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.
About the Author
Lisa Bowser
MS kicks our butts at every turn. But we must not give in to it. I have actually been very depressed lately. I had to get off of my last medicine (Teriflunomide, generic Aubagio) recently. It was causing chronic diarrhea, and I hated to leave the house. I was having accidents and very self conscious about it. I am now on a rapid eliminator drug to get it out of my system as it stays there for up to two years. I am currently not planning on taking a new medication because I'm terrified of the effects on my body. I recently gave acupuncture a try. I'm going the more holistic route right now. It's a terrifying thought, but I'm giving it a go and praying my disease stays stable. They say a lot of people discontinue DMT's when they turn 55. I am 55 since May, so I'm praying that rings true. I look at all the medicines and see all the side effects and get really anxious about it. My anxiety is through the roof with this disease. God bless you and make you a blessing. Thank you so much for your articles. It's nice to know there are others out there like myself. As a side note, I also have a lot of problems with dizziness and vertigo. I am unbalanced a lot. That is one of my main symptoms. And the pretty constant MS hug. I have a lot of spasticity in my right leg, which makes sleeping not always easy.
Joann Smith
When my son was diagnosed with relapsing MS I moved in with him a year later and put him on all organic foods. He eats a good helping of organic vegetables and fruits every day. I also cut him back on the process foods. I cook only grass feed meat. It has been 4 years since he started. It stoped his headaches and fitigue. He is doing well.
Marybeth
Totally get your fear crashing…for me it’s falling. I was a long termer, diagnosed more than 30 years ago and I have secondary progressive MS. I practice with the MSgym and MSinglink both online programs geared for people with MS. I have improved so much by learning all of the ways to improve how I manage the MS. I use a rollator to walk distances but still place holes of golf using a cane. Look into these programs…they are super helpful and have a community of people experiencing the same this you are.🥰
Delighted Hands
I understand your desire to isolate; I did that when I was diagnosed at age 56! The first years were the worst because you are dealing with pain and exhaustion which has never been experienced before MS added to the feelings of grief for lost expectations. Slowly, you will learn to balance your activities and you will lose friends and make new ones who will understand when you have to cancel at the last minute! You are still You; find what things you can do and do them well! Care about and for others; carve out a new niche for yourself. You will have a lot of compassion for others because of your own pain! This is your life--don't miss out on all you have before you, even if it is very different than you thought it would be before MS!