“I was diagnosed with Multiple Sclerosis (MS) in March of 2020, after about 9 months of searching for answers to everything I had been experiencing. Several trips to my doctor, completed blood tests, various types of scans, and visits to the ER kept leading to no answer, until I was in the right place at the right time. While travelling and out of town for work, I had experienced my most severe symptoms yet; I had almost completely lost the ability to walk. It felt as though I had 100 pound weights on each leg. I went to the local hospital, and in the ER I was offered the opportunity to be admitted so that I could be seen by a neurologist. After 5 days in the hospital, I left loaded up on steroids, gabapentin, and a diagnosis: MS.
MS is often called a ‘snowflake disease’ because no two cases of MS are identical. In my case, I most often experience weakness, numbness in various areas of my body, tingling and electrical sensations, balance issues, sensitivity to noise, cognitive/verbal challenges, fatigue, and weakness. I usually experience at least one of these symptoms each day, but I have grown accustomed to living with these symptoms and have learned to accept them as normal. I am fortunate that these symptoms do not usually impact my ability to perform my job, interact with my family, or exercise, but on occasion there are moments I need to excuse myself so that I can rest and allow for my symptoms to subside.
By day, I’m a project manager for a software company; while I’m not at work, I’m doing my best to be a husband and father to my 3 kids. I also am an avid runner and prioritize exercise in my life, as I have learned that exercise helps me to feel better and overall tends to have a positive impact on my symptoms.
I am driven by two things above all else; first and foremost, I want to be the best version of myself that I can be for as long as possible so that I can be the husband that my wife needs and the father that my children need. All that I do is motivated by this desire. I strive to make choices that will allow me to fulfill this goal as much as possible. While many things are uncertain when it comes to a chronic illness, I try to take control of as many aspects of my life as possible to help me ensure the best possible outcome for me and my future. This includes making the right choices when it comes to diet, exercise, medications, supplements, sleep, and mental well-being.
The second driving force in my life is an insatiable passion to learn what I am capable of achieving. Prior to my diagnosis, I had been a casual runner, competing in one half-marathon per year and running 3 or 4 days a week. At the time I was diagnosed I couldn’t walk further than a quarter mile without having intense electrical shocks pulsing throughout my body. I decided that it would be really incredible if I could get myself back to a point of being able to run another half-marathon one day. 8 months after my diagnosis I had progressed from walking to jogging to running again, and I was able to complete my first half-marathon since being diagnosed. Even more impressive? I set a personal record, running that half-marathon 3 minutes faster than any of my previous races before being diagnosed! This sparked a fire inside of me to continue to see what I can do. Since that half marathon, I’ve completed 4 marathons (and had never even attempted one before being diagnosed!), I’ve run 31 miles in a single outing, I completed the Dopey Challenge at Disney World (4 races in 4 consecutive days – a 5K, 10K, Half Marathon, and Full Marathon), and am currently training for my first official Ultra Marathon – a 12 hour race designed to challenge participants to see how many miles they can run in the 12 hours. My goal is to run at least 60 miles!
One of the ways I cope with my illness is always trying to focus on the positive. I am the type of person who needs positivity to thrive, so I have learned to focus on the good even in the midst of the bad. When I was first diagnosed, I felt very alone and misunderstood. I looked for online support groups for people with MS, and while there are many out there that have great communities, I struggled finding a group that didn’t have at least some level of pessimism present. I knew that exposing myself to pessimistic outlooks might open up Pandora’s box of negativity in my world, so I decided to avoid those groups and start my own – based on the premise of optimism; a group where we acknowledge our struggles but remain optimistic and provide one another with encouragement and support. I often share not only my positive experiences with MS within our group and on social media, but also my hard times. Even when I share about the hard times, I’m always finding the silver lining or lesson learned that can provide inspiration for myself and others. Doing so gives purpose to my struggle. Suffering in silence sometimes has its place, but there are many others with chronic illness who may have similar struggles, and I feel that by sharing my positive outlook even when I’m dealing with MS struggles, it might help others in a similar situation to find a way out of the negativity they may be dealing with.
Sometimes it is difficult to relate my experience to others. Although I’ve been diagnosed for 3 years now, I still find it difficult to convey how I feel when I’m experiencing MS symptoms. Furthermore, when trying to explain what I experience to someone without MS, hearing responses like ‘I’m tired too, I get it,’ or ‘my friend/aunt/cousin/so-and-so has MS so I understand’ actually makes me shut down a bit. While I know these responses come from a place of empathy, they often have an unintended consequence of minimizing the experience of the person with chronic illness. I never would have considered myself a big ‘social media’ fan, but I must say, one of the best things to have come from my MS experience has been the wonderful community of fellow chronic illness warriors who often start from a place of understanding because while no two cases of MS are the same, we fight a similar fight and face the same uncertainties. I often feel better understood by people I’ve only come to know ‘virtually’ than people who have been in my life for many years. And that is not a criticism of people in my life! It is simply based on my experience of trying to relate to those without a chronic illness compared to relating to others with a chronic illness.
In sharing my story, I hope to help others to see that despite our struggles, we are capable of incredible things! For a very brief period after I was diagnosed, I started writing off aspects of my future – telling myself ‘because of my MS, I will never be able to do ______’. (Fill in the blank with any number of things!) But the truth is, as long as I CAN, I WILL. I decided not to prevent myself from at least trying to do everything in my life that I’ve always hoped to achieve, and even more. In doing so I’ve pushed myself to new limits, have found determination, strength and perseverance I never knew I had, and have reignited the optimism within myself to view life through a lens of hope. If you’d like to surround yourself with relentless encouragement and optimism, I invite you to join our Facebook Group called ‘Running with MS’ or to follow me on Instagram @runningwithms_official.”
Matthew
Toledo, Ohio