When my friends and family first approached me about creating this website, I agreed to do it with one stipulation, that I wasn’t responsible for its content, or writing. I am an awful writer. So, after a few years of it up and running, look who’s responsible for the content and writing. Like they say, “Father always knows best”, or has foresight for that matter.
So we survived a long, cold winter and spring. and it wasn’t easy. People are always asking me how I am doing? I always respond with “great”, because I consider it rude to talk, or complain about one’s health. In all honesty, it hasn’t been so “great”. It has been really bad. I have decided to lay it all out there, because so many of you want to know why I am not always up for a visit, or visitors for extra lengths of time. Here is why.
I can barely eat. My tongue is too weak to move food. The same goes for my throat. Choking and coughing up food are constant. Meals take forever and usually end when I get bored, or whoever’s feeding me gets bored. I go to bed hungry many nights. My clothes do not fit anymore. Much of this is my fault as I chose to not have a feeding tube.
Drinking is equally problematic. I usually drink from the right side of my mouth. It then comes out of my partially paralyzed left side (kind of funny if it weren’t so sad). Yesterday, I couldn’t satisfy my thirst. Sucks.
I’m so thin that sometimes, when I look at myself I get sick to my stomach. Despite all of this, I am constantly being lectured on my non-vegan diet. 😉
I pee once a day, poop once a week. No kidding!
Pain is constant. At one point this winter, I had multiple ingrown toenails, awful carpel tunnel pain in both hands, a pinched nerve in my neck and debilitating shoulder pain, so bad, I considered amputation. All at the same time. I was on more morphine than any of my docs and pharmacists have ever seen anyone on.
I have constant weeping eyes due to a chronic eye disease.
I can barely hold my head up. My neck is becoming too weak to support it.
I haven’t slept through the night in 3 years due to pain, discomfort and now hunger. Elizabeth has definitely slept less than I have.
Excess saliva is constant. I have a suction machine and medication, but at times you’ll find me drooling on myself like an old person, or baby, your choice.
I forgot to mention… that I can no longer speak. If I don’t say “thank you”, it’s because I can’t.
You may think I am just feeling sorry for myself. Not true. I’m just trying to explain why I’m sometimes grumpy and why I might not be up for a short visit, or a two week houseguest(s). I love your children, but I don’t feel comfortable with them staring at me and I don’t want them seeing me this way. I don’t want to be remembered like this. A little girl the other day buried her face in her father’s shoulder so she wouldn’t have to look at me. I have way too much pride, it’s hard.
There is some positive news. With some changes to: the way I transfer, my diet (no dairy) and my bed, I have managed to eliminate much of the chronic pain I have been experiencing the last couple of years. I’ve cut my morphine intake in half. This has just occurred. Great news as I have been sleeping so much better the last week, or so!
Hopefully, I didn’t offend or piss anyone off with this post. That wasn’t the intent. I wanted people to have a better insight of what I have been dealing with, not to mention what my family is having to deal with. ALS is a brutal disease. It certainly hasn’t spared us thus far. Now excuse me while I go get Gabby, I have snot running down my nose and into my mouth. No lie!