I have to say if you told me 10 years ago I would be writing a blog about my struggles and triumphs with Multiple Sclerosis I would have told you to piss off. Sorry in advance for the directness, I don’t believe in passivity. And occasionally, I use bad words, both I blame on being raised in New Jersey during the formative middle school and high school years.
So why am I doing it? Because I need reality when dealing with this shit. I need to be able to express candidly with other people who are like me. In doing so, someone may read this and feel OMG, me too. That’s me. I don’t feel alone. Because we are not alone, God made me a good teacher and I am going to do what I know how to do. So I am educating you through my life experiences.
The first thing I am going to do is explain to you about what MS is to me, because MS is individually unique, how kind. Meh. I have good days, bad days and really bad days.
For me I get balance and equilibrium issues. What does that even really mean? Well, it’s like being on the fucking Gravitron, that feeling where you are thrown to the wall and the floor goes out but somehow you are still standing and everything around you is swirling. You focus really hard on one point in front of you and concentrate the crap out of it. And then someone speaks to you, “how are you doing”.. um okay I guess, a little unsteady but um, you go ahead, I will be right there. But on good days, I can rock the crap out of tree pose and there is no problem.
The next issue for me is the fatigue, like running a marathon fatigue. Who am I kidding, most I have ever done is a 10K and I walked/ran, but man I was beat tired after it. Tired, man, I am tired, tired. I walk up the stairs and I stop. I bend down and catch my breath on bad days. But good days I can climb mountains, for real, when I can, I hike Pacific Northwest trails . I get frustrated with the inconsistency of this limitation.
Then there is the pain, weird pain. Pain some days is unreal. The touch of the sheets on my skin sends excruciating pain all over my body. My joints and muscles feel like the tin man, and there is no WD 40 around. It hurts to move, I must move in order for my muscles and joints to warm up. Then some days, I can’t feel anything at all, not even temperature. Hot water on my skin sometimes feels like cold water and I have to be careful because I have, in the past, burnt myself with water. I didn’t even notice it until I had a blister.
There is also this messed up endothermic regulation issue that happens. During workouts, the first 10 to 15 minutes are brutal and I am beating myself up. Then, something weird takes over. I go numb, I can press on and work out for hours. I don’t feel the pain anymore because I am overheating. Some say this would be good but it’s not because I often push myself way past the point of any benefit. I must cognitively monitor times and exertion because I can’t trust my body to just tell me.
These are the things I deal with on a monthly basis, but I don’t complain about them. I don’t cry and I am thankful. I most certainly don’t let it consume me because I know what bad days are.
The really bad days, those are the days I have every bad feeling at once and new ones popping up. For instance, my the last flair, my eyesight suddenly went all blurry and funky. The bad days, I feel like I am trapped in a coma in my own body. I can’t mentally deal with over stimulation. I physically can’t get out of bed, I am in so much pain. I crawl to the bathroom. I lay sideways silently crying, just the tears down my face and I pray. I tell God if he can let me stand it just a little longer, I know I can make it. That maybe in a hour or two it can pass, maybe tomorrow if I just sleep long enough, it will be more manageable. Maybe if I eat better and don’t eat that McDonald’s Big Mac, it will all be better and then I realize, fuck, sorry God, I am still gonna eat that Big Mac. But I know, ultimately during those times, the only one who can help is God.
My MS and the reality of it all has brought me closer to God. And just like how MS is uniquely personable, so has become God to me. It’s more of a Life of Pi thing, a Jewish, Hindi, Buddhist, Catholic God to me. In other words, it has made me enlightened. I can feel more compassion to others, I sense when they are hurting, I can feel it. I can see it and I understand it without explanations because I have been down this journey and I am still on it. I get it. And no matter how hard it gets, this is my journey and I will own it. I have accepted the fact that my life will never be the same, ever. I have accepted that the scary unknown could one day end my life and I am okay with it. I am okay with it because I have a mission. MY mission is to reach and teach as many individuals as I can so they don’t feel alone, they don’t feel afraid and they feel supported.
Over the course of the next few months, I must get myself back together. I have a long road ahead of me. I have to help myself heal by nourishing my mind, body and soul. Welcome to my journey.
Till the next time I write, be well.