My Life is Over Vs. I Can Beat This

My first thought when I heard my diagnosis was “my life is over”. My second thought was “how can I beat this”.

With my multiple sclerosis diagnosis came a lot of fear and doubt, and I mean a lot. My normal is to pick a situation apart and view it from all angles. I did nothing less than that with my diagnosis. I spent hours on the internet researching. I needed to know what to expect. I needed to know what medicines I should be taking, what exercises I should be doing, what I should be eating or not eating, if I should take supplements or avoid them, what was the minimal amount of sleep I needed each night, and on and on. It consumed me. It still does sometimes, especially if I catch wind of a new research study or mobility aid.

The uniquely frustrating thing about MS is, just that, its uniqueness. It is often referred to as a snowflake disease since no two people will present with the same set of symptoms. MS symptoms are based on the location of lesions in the central nervous system. These lesions occur at random, solely depending on where the immune system attacks. No two people will experience MS exactly the same because no two people will have the exact same lesions. This complicates matters. If a disease is different for everyone who has it, then medications and therapies are going to be different for everyone.

Nearly every medical diagnosis is going to vary slightly from person to person, and what works for some may not work for others. However, MS medications and therapies are a hodgepodge of hit or miss and trial and error. One person thrives and regains mobility on a medication, while another ends up in a wheelchair. One person takes a medication for 5 years with no advancement in disease progression while another has three flare ups a year in the same time span. It is not uncommon to see people with MS switch between multiple medications as many only seem to keep the disease at bay for a short period, then fail.

I was overwhelmed by the conflicting information. This works for him, but not for her. This diet helped this many people, but not that many people. This diet helps rebuild myelin, but in exchange you’ll get heart disease. These mobility aids are great, but you can’t have them because your insurance won’t deem them medically necessary. This medicine will definitely help, but don’t take it because you’ll get Alzheimer’s. This medicine is seventy six percent more effective than that medicine that gives you breast cancer that is only twenty six percent more effective than that other medicine that gives you liver disease. Take this, not that. And, in the process, decide which system you want to destroy in exchange for a small chance at helping your central nervous system. I was overwhelmed and put the decision in the hands of my neurologist.

My neurologist started me on the newest, biggest, baddest medication out there, Ocrevus. It had only recently finished clinical trials and gained FDA approval for treating MS. I was one hundred and ten percent on board. I’ve always exercised. I’ve always eaten well. I was in pretty great shape when I was diagnosed. I didn’t think diet and exercise would be the cure to all my problems since they didn’t prevent the problems to start with.

Ocrevus was being hailed as the next best thing to finding a cure. A majority of people in clinical trials were showing zero progression of the disease. Not only was Ocrevus stopping the disease, but there were reports of people regaining mobility. It would seem Ocrevus was actually making some people better.

It took nearly two months of phone calls and emails to get Ocrevus approved by my insurance. I was in shambles waiting for replies. At roughly $60,000 per treatment, self-pay was clearly not an option. I needed this medicine, and I needed it months ago. Finally, on May 3rd, 2021, six months after my first onset of symptoms, I was sitting in an infusion chair.

Ocrevus infusions are every six months and take six to eight hours. I cried nearly every second I was sitting in that chair. These were my main thoughts while the medicine dripped slowly into my veins.

I Will be in a Wheelchair

This is something I still think about daily. I believe most people equate MS with wheelchair use. I am one of them. Most statistics state that about one third of people with MS will require a wheelchair 20 years after diagnosis. One third doesn’t sound like a lot, unless you have MS, then it sounds like an astronomical amount. I really don’t like those odds, especially considering my biggest issue with MS is mobility.

I Will Never be Able to Ride my Bikes Again

It sounds dramatic, but in some ways it was actually true. I am still able to ride (somewhat). What I actually should’ve told myself, that would’ve been closer to the truth, is that I will never ride bikes the way I want to again. As much as I still dream about it, my days of racing with my friends is over. My days of setting out in the early morning fog for hours of zipping through my favorite forest trails are over. My days of group rides and parking lot beers is over.

Nearly two years later and I am still fighting to beat this one.

I Will Never Hike Again

Hiking was my favorite Fall/Winter activity. I lived for the changing season and the rush of summer tourists to be on their way back home. I loved going into the woods for an entire day. I’d start in time to watch the sun rise and then set out to explore new territory. Sometimes I would be racing the sunset, but always with lights in tow, just in case.

My first symptoms started on a sixteen mile hike. I took 41,997 steps that day. I have not taken that many in a single day since.

My favorite feeling in the world is the sheer enjoyment of rounding a corner in the woods to see something new and wonderful. Hours of walking paying off in a waterfall, cave, arch, or other magnificent rock formation. This is something I will never get to experience again, but, like biking, I am still fighting for it.

I Will Have to Stop Traveling

The majority of my travels are solo, which can be quite intimidating for the youngest and healthiest among us. Now, I’m doing it with a disability. A disability that fluctuates from perfectly fine one moment to unable to walk the next. A disability easily affected by changes in climate. A disability that may not be easily explained to some cultures or accommodated by others.

I’ve made one international trip since my diagnosis. I had zero issues. I have another trip planned in a month. Again, like hiking and biking, traveling is something I will fight for my body to be able to continue doing.

I Will Lose my Friends

Most of my friendships revolve around cycling. We would meet for group rides. We would carpool to the trail head. We would have food after the ride. We would hang out in the parking lot and drink a beer and chat about nothing in particular. I knew without the bikes to connect us that some of my friendships would start to fade. And they did. Acquaintances I would see on a semi-regular basis became faces lost in the brain fog. My actual friends are still around.

I Will Lose my Job

I spent a lot of time contemplating whether or not to tell people I work with. My job can be physically demanding. I did not want my coworkers thinking of me any differently or seeing me as incapable. I was also afraid I would be purposely overlooked for job advancement opportunities. Worst case scenario, I was afraid of losing my job all together if I was no longer able to perform the duties expected of me. After lots of research, I decided what was best for me was to tell a few select people I work closely with. My MS is not a secret. I am not upset if they tell others, which they have. I have personally chosen not to make a deal out of it in the workplace until I have to.