Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Explaining CFS Symptoms to Well People

Discussion in 'General ME/CFS Discussion' started by crdutch, May 16, 2017.

  1. crdutch


    I have had CFS since 1980, at the age of 33, and was diagnosed in 1992. For the first 25 years I would sometimes go into fairly lengthy periods of full remission; however, no longer. When remissions did occur, I was intrigued by their onset, and subsequent disappearance - it was sudden!! I particularly remember one fairly long-lasting remission that seemed to come over me in the space of less than 10 minutes. This happened another time a few years ago, but the remission only lasted 24 hours, and I have no idea why that was the case. I've had no remissions since.

    For most of my journey I've refrained from telling people I have this disease because of either their condescending attitude to it, and/or their complete non-understanding of my symptoms. I finally thought of a way to describe what I'm going through that enables those with an open mind to this illness to partially understand.

    For starters, you don't feel fatigued; you feel sick. Energy is depleted to the point that you don't even have a pilot light. What does that feel like? It feels like your body is shutting down. Imagine a starving person - literally, someone experiencing famine. S/he becomes weak to the point that standing, talking, thinking, let alone walking, feels like torture. This is what it's like to have CFS; at my worst I literally feel like I'm dying.

    I've been lucky in that I don't generally have CFS as bad as many I read about, but living with this for the better part of 37 years makes me yearn for a cure to at least experience some quality of life before mine is over.
    hedgehog, erin, slysaint and 7 others like this.
  2. Sparkle22


    Hi I'm new to and totally get where you are coming from.
    I've had it 18 years but can't believe how long you have had it for!
    I just get by, I don't work, don't go out much, and basically just exist, not living.
    I would love to do simple things but even going on holiday scares me. Catching bugs on the plane, covering head to toe in sun cream chemicals, eating different food.
    It feels like your in limbo doesn't it.
    I'm still searching for the cure. Xx
    Jennifer J likes this.
  3. perovyscus


    I say I get migraines. I have never had a migraine. It's not entirely incorrect, kind of like a full body migraine.

    Sorry true migraine sufferers, they seem horrible. But that's what I do.
    Jennifer J, Deltrus and Mel9 like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Jennifer J and Deltrus like this.
  5. Hell...Hath...No...Fury..

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

    I've been a migraine sufferer from age 4; severe for the last 20 years and I never tell people about the migraines as thats often just as bad as describing the ME.

    Migraines are just a headache to normal people (instead of full body that they often are) so for me i often just say dysautonomia, as they haven't a clue what i'm talking about. It might be only one of my illnesses but it often does the trick as people can't have pre-conceived ideas about something they've never heard of.

    I suffered ignorance and prejudice with the migraines long before getting the added prejudice with the ME so at least i was expert at dealing with it right from the start of the ME.

    If i do have to explain more I just tell people that there is zero energy, and whatever I use, I lose.
    Too much mental turns me into a vegetable, too much physical causes paralysis until recovered but with the added misfortune of head to foot agony during paralysis. This is usually enough to get the point across.

    I told someone once jokingly that I had Newton's Syndrome: Every action has an equal and opposite reaction ;)
  6. Art Vandelay

    Art Vandelay Senior Member

    Adelaide, Australia
    I agree. When I'm having a bad day, I make a point of saying that I'm "feeling sick" rather than using words like 'tired' or 'fatigued'.
    starlighter, Mel9, Chrisb and 2 others like this.
  7. Sparkle22


    I do tell people I have ME and think it's up to them how they take it. No one can ever imagine what it's like, I try to explain by saying imagine flu with a hangover and running a marathon in a lead suit! Well that's pretty much how I feel.
    It is a lonely illness as so hard for people to understand. I was watching my local news last week and this guy came on who had CFS but boxing helped him! I was furious as I thought that just puts us right back.
    Going to pilates once a week is a struggle, I'm the youngest in the class and still sit out a few moves as no I'll be in agony. Sometimes I have to go weeks without going so seeing this man going crazy boxing at the gym really frustrated me. X
  8. Quemist


    Savannah, GA
    I generally tell people, "you know that feeling right before you're about to get a really bad flu? Muscle aches, joint pain, chills, sore throat? Yeah, I have that every day." I have a mild case and I'm in some sort of remission right now.
    Sparkle22 likes this.
  9. Barry53

    Barry53 Senior Member

    My wife has had moderate ME for over 10 years, and I'm still learning! We were talking about this a few days ago, and she explained her fatigue/illness to me in a way I could begin to identify with. She said that any parent will have had the odd occasion where they have slaved all day long as per usual, and because the children were ill, still been kept busy looking after them all through the night, with no sleep and little respite. And then the same the next day and night. By which time even a fit person will be feeling ill and utterly, utterly exhausted/drained. This, my wife says, gives a non-ME person a hint of what it is like to have her kind of ME.
    Last edited: May 17, 2017

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