, and to take personal accountability on a public stage. I had no idea where it was going to go. I had small ideas about posts, and actions, but nothing was concrete in my head. I was just hurting and looking for a way to move forward.
I didn’t take into account how I would feel about the strong reaction from friends and loved ones. I didn’t think about how I would feel going forward. I figured it would be easy to just keep going and writing.
As I’ve progressed in my first month, I’ve started to notice some reluctance to write certain things or talk about the bad stuff. The idea is that I don’t want people worrying about me. I don’t want sympathy, and I don’t need it. I’ve lived a fucking amazing life. I’m going to live an even more amazing one going forward. I made one promise to myself when I started writing out the first blog; that I would be totally honest and always keep in mind what I was feeling like at that first moment. Because I wanted this to help just 1 person who stumbled across it and was lost, confused, and scared about some bad news. I wanted them to know they’re not alone, just as I am realizing daily.
To those that care about me, I’m going to have bad days. I’m going to have times when I’m sad, depressed, anxious, in pain, exhausted, mentally drained, off my path, and confused. I’m going to feel pain, sadness, anger, and despair at times. I’m going to go through thoughts that I could stop walking any day, thoughts that I will never find that person that I want to spend my life with. Thoughts that no girl could ever fall in love with someone that may be disabled in the future. Thoughts that I’ll never recreate the joy I had when I could just go play basketball for 2 hours. Thoughts that all I want to do is say “fuck it” and have a blast without thinking about the repercussions.
Well, yesterday was one of those days. It started out similar to what I can only (sheepishly and naively) imagine it feels like to be awoken by a bombing raid siren. I work up at 5:45AM with my ear ringing loudly. My right side of my head felt like there was a ferocious gnome drilling behind my jaw.
I sat in bed and watched an old episode of Parks and Rec. Not even Ron Swanson could save me. Fuck it, it was time to get up. I showered, took a walk, and stopped to consider eating. As I looked at the bagel shop, I thought about how I felt like a disgusting piece of crap and decided I wouldn’t eat today. Uh oh… so we have physical pain, plus mental pain, plus self-confidence issues. Banner day!
So I get in my car, and refuse to lose the positivity that I’ve had going for 3 weeks. I crank the Acura’s speakers and try to lose everything in some pump up music and inspiration. Eminem, Kendrick, Metallica, Meatloaf, Dispatch, Sublime, Lil Wayne and Akon couldn’t do it for me.
As I got to work I ate a granola bar and took my larger dose of Tecfidera. Guess what? Taking twice as much as I did last week has started to give me some side effects. Nothing too serious, I just take more trips to the bathroom than a pregnant woman. And not fun ones.
Looking over everything I had to do at work, I just felt lost. I couldn’t concentrate on anything. I started thinking about every bad thought you can let yourself slip to. From “there are people who can’t walk that stay positive, and you’re being a pussy” to “I wonder what ___ is up to now? Our relationship wasn’t THAT bad” to “you have a date on Thursday, how do you bring up MS?” This was my day. My head was hurting, then racing, then hurting. Then I’d almost fall asleep for 10 seconds and feel like I didn’t sleep in days. When awake, I felt like I was going to puke from anxiety, and the meds. Don’t worry I didn’t, I just almost crapped my pants 4 times. I had about 8 hours of sleep the night before and have eaten better and exercised for 3 straight weeks.
I tried to grab hold of everything and just scream. I tried to just get over everything. I left work the second I could, drove home, and planned on going for my first run in 10 months. I got home and was beat. The thoughts were still racing “How do I start swimming,” “I wonder what she really thought about me,” “When is the last time you had to really really try hard at something?” “why aren’t you playing basketball, you may never be able to again after a bad flare up.”
Finally…. “What if I let myself and everyone else down.” This was after abandoning my running plan, ordering Thai and watching TV with the roommate, and it was also time when I decided to write. To get this out here. I sat at my computer and started to realize something.
I’m going to have those days when I feel horrible. I’m going to have times when I feel weak. I’m going to talk about it here, and I’m not letting it stop me EVER.
Why, because, I want to be honest with everyone and, most importantly, with myself. Without those days I wouldn’t be me. My opinion of myself is not always a great one. But, I’m learning. I’m learning that I do like myself. I like that I care. I like that I am loyal. I like that I get overly excited and talk in hyperbole about everything (“this is the greatest song , show, joke, book, lake, dog, girl, cheesesteak ever!”). I like that I fall in love easily, and that it’s usually as soon as I think someone cares about me and is a good person. I like that I worry about everything, because I want to be better, because I want to make everyone else feel better. I like that I haven’t gone out of my way to hurt someone in a long, long time. I like that I take it really hard when I lose contact with a friend, or go through a breakup. I like that I simultaneously feel like a douchbag, and am touched by sappy movies and shows. I like that with these days, with these horrible thoughts; I can truly feel and embrace the great days. I like that I can appreciate how happy I can be. I like that I’ve never stopped being a happy and outgoing person. I like that I feel despair and feel lost, because when you find it, it means that much more.
What’s IT? That’s the question. I hate how cliché this line is, and at the same time I love it.
I don’t know what IT is, I don’t know if I ever will. But, I’m not going to ever stop looking, and enjoying the search in the process.
Donate, because thousands of people’s bad days are soo much worse than yours and mine.