Patient Blogs | Multiple Sclerosis
What I Wish People Knew About Living With MS
photo of woman gestering with hands during talk

“Do you sleep well?” “Maybe you should change your diet.” “Have you tried yoga?”

We’ve all heard this before, right? The clueless suggestions and advice people give us when we say we have a neurological condition called multiple sclerosis. Don’t you want to get inside their heads and switch a couple things in there? We all know that feeling.

I’m sure that most of the people don’t mean anything wrong by it, and they’re probably even coming from a good place. But honestly, sometimes we don’t want to entertain the nonsense. Especially when the comments are borderline unsensitive and lack empathy.

MS is complex. Even the experts have trouble understanding the scope of the disease in its entirety. So can we really blame them? Should we get mad, should we ignore them, or should we educate them?  I guess it all depends on what kind of day you’re having.

From the moment I wake up, I know I have MS. Firstable, I’m sluggish. I’m slower than a sloth. It’s like my left leg needs to ask permission from my right leg to start moving. Are you familiar with a “charley horse”? They’re very painful cramps on my calves that squeeze the life out of me as I stretch my legs. After alerting my brain: “Here we go again,” I have to manage to make it to the bathroom using my already aching, heavy legs fast enough without having an accident.

For some unexplainable reason, my left hand -- that’d be my good hand -- always hurts in the morning. Sometimes it starts to hurt throughout the night and it wakes me up. This is the hand that I use to perform and assist with my bathroom duties. Many times, I have to just sit there until the pain starts to subside so that I can proceed to brush my teeth. I have to let the hot water run over my hand, sometimes more than once a day, every day, for the pain to go away.

Right away I go into warrior mode and start to do my functional exercises, like shifting my weight to my weak side to strengthen my leg, using my right hand to brush my teeth and wash my face. Like they say: “If you don’t use it, you lose it.”

This is just a small part of my morning routine. I still have to find a way to get enough energy to get dressed, put my KAFO and my shoes on, and start the day, kids and all. I usually have to sit down and take a break after coming out of the bathroom because my heart is pounding, like I just ran a marathon. In other words, it takes me forever to get ready and a major effort to just exist.

People think that because I carry this well, it’s less heavy. What they don't know is that usually, the better I look, the worst I feel. But I still did my makeup, and my hair looks great! I can camouflage better than a chameleon. It's a skill I’ve developed in order to survive.

I also have to break down into small steps every single movement that I make. I lack coordination, and it requires that I think through every little movement, as opposed to just doing it smoothly like an average person would do. Things just don’t flow as easy. There's a lot going on inside my brain that people can't even imagine. It can be exhausting and mind draining.

As a communicator, you’re supposed to be well versed and have a vast vocabulary. Well, in my case I speak two languages, but many more times than I would like to, I struggle to find the words. This must be my biggest struggle: aphasia. I’m constantly on social media, whether it’s on a video post, or live streaming, or something as simple as conducting a Zoom video call for my support group meetings, and the words just won’t come out. English or Spanish, it doesn’t matter. It’s not a matter of the language, it’s my brain. People don’t believe that I struggle with this, but for me it’s a real problem.

If people only knew of all the invisible symptoms we struggle with on a daily basis, like pins and needles, tingling, burning skin, eye pain, brain fog, and fatigue, just to mention a few, like the fact that we can get easily overwhelmed and even irritated by normal things like loud noises, big crowds, etc. We look OK, but our symptoms are still there.

This disease has taught me that you need to be kind to others because you don’t know the internal battle they’re fighting. It’s sad to see how some people get mad when you don’t move out of their way fast enough, not knowing that your legs are not responding. Or when they give you the evil eye because you parked at the handicap spot, but you don’t look disabled enough to fit their standards.

I remember one time, during my first year of being diagnosed with MS when I still didn’t require any walking aids, a guy told me, “You must be the most good-looking disabled person I’ve seen.” He certainly wasn’t admiring my beauty the way he was looking at me. I replied, “And you must be the smartest person I’ve come across today. Some diseases are invisible, educate yourself.” He still looked puzzled and didn’t know what to say.

Unfortunately, the world wasn’t built for the disabled. Our society’s mindset hasn’t been trained to consider that people with disabilities exist and have a life, too. There are great efforts to accommodate our needs when it comes to physical adaptations to buildings, parking lots, hotel rooms, etc. But it’s the mindset of the general population that needs improvement. That’s why I advocate every day on my social media platforms to bring awareness and spread the “orange love” as I like to call it.

In general, people don’t think too much about the needs of others. They’re self-absorbed and too worried about themselves. Everybody is caught up with life and minding their own business. I guess I could admit that I was just like them before I became disabled myself. So you can’t really blame them when they’re disconnected or completely unaware of others. It’s just the way they’re programmed. But one thing is for sure: “You don’t know what it’s like until it happens to you.”

As an advocate, I try my best to educate others, but also to share resources with the members of the MS community so that they can live an independent life to the best of their ability and not be left behind. After all, we all have the right to fulfill our dreams and live our best life.

On a good day I can complete tasks from beginning to end, shuffle many things at the same time, remember things, all without running out of gas. But the truth is that days like these are the exception, not the rule. Nevertheless, the show must go on, and I still have responsibilities and deadlines to meet.

MS affects my daily life in tremendous ways, and it interferes with pretty much everything I have to do. Sometimes it feels not only challenging, but almost impossible to get things done. If people knew how many times I have to postpone, reschedule, or cancel, they probably wouldn't believe me. I hate to leave things for the last minute, but with multiple sclerosis in the way, now I’m a great procrastinator. I just play it so well that I pass unnoticed. At the end of the day, I always deliver.

No matter what MS throws at me, I’m always ready for war. There are times when I’ve had to give in temporarily, but I make sure I come back stronger. I’ve had to reorganize my priorities, set new goals, and make modifications, but I always stay focused without losing my direction.

Even within the adversity and with all the obstacles you could face, if you’re committed to yourself and you refuse to let MS make the calls, you can create great things. You can still be productive, on your own terms maybe, but still productive. And when people have no idea of everything that happens behind the scenes, but you still come out successful, that sense of pride and achievement you feel is just unparalleled. The taste of overcoming MS: A sweet vendetta!

 

To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.

 

 

Photo Credit: fizkes / iStock via Getty Images Plus

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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