Before being diagnosed with Guillain Barre Syndrome, I was the most average teenage girl out there. I was a social butterfly, I was always with my friends and family doing something fun. I would rarely been seen without my friends. Everything changed in the blink of an eye. My life was turned upside down, all because of one flu shot.
The worst of my experience battling Guillain Barre is something that I would never wish upon anyone. I was in the ICU on and off for a few weeks, that’s when I was at my worst. I was completely paralyzed from head to toe, to the point where I could not even blink. I felt like I was just trapped inside my body. I couldn’t move, talk, eat, drink, or even go to the bathroom. I couldn’t communicate at all for a while and I had never been more frustrated. Trying to say I needed something was impossible. I was saying it all in my head, but couldn’t say any of it out loud. I felt like a baby in a sixteen year old’s body. I had to be bathed, fed through a tube, and I needed assistance with the bathroom. I had zero privacy and that was something I would never get used to. I was a very independent girl before the hospital, but that was all taken away from me. I was also a very happy girl before. Spending my sixteenth birthday in a hospital and losing my grandfather to cancer at the same time, changed that. The pain was absolutely unbearable. I felt like a thousand burning hot needles were stabbing me all over my body. That was my nerve pain.
I felt the constant need to move, but physically I couldn’t move at all unless someone moved me. I endured therapy twice a day, every day. That was also one of the most painful feelings. Learning how to do simple things all over again; such as tying my shoes, writing with a pencil, or simple holding something in my hand hurt so badly. The worst pain of therapy was learning how to stand again. I was put in a “standing machine” which mechanically made me stand up since I wasn’t physically able. It would go slow, but it was the worst pain of my life. My joints just couldn’t handle it after being in a hospital bed for months.
I don’t remember much about the ICU, but I do remember I had never been so scared in my life. There were many days where I was preparing myself to not wake up again. Sometimes I was afraid to take a nap simply because I didn’t think I’d wake up. I was very scared of dying and sometimes felt like I was coming close to it. There were many nights where I wanted to tell my parents that it was okay to say goodbye to me.
One night in particular, I thought I was about to die. I was visiting with my sister, who didn’t come very often because it scared her, and I started to feel really tired so I stopped talking. A few seconds after I stopped talking, I realized I stopped breathing. I tried catching my breath but it was impossible and I could not breathe at all. All of a sudden doctors and nurses piled in my room and sat me up, forcing tubes down my throat to make me breathe. I remember all I wanted was my mom to hold me and tell me I was going to be okay. That’s when I heard a doctor say that my lung collapsed. It caused me to not be able to breathe. I don’t remember what happened after that but I woke up in the ICU, with my mom sitting by my bedside, visibly upset. Just when I thought things were getting better; I stopped breathing. Nothing scared me more than that night, I truly thought I was going to lose my battle that night. To think this all started out with my feet falling asleep, then complete paralysis a few weeks later.
To this day, GBS is still affecting me. I sometimes describe myself as an 80 year old woman trapped in a 20 year old woman’s body. I continue to have nerve pain daily, as well as joint pain. I can only do so much physical activity before I need to sit or lay down.
Here I am participating in the radiothon for the amazing hospital I stayed at.
I also get sick very easily and when I do, it completely wipes me out. I usually lose control of my legs when I get sick which makes me have to use my walker or wheelchair to get around. Although I lost a majority of my high school years to Guillain Barre, I have a whole new outlook on life.
here I am 4 years after a long, hard battle!
I am so thankful that I have the life I do and I don’t take a single day for granted.