San Diego is experiencing a heat wave in February. The blue sky is bright, the birds are singing and people are breaking out the sunscreen to go with their sunny dispositions. Not me. I continue my third week of my “brutal bout of bronchitis” that has me under the afghan on the couch while the rest of the world basks in the summery weather treat.
So far, my illness has incorporated three urgent care visits, doctor follow ups, and one scary ER visit to see if blood clots had developed in my lungs. Thankfully, they had not – but the CAT scan showed a build up of fluid by my heart (pericardial effusion) that has probably been caused by the infection that is making me so morose. As I wait for the echocardiogram to check the status of my heart, I sit quietly…something I am not used to doing. The tests say I am getting plenty of oxygen and yet my breath feels labored and burning. The tests say I should not feel dizzy and yet I am so lightheaded I feel I could pass out at any moment from my sitting position. The tests say my lungs are fine, but the sharp shoulder blade pain continues making it hard to lay down and sending me to the recliner for fitful sleep the last week. The one thing the tests cannot assess is my mood-gray with overtones of bleakness.
For the worst part is that this illness has awakened the sleeping giant called trigeminal neuralgia. That’s a fancy term for nerve pain. Pain that takes your breath away-not in a good way. Pain that (for me) attacks the right side of my face and head without warning. I could be eating, talking, brushing my teeth, sitting quietly when a breeze flutters across my cheek, sleeping with my right cheek brushing the pillow…and then PAIN. It strikes like cobra with sometimes jolting, sometimes shooting, lately exploding pain that strikes the right side of my face and head like a million small torturous tendrils that attack and retreat within a second, leaving me gasping and open mouthed in pain and terror that it will go off again before I’ve had a chance to recover. I’ve dealt with this for years. Originally, the pain probably saved my life. It was the pain that sent me from dentist to doctor to neurologist who scheduled an MRI to diagnose trigeminal neuralgia- a nerve pain that can have unknown origin but is diagnosed in the absence of other neurological issues. In my case, the MRI showed a large benign brain tumor that had its own complications. At first the neurosurgeon thought the tumor was causing the trigeminal pain (along with the balance issues that plague me), but now they think I have two separate neurological issues which they assure me is very rare (is it rare if it affects ME?). Anyway, who knows why it’s there…it is there and must be dealt with (kind of like of life?).
I have tried drugs (anti-seizure drugs that are the only thing that work for nerve pain-even morphine doesn’t touch this type of pain), and then two surgeries where the neurosurgeon tried first glycerine in the nerve (didn’t work) and then a balloon compression into the nerve. The balloon compression “worked” but left me with such deadness in the right side of my face that I chewed up the inside of my cheek, developed corneal erosion in my right eye and went through about 2 years of feeling like I had just left the dentist office after an overdose of novocaine. Having gone through a long thawing process, I find myself back into the drug world again. The drugs were seeming to keep the pain tolerable until this bout of bronchitis. Now, I am thrust back into that gray world of pain…the fear of pain coming….the recovery after the pain…the challenges of having a chronic pain condition that can come on in a public setting…the fear of being seen when the pain strikes…the fear that I won’t be able to keep it hidden…fear and pain are the twin demons that inhabit my gray mood.
I had a medical counselor explain to me once that now that I had a chronic pain condition, I was not at the same starting point as the rest of the world. She explained that most people start at a one (on a scale from one to ten) in their day to day lives. Now, my starting line had moved to a five. Illness, stress and fatigue would send me higher and faster on the scale than a “normal person”. She counseled me that I should be gentle with myself in these periods, and not beat myself up for my stronger reactions in these time periods. I was in the world of a “new normal” now and there was no “right” way that I had to react when I was sick or in pain. As a person who desperately wants to do the “right thing” I have fought against this impulse before and tried to continue on even when I was ill (thinking that other people don’t stop their lives because of illness…or being tired…or severely stressed, so I shouldn’t either). That has not served me well, mostly because it sent a false message to those around me that I was doing better than I was.
So, I am feeling gray about being at the high end of “the scale” even though I don’t have a high end illness. Nevertheless, it is here where I am. I find myself smack in the middle of another life lesson (glad to be in the middle of something!). Sometimes in life you just have to accept where you are and breathe through it. I am trying to be accepting…I just wish it didn’t hurt so darn much to breathe!