I am not doing so well physically or mentally at the moment. Mainly because I am in the throes of yet another upper respiratory infection. Specifically, I am on day thirteen. If it runs the same course as the last infection that would mean I have another eight days to go. To say I am miserable would be an understatement. As awful as the coughing, congestion, and sleepless nights are, what is happening to my nervous system has been off the charts. Two days ago I experienced the worst and most terrifying multiple sclerosis symptoms of my life.

For a lot of people with MS, changes in core body temperature can have a huge impact on symptoms. Even a tenth of a degree can set off a pseudo-flare and leave a person limping. Some people are sensitive to heat, while others are more affected by the cold. Lucky me, any fluctuation in temperature is detrimental to my ability to function. With the cold, my body stiffens. My leg locks into a straightened position, my knee refusing to bend. I often refer to it as “pirate leg syndrome” as I limp around with what feels like the equivalent of a wooden leg. Each step with my right leg involves swinging it from the hip in a half circle in the general direction I want to go.

The heat has the opposite effect. The smallest uptick in body temperature turns me into putty. I struggle to walk as my right leg weakens and refuses to support my weight. My knee struggles to flex to lift my foot from the ground while my hip struggles to lift my knee forward. My toes begin to drag and I trip and stumble. My right arm refuses to raise and my fingers fail to grip. These things happen with normal, sustained daily activities as my muscles start moving and warming up. This is what happens when, for example, my core body temperature rises from its normal 98.1 to 98.2. All of that pales in comparison to the damage a fever wreaks on my body.

I have been struggling will illness after illness since starting my current disease-modifying therapy, Kesimpta, in November. Every monthly injection seems to be followed shortly by my body succumbing to another virus. What follows is an upper respiratory infection that lingers for weeks. As with most illnesses, my temperature rises as my body fights against the virus. I take fever reducers like I am eating candy. I can tell the moment my body starts to heat up. It is not so much in the heat coming off my skin, but more in the inability to move my body.

On March 3rd I became symptomatic with COVID. My second battle with the virus in less than five months. Less than two weeks after recovering I succumbed to another virus, a virus that my body is still currently fighting. I have maintained a low-grade fever that has been controlled with medication for over a week now. The fits of coughing have been the hardest workout my abs have seen in over a year. To say I am tired would be a huge understatement.

Two days ago I took my dog to the park. I was too weak for our usual walk around the neighborhood and felt this would be easier. As we got back to the car, I had my first experience of fearing I was going to be unable to drive safely. My right leg was not cooperating with any of the basic commands. My foot would not flex or extend on its own. I sat there. Then I sat longer. Eventually, I was rested enough for my leg to come back to life enough for the four-mile drive home.

At home, things were not much better. It was impossible to lift my leg. My foot drug behind me with every step. I made it to the kitchen and sat down on the floor, something I do often to let my body rest while I pet and love on the dog. I did not realize what a mistake that was until it was too late. It is not easy for me to get off the floor on a good day, but this was different. I struggled to even swing my legs around from underneath me. My body refused to lift from the floor. My arms were too weak to push up and there was nothing close enough to pull myself up with. I was stuck. I rested longer. The energy I burned at my failed attempts was enough to deplete me.

I was finally able to scoot myself close enough to the counter for it to be within reach. After an epic battle, I was able to maneuver my left leg into a position I could work with. I did my best to push my body up with my left hand as I reached for the countertop with my right. My right arm did not move. I collapsed back to the floor. The only thing I was accomplishing was to completely exhaust my already sick and weakened body. I rested again. With my next attempt, I would at least be armed with the knowledge that my right arm was not going to be of any use.

I tried again. I gave it everything I had left. I managed to raise up high enough to throw my left forearm on top of the counter. I held there. I was too weak to pull myself the rest of the way up and too determined to fall back to the floor. So much flashed through my mind. Two years ago I was challenging myself to pedal to the top of mountains or walk endless miles through the woods. Today, I was struggling to stand up.

I managed to finally get my feet underneath me. My upper body collapsed over the counter. I cried tears of relief and sadness at the time. This is my life now.

I had a hunch for the reason my body was suddenly struggling. I made my way to the bathroom to retrieve a thermometer. My temperature had risen to 101.4. I thought I had taken acetaminophen a few hours earlier. Maybe I had and it wasn’t working. Most likely, I had forgotten it. I swallowed two Aleve, the closest thing to me.

It would be impossible to describe the level of fatigue I was experiencing. It was excruciating to hold my body in an upright position. I have never been so tired in my life. I made the decision to use anything that was left in me to sit in a cool shower and let the water hit me. After dragging my right leg over the side of the tub and into the shower, I realized I had made another mistake. If I sat down, there was no way I would be able to get back up. I stood there in the water hoping for some sort of revival. It never came. I made my way out of the shower. I reached for the towel with my left hand. My right arm was paralyzed and would not budge. I dried what I could and left the rest to the air.

By the next morning, I still had a low-grade fever. However, ninety-nine degrees was much more manageable compared to what I had experienced the previous evening. I had been on the fence as to whether I would continue Kesimpta and this current infection has convinced me that it would be in my best interest to seek another therapy. Kesimpta will be strike two for DMTs with me. Here’s to the thrid choice working like a charm.