I do not know precisely what day my strength went away in the year of 2008. Nor do I know the origin or pathway of the illness that took not only my strength, but my very life away from me in one silent and debilitating swoop. If I had known the previous day that it would have been my last day of strength, I would have been out hiking in my beloved mountains or sweating it up to my favorite four-mile exercise routine or spent hour upon hour walking through store after store, picking up the heaviest bags and lugging the largest boxes I could wrap my arms around. I would have awakened my husband at the time and made love to him until the sun forced its way through the blinds and ushered me into what can only be described as an indescribable life.
My day does not begin. It never ends. It has been over thirty hours since I was last about to sleep for a couple hours and my brain is so fried that I can barely think, let alone type. Of all of the other things that I have to contend with, this lack of sleep is one of the hardest things to bear because it only magnifies everything else that is going on in my body.
My body never rests. It is in a constant state of painful wakefulness. Added on top of that, this debilitating fatigue is enough to literally drive a body insane.
I hate the term “chronic fatigue syndrome.” Absolutely detest it. Because, not only does it not describe what I deal with in my body and my mind on a daily basis, it completely defeats the purpose of any true understanding by the world at large. Most doctors do not have adequate knowledge of it and the world at large does not recognize it, nor accept it, or the people who have to live with it.
People think that it is all in our heads and not a real illness. They push us to move and to “just DO something!” They push anti-depressants on us because they think that we are simply depressed. They think we are lazy and unmotivated and many secretly (and a fair amount of people do it openly with comments and criticisms) resent us for being on the couch or in bed “all the time.”
This world does not accept people that are weak and who cannot perform or contribute to it in measurable and tangible ways. Ways dictated by society’s standards, at any rate. This world does not know that people who deal with CFS (I would much rather call it CFH, “Curse From Hell”), are heroes in every since of the word because we deal with on a daily basis things that for most people would be the actual equivalent of marathons and triathlons and amazing races in terms of fortitude, determination, and grueling endurance. Every single day.
The world, however, are not witnesses to the epic journeys that we mentally and physically persevere through every minute of each day that we live.
Picture, if you will, being encased in a full-body cast. Imagine having to live within the confines of that cast for the rest of your life. For those of us who live with CFS, that is what life is like. It is stifling, one is severely restricted, and it is heavy.
You can’t take the cast off for a while for a break, no matter how heavy it is or how much you long for someone to cut you out of that stiff caster. You are entombed within your own body…and there is no way out. NO WAY OUT.
With CFS, we are prisoners within our bodies. Only, the world does not see the “cast.” Because they do not see crutches or braces or see us writhing and screaming in agony because most of us do what we can to hide our pain, most assume that we are not “as bad” as we say we are or that we couldn’t possibly be as sick as we say, or certainly that we can’t be “that sick” all the time. (“Surely not,” they think.)
It is the lack of empathy that truly tries my patience at times. It is bad enough that my life is not the life that I used to live and enjoy and now sometimes only go through the motions for because I often do not want it anymore. I also have to contend with small minds that do not have the capacity or the desire to try to understand that this life is hell for me. Hell that I would not wish on anyone but satan.
I will be writing a lot more about the physical and mental aspects of this very much hated disease. But for now, I have to stop writing and put my aching body against my pillow for a while. But I will be back again because it is past one in the morning and I am awake. As usual.
Oh, how I HATE how this illness dictates so much of my life! I want to be able to sleep! I want to be able to move without pain! I want to be able to move at all without having to pay for it for days and weeks on end! I want to SCREAM! But that will not do me one bit of good. It will only make me more exhausted. So, I will just lie here on my bed and continue to listen to Jules Massanet play such beautiful classical music. My body may be ticked off, but my soul always sours through the cosmos when classical music is playing.
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I want to share this piece of music with you. So here is something that I wrote while listening to classical music:
Listening to the symphony always fills me with such a feeling of luxury…of such grandeur and romance of the soul and spirit.
When I listen to those soaring notes, an atmosphere of candlelit opulence is mine instantly. A mental fireplace immediately begins crackling with cheerful sparks dallying with flames and playful shadows that dance across the walls in elegant duets and graceful pirouettes. My spirit transcends my present surroundings and joins the galactic pageantry of the stars.
My heart grows winged feet that skip happily amongst the speeding comets that shoot past me, their molten tails brushing against my cheek in fond farewell. I dance with Orion, the mighty hunter, and take tea with Cassiopeia. I sip from the ladle of the Little Dipper and take a moon bath in the bowl of the Big Dipper, hanging my star-speckled gown on its handle. Satin moonbeams stream down my skin as I arise from the bath.
The closing notes of the symphony banks the embers of the fire, while the shadow dancers tiptoe soundlessly across the smooth wooden floor, leaving a lingering whisper of shapes as my mind closes the curtain on the final notes of heaven. I open my eyes and begin to write.
This story was written as a celebration of spirit and an inspiration to all who will read its words.
Life is a symphony. Lift your soul to it and yours will be touched by grandeur.
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I said on the opening page of this blog that suffering gave more than it took and as I listen to this music, I stand by those words. For as the notes of this piece surround my senses, I can truly say that my soul is at peace. With God and with the world He has put me into. Even this body of mine that no longer functions as once it did. For suffering has given me the ability to transcend the wears and tears of this life and focus only on the things that matter to me. And one of the things that matter most is peace. And peace is what I have. In a way, I have suffering to thank for that.