We are in the thoroughs of trigeminal neuralgia yet again. Every fall it comes slowly and it seems to come much earlier. This year it played tricks. I am not sure if it was a longer and warmer fall or just a false sense of security that lulled us into thinking that the less stress job helped lessen the severity of the TN symptoms. But nope. From one day to the next things changed drastically. Meds changed drastically and pain changed drastically.
The good news is the pain hit my girls and I a little less hard other than previous years because it is becoming the norm. The bad news is the severity of the pain is higher and that has triggered higher anxiety for my guy and I. An increase in pain is never good because it means an increase in his horrible meds that don’t “fix” the pain. They attempt to make the pain manageable and they come with a a whole new set of issues. All of this last part not something we have shared with the girls.
But they will see it. I certainly have. His face has a TN face. I am sure I have talked about it here before, but there are literally hundreds of TN galleries of pictures of TN faces. TN attacks do something to the muscles in the face. Then there is reflexive response. We know that response and it is the one that makes me want to vomit on the spot. I see the fear it puts into my girls eyes.
It is truly one of those moments that you can say “been there done that” and my goodness I pray we never have to go back there. I know no promises are ever made in TN but I wonder why him? My family is so strong and so close because of TN, but the effects of this disease on my family run so far and so deep and so incredibly personal that I cannot, nor would I, attempt to dive into it all on my blog.
But in our private and quiet moments my guy promises me the pain is increasing but it is no where near where we were two years ago. For that honestly I am very grateful because that time and the way I felt…I just don’t feel like I can ever ever go back there. Of course I have no choice because I love this man more than myself and I will do whatever needs to be done for my family.
So we move forward doing the best we can do. We operate with life as normally as possible. I still get irritated with him for leaving the toilet seat up and for leaving his dirty socks all around the house. This life is our normal and we no longer sit with a veil of grief over our eyes like we once were. We had two choices….dwell forever in the “this sucks” phase which feels an awful like it is letting TN win or live the best life you got. We choose number two.
He goes to his doctor in January which was an appointment we just changed because this fall had been going so well. He has to update his surgeon as well because they want it noted every time his pain changes especially with increases in pain. He is kinda of waiting to make that call to see how the med increase changes his pain or if it does. That is always their first question.
If there is anything I have learned in watching my guy suffer from this disease it is to never judge something simply based on what you see. You have no idea of the battle people are fighting daily. If you walked passed him you would never know what he lives with daily. If you saw our family out and about you would have no clue. We don’t walk around all sad and downtrodden. Yes this sucks. Yes it is hard. But my girls are still young and figuring out life which is confusing enough without TN. I still adore doing theatre with my students. My guy and I still laugh and go on dates. My guy and my youngest still rough house like he did with our other two daughters. He still helps #1 with her geometry and #2 pack her lunch.
Life doesn’t stop. That is a conscious choice we make and many others make every single day. Please don’t ever assume you know the life someone lives because of what you see on the outside. That has been a message riddled in my ear all fall. In my experience people often don’t wear their battle scars proudly. I live very openly with my life because I have a public career, this public space and that is just me. But others may not.