Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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What not to say to those with chronic illness (and 5 ways to help)

Discussion in 'General ME/CFS News' started by Demepivo, Aug 7, 2017.

  1. Demepivo

    Demepivo Dolores Abernathy

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    Writer Tanya Marlow who has ME/CFS has written an article for Premier Christianity for carers and people in contact with the chronically ill with specific reference to ME/CFS.

    https://www.premierchristianity.com...those-with-chronic-illness-and-5-ways-to-help
     
    Last edited by a moderator: Aug 7, 2017
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  2. Demepivo

    Demepivo Dolores Abernathy

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    Tanya wrote the article in response to another which appeared on the same website

    https://www.premierchristianity.com...lped-me-recover-from-Chronic-Fatigue-Syndrome
     
    Last edited by a moderator: Aug 7, 2017
  3. Demepivo

    Demepivo Dolores Abernathy

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    Please feel to comment on either article on the relevant website :)
     
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  4. notmyself

    notmyself Senior Member

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    i really wish i never find this forum,but now is to late,i will never be able to delete this kind of information from my head.
     
  5. hellytheelephant

    hellytheelephant Senior Member

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    Just wondering if this should be in the spiritual section(?) I wrote a reply about prayer but not sure it will be acceptable to put it on the General Discussion section..

    @notmyself - try to rationalize this. It is extremely UNlikely that death results from ME....although I do appreciate how some of the posts on PR can make you feel if you are particularly struggling.

    PR has so many good, kind and helpful people on it...and it would be a shame if you weren't one of them :hug:
     
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's just information. It can't touch you, it can't harm or affect you. Your illness course will be what it is whatever information you come across positive or negative. What's needed is to assess your own situation and then take steps to do whatever you can, whatever makes you feel more functional and well. By focussing on that you take your focus away from the info that frightens you.
     
    Last edited: Aug 8, 2017
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    It can be a source of strength to have some spiritual grounding. However I have found that another attitude toward chronic illness that is unhelpful is the There Is a Purpose to my illness, there must be something I must learn from it. To me this sounds like we deserve to be ill--we are being punished for not being good enough. We need this illness to teach us a lesson. What I ask, about all those other people who might need the same lessons in life but swan through with near perfect health and few or none of life's severe traumas?

    Not to mention it's pretty arrogant if someone in perfect health is proffering this advice. That's not to say we stop learning 'life's lessons' since we are still learning how to live like anyone else just with more difficulty with the added burden of being ill.
     
    Last edited: Aug 7, 2017
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  8. Demepivo

    Demepivo Dolores Abernathy

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    @hellytheelephant you can argue which section it goes into. I had a quick look look through the sub-sections but didn't dwell too long as I had brain fog.

    Main thing is that people can read it and decide whether to comment or not
     
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  9. notmyself

    notmyself Senior Member

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    But still we need a purpose in life.Maybe is easier for some to deal with it ,thinking that is happen for a reason all this,to learn something i don't know.i will find a purpose in this only if i somehow i recover and i will know to apreciate the little things that i was taking for granted before..This disease will acctually be a good thing,if it would not last that long or forever..Imagine to suddenly wake up healthy one day after all of this,you will cry of joy ,just by doing normal stuff that you used to do before gettin sick without paying any attention to them...
     
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  10. hellytheelephant

    hellytheelephant Senior Member

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    For me it is not about the 'purpose' of being ill...but rather finding and being grateful for the treasures among the sh*te. :)
     
  11. notmyself

    notmyself Senior Member

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    haha..yes is big pile of sh*te
     
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  12. TiredSam

    TiredSam The wise nematode hibernates

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    Brilliantly said :thumbsup:
     
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  13. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Hang on, hang on a minute here.

    ME is a placeholder name for a bunch of complaints that have not yet been associated with a well-known disease process. The complaints share some features in common, but there's also a lot of variability. It might turn out that different people with the ME diagnosis have a different underlying dysfunction.

    So when you hear "its possible to die from ME", than means "A small number of people who have also been given a diagnosis of ME have died from what looks to be the consequences of their illness".

    These people might turn out to have the same illness as you, or a different one. We don't know yet.

    The much bigger problem is that so many people are condemned to live on indefinitely with awful symptoms.
     
  14. hellytheelephant

    hellytheelephant Senior Member

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    Thank you @Woolie- you express so well, what i was trying to say!
     
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