After a rough day, I created this description of my pain spectrum. I shared it with my supervisor, who said that she appreciated knowing what I was going through. Sharing it here helps me feel less isolated. Thanks, Andy
Pain Free - Life is great. It’s wonderful being a 58 year old man living the dream.
Reminder - Dragon love taps. Small trigger/response combos; localized and of virtually no duration.
Alert - Stop doing that. Abrupt, sharp pain caused by specific activity of muscles served by the TGN (e.g., touching my cheek). Short duration, immediate involuntary response noticeable by other people.
Short Interrupt - Full stop. Pain duration increased to a point where I must stop doing what I was doing and wait for it to subside. Multiple activities at once exacerbate the problem (e.g., talking and eating). I can partake in activities, though stilted at times. When the pain triggers are around the mouth, this pain level makes it difficult to continue work and partake in social activities (e.g., writing, sharing a meal, conducting a conference call, finishing a spoken sentence).
Long Interrupt - These are the periods of time when I am deciding whether or not I need to leave to find a better environment for coping with this lengthy painful intrusion. My full attention is aimed at attenuating the pain.
Purgatory - Sudden onset of full pain response to TGN activity or environmental conditions. May last from 5 to 30 seconds, sometimes more. This is the pain that causes me to reel away from my left side, sometimes spinning around in a circle. I find it humorous, yet extremely painful. I can anticipate the ending of the pain which makes this level endurable.
Hell - My eyes start to water and I might even let out a yelp at the onset. It is unclear for how long each episode will last and how long the respite between episodes will be. It is an demanding intellectual exercise to convince myself that this is not my full life. At this stage, I begin to understand why this thing used to have different name.