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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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could no cfsers handle or low level crap days??

Discussion in 'General Symptoms' started by heapsreal, Jul 12, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I have been thinking that many non cfsers dont really understand how crap we feel. Most of us havent had a normal day in years. I dont normally mention to my wife or family that im feeling crappy unless its a bad one and i dont normally have to tell them as they can see it. Anyway if we could make a non cfsers experience a week of the way we feel on a average low crappy day for us that we think as normal or good, do u think they would whinge and carry on, run to the doctor etc and think they have cancer or a brain tumor??

    I think in general most cfsers are seen as a pack of whingers, but i think after getting over the initial period and sort of excepting we have cfs and cures are rare, we suppress alot of what we are experiencing as know one can help us and i suppose dont want to be negative and try hard to be positive.

    I was talking to my brother the other day and he mentioned my cfs etc and mentioned how sometimes he gets a foggy head as well. now i was having a good day for me and to look at probably appeared normal but i said to him i have a headache/brain fog everyday and i do now. He seemed confused and i thought maybe it was because i wasnt mentioning about having a headache or hanging my head low or coming accross as feeling down. I only mentioned it because he brought it up.

    I mention all this because yesterday on my scale of feeling crappy, i felt like shit, lol. Now last night medicated myself abit heavier then normal to overcome my headache and get to sleep, today i have woken up feeling better but just that low level crap feeling as soon as i woke up and wondering if today im going to deteriorate to the shit level(sorry for the language but its descriptive term is easiest to describe it). Usually i wake and feel not to bad for an hour or 2, not at the crap level yet.

    Anyway, i have dribbled enough, does anyone feel or understand what im dribbling on about.

  2. LaurelW

    LaurelW Senior Member

    Sure do. If non-CFS people had any idea what "normal" was for us, they'd run away screaming.
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi LaurelW, I think many who get a glimpse run a way with the metaphorical equivalent of hands over their ears shouting La, La, La, La, I am not listening. I think many are in denial because of fear, no way the world could be that bad, it would be too scary, therefore we must be making it up. Bye, Alex
  4. Purple

    Purple Bundle of purpliness

    Most people who listen to me describe what it's like to have ME are usually horrified and terrified:

    - horrified that such an awful illness exists, that there is no cure, meaningful treatment, search for treatment...
    - terrified of getting it too
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    And alot dont believe us and think we are psycho too!
  6. laura

    laura Senior Member

    Southern California
    It is very frustrating, that even people who care about us, can't really fathom what we struggle against every day. Sometimes the attitude I encounter is, well, she must not be trying very hard to get well.

    Yes! Just this week I expressed concern to my doctor about heart symptoms. The doctor suggested it was anxiety and maybe I should try medication...! Nevermind that I don't get the symptoms in response to stressful events, nevermind that, before getting sick, I never had such symptoms. That information, he didn't want to hear...
  7. taniaaust1


    Sth Australia
    I think i understand what you are saying.

    My boyfriend the other day when I rang him upset over the seizure.. said "Ive gone like that too at times". ummmm If that is a fact, Im going to be pushing him and trying to insist he goes and has a brain scan too as collapses with only partial consciousness with hands flapping about hard on the wrists due to obvious seizure just arent normal..

    Im assume he thinks I just twitched or something or just had a normal collapse (those I dont worry about as they are so common to me).. twitches and myoclonus etc arent uncommon things for me either so arent anything I worry about at all. This was no just twitching.
    I so wish he'd been here at the time to see what happened as Im sure if he had been he would of been so concerned that he would of rang an ambulance.

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