I assume when most people find out I have multiple sclerosis they take what knowledge they have of the condition and relate it to what I am going through. I imagine others truly have no reference for what the disease is like and do not care to investigate further. I do feel there has been an occasion or two of someone going home and doing a little research to find out. Those people are truly unique. The ones who come back around and say, “I was reading about MS to learn more about what you are going through” are the friends who will forever have my heart. Then, every now and then, you come across a brave and curious soul. Forget Google. These people will look you straight in the eye and ask, “What’s it like?”. I admire the daring. For the record, I have never been asked this by a stranger. I imagine I would not appreciate the boldness as much in that situation. Coming from a friend, though, I find it endearing. I like they care enough that they want to know more.

The only thing I don’t like about the question is that I have such a hard time answering it. I want to tell people what it feels like. I want them to know. It would make me feel better to have the people close to me understand what I am going through. It is just not that easy, though. I can explain in detail, but they will still never really actually know. I can tell my best friend that I am too weak to grip a pen to write my name but to adequately explain what that feels like is impossible.

The thing about my MS is that it is always there. Of course, everyone’s MS is always there. Some people are fortunate to have milder symptoms that can go unnoticed unless their condition is provoked. For me, MS is a constant factor in my life. It is in every step I take. It is in nearly every move or motion I make. Every waking moment it is with me. When I wake up during the night, it is there too. It never slips quietly into the background. Even sitting on my couch typing this, I am fully aware of the tension building in my legs and know I need to shift positions soon.

When you have MS, nearly every thought is geared toward your condition. Nearly every action is planned around it. Buying a new mattress means considering how easily you will be able to get onto and off it in a few years as your disease worsens. Buying a new home means considering stairs or no stairs. It also means thinking about how easy it is to make wheelchair accessible. Buying a new car means considering how high you need to step to get into it. Living life day to day means considering how much longer you are going to be able to work and if you need to be putting away more money for when the time comes you go on disability.

Then there are the short-term considerations that consume you on a daily basis. Deciding to take a flight of stairs in the afternoon may mean a shorter dog walk in the evening. Picking up something heavy and moving it yourself instead of asking for help could mean your arm not working the rest of the day. Wanting some alone time and walking the extra steps to your secret quiet spot on your lunch break at work may mean struggling to walk to your car after your shift. Planning a vacation means buying the “Cancel for any Reason” insurance because you have no idea what your life will be like in six weeks.

So, to answer the question, “what is it like to have MS?”. It is awful. It is undeniably the worst thing to ever happen to me. It affects me inside and out from my head to my feet. I deal with it twenty-four hours a day, seven days a week. It has taken a toll on my life and affected my personal relationships. After two years I am still learning to cope with the changes.

That is the easy stuff to explain. What it actually physically feels like is a little more complicated. That is the part I assume people want to know about when they see my body failing and are prompted to ask. I will start by saying it is scary to sometimes not have any control over your own body. My entire life I have been amazed by how the brain controls everything. Especially walking. I have spent hours in the woods alone with nothing but my own thoughts. My mind would often drift to how I place one foot in front of the other and propel my body forward. I would try and break it down. I would listen for my mind to give my brain the command. I wanted to pinpoint the moment I told my brain I wanted my leg to move. It was impossible. It was such an automatic process. Walking just happened. I know it is not the same as breathing or my heart beating, but it felt like it. Of course, that was before MS.

Putting one foot in front of the other looks and feels very different than it did a couple of years ago. Now, I am easily able to pinpoint the moment I tell my brain I want to move my legs. It is no longer automatic. It has all become much slower and more planned out. I ask my brain to flex my hip and bend my knee and pick up my right foot. Then, I ask my brain to do the same on the left. This is repeated until I get to my destination. That little voice inside my head constantly saying up and down. The further I walk, the less my brain and legs are able to cooperate. I have no pain. But, I can feel my nerves screaming. They want to deliver the messages so badly, but the path is blocked. Eventually, my right leg can not hear my brain at all and it stops working.

I reference my leg because it is the most noticeable symptom. I limp and drag my foot behind me. In actuality, the entire right side of my body gives way. I can no longer hold myself up straight. My right arm contracts into my body and my fingers curl into a fist. I feel my right shoulder droop. Again, I have no pain. What I do have is paralysis coursing down one side of my body. The effort my nervous system puts forth to move my body is nauseating. Luckily, it will temporarily resolve with some rest.

This is my MS in a nutshell. I anticipate more posts describing the other phenomenon my body goes through on a daily basis. I am starting physical therapy again in two weeks, so there will be much to update.