It's been 5 Months, 1 week, and 4 days since this all started. I know some have told me that I should not pay attention to how long I have been experiencing this blasted headache and the subsequent Trigeminal Neuralgia pains that now accompany it as well...to them I say, "I love that you care, but these are now fixed points in time for me." It is not like I will ever forget January 9, 2012 either for that is the day that I was diagnosed with an old man's disease that I will have to live with for my entirety of remaining days. Fixed points in time....
I have been experiencing an intense amount of pain nearly every day for the past two weeks. Were it only the ever-present headache, but it has also been the intense smoldering sensation in my right eye, eye socket, and right cheek bone as well. I have felt that for all or most of every day for the past two weeks. It seems to occur with changes in light. Even tiny ones. I can be looking over the field of my students in the classroom and notice the light-shine of a cellphone screen to the accuracy of pin-pointing which student it is exactly. Even that little bit of light differential in a lit room tweaks my pain momentarily. Light seems to be the worst of my triggers. My ophthalmic nerve must have a direct line to the agitated center of my Trigeminal Nerve ganglia.
Some of my colleagues have mentioned that I must be doing better, as they have seen me out and about in my school more during the day. To them, the ones I care to explain it to, I have said that it is not that I am better, but more so just surrealistically numb due to the intense levels of pain I have been experiencing daily. To many who ask how I am from time to time I now say, "I am managing...today." It seems a better response to me as I am not sure that they are really concerned in as much as they are just engaging in niceties with a colleague. My students, a large number of them anyhow, now know when I am having a tough time of it or not. Their behavior and sound output, for the most part, improves on days when they can see that I am not doing well. That stated, I have been to work every day lately...pain or no...as I feel that I must push through if I want my kids to learn anything. Additionally, I feel compelled to show my employers that I am valuable. In the back of my mind I am concerned, however, that if I am there every day they will think I am better...or was not ill to begin with. The internal struggle that goes along with this disorder is almost as hard to deal with as the pain.
It is an invisible disorder unless one is showing the outward signs of less restful sleep and constant pain. Admittedly, I constantly feel that I am being judged as to whether my illness is real or not. I do not mean that to sound like it does...heightened paranoia, but I feel like there are those in my district that are waiting for me trip up. I feel more pressure to perform than I used to, and that is saying a lot as I have always been an over-achiever. Again, the internal struggle that goes along with this disorder is almost as hard to deal with as the pain. There is still a prevailing sense that I have that very few people, even the ones that are very close to me, actually understand what I am going through. It is a very lonely feeling.
Lastly for this posting, I had to make my first major decision involving living with the disorder this week. I dropped the graduate courses that I was taking to become a school administrator. I have found that teaching 5 days a week, putting on a brave face for others, and appearing to be social takes so much of my resources now that I do not have energy enough to study for an extra twenty hours a week. I have never backed down from anything in this capacity. I wrestled with the decision to do so for the past month before speaking to my grad school adviser about it day before yesterday. She said that she had no doubt that I could make a good administrator, but it was likely best for now to focus on the me of the present and try to find ways to de-stress and hopefully get well. I have referred to it as "Putting my ambition on a shelf," for now. I still have no idea where this thing will go. I go back to my neurologist next week to hopefully get more answers.