Why I’ve been living a sheltered life since my MS diagnosis
The unpredictability of my disease means I spend most days at home
As I sit down at my desk to write this, tears are streaming down my face. My mind, soul, body, and heart are beyond wounded from living with relapsing-remitting multiple sclerosis (MS). This burden that I bear has taken a toll on me like nothing else. I ask myself, “Why me?” But at the same time, I wouldn’t want anyone else to go through this.
I recently realized that after receiving my MS diagnosis at age 17 and experiencing the reality of life with the condition, I began to isolate and box myself into a sheltered lifestyle. Now, more than 10 years since my first episode of optic neuritis, I am tired of it.
Let me paint a picture of the box that I find myself living in. To protect my well-being, I don’t go out much or do many spontaneous and adventurous things because I am scared of the aftermath. Even if I don’t do anything physically taxing, my body still crashes for days afterward. I am bedridden with chronic fatigue, intense migraines, bad vertigo, and vision issues, such as blurring, flashing lights, and sporadic black spots.
The other weekend, I spent time at an uncle’s house. I hadn’t seen him in a few years, and we played board games and sat around talking for hours. It took days for my body to recover because of the fatigue and exhaustion, which left a yucky feeling coursing through my veins.
To put it simply, I spend most of my days at home because it’s better than the alternative.
Other than protecting my well-being, I also live in this box to keep others from having to deal with me crashing and burning. Whenever I am out with my loved ones, I fear the “switch” in my body might flip, resulting in a 180-degree difference in how I feel.
Once my body signals that my symptoms are about to explode, there’s not much I can do to prevent it from happening. I’m not sure if this is a sign of weakness or defeat, but nothing is really in my control when it comes to MS. And when my symptoms explode, my mood plummets, too.
My loved ones are very understanding of the unpredictability of my disease, but I still feel horrible when we have to cut short our activities because of my health.
As I ponder this, I have conflicting feelings about my sheltered lifestyle. I may be limiting my life experiences, but I also don’t want my memories to be tainted by bad MS episodes. How do I find a balance? Is it even possible? Am I a prisoner of MS? Will I always feel this way?
Ever since I experienced my first neurological episode at 14 years old, I’ve been scared because I don’t feel safe in my own body. I don’t know if I ever will.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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