Here I am again talking about my experience with Guillain Barre Syndrome. If you haven’t read my entries about this before, you may want to start with my post from 10/10/15 called Heartbeats.
At this point I was still on the respirator, but the paralysis had receded to my shoulders. There was a tube in my throat, but I could move my lips. Everyone was trying to read my lips instead of using the spelling board.
Several times Jodi would arrive after work, and I would ask for a tissue. What she thought I was asking “did you?” not “tissue”. She would get frustrated and exclaim, “did I do what?”, and I would get frustrated and just repeat “tissue” trying to make sure I formed my lips the right way. Jodi thought I had lost my mind. We’d go back and forth this way several times before I gave up without a tissue.
When I think about this situation, I’m reminded how important little things can be. It may sound like a cliche, but it is true. Take a few moments and think about the simple but important things you do each day, then take a few more moments and think about the things others do for you that have an impact on your day. Most things don't seem news worthy or earn accolades, but they make a difference.
There’s also the things we do often that might seem trivial since it may seem like we do it without thinking. Every time I end a conversation or say good bye to my daughters and some others, I tell them that I love them. Some people might think this is meaningless since I do it all the time. The truth is that the people I say it to know that I mean it, and they appreciate being reminded that they are loved. I’m reminded about the closeness of our relationships. We all need to be reminded of the closeness of our relationships.
Let’s go back to the idea of me losing my mind. This time it has to do with me eating. Another simple thing that has a big impact on life. You would think I couldn’t wait to eat some real food after being fed liquid supplemental nutrition through an NG tube. Not so. I had no interest in eating. My family was told to bring in things that I really liked to eat before the Guillain Barre Syndrome. Milk shakes, ice cream sundays, and Frosty’s were at the top of the list; imagine that. I wouldn’t touch them. The doctor wrote an order for wine since alcohol stimulates the appetite. Many people would think that was a great prescription, but not me. I wouldn’t even take a sip. They brought in a psychiatrist. She decided that I was probably depressed and maybe even suicidal. Was I trying to starve myself to death?
The answer came shortly after I was transferred to a regular hospital room. That evening my NG tube became clogged and I couldn’t be fed. The replacement of the tube would need to wait until the morning, but the nurse could pull the clogged one. The next morning I woke up and asked for some oatmeal. Imagine that: a tube down your throat might make you think twice about swallowing anything else. Crazy!
Please stay on topic.