1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to...
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Love Is Here

Discussion in 'General ME/CFS News' started by Quilp, Feb 28, 2012.

  1. Quilp

    Quilp Senior Member

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    An old schoolmaster once told me that life is like a play at the theatre. You perform your routine and then leave the stage. Is this my routine? Where do I go when the curtain falls? Does He write this script? Does He even know I exist? Why would He cast me in this role?

    It wasnt an easy night and it promises to be an even harder day. My eyes open and for some minutes I stare at the ceiling, contemplating all that is and all that will be during the next twelve hours. Feeling more dead than alive I can feel a wave of pain, misery and suffering washing over my lifeless corpse. I have come to know this feeling so well that I can scarcely believe that once it wasnt so.

    Sitting up, I feel spaced out, and for some forty five seconds I feel like I might be about to pass out. I dress myself slowly and carefully as the fabric runs along my skin like freezing cold sandpaper.

    I feel so excruciatingly exhausted that if my body could cry it would scream. Attending to the basics of clothing and washing feels like a tortuous endurance. Is this how a man in his 90s might feel? Perhaps...until I digest the fact that there are things he probably can do that I certainly cant.

    Absorbed in this melancholic perambulation, the reality that I might have to live like this for the rest of my life is so intoxicatingly suffocating that at times it feels like I might be gasping for air in a burning building with no exits. Is this what it feels like to be buried alive?

    I see the letters CFS, ME, on car number plates, shop windows, newspapers, clothing, books. After almost seventeen years of suffering I can no more extricate myself from this illness than shake off the shadow I was born with. After seventeen years of suffering I am broken physically, emotionally, financially and spiritually.

    I circle the abyss, unable to pull away and unwilling to fall in, and yet I forever seem to be just an argument with a loved one, a bill that I cant pay, a pain that I cant take anymore, away from falling into oblivion. You hit rock bottom believing you cannot fall any further, but continue to do so. I am in a nose drive and I cannot right this course. Is this perpetual grief? Help and hope are so far away that the Science paper is summoned into my thinking before fading away again. I cant take this any more and resolve to xxx xx xxxx.

    How many times have family and friends asked, "How are you?". How many times have you exacted the mendacious "Im fine" because even having a short conversation feels like youve broken into tomorrows dwindling energy reserves?

    How many times has a doctor asked you (re: M.E.) about your pain? "Where is the pain?", he says. How many times have you tried to say so much but succeeded in saying so little?

    Do you, Doctor, now in good health, remember what it was like to suffer the flu? I can take away your wretched cough and your blocked nose, but the remaining symptoms I can do nothing about. Imagine having that flu whilst resting in a busy shopping centre. The blinding lights that punish every fibre of your being, the cornucopia of sounds pounding your senses. Can I ask you, "Where is the pain?". I could tell you so much more, Doctor, and would be happy to do so, we have barely covered the first chapter.

    Youve got a throbbing headache, but The Times crossword is important to you, you need to find the answers to seven across and twelve down; what else have you got to look forward to in life? You dont give in but your brain feels like it is being squeezed tighter and tighter until you can think no more, you can watch no more, you can take no more. Is this what happens when the brain goes into cramp? It is agonisingly painful.

    The pressure in your head feels like it might blow you open, your body loses its ability to control its core body temperature. You feel like you are heating up, sweat coagulates around your top lip; armpits sweat more freely, a pungent morass exudes with unnatural ease. You feel so hungry you could eat for hours; you become aggressive, irritable and short tempered. The possibility of even looking at the Times crossword fills you with dread and you swear never to go through that ever againuntil next time.

    Hours later the decline continues. Your head still feels like its in a clamp thats getting tighter; intermittent sharp shooting pains come and go, pins and needles fire up especially around the head.

    Your body hairs stand to attention and even embracing a loved one becomes painful and something to be avoided. Your abdominal region feels like its on fire. Your breathing fractures and you feel like a man that might be drowning, occasionally managing to come up for air. And you know, like I do, that the night's sleep will be shallow and unrefreshing; the dreams vivid and possibly frightening. You know what will follow: that every symptom of this bastard illness will be stronger over the coming days, weeks, months and even years. This is a shockingly barbaric existence.

    My mouth feels dry, a subtle but noticeable slurring of my words gathers momentum and I feel vulnerable. The brain fog is thickening and visibility is down to just a few short sentences. I cannot focus on anything in particular, for any length of time.

    I sit and think about the years gone by, when I enjoyed good health. Conversations I had more than twenty years ago coming back to life. Words that were said to me that never made sense, now becoming so clear.

    I wish I could listen to my favourite song; music that takes you beyond your everyday existence; words and melodies such that everything makes sense, that nothing matters, that nothing can hurt you anymore. Is this how prisoners on Death Row escape their four walls?

    How do I explain the fact that I have come to look forward to death like others look forward to life; that each and every birthday is a celebration for reasons known only to myself?

    Walking up and down the steps precipitates a racing heartbeat that shoots to over a 100bpm in seconds. Breathing thats no longer on autopilot, and my limbs feel so heavy, burning like fire.

    Fighting for every breath you make camp less than half way to the summit before making the remaining journey on all fours. Its like your body experiencing more G-force than should be the case. How do you explain that to your doctor? That you feel as though some invisible malevolent gargoyle is trying to drag you into the bowels of the earth? Melodramatic, sure, but what am I supposed to say? Find me the words Doctor and I will give you this illness on a gilded platter.

    Even after a period of rest you feel like you might drop dead at any moment, and the fact that you are still alive after so many years of punishing suffering is something you can never reconcile.

    My dreams are so vivid, some of which I can remember after several years. One particular dream: in the summer of 2010 I was driving along a dual carriageway at over 60mph when I lost control of the car. I tried so hard to control the steering wheel but I knew I was going to die, and I knew that my passenger, my wife, the only human being I have ever loved, was going to die too. Such a beautiful soul was going to die because of me. In one last breath I cried out "Im sorry".

    The curtain having fallen, and my having left the stage, I want to tell you that there was no blinding light, no tunnels adorned with sweet smelling roses. But I still was, I still existed; blackness everywhere, but I was still alive. I was still alive and the M.E. was dead.



    Dedicated to all those that are much worse than I am, those that dont have a voice, those for whom sorry will always be too late. This is for you. xxx
    MEG, merylg, hixxy and 12 others like this.
  2. salome

    salome

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    holy crowbar (extreme expletive)

    what an account. what an incredibly evocative account. infinite pain. one needs surcease. i hear you. salome
    Wayne likes this.
  3. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Hi Quilp,

    Thanks so much for writing and sharing this with us. It almost came across as poetic, which may be one of the few ways we can sometimes feel human again, if only for a few moments.

    Best Regards, Wayne
  4. Nielk

    Nielk

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    Quilp,

    What a stark naked, honest, picture-like description of what many of us feel. Thank you for sharing in such an effective way.:)
  5. SpecialK82

    SpecialK82 Senior Member

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    So raw and so real, I am broken by such an honest portrayal of our lives....
  6. Dreambirdie

    Dreambirdie work in progress

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    N. California
    Beautifully written and so painfully sad. Thank you for sharing it.
  7. Anne P

    Anne P

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    Thank you for writing my story. I'm one who hasn't the voice. xxx
  8. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    England
    An outstanding piece of writing, thank you so much for sharing it with us. One of the best descriptions of M.E. i've ever read. Thanks
  9. m1she11e

    m1she11e Senior Member

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    Wow! Depressing as hell but the reality for so many. Such a gift you have for putting it into words!

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