A distant bell pulls me from my slumber and I raise my head from my pillow to find the source. Realizing the offensive noise is my alarm clock I attempt to slap the button that will silence it, but my arm feels like a piece of dead meat, swollen and numb. I roll over so I can use my other arm, but my neck tightens, forcing me to lie still until it is ready to move. The annoying bell continues to jangle, rousing my sleeping mate who rouses to see if I need help.
No, I grumble as I complete my turn and slap the offending clock with my right hand.
The ensuing silence beckons, whispering, Put your head on the pillow, it will be ok, but I have to make sure the children are out of bed, get breakfast and get on the school bus.
I groan and shift my hips, dropping my legs over the edge of the bed. My neck and shoulders scream in protest as I push to a sitting position, searching for my slippers with my feet. If it was a bad night, my jaws and temples throb in pain after hours of clenched jaws and teeth grinding. My shoulders drop as I rise, sending ribbons of pain up my neck. I still cannot feel my left arm as I rise from the bed and take my robe from the handle of the closet door. With my left hand swollen and numb, I clumsily attempt to tie the sash.
When I finally stand, it is sheer agony and I wince in pain at every step. My feet feel like someone is crushing my bones with each step. My legs spasm and I feel my hips tighten as my buttocks and thighs cramp. It takes me longer to traverse the 10 faltering steps to my bedroom door than it takes a healthy person to walk their entire house.
After quietly closing the door so I dont wake my spouse, who works the night shift, I lumber to the fridge for a diet Pepsi, my morning boost of caffeine.
I settle on my desk chair or the couch and flip on the morning news to check for school closings as I swallow my first pill of the day. It doesnt matter what body part I move, all of them radiate pain somewhere. I roll my head, willing my neck to relax and stretch as I shake my left arm in an attempt to regain feeling in my hand. If it is a good day, my I.B.S. will not force me to shuffle to the bathroom. There have been mornings when I.B.S. detained me so long I was late in waking the children, leaving them little time to dress and eat before running to the bus stop.
On normal days, I spend 15 or 20 minutes waking up before I make my way up the stairs to the childrens rooms. This can be the most challenging part of my day as I put my good hand on the rail and pull myself onto the first step. The first six are easy, but soon my hips, rump and lower back begin to cramp and burn. I often misjudge the distance to the next step and crack my shin on the riser. Going down is easier, although I do run into trouble when my left foot drags instead of taking a full step. So far I have been lucky enough to catch the rail when I stumble, avoiding a nasty fall, I hope my luck holds.
Being normal kids they often refuse to rise and shine after my initial wake-up call, forcing me to make multiple trips up the stairs. Once they are safe and secure on the bus I return to my seat and do morning stretches to prod my muscles into action, such as neck rolls and stretching. I eat and take my Zoloft and blood pressure medication as I plan my day, weighing my goals against my bodys abilities.
Some days I am able to do laundry, clean and shop for food, other days, I consider myself lucky if I can remember the word for phone and make myself lunch. I never know what kind of day it will be until I rise. I have had days when the fog was so bad I am afraid to drive a car and isolate myself in the house.
Evening is always an uncertain time as my clock winds down, letting me know my body has given all it can for one day, yet my family still craves normal activities. The young are full of hope, dreams and goals they need my help to fulfill. They want to visit friends, go skateboarding, hike, go for ice cream, and bake cookies or other activities that only the young find important.
Often times I find myself completely exhausted and unable to drive or walk. Pain and exhaustion keeps me from driving them to events in the evening or playing games, often times a simple conversation seems impossible.
Perhaps the biggest drain on my energy is the constant emotional struggle from dealing with family. No matter how hard I try, I cannot find a way to relax after disappointing my family. Being kids, they expect me to find things important to them, important to me. Time after time I have let them down by refusing to drive them to a friends, take them shopping, show them how to cook, sew or play a game.
Then we can add my spouse to the equation, talk about guilt! My out going, fun loving mate has sacrificed more of his life to this illness than I could ever compute. I have backed out of parties, family gatherings and romantic nights.
Sex? Forget it! If I live with high pain levels, I am unable to enjoy sex, but when I take the meds required to insure a full nights sleep and a lessening of pain they kill my libido. It is a lose-lose situation. I miss those special moments when we became one and the rest of the world disappeared if only for a short time. My mate is the person I gave up all people for, the person I wanted to live in bliss with until the day I died, and I can no longer be the person he fell in love with.
If all of this isnt bad enough, we have to deal with the finances. I miss my career and my family feels the sting of living with a lower income. I was a bundle of energy that held a management position at our local hospital, sold antiques on the weekend at local flea markets, gardened, played tennis, put up quarts of homemade spaghetti sauce and herbs, remodeled my home, painted on canvas and installed a swimming pool.
I felt sleep was a waste of time and I couldnt sit still long enough to watch a movie unless I was doing something with my hands at the same time. I was able to multi-task with the best of them, handling budgets, personnel, ordering, implementation of new programs, product research and more. Now I have to stick to a careful medication regimen just to insure six straight hours of sleep a night.
I feel a loss of self when I look back on my career and spend sleepless nights wracked with guilt as my husband struggles to provide for us with one paycheck. Tears fill my eyes when I try to tell the children why we cannot buy them that $50.00 video game or take them to the amusement park.
I have had doctors tell me to cheer up as, Fibro and CMP are not progressive diseases that will eventually kill me. I find little comfort in their words and wonder if a quick end would be preferable as I have very little quality of life as I am now.
I tell myself that I do not have it so bad. I dont have cancer, diabetes or a heart condition. Others have been maimed fighting for our country, lost limbs in accidents and battle tumors, but after years of living with pain, fatigue and chronic IBS, I am tired.
However, I continue to cling to hope. I have so much to live for, so many people depending on me that I keep pushing forward. If a cure is found, I will be grateful, if not I will be satisfied knowing I did what I could to educate and help others while hoping for a cure down the road.
If you have chronic pain, fatigue and bowel problems and are seeking a diagnosis dont give up, help is out there. You may have to visit more than one doctor or clinic until you find someone to believe in you, but the effort will pay off. You also need to know you are not alone, thousands of people, worldwide, suffer from the same condition. Reach out, find a brick and mortar support group or an online group where you can share your feelings and garner useful information.
Often times we feel unworthy of love, so I want to end this piece with something the spouse of one of my fibro friends said to her one night as she lay on the couch wracked with pain.
Her spouse leaned over the couch, took her face in her hands and said, I would rather be celibate with you forever than have sex with anyone else.
This simple moment showed me the true meaning of love. Life is worth clinging to and hope is not a useless emotion.
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