Patient Perspective on Brain Health Series
NMOSD – A Rare Autoimmune Disease Personal Story
In 2018 without warning, apart from numbness in my fingers and later numbness on part of my face over the course of 24 hours, I woke up in a hospital bed with the left side of my body paralyzed and having lost 80% of my vision.
After being hospitalized for 4 months, I was diagnosed with Neuromyelitis optica spectrum disorder (NMOSD). NMOSD is a rare neuroimmune condition in which the immune system attacks cells in the central nervous system (CNS), mistaking them for foreign invaders. Common symptoms include vision loss, color vision deficiency, paralysis, paraparesis, weakness, numbness, spasticity, vomiting, hiccups, and bladder/bowel dysfunction.
Comparing my experience with other NMOSD patients, my diagnosis and start of treatment happened quickly. And now I receive IV treatment every six months, to help suppress my immune system and to help prevent any future relapses.
It is amazing how doctors today are able to help us, patients, saving our lives, but after that, we are alone with our grief and all the unexpected negative things that the disease brings.
Most of my vision has come back, but not enough for me to drive because it is unstable and can become worse, especially if I am tired or stressed. My body has recovered quite well too. I am no longer paralyzed. But I do have reduced strength on my entire left side.
The most challenging part for me today, is the spasticity and nerve pain.
Living with NMOSD is very challenging because you never know what to expect day to day. Some days I feel like I can have my old life back again, able to work again and do all the things I did before my NMOSD diagnosis. Then just a few hours later the nerve pain, brain fog and fatigue can be so devastating, that the only thing I can do is lie down and wait until it’s over.
In the beginning, I felt like the adjustments I had to make because of the disease were too demanding and I fought against it.
I had to be careful all the time, not to expose my brain to “too much” stimuli. My brain felt like a ticking bomb that could potentially explode at any time. It was important for me to remember to slow down and take breaks from everything, so my brain could relax, even though I was not feeling tired.
This was extremely difficult for me because I had always been a very active and energetic person, who liked to get things done.
At some point, I developed anxiety and depression.
I was feeling lonely.
I took many different medications, but they made me feel numb inside. I wanted to be my old self again, to be the happy person I was before. Even though I now had these disabilities. So, I continued with the medication for a while (it was necessary), and started doing therapy once a week.
The therapy was the turning point for me.
My anxiety stemmed from the feeling of not being in control. I was afraid of what this disease could do to me. I gradually learnt to let go and live in the moment. I started to see things differently and accepted my new life. It taught me to be kind to myself without blaming myself for the things I could no longer do. I learnt to listen to my body and make peace with the bad days – they are there to remind me to slow down. Yoga and meditation have become invaluable tools to keep me in touch with my body and mind.
In a completely different way, I am happier today than I was before I got sick because I had to review all the things in my life that weren’t working and change them.
In the darkest time during my illness, when I felt as if no one understood my grief, I tried to express myself through a poem.
I called it: “If my body ruled over me”
If my body ruled over me,
I would isolate myself and never be free.
Because the pain seams to never end.
Only those who lost a little of themselves will understand.
there are days I believe I’m going to run again and smile.
In the next day my pain lets me think I’m going to die.
Oh life what wrong did I do to you?
Peace and tranquillity was all I ever wanted to.
Now Thoughts scream, you’re a burden,
In the silence of my struggle, better days are uncertain.
What happened with the dreams of the little girl?
Her inner child still lives and wants to whirl.
She thought life was just beginning.
And all the best memories, she keeps singing.
Fight and create is all she has left.
Only this way in her mind she has a blast.
– Leda Bresnov
For more information about NMOSD visit The Sumaira Foundation
If you would like to share your brain story, please contact communications[at]efna.net