November 2016: The beginning of my journey
Much of November was trying to stay awake longer each day and absorbing the magnitude of my situation. I couldn’t do much - no movement in my limbs with little moving of the neck. To top it off, I had no voice to communicate.
I was learning how to communicate with my mom, the nursing staff and any visitors. The speech therapy team try to assist with an electronic device as well as a paper system of pictures and the alphabet. The device was connected with my eyes and the computer cursor. What an ordeal that was! The computer had to be placed in front of me to work and then the cursor was ultra sensitive with eye movements. Very frustrating! In addition, it was taxing on my neck doing the head movements to move the cursor. As I wanted a way to communicate, I continued to try using the device despite the neck pain. But in the end, I couldn’t do it. It was too frustrating, tiring and painful, plus bulky as the staff had to set up the computer each time I wanted to talk. The communication method we chose was “back to basics” - facial expressions, slight nods to indicate yes/no, using the alphabet squares and lip reading.
From friends Sara, Amanda and Amy Googling about GBS and the doctors telling me about GBS, I knew I had a long haul ahead. Hearing that this was one of the worst case of GBS probably didn’t help matters. This was when I started connecting the dots about what could have lead to me getting GBS. The chicken in my pita was probably undercooked (campylobacter) followed by having the stomach flu and was in my 40s; this probably led to having a case of severe GBS.
There was one word that would be in forefront of my vocabulary - Patience. I need to have patience as my body heals. I need to be patient because I won’t see results right away as nerves only regenerate 1mm per day. Not knowing how much my nerves were damaged they could not tell me how long it would be to see results. If the damage was only to the myelin sheath it might not be too long to see results. If the damage was to myelin sheath and the nerve I would need to patient as the results will be slow. Sadly, I fall in the latter category.
I was learning how to communicate with my mom, the nursing staff and any visitors. The speech therapy team try to assist with an electronic device as well as a paper system of pictures and the alphabet. The device was connected with my eyes and the computer cursor. What an ordeal that was! The computer had to be placed in front of me to work and then the cursor was ultra sensitive with eye movements. Very frustrating! In addition, it was taxing on my neck doing the head movements to move the cursor. As I wanted a way to communicate, I continued to try using the device despite the neck pain. But in the end, I couldn’t do it. It was too frustrating, tiring and painful, plus bulky as the staff had to set up the computer each time I wanted to talk. The communication method we chose was “back to basics” - facial expressions, slight nods to indicate yes/no, using the alphabet squares and lip reading.
From friends Sara, Amanda and Amy Googling about GBS and the doctors telling me about GBS, I knew I had a long haul ahead. Hearing that this was one of the worst case of GBS probably didn’t help matters. This was when I started connecting the dots about what could have lead to me getting GBS. The chicken in my pita was probably undercooked (campylobacter) followed by having the stomach flu and was in my 40s; this probably led to having a case of severe GBS.
There was one word that would be in forefront of my vocabulary - Patience. I need to have patience as my body heals. I need to be patient because I won’t see results right away as nerves only regenerate 1mm per day. Not knowing how much my nerves were damaged they could not tell me how long it would be to see results. If the damage was only to the myelin sheath it might not be too long to see results. If the damage was to myelin sheath and the nerve I would need to patient as the results will be slow. Sadly, I fall in the latter category.
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