Hali's Journey with NMOSD Part 2: Feeling Afraid, Losing Hope

Editor's note: This article is part of a multi-part series. To read part one, please follow this link.

Mentally, I was exhausted. I was only 19, I loved my life and I loved my job. I had so many plans for my future but my life had fallen apart so rapidly.

It was so hard to stay positive

No one speaks about how hard it is to stay positive when you’re going through so much. I had people around me, telling me to have hope, and that everything was going to be alright. How could I believe that? Everything was going downhill, right in front of me. I remember constantly thinking, "why me?" Why couldn’t I live a normal life just like my friends?

The pain was intolerable

It got to the point where these "attacks" started to damage the muscles in my arms and legs. The attacks got so frequent, intense, and lasted even longer. The pain of standing on my legs was intolerable. Any piece of clothing that touched me would trigger an attack, even the wind coming from the fan. My body became so sensitive. It was the morning of the 2nd of September. My dad came into my room and we were speaking about how hard it was for me to function like a normal person. I couldn’t even go to the toilet without getting an "attack." My trips to the toilet were so frequent due to the weakness of my bladder. My feet were so swollen that it hurt to put socks on. My cousin had sent me a link on a disease called Guillain-Barre Syndrome which occurs after getting a vaccine. I'd had my second COVID vaccine two weeks prior to my first symptom.

We went back to the A&E

My parents and I thought it best to phone 111, the NHS helpline, and get some advice on what to do. The man I spoke to suggested I visit A&E (emergency room) as soon as possible. My mother and I then got ready and took an Uber to the A&E that I'd already had been dismissed from multiple times, hoping there'd be a different outcome this time around.

I waited alone without my mum

I waited for hours alone, sitting in a wheelchair, in the waiting area. They didn’t let my mum into the waiting room due to COVID-19 protocols. I sat as still as possible, fearing I’d trigger an attack if I moved and would suffer without my mum being there to help me. Once I was finally seen by the nurse, I read out the symptoms of Guillain-Barre Syndrome and told her I have similar symptoms. I was then taken for blood tests and was given a bed. This is when they finally let my mother in.

Finally someone took me seriously

A doctor came into the room and saw how serious my condition was; I couldn’t even walk. She referred me to a neurologist and said I’d have to wait for a few more hours to be seen. I didn’t care about the wait; I was just glad someone finally took me seriously. I had lost hope weeks ago and I felt a little spark in my heart, that there was a chance I’d be better again.

Maybe I was on the precipice of getting answers

A few hours later, the neurologist did a few check-ups on me and thought it would be best if I was kept in hospital for different tests and MRI scans. I was so attached to my mother at that point that I was scared to stay alone and sleep without her by my side to help me if I had an attack. But I had to go through this alone, to finally get some answers, answers I had longed for for weeks.

Have your experiences in emergency rooms been similar to Hali's? Tell us in the comments