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Waiting for MS to Calm Down and Behave

I can still remember waiting for my first relapse to be over. Every morning I would wake up hoping that when I opened my eyes, the world would look crystal clear again and that when I walked to the kitchen to eat breakfast, my foot would not drag across the floor. As I’m sure you can guess, most of these days brought me nothing but disappointment. I would open my eyes each morning only to see the fuzzy outlines of everything around me, and as I walked to the kitchen to make myself breakfast, I had to be careful not to trip over my limp foot. And so, frustrated and impatient, I continued to wait for multiple sclerosis (MS) to let up and just leave me alone.

When would everything go back to normal?

Before long, I lost my patience. “It’s been three weeks! Why have I not made it to remission yet? I’ve been taking prednisone, giving myself shots, and taking cold showers! How much longer before I’m in remission and everything goes back to normal?” Obviously, I didn’t really understand what “relapsing/remitting” MS meant or how “remission” in MS even worked. I definitely had unrealistic expectations, but only at first. During this period of time after my diagnosis, my friends were all hanging out, going camping, and going on hikes as we had done since after high school. Life was going on for everyone else, but I was stuck at home waiting for MS to go away like it was just a bad cold or the flu. I didn’t think I would be ready to go out until I had “achieved remission” and I was going mad because I felt like I had waited long enough, but MS was still “acting up.”

If MS was sticking around, it’d have to come along

That’s when I finally decided that I didn’t want to wait for MS anymore. I had rested up, taken my meds, and I felt ready to go. Drop foot, and a little numbness weren’t going to stop me! Neither was my blurry vision because I had finally gotten glasses! My friends had asked me if I wanted to go on a hike with them and I said yes. If MS was going to stick around, then I guess MS would just have to come along for the ride because I was done sitting around at home waiting for everything to be perfect. I wanted to get out and live my life! So, I went on that hike with my friends; granted, it was an easy hike, and I lost my balance a few times causing me to fall on my butt despite the aid of the giant walking stick I had found, but hey, I got out. I now felt unbeatable because MS was trying to keep me from moving, but I still went out with friends and hiked a short trail in the San Bernardino National Forest.

I actually became more active in my daily life

This started a new trend for me; MS wasn’t going to prevent me from doing anything that I wanted to do. I was going to experience as much life as I would have if I hadn’t been diagnosed with MS because like I always heard, “I might have MS, but MS doesn’t have me.” I became a sort of “yes man” where I would say “yes” to doing anything that a friend asked me if I wanted to do or to any opportunity to travel somewhere. I had been diagnosed with a disease that often resulted in people not moving as much, but I had actually become even more active in my daily life. MY MS would act up now and then but ultimately? I usually didn’t let it ruin my plans; I wasn’t going to sit around and wait for MS to give me permission to do something that I wanted to do. That’s how I thought at the time.

My first major relapse

This remained my default attitude for years. Then, I endured my first major relapse which put me in a physical rehabilitation hospital for 6 weeks and ended with me asking my neurologist what the next step was to get me out of a wheelchair and back on my own two feet. She told me that I should just get used to the chair as it was the course of the disease; as if my current “predicament” was an inevitable stage of my illness. Well, if my “MS won’t stop me” attitude was a swimming pool full of gasoline, her telling me that was the equivalent of lighting a match and tossing it in. A willpower I had never before experienced in my life had burst into life, and all I wanted to do was work even harder to put MS in its place so I could continue to live my life without it holding me back from doing the things that I wanted to do.

Back on my feet

A little less than a year later, after finding a new neurologist, starting a new disease-modifying therapy (DMT), and continuing outpatient physical therapy (PT), I was walking down a cobblestone path to a post office in Chapalizod, Ireland to mail a postcard. It was addressed to that neurologist that I had seen after I got out of the hospital. On that postcard, I quoted what she had said to me about me being in a wheelchair, and next to that quote, I scribbled, “Thanks for the great advice.”

I don’t push myself like I used to

They say that teenagers tend to feel indestructible and in high school that was definitely me, but at this point? At the age of 23? I felt even more indestructible than I had ever felt before. I started the year off in a bed unable to move almost anything from the neck down and I ended it walking, on my own two feet, around a country I had always wanted to visit since I was about 10 years old. But over the next 5 years or so, that mentality somehow changed. I don’t know how, why, or exactly when it did, but it did, because now? I don’t have that same attitude… I don’t push myself like I used to, and I typically avoid going out to do the things that I used to enjoy doing in the early years of my life with MS. I’m not as physically active as I once was, and I don’t really travel that much anymore. I guess I feel tired and beat down by both MS and life.

I’m not sure how I got here

This “reality” only just recently dawned on me, and I hate it. I hate that I’m like this now. I’m not sure how I got here or how to get back to where I was. When I was in middle school, I went to the beach with a friend. We were bodyboarding around that point where the ground was barely touching our feet and where the shore wasn’t too far behind us. Then, the water started getting really choppy, I couldn’t feel the sand under my feet, and when we turned around to head back, the shore was somehow twice as far away as it was the last time we had looked back. We didn’t realize it at the time, but we had got stuck in a riptide and pulled far beyond where we were comfortable swimming.

I want to live according to my schedule, not MS’s

Why am I telling you this? Because me just recently realizing where I am in my life with MS feels like when I realized I was as far out into the ocean as I was all those years ago. I don’t know how I got here, I feel like it was just yesterday that I was as motivated to overcome my MS as I once was, but now? Now I’m back to waiting for MS to just let up so I can live my life, but that moment may never come. I need to get back to the attitude I used to have and just live my life on my time and not according to the schedule my MS has created. If I continue to wait for my MS to calm down and behave, I’ll probably always be waiting…

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Comments

  • CTLH
    3 weeks ago

    Yes Matt, I just talked to my husband about that last night before I went to bed, at 8pm as is my time limit. It’s quite the surprise and it stinks but what choice do we have. Nice article. Thanks.

  • Toddlius
    3 weeks ago

    Good article. I’ve gotten to the point to where I’ve got the attitude of “I’m good,” whenever a change is suggested, such as diet or exercise.

    Todd

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