My Pain Has a Personality and Put Me in the Slow Lane

One day I was motoring along without a care in the world, and BAM I got sick. Meningitis. Long story short - it prompted a multitude of problems with my brain eventually leading to 3 brain surgeries. Fun stuff.

My pain has a personality and it is a you-know-what! It adapts to situations and will NOT be ignored. It gets so bad that it does things like shut down my vision. It wants me to be aware that it is there and setting up camp in my brain again, so it does things like create hemapalegic issues to frighten me. My pain in unpredictable and unrelenting.

Many phrases have been thrown around like acquired brain injury (from meningitis and surgeries), post traumatic headache, seizure, and that wonderful phrase - acquired migraine. If that weren't enough, trigeminal neuralgia decided to join the party.

I have some form of head pain at all times. People cannot grasp that…ALL. THE. TIME. On a good day I have a pain level around a 4, and it may increase throughout the day. If I am lucky it lingers there all day. Some days I reach a 7,8, or worse and work extremely hard to hold it together. I wake up with pain – I function daily with it – and I go to sleep with it. A large majority of the time I am awakened by it as well. Insomnia is one of the worst issues I face right now – insomnia as a result of monumental pain no less. The nighttime always seems to be the worst. I often go days and even weeks with no relief.

One of the recent theories is that my brain acts similarly to phantom limb syndrome (and I do see the humor in that statement). Over the many years of illness and surgery my brain has adapted to the pain process. It does not know how to be normal (again…it know, it’s funny). It’s as if my brain needs to make a new connection. A reset button needs to be hit, and my brain needs to CTRL, ALT, DELETE itself.

Unfortunately, not a single medicine has worked leading me to often feel defeated. Some meds have even called horrid issues like Stevens-Johnson Syndrome, and open up an entirely new set of problems. I do both alternative and complementary approaches as well. As a person who is well-organized and a planner, life that is chaotic and out of control has been a tremendous challenge. Hearing "this may very well be your way of life now" sent me into a tailspin!

My attitude has always been extremely positive and accepting. I just push through because that is what I am wired to do. I live life in the slow lane now. I try to journal about it all as a way to get things out there and not burden those around me. I have an incredible support system, but sometime they need a break from all of this. My blog has kept me somewhat sane. I am just trying to make sense of it all, and it's difficult to do without people who truly get it! When I stumbled across an article from this site it was if I found my people. Though our circumstances and diagnosis my be vastly different, I felt like a mirror was being placed in front of me with the experiences of others. I have been exhausted by trying to constantly explain so much in order to be minimally understood. I do have a wonderful team of doctors who have been amazing and tremendously supportive. Perhaps now I have found others out there who can lend to that support!