Sunday, August 9, 2020

Journey with Multiple Sclerosis: 6 Months





Multiple Sclerosis. I asked myself "what does that mean?" the moment it left the doctor's lips. Exactly 6 months ago today I was told those words and diagnosed with the disease. If you're unfamiliar like I was in the beginning, MS is an autoimmune disease. The immune system essentially attacks myelin, which is the protective layer around nerve fibers. Unpredictably the disease interupts the the flow of information between the brain, and the brain and body. There is no cure. 

 The Onset: The onset for me happened just when I returned from a market trip to NYC. I had what felt like vertigo and went to an urgent care for a consoltation. The doctor believed the same as MS can manifest in ways that lead to misdiagnosis without a series of tests. I was given medication and told the symptons would subside in a few days. Just two days later I knew like those things you "just know" that something was not right with me. I was unbalanced like literally stumbling around my house, unable to focus, and extremely fatigued. Imagine being on a tilt-a-whirl that doesn't stop. I decided to go to the emergency room, a place I don't think I've ever been and the tests began. Six hours in the emergency room, countless blood tests and MRI scans, I was told of the disease just before before the day ended. The next day a neurologist came to speak with me about MS and explained that what I was experiencing was a flare up. I had to be admitted me to the hospital for five days. Five days of steriod infusions to aid in the reversal of the severe flare. 

 The Flare-Up: After my initial onset of the diesase I tried to go back to life as normal literally returning to work the very next week. To be honest this was probably the most trying time. Pretending to feel well when I didnt. Pretending to feel strong when I was weak. Pretending to have answers when I was confused. Those few weeks immediately after the onset I thought "Ok I can do this". Little did I know that what I was about to experience was the most diffcult of my life. At the end of March around the same time I was furloughed from work, my right leg began to feel numb. At that point knowing a little of what MS was capable of I thought nothing of it until it started to spread. Eventually in the days that followed the numbness was throughout my entire body leaving me unable to walk without assistance and without full use of my hands. By this time Covid was raging through the country and I was not permitted to go to the hospital for steriods. Instead they the 5 day round had to be admistered at home. Does being hooked up to an infusion drip sound easy? It isn't! My mommy had to be with me to to help with the daily infusions and generally getting around the house. Did I mention I had to use a walker? These are the things that are not said. I can't even describe the many tears I cried throughout all of this. 

 The Flare-Up Again: At the end of April I experienced another MS symptom, common and temporary but scary as hell. Called optic neuritis, my right eye went completely blind. While I was able to still function physically having recovered from the delibiating attack just weeks before, my mommy came back. Another round of at home infusions, healthy eats, and rest began to turn around the symptom clearing my vision. 

 Through everything I did a lot of research looking for any and all helpful tips I could find. The best help of all was from family friends who have the disease. One friend in particular told me not to focus on all of the medical stuff (thats what doctors are for) but to focus on recharging myself. She cautioned that while you're maintaining a tough exterior that your internal thoughts can drive you to depression. There were days that I felt like I was losing myself to ill thoughts of the future. The support fo my family and friends was the tipping point. Being able to share my feelings and fears, crying in my dad's arms, and letting out a good scream have been. 

 It sounds weird to say now but I've never felt better in my life. Even before I was diagnosed I was not in a good place. For awhile I attributed much of how I was feeling to simply not sleeping enough. I've always been an extremely hard worker and focused on my goals but I let myself get to a place where I was no longer making myself the priority. Now that I know the symtoms, looking back over the past few years the signs were there. Signs that passed as insignifcant so I brushed them aside and kept pushing forward. Truth be told MS has triggers and for me it was stress. If you don't know yet stress is not good for you mentally or physically. 

 I encourage all of us to keep ourselves as the priority and do whatever possible to keep the stress in your life to a minimum, MS or not. Does MS absolutely suck? Why yes, yes it does but it has brought me so many lessons. Life is precious and I chose to not spend my days worrying about every numb finger, or tingling foot. Instead celebrating the good days are what I look forward to. I know there are people around the world suffering far more than I, so for them and for me remember this: "Love your life, enjoy every moment"

Always,

Ashlei 
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