The show must go on!

 If anything bothers me the most, it's when I am at a loss for words in describing what it is that is going wrong in my body at any particular time.

I know right? Me at a loss for words.

That is like saying that the Titanic was nothing more than a fishing boat! If you believe that, then don't ever invite me to go fishing with you!

There are so many issues happening inside my body at any given moment, that I don't know what it is I should bring up if any. I am anxious to have you share in whatever small victories I may have. But hesitant to disclose something that may be just the tip of an iceberg, of what may become a much larger issue.

Do I really need to tell you about some random pain in my right ankle? Perhaps it will disappear in the manner in which it appeared. Or if I disclose it to you now, maybe I will avoid much greater pain and suffering down the road.

Is it a sign of my age? Something I would go through even were I not to have been diagnosed with Locked-in Syndrome (LIS)? Or something which I should definitely bring to somebody's attention.
These are the decisions I wrestle with all my waking hours. The decisions I will likely carry to my grave with me.

I have also had a " widowmaker " heart attack, with two stents placed. So, any pain that comes to me in that region of my chest always has me worried.

As you can see, I have a lot going on. But my blood pressure usually stays about the same, a steady 114 over 74. Very good reading and normal for me. And my heart rate usually runs about 75. All good numbers even if you didn't have LIS and a heart condition to boot. But who at my age hasn't developed at least one medical issue they need to contend with?

And so, my life goes on, each day much like the last. Very much like yours, except for the minor detail of my having LIS. And once you have accepted the limitations of my condition, you develop a routine like everyone tends to do with their lives. I just have a different set of rules.

Yes, I have days where it just all seems so overwhelming, and I cry and wonder why me. Then I put on my big boy pants and think, would I rather this had happened to my wife or daughter, or one of my sons? The answer is of course no. I will either overcome this or eventually learn to master it.

My children and grandchildren will learn a "never give up "attitude from all of this. Not a "poor pitiful me "one that I detest.

So, I have constant pain in my lower back, that I've grown so used to that most days I forget it is there. Most likely from the constant contact, I have with my mattress and not from the LIS. I've yet to find a pain medication that is effective on pain for me. Perhaps that is because of how they work, and my Lis impedes their functioning as they should. I get headaches I can't shake. But I recall I would get similar headaches in my pre-stroke days, I can't attribute them to my LIS. My bowel movements are irregular, but that's more a factor of all the medications I now take and this liquid diet I've been on for better than seven months. All and all, except for the paralysis and inability to talk, those are the only things I can directly attribute to my LIS.

So, those are the two things I focus most of my attention on. The way I see it is, if I can beat them, the rest of my problems will fix themselves, except for my heart issues, I imagine I'm stuck with them.
Today my nurse Mary will be here. She will ask how I am doing, and I will report that I am no better and no worse than I was three days ago when she last was here.

That is how most of my visits go with her. Occasionally, bringing up some issue or the other. I have had the occasional problem that has caused me to have to be put on an anti-biotic. But overall, I have remained relatively the same. I look at that as a good sign.

And here I lay in wait for her visit. Like a movie I have already seen, I already know just how it will go. Yet I am giddy with the anticipation. It will break up the monotony of my day. Bringing me short-term relief.
I just heard the driveway alarm; it lets us know when someone is here. And even though I can see in my mind how this whole thing plays out; I can't wait for the movie to begin!