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My Battle of CFS is Now OVER! Praise God!

I have not been online for the past few weeks for a very important and totally astounding reason: As of 8 P.M. November 11, 2012, my battle with CFS was brought to an end by the Hand of God, Himself. This is my testimony:

A few days before the 11th, I had endured a very horrendous crash.  However, I have never allowed my illness to keep me from reaching out to others. On the morning of that day of deliverance, I had not been feeling well, but I wanted to minister to the hearts of as many people I could reach with my limited resources and strength, so I created the page “You Are Amazing!” Because I wanted all to know just how incredible they are and that they have so much to give to this world and to their lives. It took most of the day for me to research and compile all the links that went along with the post that I wrote, as I wanted there to be more than just words of encouragement; I wanted articles, songs, and other sources of empowerment to aid those reading the words that I spoke.

I was almost finished putting the page together when my computer crashed and all the work that I had done was lost except for the first paragraph and a couple other sentences. Rather than becoming upset at all the work that I had done, I simply began the process of putting it all together again, knowing that it was costing my body more and more in effort and energy. But I did not care. All I cared about was spreading as much love and encouragement to as many people as I could reach, so I sacrificed my body knowing full well the price that I would pay for offering myself. (The Bible says, “Greater love has no man than this; that a man lay down his life for his friends.” And since I consider every soul on this planet my friend, I gladly lay down my physical and mental life and energy so that my “friends” would know just how amazing that they are. And you ARE amazing! Never forget that!)

I worked all that day and as far into the afternoon and evening as I could, posting the link in as many places as I could once I had finished the page. I worked until I was in so much pain that I could no longer move. I went downstairs and could barely walk and had a cigarette. I told the Lord that I was offering up my pain as a sacrifice of praise to Him. My head was so stiff that I could not move it and I could barely get up the stairs, but I was praising God all the way, holding onto the wall for support.

My body felt like it was in traction and I was in such pain that the tears would not even flow, but all I was feeling was great love for people and for the God that I serve. I put on my favorite praise and worship music. Before the second worship song ended, I felt the presence of God, which I did not think much of because I often feel His Presence when I am worshipping and praising Him. All of a sudden, though, I became aware that all of the pain in my body was gone. It just evaporated like a warm mist.

At the same time I noticed the absence of pain, I became aware that my body, which has felt as though it has been awake for four long years, was in an active state of rest. My body was actually simulating the movement of deep REM sleep although I was awake. A feeling of indescribable peace overtook my body and I experienced such a deep peace and sense of wholeness, completeness, and satisfaction that I had ever known. For four years, my body had only known pain and debilitating exhaustion that can only be felt and not simply described…and both of those conditions were gone. THEY WERE GONE!

My sister called me during this period and I wept as I told her what had happened and we both thanked and praised the God of Heaven for giving me a bona fide miracle.

I had spent the previous eight months completely bedridden. But after that miracle, I was out of bed the very next morning showering, doing my laundry, the dishes, dancing, and any and everything else I wanted to put my hands to! I cannot describe the wonder and the thrill of being able to walk again. To be able to sit up. To be able to ride in a car. To go to prayer and to church again and to do the things with my sister that I had not been able to do since I moved in with her and my broinlaw because I was so ill.

I have been walking around the neighborhood. I have been dancing. This afternoon, I went out to eat with my sister and broinlaw and we went for a long drive. I wanted to hit the highway and ride forever. Tonight, my sister and I went for a drive and then went to Wally World. It was so wonderful to be able to walk up and down the aisles without getting fatigued or tired.

It is beyond wonderful feeling the energy and vitality that now flows through my body all the time now. My sleep has been restored. God has truly given my a miracle.

But as much as I rejoice in the physical miracle of my health being returned to me, the true miracle to me is what God has done in my life and in my heart. I no longer see life the way that I used to, thanks to CFS and the other things that I have suffered in my life. While there is no way that I would EVER want to endure the sufferings I have in my life again, I am grateful for every single thing that I have suffered because not only has suffering made me into the woman that I am today, but it has taught me so many lessons and has given far more to me than it has taken away and I have all those experiences to carry me throughout the rest of my life and I am able to help others to see and know that their suffering truly does have meaning, though that meaning may be obscured at the moment by pain and confusion.

I write this blog, not as an advocate of suffering, or one who would say to you that what you are suffering or going through is an act of God to “teach you a lesson.” I say it as one who has learned through her sufferings, that your life can be fulfilling, have great meaning, and that life, no matter how bad, is never over. Nothing is ever lost for good. That while suffering can delay happiness, it cannot prevent it. Not entirely, and certainly not forever.

I pray that every single sufferer of CFS finds themselves in the same state of health and euphoria that I have been experiencing since the Lord healed my body. Yes, there is a God. And, yes, He can, does, and still heals today. I am a living witness.

God bless you all.

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Crashed and Burned

One of the devastating accompaniments of CFS is something that is called PEM, or post-exertional malaise. One person’s description of it is “extreme exhaustion of inapprorpiate severity that can temporarily immobilize them and worsen their symptoms following normal physical or mental activity and takes an inordinate amount of time to recover from.” That description is a bit light regarding PEM, as far as I am concerned, but I will go with that definition for now to serve as a springboard for the main point of this post.

The term “post-exertional malaise” does as much disservice to the devastation of its affects on those suffering from CFS as the title “Chronic Fatigue Syndrome” does itself. Both term and title grossly understates the severity of this illness. If I were to rename PEM, I would call it CRME or “Catastrophic Resultant Movement Effect” because that is precisely what happens to me when I crash.

The word “crash” is a completely accurate representation of damage done to my physical person once my body reaches the next limit of what it can handle. The horrifying realization that mental activity triggers the same catastrophic devastation that physical activity does in CFS sufferers fills me with “shock and awe.” A few hours of reading self-improvement articles, providing comfort and support at a couple of my online support groups, writing two articles for my blog, and doing a little research on creating a forum (which I am in the process of doing right now, by the way) resulted in a devastating crash.

“Crash” is the only way that I can describe the resulting trauma. My body literally felt as if it were one of those crash test dummies that you see on TV, slow motion curling up the body and flinging it through the windshield. My muscles all felt bruised on the inside. My brain was in a state of shock that left me in a trembling, surreal state of mind. (Thankfully, my sense of humor was still intact. I thought to myself, “Wow. Am I still alive? Am I even breathing right now? Wow.” An then I had a smoke. A cigarette is necessary for me after events of cataclysmic proportions. Think orgasm.)

I did not turn on the light in my bedroom all day. I wanted to turn off every light in the entire house. I turned down my fan because its noise (that I usually barely register) was intolerable. It hurt to move, breathe, and thinking was absolutely out of the question. After a few fitful hours of wimpering in the dimness of my room, my body fell into a light doze. My bladder picked the very moment that my body drifted into REM sleep to insist that it was going to relieve itself on my bed if I did not take that particular second to go to the restroom. (Restroom. What a cruel joke.)

Psychology has nothing to do with PEM. It doesn’t even figure into the equation. I did not have the strength nor the desire for introspection or contemplation. Neither anxiety or depression or even fear could stand a chance because, quite frankly, the physical trauma overtaking my body superceded both emotion and thought. So whenever I hear that CFS is all in the mind or that it is really depression, I am inclined to render those who espouse those views unconscious for a few moments. I wish that clinicians and statisticians could live in the body of a CFS patient for at least 24 hours. That puts a whole new spin on “clinical trials.”

I am grateful for PEM. Grateful because it is an ever-present reminder to prioritize, remember, and DO the most important things and to let the rest go. I no longer sweat the small stuff. I don’t sweat ANYTHING. Because the cost of that blood, sweat, and tears is too great. I choose only those things that are beneficial and add to my life.

I have lost far too much with this illness. My body and some of my mind. (Brain fog, cognitive impairment, etc.) But my spirit is mine and that I am keeping it. I am imprisoned within my body, yet my spirit soars free like an eagle on the wind.

I wonder what kind of trouble I can get into tonight.

Cranky as Hell!

Okay, I am cranky as HELL right now! My body is in such a state of uncomfortableness that I could literally scream if I had the damned energy to do so!

Some months back, my right arm started giving me trouble. I can only raise it so far (and that movement had better be very slow or I pay the price for said movement) and I can no longer lay on my right side without being completely off that shoulder, else I am howling in pain and my shoulder feels like it is going to detach itsefl from its socket.

My body is extremely sensitive to heat and to light and I’ve felt as though my brains have been boiling inside my head for the last little while.

My body is bloated like a harpooned whale and my hair (what’s left of it, that is) is so brittle and feels as though my fingers are passing through a scattered pile of ashes whenever I try to smoothe down the ever-present bed head.

I can’t remember the last time I slept and when I did it was only for a little more than an hour. My body is literally starving for rest, yet my puffy eyes refuse to close for more than a second or two.

I am tired of laying in this damn bed, yet do not have the strength to sit up or get up.

We won’t even go into the exhaustion. We just won’t go there. We won’t.

To sum up this post, CFS can kiss my evinrude and ride that sucker straight into hell!

Okay, I feel so much better now. I’m going to pretend like I’ve had something to eat and then pretend like I’m sleeping for a while. Fake it ’til you make it, ya know.

This video is my message to CFS and is dedicated to all of us who have to punch the clock and work this “shift” until a cure is found. I hope you enjoy it as much as I did!

 

Mushy Brain

My brain is mush. It is 2 AM and I have only had around three hours of sleep (I fell alseep finally at about 8 PM and woke up at 11 when my sister called, as she is working a double tonight) since yesterday afternoon.

Dealing with a mushy brain is difficult for a woman of my vast intelligence to endure. (I say “vast” tongue-in-cheek these days because the area of intelligence has been diminished by this infernal disease that refuses to vacate my body, irrespective of the numerous times I have invited it to do so.)

I used to be so pleased with the way my mind worked. Creativity flourished and my mind sped along at a deliciously speedy pace. Now, it plods along and I have to wait for it to catch up to the rest of me so that I can attempt to manipulate my admittedly limited sphere of influence into some sort of order and perceived design.

As I sit here staring blankly at this computer screen, as I have been doing for the last ten minutes, I am left wondering what in the world this post was supposed to be about. I had an excellent point and planned on delivering said point to you with flourish and a bit of flair…and I find myself wondering why in the world I am typing in the first place. (I suppose that I could take the “Make a List” route and write down the possible explanations for me starting this particular blog post. It would probably contain something about brain fog, but my mind is too foggy to figure that concept out. And even if I did write something down, chances are that I will forget that I wrote the list and where I put it. And if I did come across the list, I wouldn’t remember what to do with it once I found it.)

Perhaps my point is this: I miss the me that I used to be. However, the me that I am now is not half bad, when I think about it. Sure, I’m not as quick on the draw as I used to be. But I am also much more tolerant and forgiving than I used to be, and that’s a good thing. I am able to laugh more and shrug off things that would have driven me to frustrated fits in the past. I can let go of the reins of life, sit back in the saddle, and simply absorb all of the life pulsating and changing around me.

After that fabulous mind romp that my mind just took me on, I am finally able to ascertain why I wrote this blog in the first place. It was simply to express that my brain is being mushy and I don’t like it. What a revelation. Wow. Who said that mushy brains couldn’t occasionally come up with brilliance?

The Day My Strength Went Away

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.

~ ~ ~

 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.

~ ~ ~

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.