I’ve been away from my blog for a while, not because I want to but because of health reasons. I’ve written about having Trigeminal Neuralgia and will link the posts if you are not familiar with the disease. I had a very dark January and I blogged briefly about it. When TN rears its ugly head, pain is almost constant twenty-four hours a day. If you are lucky, you can find a position where the nerve is not being agitated and if you sit really still, you can be pain-free for a little while. I was pain-free from the middle of February to about three weeks ago. The TN begin as a little shock if I washed my face in a certain way and has gradually gotten worse.

Each time I have had a bout with TN, the area affected changes a little. For the first year, each episode triggered the middle and upper portion of the right side of my face. Last May/June/July/August it triggered the upper part of my face into my hairline. When TN is active, I cannot touch the affected areas. In January, I was unable to wash my the right side of my face, brush my teeth, talk, eat, or swallow, and washing my hair was painful. The pain wears on you and you have to fight mental and physical exhaustion. When the TN flared up this time, I decided to write what a day in my life looks like. While Trigeminal Neuralgia is rare, there are still a lot of people affected by it and this diary of sorts is for them as well. I wanted to tell my story so they do not feel alone. There is someone who understands your pain.

TN is something you can describe to someone, but their eyes will gloss over. You look perfectly healthy so they do not understand the pain. The isolation is the hardest and talking about it helps, especially with other sufferers. The rest of the post is about a recent day in my life. If you have questions about TN, please feel free to comment and I will answer.

The pain awakens me from a dead sleep. I am a side sleeper who loves to bury her face in the pillow. On a good day, I wake up refreshed. Today, I woke up to a pulsing pain from my eye into my hairline. I sat there crying and praying would stop. When the pain is sporadic, there is a moment of rest in-between the shocks, but with the pulsing pain, it is constant. I was lucky this morning, after a few minutes the pulsing sensation stopped and went back to sporadic pain shocks. My face wants to yawn but I stifle it to avoid pain. This makes my eyes water and I slowly touch my finger to the corner of my eye, feeling my way thru the pain to wipe the tear.

Before I even rise from the bed, I make the mistake of looking to my side to grab my glasses from the bedside table. I am met with stabbing pain in my face. You would think I might remember from day to day to turn my body and not just my head. Pain should not be a normal part of life and I guess the body forgets.

Each movement during the day is calculated. I have to remember to back up if I want to see something high as moving my head from side to side or up and down will result in excruciating pain and possibly trigger the pulsating pain.

I locate my slippers and by feel, slide my feet into them and rise from the bed. I turn to pull the sheets up while silently reminding myself to focus straight ahead. I can almost understand what it might feel to be blind. I feel my way through my tasks. I stand back and make a mental note where things are located and then step forward hoping my hands remember.

I make my way to the bathroom to wash my face. I use a gentle motion on the lower portion of my face. The pain lets me know my limits. It’s been over a week since I washed my forehead. I carefully gather cold water in the cloth to rinse the soap from my face. If I am lucky I can hold the cold cloth to my eyes and forehead for a temporary soothing of the nerve. Temporary means seconds. As I lift the cloth from my face, I strike the nerve with the simple movement causing pain.

I grab my toothbrush and brush my teeth. I thank God for this blessing as each time before I was unable to brush the teeth on the right side of my mouth. I close my eyes to visualize the process and to maintain complete control. I move my hand rather than turn my head as I move the toothbrush around my mouth. Normally, we tend to move our head while the toothbrush remains stationary. My head must remain stationary while the brush moves.

The last few days the steps I take feel like a sledgehammer is pounding my face so I tread lightly to minimize the sensation. I make my way to the kitchen to take my morning meds, again, remembering to turn my body and not just my head as I perform the tasks of grabbing my meds and glass of milk.

I make breakfast and sit down to eat. I forget momentarily to be conscience of my chewing and tug on the nerve. I eat the remainder of my breakfast with calculated moves and then just sit back. I haven’t been up for more than an hour and already I am exhausted.

Next up is my shower. My husband installed a rain shower head so I have low water pressure hitting my head. I carefully wash my hair and rinse it making sure that I do not tilt my head back too far. Two things will happen; one, the water pressure will cause pain and two, tilting my head back irritates the nerve. After my shower, I gently wrap my head in a towel taking great care not to irritate the nerve more than necessary. There will be pain; I am trying to minimalize the pain. Once the towel is situated, I can continue drying off and dressing. Removing the towel from my head presents its own set of problems and I have learned how to minimize the pain while removing it.

This morning I made the mistake of sneezing – as if that could be a mistake! It triggered the convulsing of the nerve which caused excruciating pain. I want to be honest about my day so I will say that there was some screaming involved as well as praying. God is good and I was able to eventually push through the pain and press on the nerve which helped to stem the convulsing this time. It doesn’t work all the time, but there have been many occasions where I have been able to temporarily stop the pain. But, in order to do this, I have to cause pain to stop the pain so maybe that will help you understand the dilemma and you need the presence of mind to do this and that is difficult to have when the pain is present.

I am finally able to complete the task of dressing and drying my hair. I am so tired. Tired of the pain. I wish I could lay down and go to sleep and sleep until the episode is over.

This is what my mornings have been like for the past week. I will end here and pick up with my afternoon at a later time. Living it is hard. Writing about it and reliving it is almost as hard.