Patient Stories

“Will power and strong determination in our mind and heart can achieve every success that seems impossible” – Saishna Budhathoki

Today, we share a story from Nepal. Meet 18-year-old, Saishna Budhathoki, a young woman who shares why she believes, “smiling really heals the greatest edge of pain.”

I began my battle with Guillain-Barre Syndrome when I was 6 years old. The first trigger was mild and with the help of physiotherapy, I almost progressed to 99% recovery and almost made my way back to my normal life. However, ten years later I started feeling extreme fatigue and exhaustion.

On Feb 2, 2017, now sixteen years old, I felt bilateral tingling on my feet and palm which slowly increased to my shoulder. That same night I started feeling ascending bilateral weakness and numbness in muscles of the leg and hand. I was rapidly losing my ability to do anything on my own.  I could not walk nor stand. Everything was becoming out of control so I was rushed to the hospital where a doctor diagnosed GBS after conducting nerve conduction and a lumbar puncture.

Within 6 hours of onset of weakness, I lost all my reflexes and was totally paralyzed below the neck. Seeing my progressive weakness, doctors knew my condition was going to get worse. so they immediately shifted me to ICU where I was given intravenous immunoglobulin. Within 24 hours of onset of weakness, I developed progressive shortness of breath. The machine monitoring my body started alarming; I heard the medical staff calling for help. I was unable to breathe and taking long deep breaths as much as I could. Slowly I blacked out and eventually turned unconscious. Later, when I was awake, I was put on a respiratory ventilator. 

Most of the time it was frustrating. I was unable to communicate my needs and problems properly and somehow even if I was able to do so, it was very difficult for the staff to actually comprehend. I felt lost. It’s a loss of control. I had no control over myself any longer; and in a torturous situation. I was scared I may not see the sun tomorrow; the darkness was all around me. I thought about my parents, my loved ones, my life before all of this, and I felt helpless. I spent hours just staring and gazing at the ceiling. I had a hard time even communicating with doctors and nurses.

Day by day my condition was getting worse. It seemed the first does of IVIG didn’t work. I needed to have a tracheostomy. After an entire month passed, I had no progress, zero improvements. The doctor then suggested to give me a second round of IVIG again which showed some results and I started recovering. 

I built a strong mindset to win my worst situation. I kept smiling even during my toughest time. Smiling truly heals the greatest edge of pain.  Eventually, I won the toughest fight of my life and was extubated from a ventilator. I again started breathing on my own lungs.

My road to recovery started from ICU to MICU to the neuro ward. After 5 months I did not need the tracheostomy and could breathe through my nose. I was then sent to a rehabilitation center where I was getting regular physiotherapy. Slowly I started to move my hands, eat and walk. During the summer I joined hydrotherapy, and its outcome was surprising and beneficial.

It’s nearly 3 years since my second trigger of GBS and I’m still dealing with a lot of complications and going to deal with it until it fades away. Three years ago, having a relapse of GBS is the worst thing that occurred in my life. But I learned a great lesson from my struggle and battle that nothing is impossible if you believe and have faith! I learned to be happy despite the pain. I got to know myself; my capabilities of tolerance. I learned how strong I can be.  Before I used to panic a lot about small problems but now I don’t sweat the small stuff! I now have confidence to get through every hard situation. I learned to smile and smiling was my greatest weapon to battle with my pain, my suffering and to be bold in the face of any hard circumstance! Smiling helped me to heal mentally and physically and taught me how to have patience.

I am taking my journey from being locked inside my body to being able to breathe on my own and regaining my strength to stand, one day at a time. I am recovering every day and I promise myself that I will be stronger and overcome all my complications one day and recover completely💪💪!!  It feels good and also gives me a shock when I look back. GBS dragged me down in the middle of nowhere and I’m dragging myself back up and on the road to recovery. It was not so easy for me to battle with GBS. Every difficult circumstance that kept knocking tried to break me down.  It has taken my hope, belief, faith, determination and the brightest possible will power inside me to overcome the situation. I don’t know how I have become such a strong person, but I am stronger than I ever imagined to be.

I would like to offer some advice to my fellow GBS survivors or newly diagnosed, to be strong, have faith and believe in yourself that you are going to overcome it no matter how difficult it is. Never ever ever ever give up and keep smiling on the very worst day of your pain. I bet it will help to heal! Believe me, you are going to battle it, but please never let go of your hope, have patience.

“Whenever we fight hard situations with grace, a big smile, faith and hope, I believe then we can surmount it.”#nevergiveup

-Saishna Budhathoki