Today I was in a lot of pain, therefore I needed pain medication for the nerve pain that’s associated with Guillain Barre Syndrome. Pain was shooting all across my body. I just can’t get comfortable. I have Physiotherapy everyday along with occupational therapy which is contributing to my discomfort and pain. Nerve pain is something else I tell you.
No bronchoscopy needed again today. My parents could hear a whisper coming from my mouth as I was trying so hard to talk. I know I shouldn’t be trying since I can damage my vocal cords. It’s just so frustrating not being able to communicate people and so frustrating when they don’t understand. Paralyzed and unable to speak.
Dr. Marrero, my Neurologist came in today. He’s always a pleasant guy to see. Such a knowledgeable man with a Guillain Barre Syndrome. With everything I’m going through it’s hard not to smile when he’s around. Always happy, smiling, positive and always encouraging and optimistic. You can’t help but believe one day things will get better.
Today I also learned my job at Royal Bank of Canada is secure but I will have to go through training again as a refresher as it was a new job. That’s one bit of good news that if I do get better from Guillain Barre I have a job to go back to.
I was breathing by myself with back up but I needed help at suppertime. My parents keep telling me I should not try to talk too much since it could harm my vocal cords. I can’t anyway, small faint whisper. I just can’t stand the letter board to communicate, and lip reading people have a hard time. It’s so frustrating when no one understands you!
Louise, the spiritual care worker, visits quite often and checks up on myself and my family. I always joke saying that when I finally get to eat for the first time since becoming ill with Guillain Barre Syndrome I will put on 10lbs. in one day lol. It sucks not being able to eat or drink. So craving a nice cold glass of water…. I was also inquiring with dietician to see what types of natural food I should eat to get better faster and help towards my recovery with GBS. Most importantly if there is something I can do to help me get better faster I’m going to do it.
My parents asked me if my grandmother could come visit me in the hospital now and I said yes. I didn’t really want anyone seeing me like this. I also had a lot of phlegm again tonight. The breathing tube fell while being moved and it felt like I was chocking. I’m just hoping that tomorrow my nerve pain from Guillain Barre Syndrome won’t be as bad. My body feels like it’s on fire and it’s a pain like nothing else.