Tuesday, November 1, 2022

It is only Tuesday and this week has been nothing short of a nightmare. I can tell you when it started, but as to why I have no idea. Yesterday should have been a Monday morning like any other; for all intents and purposes, it was. I got up at the usual time, did the usual morning routine, and went to work. I do not look forward to going to work any day of the week, but I have come to realize it is good for me. Once my symptoms started worsening, I clearly saw I would not be able to do my job as long as I had intended. It really opened my eyes to how much I enjoy my work and that I will truly miss it when the time comes. As of late, work has also become a break from the weekends. I love my free time, but the weekends are simply sad and lonely. My depression soars and I have constant anxiety attacks. As much as I enjoy time to myself, it is currently not a healthy choice for me.

Walking into work on a Monday morning is like hitting a reset button of sorts. I leave the emotional pain at home. I have to. I do not have time for it once I clock in. There are other things to do. Other things to focus my mind and energy on. I do not cry at work. I do not panic. I simply do my job. My symptoms flare the longer I am on my feet. By mid-day, I have a noticeable limp. Nevertheless, I keep on and do what I am there for. I always save the tears for the end of the workday. I limp to the parking garage, sit in my car and let out any emotions I need to. Then I compose myself and drive home. This is my day, every day. Except for yesterday.

I do not know why, but my legs were toast when I walked through the door. It was only seven AM and I was limping like it was seven PM and I had just taken my sixteen thousandth step of the day. Not only that, but my emotions were off the charts. By emotions, I mean depression, anxiety, anger, you name it. I was mad, sad, and scared all at the same time.

I clocked in and set about my usual routine. I tried to distract myself with work but the feelings would not ease. I would have to stop in the middle of a task to compose myself. I would feel my voice shaking when I spoke to people. I would excuse myself to the bathroom where I would lock the door and turn on the water to drown out the sounds of my sobbing. It was made worse by how scared I was of what I was feeling. These were weekend emotions. This is the stuff I leave at home. Why did it follow me to work? Work was my safe place.

Mid-morning I sent a text, “I do not understand why I feel this way. It has been two years. Shouldn’t I have a better handle on things by now?”. Then, it all made a little more sense. November 1st, 2020 was the day of the onset of my MS. Tuesday would be my two-year anniversary.

When I was diagnosed with multiple sclerosis I knew without a doubt I was going to beat it. I was healthy. I was athletic. I ate well. I took care of myself. After my diagnosis, I decided I would do physical therapy. I would adjust my diet and eat even healthier. I would work harder. I would do whatever I needed to. I did those things and more, but I could not beat MS. I am not going to say MS won, I am going to say it has been a much harder and longer fight than I had anticipated. After two years I am still fighting. I guess I thought I would be closer to victory by now and the shock of realizing how much of my life has slipped by really got to me. Two years of my life were spent full of hope and desperation. Two years of watching the seasons change and seeing friends less. I had two entire years to do something, but nothing happened except I got sicker.

By complete coincidence, my MRI was scheduled today. My neurologist wanted a follow-up scan due to “worsening neurological symptoms”. We had already made the decision I would discontinue Ocrevus and be starting Kesimpta. I asked him why even do an MRI if the results would not change our plan of action. He explained it would be beneficial later on. We could call Ocrevus a “treatment fail” based on my symptoms, but we needed to see what, if any, damage was done while I was having the infusions. I agreed to the scan as I was honestly curious about what it would show.

As of this morning, my emotions have been much calmer. I do not have much anxiety in regard to my impending MRI. If the scan aligns with my symptoms, then it should show new or enlarging lesions. I have had at least one flare since the last time anyone looked at my brain or spine so I suspect new damage will be evident. Then again, one of the phenomenal things about Ocrevus has been the reported worsening of symptoms without any disease activity on MRI. This is the outcome I am most expecting and the one I may be the most upset with. It would mean I fit the profile for hundreds, if not thousands, of other people with MS whose quality of life has suffered greatly while on Ocrevus, yet there is nothing to back that up except our word and physical exams from providers. At the end of the day though, no disease activity is good news.

As a person with MS, you are told the best to hope for is NEDA (no evidence of disease activity). NEDA means you are stable. It means your immune system is not currently attacking your nervous system and that you are doing something right. As a person with MS, you secretly hope for that little miracle you hear others talk about. You want to hear about lesions shrinking and even disappearing. I haven’t seen any miracles yet; maybe I’ll get an anniversary present, though.