When I was first diagnosed with Fibromyalgia and Lupus, my spirits sunk fast and hard. Acute Depression hit. I missed my job. I missed writing and editing. I missed working at children’s reading materials. I missed working with kids. I missed being the naughty girl at the back of a room, heckling someone, at movies, at poetry readings, in life.
When my doctor told me that I would have to live around illness it confused me even more. I kinda lost track.
I am used to pain. I started getting severe migraines when I was a teen. But over time it spread and became a cycle of weird pain all over. When I was 22, the doctor diagnosed Myalgia Encephalitis, commonly known as Chronic Fatigue Syndrome. One doctor told me that I would just have to be brave and move on. And I did, with painkillers, hormone control drugs most of which contained steroids. I worked, I played, I lived around the pain, sometimes triggering the pain myself, sometimes having it hit me in the middle of life, and sending me hiding in dark rooms hoping everyone would leave me alone.
Later, a doctor at KNH told me that all my symptoms pointed to Fibromyalgia, fed to a certain degree by a wild endocrine system. Still I held on, fighting for dear life to be alive. And I am, to a certain degree. I still love the people in my life as fiercely as, perhaps more than I did before. I still love to write and edit material for children. I still love to work with kids.
I have lost friends because of pain. Some that I loved dearly but who could only see my pain as some kind of excuse not to be alive. I have lost a lover, maybe two.
Four weeks ago, when the specialist doctor read test results that confirmed the Lupus diagnosis, she must have seen the pain in my eyes. She came around the table, and took my hand. I had so many thoughts going through my mind. Mainly, I was holding on to the hope that the other doctor was wrong, and that whatever was crippling my life was something that could just be fixed with an injection or something.
She said, ‘Don’t let the pain kill your imagination. Instead let it feed it. You can be as alive as anyone else if you chose to be.’
Hmmm…I won’t be joining your party today; I can’t stand the noise, or your happy conversation. But tomorrow, I might. Don’t doubt for one moment that I am thinking of you, loving you, wanting and needing to be with you. Tonight, I just want the darkness, the silence, and please don’t touch me, it hurts. Tomorrow, I will love you with all my heart, soul and body.
© Juliet Maruru 2009 www.jmaruru.wordpress.com