Wednesday, June 6, 2012

Out from under the covers

I have woken up every morning this week feeling like an eighty year old woman. This is totally unacceptable to me. It infuriates me. Not only is my house such an embarrassment that I would probably not open the door if I heard a knock, even if I was expecting Adele for dinner, but I can barely keep my eyes open to even catch up on episodes of House while I am resting. I do not have energy to run to the store. I don't feel like running to the bathroom!

What irritates me the most right now is that I have this overwhelming desire to just LIVE. I want to be out in the sunshine, walking creeks or stalking through the woods with my camera. I want to jump on the trampoline with my kids. I want to bust my budget on flowers and herbs and tomato plants and garden every single morning of the summer. The entire world is beckoning to me and my dogs are to run and play. I'M begging to run and play. And I have a thousand plans for the next week. Knowing I will somehow manage to carry them off but with a minimum of grace and nowhere near the effort I should put into them is making me feel postpartum. I had a shopping cart full of plants, including the most beautiful rhododendrum bush I have ever seen yesterday. It was overflowing with huge, succulent white blossoms. But the effort of just pushing the cart did me in and I left it packed with plants in the aisle. Picking out plants warms my heart and I knew I would never be able to plant them when pushing the cart was too much for me.

I have lived with this chronic illness for a dozen years now. I know how to push through pain. I know that if I go for a hike or dance to my favorite song that I will pay for it somehow the next day. And normally I don't care! Normally, I live my life despite the consequences to my body. But this week something is different and I can't seem to stand on my own two feet without wanting to melt into a puddle. I find myself angry at this illness that is claiming my time and the childhoods of my five kids.Anger has never made anyone better. But every time  I look out the window and see the sun shining...I want to cry.

I grew up with a very ill mother. I changed her bed pans and washed her when she needed it. I knew that I could never really count on her to be at concerts or games. It was understood that she probably would not make it to see my wedding much less my prom. And I learned to accept that. She has outlived all expectations and we are blessed to still have her. But I promised my family that I would not let my own chronic illness interfere with our lives. I would be the kind of mother that wrestled and played and attended every single little league game. I have to try harder than many just because I am a single mother. I never let that deter me before. But today, they are serving my favorite lunch in the school cafeteria and it's always a given that I will be there for the turkey gravy and mashed potatoes. School lunches are always fun for the kids and I. Sometimes I paint the nails of Sage's friends. Sometimes I bring extra money for ice cream. Once I brought a bag of crazy hats and did hair, but that is another story in and of itself. All of the kids love it when I come to join them. I'm the fun mother, the silly mother, the mother that listens and makes everybody smile. I do all of the things that I wished my mother had done for me. And I know that she tried too, in every way, to get past her illness and to be there for me. But she had a stroke and she was not living with "just" chronic pain. She was in a wheelchair. I am NOT in a wheelchair and I have refused to let pain get in my way. Before Sage was born and when Isabella was much smaller, I let myself succumb to the depression that often accompanies a chronic illness; especially an illness defined in many ways by severe fatigue. This is not the fatigue that you feel after being up for days or after a long day at work. Or even after a marathon. This is fatigue that makes your eyes roll up in your head. It claims your memory. It stifles your attention. It runs you down like a derailed train and you are nothing in its path. You are under an avalanche of exhaustion. It is a point of pride with me that I overcame the depression that had buried me for so long. I watched my children growing and I missed being part of that. Once I climbed from my bed, so long ago, I was determined to not crawl back in.

I started walking a few weeks ago with a good friend. She seems to understand that I can't keep up with her or climb hills. YET. Last week I was sorely tempted to just stay in bed, but I got up and I walked. And I was glad that I did. If she called me today, I don't think I would be able to do it. It seems to have progressed from the usual ache and fogginess into something of a whole other caliper.

I refuse to be taken down just because I was born without a pulse in my left arm or because twelve years ago a doctor said I had Fibromyalgia and that it would have to define my life from then on. I know that by replacing my thyroid hormones I can up the ante and give my body an edge that by nature it does not have. I know that pain is something that I can learn to live with. All I want to do right now is climb under my thick, soft duvet and dream myself into a place where I am running and climbing and doing cartwheels. But the truth is, that often in my dreams I still feel the pain. If my arms hurt, I dream that I have broken them. If my back hurts, my dream will make up a reason to explain the pain. I cant escape it, even in sleep.

There is a world of things I want to do. I am used to having to fight myself out of bed in the morning. I am used to smiling when the face on the pain scale chart says I should be crying out loud. I am used to saying that I am fine, even when my body does not feel fine. Because essentially, I AM fine. This illness does not define me. I do not talk about it to most people. The parents of my children's friends have no idea that I sleep with oxygen by my bed and take pills before breakfast, since I'm not allowed to eat until I have them. If I were to use a cane, which I have in the past, then people would define me by that cane. I refused to be defined by sickness. I feel that speaking about it only manifests it. And I am not going to stop living and loving and breathing.

Today, I find this is a huge challenge for me. This week has been one of the worst I have dealt with in a long time. I can sit and wonder what made that so. I can complain about the weather and the weird effect it is having on my joints. I can feel miserable and depressed and try to sleep my day away. It's what I WANT to do, God knows. I am motivated to do a hundred and one things today and my body won't let me keep up with my heart. The key today will be to make my to-do list a bit simpler. Carve it down into something I can manage. Instead of sinking into a depression because I cannot do it all, I will give gratitude that I am able to do SOME. I will give endless thanks that I am here and alive and able to experience the all of everything. This is who I am. I am an explorer, a seeker, an adventurer...a woman who can laugh through tears.

I will do it not just for me but because somewhere near me, is a person that can't stand. Can't walk. Can't see or can't hear. Somewhere near me is a mother who cannot have lunch with her child. Somewhere there is a child who needs an extra smile today and always looks forward to MINE. And I will go hear the birds sing and eat in a cafeteria full of screaming, happy children  for THEM.

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