The ugly side of multiple sclerosis
I hear people talking about multiple sclerosis like it’s no big deal, after all the girl down the street has MS and all she had to do was just change her diet and take some organic supplements, and it all went away. So I must be doing something wrong. Really? I wish that was true.
MS is not a figment of my imagination. It’s real and despite everything you read about it online, it’s not curable yet. Just so you know, it’s not caused by a lack of blood flow to the brain, or caused by not eating right or not spending enough time outside. It’s not even because I don’t exercise enough, have lived a bad life, or haven’t been praying enough.
If you could see the inside of my brain and spine you would see the damage in there. It looks like a battlefield with destruction all over the place. My central nervous system has been attacked by my own immune system which I call the myelin munchers.
You see, our nerves have a coating around them called myelin. It’s a lot like the wires hidden in the walls of your house that supply power. There’s an insulated coating around each wire to keep it protected.
Well, the coating around my nerves have been eaten away. As soon as they were exposed, my broken nerves started shorting out and causing all kinds of problems. That’s why my legs don’t work, my vision is blurred, my muscles spasm and twitch, and even why my body is weak.
I wear a smile most of the time but that doesn’t mean the disease isn’t there, it just means I’m doing a pretty good job at covering it up. I should win an Oscar for my performance everyday when I go out in public.
You see the mask that I wear but let me tell you a little bit about what is actually being covered up. Let me tell you about the ugly side of MS. Too much of the world doesn’t know that it exists.
Relapsing Remitting MS (RRMS) is one type of MS. A majority of people diagnosed with MS have this type. I got to be one of the lucky ones to have a progressive form of MS called Primary Progressive MS (PPMS). Mine just gradually and continually gets worse. I don’t experience times when my MS symptoms subside or get better.
In the back of my mind I know that one day my future will be drastically different than it is today. Although today I may be moving around ok, tomorrow I may not. I’m the same person I was before MS came along but I have learned a lot about myself in the process.
MS has taught me to be more caring, compassionate and loving towards others. It has humbled me. No one wants to be in a place where they have to use a wheelchair just to get around in their everyday life or need someone to wipe their butt when they go to the bathroom. That can be really embarrassing. Even needing help to take a shower is a humbling experience. Those are not things people like to talk about.
They don’t talk about the bladder problems that happen with MS either. Some people need a urinary catheter because their bladder has stops functioning as it should. They wear a urinary bag or pouching system every day just to empty the urine their body creates.
People don’t talk about the fact that your breathing scares you. Sometimes the muscles across your ribs tighten up keeping you from being about to get a deep enough breath leaving you gasping for air.
It’s not said enough that sometimes when you are eating, things can go down the wrong way because your throat doesn’t want to open up properly. Or the fact that you can no longer drive without causing an accident due to poor depth perception or numb limbs that make using the gas and brake pedals difficult. Or that you can’t remember thing without making a ton of notes but even with notes as reminders, many times you lose the paper you write down it on. Or that just pouring yourself a cup of water can bring you to tears because you can’t hold the cup without trembling and spilling it all over the place.
Those are the things people don’t talk about.
The thing is, I cry, I scream, and I struggle behind closed doors. I’ve been judged, stared at in public and have even lost friendships all because of MS. But regardless of everything I’m facing, no matter what happens to me or how down I may feel, I’m a fighter. Every morning I wake up in this battle. It’s not one I chose but it’s the fight I’m in so when I wake up, I come up swinging with all the strength I have.
Sometimes I’m weak and MS wins but even on my worst days I’m a winner. It’s because I never quit. I have the courage to carry on even when my strength fails me. I may never feel better but the battle isn’t over and neither is my life. I’m simply living it differently than I used to.
1. Simplify your life.
Well said! The harsh reality is that only the one living with MS can truly understand what it is like living with MS. Personally I feel it is a waste of my time and energy trying to explain this to one. I focus on getting through the day to day struggles with MS.
Explaining can truly be hard. I get it. I’m glad you have been able to focus like you are… day by day. Hugs…
You have covered everything. Difficult to read and can’t imagine how it was to write
Definitely hard to write… harder to live though. Hang in there. xoxo
Well said… Absolutely NO ONE knows the struggles of MS but the person who is going thru it!!! My struggles and discomfort is not the same as the next guy but we can understand each other’s suffering… I hope your having a wonderful day Penelope and all MS WARRIORS 🙂 🙂 🙂
So true. We are all different by the same. Have a wonderful day yourself. xoxo
Your post brought tears to my eyes this morning. You could have been describing my husband, who also had PPMS. I saw the struggles he faced every day, and it left me feeling so helpless, because there was nothing that either of us could do to stop the progression. Don passed just over a year ago. My heart goes out to you, Penelope. Don and I have followed you right from the start of your posts. Thanks for taking the time to share your experience. Sending a giant hug your way.
Well said Penelope, well said
so true and you’ve described me!
I didn’t chose this and God knows that I would not be there if I had any control over it.