When invisible illness cuts short a glorious day

Today started out wonderfully. Granted I was exhausted and under-caffeinated because I spent most of the night texting one of my oldest and truest friends, but this morning I was still raring to go because I knew it was going to be special. 

Today I became an official member of my new Unitarian Universalist Church. I was welcomed by the congregation and signed the book and I was completely overwhelmed with love for and from all the people around me and the Wildflower Child. I didn't want to leave. I wanted to sit in community with hot coffee in my hand and the breeze on my cheek in the garden and just be with my spiritual family for as long as possible. Unfortunately I have responsibilities and had to go home to feed the very hungry dogs and ultimately head over to a local-ish Wal-Mart to pick up a grocery order. 

Also unfortunately, the weather was changing. 

When I got home and took my dog outside, my father joined me and the first thing he asked was "how's your head?" The wind had picked up, barometric pressure had dropped, and thick gray clouds were rolling in. 

"Not great, fragile, but I'm okay." I said with confidence. Thirty minutes later I took my first firocet pill. With coffee. Thirty minutes after that I was in bed knowing I would have an hour round trip of driving later in they day. When I woke up I felt "okay" and went off to pick up the much needed groceries. And the sky was getting grayer and grayer and the wind was getting more insistent and my neck was tightening.... 

I have migraine disease. Many times in my life it has been chronic (more than 15 days of migraine/month). If it isn't chronic, its often. I also suffer from tension and ice pick headaches. I've tried multiple medications, oxygen supplementation, acupuncture, Botox, marijuana, alcohol, caffeine, sex, no sex, massage, hot shower, cold shower, heating pads, ice packs, dark rooms, eye masks, sniffing apples (seriously), essential oils, vaporub, CBD oil, supplements, electronic nerve stimulation, acupressure, dietary restrictions... Get the point? 

Before I moved to Florida last year, I was seeing a neurologist in New Jersey who in our first meeting told me the cold hard truth, "I can't cure you. There isn't a cure." 

I have a neurological disease that is so significant I have lesions on my brain visible with MRI. "They" say that the lesions don't affect brain function, my crippling pain, aphasia, weakness, fatigue, memory loss, tremors, nausea, and vision disturbances might argue that point, but of course "they" know best. 

I'm rambling, the point is, I don't look sick. Unless I'm vomiting uncontrollably out of the open door of my father's car on the side of the road from pain (happened a couple months ago), it's hard to tell there's anything significantly wrong. I look "lazy." Honestly, I am a lazy person, but I get shit done. Migraine however, takes that all away. And it is one of the least understood, researched, or appropriately treated diseases I've encountered either as a sufferer or observer in my life. 

I've been accused of identifying too much with my disease and let me just say that's one of the most offensive things ever. Because you know what I'd really love to be? Productive. Self-sufficient. An outstanding single mother. Active. Healthy. I'd like to remember things as well as my friend does. I'd like to remember anything as well as I used to. I'd like to have enough good days in a row to start feeling inspired to create again and know I can finish a project in a reasonable time. I'd like to have one whole glorious day. And then another. And then another.