Owner of a lonely heart
-is there happiness at the end of the tunnel?
My search for happiness; I believe, is still in progress. Still that needle in a haystack.
I was given a second opportunity. Thanking God that allowed me to come back to live after an awful fight against an autoimmune disease. The price: I lost my left eyesight.
I became disabled due to NMSOD Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic disease, is a chronic disorder of the brain and spinal cord dominated by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis).
Resilience gave me the power to overcome some of the obstacles I inherited unknowingly from my mom’s genes. It wasn’t my mom’s fault.
It’s just a bad game life is playing with me. I won’t let life win this time.
Diagnosed by doctors I will never walk again, I defied with uncertainty that I would walk again.
My story was criticized by many. Many blamed me of putting false hopes in many minds.
At 50 it’s when my journey started.
My overall health took a sharp turn when I east expected it. Over stressed, and bring workaholic by nature, I overstimulated my strength. Family and personal issues started to. devour my mind, my thoughts and my self confidence.
Soon I started to feel like a zombie, wake up, coffee, drive to work, lunch, go back home, kids, dinner, sleep.
Tomorrow- repeat.
I started to take work home
Not enough time
I felt I was not doing enough
I learned to manage my son’s issues at school, his classes, home bills, family issues, work issues, husband issues, friends issues.
I couldn’t turn around and leave.
I’m not that type of person.
I’m starting to feel overwhelmed, sinking on quicksand.
I needed help
But I couldn’t admit it
I felt disappointed
I felt deceived
I felt tired
Tired of working, I blamed my life, my goals, my family. Fear started to creep up on me. At the hospital, I wished not to open my eyes to ever see another day. With therapy and exercises I started to walk. Like a baby, had a walker, eventually walked by myself. Got discharged and went home after a year and a half. I got accepted into a program where I’m being closely monitored for developments.
Idk for how long. I know I need this treatment for life.
I’m scared.
I don’t want to go through the same hell I went at the beginning.
I’m afraid the illness may have relapsed
Not even painkillers work
According to my searching on the web, the life expectancy is 5 years.
Two are already passed.
I feel I can do more but feel short handed. There are days that I feel I can’t do more. My eyes feel tired, dried, many times feeling like another flare may come up, and my illness relapse.
It’s like a roulette wheel.
I want to be supportive as much as I can to my husband and son, but the uncertainty of how many years will I survive it’s not clear. I’m back to the roulette wheel.
Being the owner of a rare disease it’s no joke, going to sleep knowing you will never ever wake up, not knowing that I die already.
When the new days dawning, I’m afraid to open my eyes and realize I’m still alive, and another day, hours, minutes and seconds to survive, and slowly admit that other people still go outside and complain about restrictions.
I feel like an owner of a lonely heart.
No one will fight for me. No one will understand what I’m going through.
Wouldn’t it be good if you were in my shoes, grass is always greener over there,
Wouldn’t it be good if we could live without a care.
Google it – NMSOD life expectancy, 5 years. 2 years already passed by.
This story sounds like a rant. Only people that are or had been diagnosed with an autoimmune disease knows what I mean. No other option but to live one step at a time.
My left eyesight is lost. No way looking back. I can’t drive.
But I can write.
That’s were I am heading now. Hopefully to fulfill and live many more years than the expected. If God permitted, I will.
And tell people how I overcome my illness, giving many other patients that suffer of an autoimmune disease that resilience makes wonders.
Never give up.
