The Sum Of Me

Henri Matisse, The Dance I, 1909, Museum of Mo...

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I am part of an internet group of dear friends who also have Fibromyalgia, a chronic pain disease. We generally talk about the effects of this leech, this parasitic illness and how it makes us feel and how it affects our lives. It is what brings us together; and we truly care about one another. Imagine, a group of people who you have never met yet you trust them, seek out their advice. These people really do know how your pain feels.

We could discuss things we used to do but cannot do now. For me, I would talk about gardening and how I used to have a big vegetable garden many years ago when bending down to my knees and getting up was no problem. I would reminisce about the bright green English peas that grew, the fiery red cherry tomatoes that bathed in the sunlight, two kinds of lettuce and thick, orange carrots. I could also talk about the three miles I used walk in under an hour with my work friends each day, outside, around a blue-green reservoir. Maybe I would confess I was a size eight for about two minutes and twenty years ago while I was struggling with infertility issues and the deep, emotional pain of that process. “If I couldn’t have children, I was going to be skinny” was my mantra as I made myself march outside.

The summer before I was diagnosed with Fibromyalgia, and my children were at camp, I would take the train to New York City and relish being surrounded by people from all over the world, hearing them speak, watching the beautiful, colorful outfits that so many people donned in shades of rose, green, yellow, blue, shades of white and grey. Perhaps I would see a Broadway show for half price, go to a museum, or back to the Village and try to recognize it after many years. Going in to the city was like having an international picnic without even leaving the gleaming Grand Central Station.  I didn’t worry back then about getting to the city and how much walking I would have to do and whether I had to take a cab because I was so tired and drained that I couldn’t put one burning, aching, painful foot in front of the other.

Many blogs I read are about chronic pain and diseases, and I wonder at their brilliance. It’s a dilemna for me because while I do write about my chronic illness or two, I write about everything else in my life.  Am I doing myself a disservice? It could be. I write about food, depression, fun, family, television, friends, travel, grief, cheesecake, chocolate etc.  It’s a mix and mash-up of a blog, like a patchwork quilt with different patterns and colors. Do I need to define myself more clearly?  I may have just answered my own question. I am all things, not just one.

I am a patient, a parent, a friend, wife, mother, teacher and student. I love many things: reading books with beautiful covers, writing, taking photographs of children or benches or boats. I love to watch red cardinals and yellow finches at my bird feeder and butterflies winking by me. I love to eat good food, I am sweet on sweets, I dislike alcohol; coffee, orange juice, chocolate milk or Diet Coke are my beverages of choice, I drink them all at different times.

I could choose to pick one subject to write about but, it would not be my true self, of that I am sure. I am all over the place with emotions and experiences, flying, sometimes crawling, like red, yellow, blue and black kites sailing in the gusty wind, all tangled together, or in peaceful harmony, sometimes independently flying free. I am a person, with many  facets. I am as many pieces of my puzzle as I want. It’s my puzzle, I need to make the pieces fit,  for me.

The Stranger

Robber Fly sucking the life from it's latest d...

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My head is throbbing, my cheeks hurt from congestion, my legs feel like tree trunks. I want to get showered and dressed and hop into the car except I don’t hop anymore nor do I skip. In the best of times it’s hard to even walk, to get up from a seated position, to lower myself from standing to sitting in the car. I’ve been robbed. I have been robbed of my physical, mental and my emotional health by some unknown force like the robber fly as he takes his victim.

In addition to Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis I now have a simple virus or mini-flu which in the best of times makes you feel poorly. But, a virus on top of my other two chronic illnesses makes you feel overwhelmed. I can usually handle the discomfort and pain but not now. Not this time. Is it a flu, a Fibromyalgia -up or a flu on a fibro flare? No one can even tell me what a flare up really feels like or what it does to my body. I don’t really need to know but it would be nice if I could once in a while differentiate my sources of pain. I can’t. I only know that I feel worse, that every step is agony and that I groan going up the steps and down, clutching the banister for support. What has happened to me and who have I become?

I don’t have the energy or the will to get showered, dressed and out the door. Everything I do seems to be an overwhelming task. I cannot remember what it felt like in the past to have such strength and motivation and joy to start a full day. If I can do one errand, get out of the house for one thing in particular, it’s a good day; I have achieved something major.

Fibromyalgia hurts my body, my mind and my feelings. Imagine having a disease that gives you extraordinary pain when half the world is smirking and rolling their eyes and the other half are nodding with tears streaming down their cheeks in empathy. The world, as always, is divided.

I both dread and look forward to my appointments with my Rheumatologist. Sometimes I feel that THIS time he will have the magic answers, most times I can comprehend that there are no miracle cures. I have this chronic illness that will not go away, ever. I am not the same person who used to walk with friends for 3 miles in 45 minutes, who was a size 8, who belonged to a gym with my friend Lisa, who was young and independent.

I was a different person years ago. I worked full-time and drove back and forth to work, made dinner, took care of my child, went to bed fairly late and woke up to the shrill noise of my alarm clock and my husband’s arm nudging me awake. Who was that girl, that young woman? Why did you have to keep her held hostage forever? Why not even a reprieve now and then?

I sit, I wait, I lie down, I avoid the ice, the freezing rain, any chances to fall and break another bone. I lie back against three lumpy pillows and think about dinner or when I will feel able to pick up my prescriptions from the drugstore. I am not who I was yet I don’t recognize myself either.

Who am I? I am lost.