I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.
I woke up this morning, made my way to the closet to get dressed and the first thought that popped into my head was “Ugh, another day with multiple sclerosis.” As soon as that thought showed up I knew it wasn’t a wonderful cheery thing to be thinking. But hey, I’m human and thoughts like that happen.
When multiple sclerosis becomes part of a person’s life, it comes with one purpose…to steal and destroy. It ransacks the nerves in the Central Nervous System with a ravenous appetite for myelin (the coating around each nerve).
You face the impossible every moment of every day and yet somehow as the sun goes down, you always make it. You find yourself climbing into bed feeling beat up, worn out, battered and bruised, but as you lay your head on your pillow and take a moment to look back over the day, you realize that the ninja living inside of you kicked some MS butt.
I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to bladder issues I was having with my suprapubic catheter. I now have a stoma that helps me to empty my urine.
I almost choked on my own saliva Monday. It was a scary experience. I was sitting on the couch listening to some music and just swallowed. Nothing unusual. Just a simple swallow, but it turned out to be a truly terrible moment.
My life has become a continual daily life of nap, nap, nap with no sleep, sleep, sleep. I’ve been visiting there quite a bit lately; this land of nap. Maybe you have too.
I didn’t choose a life of constant struggle because of MS, but it didn’t give me a choice. I didn’t cause it, I can’t control it and I can’t cure it. Somehow it found me and here I am living in a world that is constantly changing. I don’t want to feel like a failure because of something beyond my control. I refuse to believe it will be because I didn’t fight hard enough.
AI is taking over the internet. It’s sad because websites are now built for bots, not humans. Everything I write is inundated with bots that consume the content for who knows what reason. The content is stripped and regurgitated into other none human writings.
This journey that we’re on — this journey called life — I know it’s not perfect. It has many hurdles and obstacles that keep jumping in the way. We can allow those difficulties to make us angry because our path has become hard and seemingly impassable, or we can choose to be thankful for the lessons we learn along the way.
1. Simplify your life.