Many people with MS look healthy despite being sick. It IS an invisible illness and unless you’re using a wheelchair or another device to help you walk, how would anyone know? I like to think I’m one of those people who look healthy although I have MS. I realize most of the healthy people in my life have no clue what MS is. If they do, they sure don’t know just how ravaging a disease it is. How could they when all they are seeing is someone at the gym? Or on my bicycle. After all, I’m a cyclist and a very proud one! Admittedly, at the gym I don’t even want to think about “MS”, however, the pain and restrictions remind me on a daily basis that I have MS.
All of this, I’m a fighter! A warrior! It’s no wonder people aren’t aware of how debilitating it is. On one hand I want to be STRONG and I don’t want to be considered “disabled”, and what I have learned is, I can be strong and disabled and fight this disease at the same time.
It brings to mind my first appointment with my now MS Neurologist in N.Y.C. He asked me, “how far do you ride your bike”? Quickly and proudly I replied, FIFTEEN MILES. “FIFTEEN MILES”, he asked? Part of me wanted that to be enough for him to question my diagnosis. Naturally it wasn’t, he knew better. It’s easier to ride a bicycle than it is for me to walk. Point being I had to let him know I ride fifteen miles and I’m strong!
I’m constantly fighting being fearful of the future although it’s gotten easier. While MS never goes away, nor do I have a remission, it’s taught me to live day to day. The best I or anyone with MS can hope for is no or slow progression.
There’s also different types of Multiple Sclerosis, some more debilitating than others. I have a progressive form of MS. Now, if you were to look on YouTube for Relapse Remitting MS, you would find a gazillion videos. Progressive MS, not so much. When I talk to people most aren’t aware of the different types of MS.
I still meet people who have no idea what Multiple Sclerosis is. Just last week someone thought I had Muscular Dystrophy.
I’m always surprised when people say they think the treatment for MS is too aggressive. Too aggressive? Do you know what this disease can do, I ask?
I can only speak from my experience what “fighting MS” is. “My MS” may be totally different from someone else’s MS. It all depends on the location of brain and/or spinal lesions. My arms and legs burn so badly accompanied by deep constant nerve pain (one of my first symptoms in 2011) and my wrists, hands, and fingers becoming stiff….sometimes losing dexterity, that I fear not being able to turn the steering wheel when driving. I have ubered many times in lieu of driving. It’s just not worth it. Or, at times my cell phone feels incredibly heavy just holding it. Swallowing is hard. For instance, eating my favorite vanilla frosted donut with sprinkles from Dunkin’ Donuts and a piece getting stuck in my throat that sits there for a couple of hours and there’s nothing I can do. Or sucking on a lifesaver and choking on my saliva was something that only happened once thankfully because I love my lifesavers. I’ve gotten used to not being able to feel the left side of my body from my foot to my head, and walking until I can’t which is now one block, maybe two on a good day before my leg drags. I’ve contemplated making my home wheelchair accessible because my legs are slowly weakening, and I want to be prepared. It doesn’t scare me, honestly. Not being prepared scares me. That’s the thing about MS for me anyway, once you know your legs are weakening, you just pray it leaves your arms alone.
And then there’s the little things like being unable to feel the water run down my face that I’ll never get used to, or feeling the temperature of the water on my face. This is because MS demylenated a facial nerve in my brainstem (which also left me with a crooked smile). Talk about the little things that become big things! MS fatigue is my MOST challenging symptom and working out regularly has helped immensely. The fatigue is comparable to walking through three feet of snow to do a simple chore. Everything is just so tiring, it’s so hard to explain. I miss waking up feeling refreshed like I used to after a good nights sleep. Or, while you’re out, tripping and losing your balance either becomes comical, or makes you paranoid that people will think you’re drunk. Then there’s times when someone asks a question I know I should know the answer to, however, the lesions in my brain are slowing cognition at times and I feel like a complete idiot. Add in tremors when they randomly occur, making you shake….talk about embarrassing. Thankfully I haven’t had the tremors lately and I chalk it up to working out. I only get tremors now when I’m over lifting weight or becoming fatigued. My body will start to tremble and I know I have to stop. In the beginning I had tremors nearly every day working out so I AM stronger in that way.
These are things people can’t see.
I remember the day I was diagnosed and the Neurologist telling me “attitude is everything”. Having a positive attitude and being grateful for everything this disease has taught me and brought me truly helps me through. Not much bothers me anymore.
Every day I can pick up my dogs is a good day.