Thursday, September 15, 2011

But you don't look sick

I have tried over and over to write in some meaningful way about my pain and symptoms. I am harder on myself than anyone, and so it always seems to come out sounding weak and complaining and just wrong. I feel pressure to put some kind of spin on this suffering. You see I have lived for a very long time with the eye rolls and whispers and in your face exclamations, "But you don't look sick!" Even after all the emergency room visits, the scans, the bleeding episodes and the surgeries for the hidden disease, endometriosis, I would beat myself up in secret. When my kidney was blocked those months I was pregnant with Danica I experienced nurses who would actually scold me verbally for using the pain medication I did to make it through. Even well meaning family and friends would gossip that there must be something psychological going on. Yes, the dreaded, "It's all in your head."

It was and is in my head and every where else too. Even as a young child I would complain about headaches. They would come from my neck and up the base of my skull. I would ask my mom to rub my neck and shoulders and push on my bones. As I got older I begged her to take me to a chiropractor. I would sometimes get relief from these adjustments and sometimes feel even worse. I'm not going to tell my life story of pain here, but I just want to explain this is not a sudden onset kind of thing. There were periods of trauma or illness in my life that made me much worse. In 2001 after months of widespread pain and a host of other symptoms I visited many specialists in the DC area and was finally diagnosed with fibromyalgia. Over the past decade I have tried almost everything possible including medication, trigger point injections, therapy, supplements and of course lots of prayer. I have always lived with more bad days than good. For years I have edited my life down to the basic things I must do. Any stress, even good stress, can send me to bed or make me sick.

I finally found the perfect analogy on a website to explain what my life is like. It's called The Spoon Theory and is written by Christine Miserandino.

Recently I have been recording video clips instead of blogging because my hands and arms are in so much pain and my head hurts so badly. If I were brave enough I would post one here. I actually DO look sick of late. I haven't had any hair care since April. I'm gray and have split ends and my hair is falling out all over. I only shower every three or four days because it's one of the things that definitely takes away the most spoons. Washing my hair and shaving are painful and exhausting. If I have an appointment or somewhere to go I cannot plan to get ready and do the planned activity on the same day especially if I also have to drive. I say "no" to almost everything and if I say "yes" I often end up canceling. Literally the one thing a month I am committed to is somehow making it to the book club I attend. These ladies are some of the only friends I have here in Ohio. I love to be with them. Their faithfulness to me during the past years is amazing. This is the one thing I do for me that I enjoy completely. Tuesday night was our September meeting, and I have never wanted to leave this basement and go somewhere so badly. By mid afternoon I knew there were too few spoons. Dan is still having kidney stone pain, (He will have another x-ray and consult with a new urologist on Tuesday) and I could barely hold my head up. There was just no way to even push myself.

The past two days have been even more brutal. By mid day I have to lie down. I have pressure in my skull and neurological symptoms like facial numbness, hearing loss and vision disturbances. My neck is so tight and knotted and the pain and weakness extends down into my arms and hands. I feel like I have little spiders crawling on me and my muscles twitch and jump. The spoons I have are reserved exclusively for taking care of Danica and helping Laney with her school homework and our bedtime routine. If I haven't emailed you back or responded on facebook or called you or written you a thank you note or sent a birthday card it's because I am just making it through.

Last Sunday one of my book club friends, Sarah, came to visit me. She brought me the gorgeous spoons shown above. I had never talked about the spoon theory to her, but she had seen me mention it on my facebook status and then lovingly searched for this gift to encourage me. I'm a person that likes to hold onto things when I pray. These spoons are my new prayer partners. When I have nothing left to give I pray for Faith, Hope and Love to carry me moment by moment, grace to grace, strength to strength.

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