Invisible War, Everyday Battles: Living And Coping With Multiple Sclerosis (MS)
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I drop more things than I care to admit. I don’t just trip over my own feet - I lose my footing for no apparent reason. Most days, I wake up from an eight hour night feeling as though I’ve only slept for two. I never know what to say when someone asks, “How are you today?” Do I lie and say I’m fine? If I’m honest, people will assume I’m exaggerating because “it can’t be that bad” to be in constant pain because my body attacks itself. It’s a kind of pain that can’t be described and can’t be seen. This is what it’s like to live with Multiple Sclerosis (MS).
Multiple sclerosis is a rare nervous system disease that attacks the casing of your nerve cells. The damage slows down the messages between your brain and the rest of your body. There are three main types of MS: relapsing-remitting MS (RRMS), primary progressive MS (PPMS), and secondary progressive MS (SPMS). I was diagnosed with RRMS. Relapsing-remitting MS is defined by periods of stability in between relapses. Relapses are episodes of new or worsening symptoms not caused by fever or infection and that last more than 48 hours. In other words, if you develop a new symptom a flare-up is most likely soon to follow. No two patients with MS are the same. What is a symptom for one person might never affect someone else even if they are diagnosed with the same type - this is why MS is so hard to diagnose.
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Growing up wasn’t easy. My mom was very ill and in and out of the hospital. We lived paycheck to paycheck. My parents separated at the age of 13, it was a toxic and abusive relationship. My mother passed away when I was 16. My father couldn’t handle the responsibility of children, so I grew up. I graduated high school and left the small town I called home for college. After graduating, I got a job working with high-risk students who had challenging backgrounds. My life was getting better.
I was diagnosed with this disease at the age of 24. I was fortunate - it only took four months, three MRIs, and four doctors to get me to this conclusion. Allow me to set the stage: it started with a neck injury at work. I went to the nurse, had it documented, and didn’t think of it very much afterward. At the time, the nurse didn’t see a reason for me to be concerned. I went home. A week later while I was enjoying my winter break, I couldn’t lift my left arm above six inches without crying in pain. I chalked it up to sleeping on it wrong and sucked it up - but another week passed and the pain only worsened. When I finally went to the doctor, he told me there was nothing wrong. He said he could refer me to a specialist but that I’d be wasting my time. Now, the nurse at my job thought differently. He made me file workers compensation and I was immediately seen by a doctor that same day and diagnosed with a pinched nerve. After three months of physical therapy and my symptoms not getting any better, the first MRI came.
I was released from that doctor’s care. I got a referral from a random doctor to see a neurologist who officially diagnosed me with MS.
Society has taught us that if you cry you’re weak. If you fall? Wipe the dirt off and try again. When my mom passed away on a cold, Tuesday morning, I was in school the next day. I received my diagnosis at 9 am on a Friday morning, over the phone. My boss made me go home. Because after all, big girls don’t cry, right?
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I’m 26 now. Two years have passed since the diagnosis. One year has passed since I’ve started taking pills twice a day to slow down the process. I’ve had more than my fair share of MRIs and CT scans. I’m pretty much on a first name basis with the staff at the neurological office. I’ve had two major flare ups, one almost admitting me to the hospital. But thankfully I’m able to get out of bed and go to work every day.
MS can be a crippling disease, mentally and physically. Living with an invisible disability is difficult. I appear healthy. I can stand up, walk, jump, and run. I can’t do a cartwheel...but that’s only because I never learned how to do a cartwheel. But on the inside, my body is fighting everyday to stop the attacks on my nervous system. I have dizzy spells that come and go, migraines that hit like a truck behind my eyes, and random twitches and numbness that run down my shoulders and arms. Keeping up a healthy appearance in front of friends, family, and co-workers can really do a number on someone’s mental health. If you know someone who is fighting an invisible illness believe them, listen to them, and take some time and research the illness. It takes 30 minutes, but your friend will thank you.
Here are a couple of websites that helped me after my diagnosis:
https://www.nationalmssociety.org/What-is-MS
https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269
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