This past week has like a roller coaster. Some days were “good” and others, not so much. When I think back over my journey the last three and a half years, one thing has been clear. Trigeminal Neuralgia will not be told what to do or how to act. For the first year, the pain was almost the same each time, differing only in intensity. Since then, I never know what is going to happen. In the last 3-4 months the pain has changed. Once the silver filling in my mouth was changed to resin, what I would call a “large” pain has ceased. In its place is a pain no less intense, but if I had to describe it, I would call it a “small” pain only because the previous pain felt like a huge nerve and this one feels like a smaller nerve. It’s hard to explain.

Picture two nerves side by side, one thick and enlarged, and the other more like a rubber band. You would assume the larger would cause a larger pain and the other, a smaller pain. This past week, this screaming pissed off (sorry) nerve is affecting my right eye and eyelid. I have literally been walking around with my eyes closed to avoid pain. It’s a good thing our cottage is small and I have clear paths! The pain comes from blinking. It seems when the nerve is perhaps squinched by opening the eyelid, it screams. Even after I close my eyes, it takes a while for the pain to subside. I can usually shorten the time it takes by stretching my eyelid down – I know, explain that.

The same way you would raise your hands above your head and stretch, I mentally (and physically) stretch my eyelid closed. I don’t touch it. That would be painful, but I am able to close it and stretch it so there are no creases in my eyelid. Hopefully, this makes sense. When I do this, I can normally open my eye without pain after a few moments. It comes and goes several (sometimes many) times a day. I have to be careful when I shift my eyes up more than down. It is all in how I move the eyelid. It’s better than the throbbing pain I was having in my forehead. I think. I really don’t know. It’s different and I spent more days than not crying my way through the day.

I also have to be careful while walking. My husband says I walk like a bull in a china store (gee thanks) meaning simply my feet hit the floor hard – usually because I walk fast. I now have to walk slower and make my steps softer and that hasn’t been easy. I am one of those people who slow is still faster than others. It’s been a challenge but when the sharp pain hits, you remember to walk like a ballerina – softly.

That is how my week has been. I’m climbing the walls because we’ve been cooped up for so long. I guess I should say I’ve been couped up. Hubby has still been working since most of the time, he is able to work alone. We have a few rent houses and he’s able to mow grass and do maintenance without contact. That means time out and about for him. The only place I have been is to church and I did go to the Ochsner Pharmacy (because it is little and very few people go there) and then grocery pick up at Walmart. I feel like the kid in the bubble. Everything is done with a shield between us.

To help ease the anxiety, I decided to start planning a trip. I have longed to go to Glacier National Park and I told him, “You know how they say wheels up for an aircraft? I’m changing that to stabilizers up and wheels rolling.” I am packing up the Airstream. Who am I kidding? It’s been packed! I even made the bed the other day! I am so ready to hit the road, pain, or not. I can hurt looking at the gorgeous mountains as easily as the bayou. The distraction of planning is good for me.

Thanks for stopping by this week. Thank you also for following my journey. I am documenting because there are other people who suffer from trigeminal pain and I want them to know they are not alone in their journey. If you know of someone who suffers from TN, please point them in my direction. I would love to at least be here for moral support. Sometimes, you just need someone who understands.

https://mylifeonestoryatatime.com/2019/03/30/what-is-trigeminal-neuralgia/