August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Twitter campain - #MEperspective - please take part

Discussion in 'Millions Missing Campaign' started by enna, Aug 20, 2017.

  1. enna

    enna

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    Hi everyone

    I am suffering from ME for 15 years and am mostly bedbound for a long time. Before I was an artist, but I can’t do artistic work anymore. Making art was the center of my life beside going to the nature.


    Now I had an idea for a Twitter campaign for ME, which I started and would be very happy if many of you would take part. It’s called #MEperspective and consists of ME sufferers who are bedbound or have to rest a big part of their time posting a picture of their perspective while lying in bed. It shows our perspective in the sense of our view, but it also shows our perspective in the sense of our outlook, if we can’t get a treatment, which brings us back to life.

    As I’m inspired by millions missing who make the actions with the empty shoes, I took my feet in the center of the picture. It would be kind of the other side of #millionsmissing: while we disappear from the life in the outside, I would like to make us visible again with our limited lifes and perspectives. You see what we ME sufferers see most oft our time. While I was spending my life bevore the illness outside hungrily catching visual impressions, mostly with my camera in my hands, everything has become static now and like many of us (who can at least still bear light) I watch into my laptop or at the wall. I would love it if many of you would take part and I would love if there would arise an interesting insite in ME lives.

    I made a twitter account @ME_perspective and posted the first picture with the hashtag #MEperspective. Have a look on my start and take part!

     

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    I've tried to get it going on Facebook also
    https://www.facebook.com/TomKindlon...41828.656049027876559/886538721494254/?type=3

    ME perspective.PNG
     
    barbc56, ScottTriGuy, Joh and 5 others like this.
  3. boombachi

    boombachi Senior Member

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    Great idea. I don't have a twitter account but i like the idea.
     
    Joh, barbc56, enna and 2 others like this.
  4. Skycloud

    Skycloud Senior Member

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    Great idea!
    (Also, it's nice to see someone else's room)
     
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  5. enna

    enna

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    Hi @boombachi
    Whoever wants to join but doesn't have twitter can post the picture here and write a short sentence (max. 100 characters ) to it. I will post it on the Twitter site with your first name.
     
    boombachi, Joh, Lily Valley and 4 others like this.
  6. Esther12

    Esther12 Senior Member

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    LOL - my view is rather less aesthetically pleasing than that. Think I will keep the shame of my domestic clutter to myself!
     
    Last edited: Aug 21, 2017
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  7. enna

    enna

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    No, you would come to the reality of ME live. I luckely have my partner caring for me, but it really doesn't always look like that! Before I became so ill I was an artist, and this wall is a relict of a better time. But with ME we can't really choose our perspectives! I would like to show all kind of perspectives.
     
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  8. barbc56

    barbc56 Senior Member

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    You have very good taste with decorating. I would be ashamed to have my room photographed but maybe I could get a pedicure and show only my feet?
     
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  9. enna

    enna

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    Meanwhile I think I probably made a mistake choosing this picture, as it not showing my everyday reality. It is normal to have a much more chaotic and pragmatic room with this illness. Mine is idializing, but thats because the visual thing was always been central for me as an artist. But its not the idea to show a nice room. The idea actually was to show the limitted perspective of the ME sufferers. We do not choose to look at the same wall every day instead of beeing outside. And we do not choose to live in the darkness or chaotic and dirty, because we dont have the capacity to do otherwise. My idea was to show the intimacy of illness without having to show your self. But if you feel uncomfortable to show your room, then show more of your feet! :)
     
  10. Lily Valley

    Lily Valley

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    Great idea, and I love your view with all the details! I don't have twitter but I could send you a picture of my view if you want to tweet it.

    I like that it's related to the shoes in millions missing, the bare feets in the bed!

    And it could be a picture with just a small fragment of something you have beside the bed that gives hope, even if its chaotic around it.

    Maybe there could be a link to donation too, to OMF perhaps?
     
    enna and barbc56 like this.
  11. Marc_NL

    Marc_NL Senior Member

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    I wonder how many of the pictures to come will look like this:
    black14.jpg
     
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  12. enna

    enna

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    I thougt of the same! i will post this on twitter!
     
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  13. enna

    enna

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    done:
     
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  14. enna

    enna

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    My love made a homepage for the #MEperspective. Any inputs or photos are very welcome. There is also a link for donation (open medicine fundation)...its so hard... what can we do to be heard... I am 15 years without medical help at all. In my country there is not one Doctor who is treating ME or is willing to read some research.
    https://meperspective.wixsite.com/meperspective Screenshot.png
     
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  15. Joh

    Joh Inactivist

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    Hi Enna,

    Love your campaign, great idea! :thumbsup: Have you thought about sharing it on MEAction (so that even more people might see it)?

    Your sentence
    could be mine. :hug: Exact same experience. 15 years stolen and I haven't even managed to get basic medical help like sleeping or pain meds.
     
    enna likes this.
  16. wastwater

    wastwater Senior Member

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    I did some pics like this I'll try find them
    Like the pet pics great companions
     
    enna likes this.
  17. enna

    enna

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    Hey @Joh !
    Thats it! not even ME unspecific medical help: sleep med, pain meds or antiinflamatory (I am having a high sedimentation rate for years). its frightening! I have shared the campagne on the MEAction facebook page, but its not really visible there...
    Nice greatings to Germany from Switzerland (in english) :)
     
    Joh likes this.
  18. Joh

    Joh Inactivist

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    Grüezi @enna,

    Really like your wall! Used to have a similar wall in Berlin but had to move back in with my parents (in my 30ies) to be cared for and now look at the wall of my former children's room. To wake up every morning in the room I lived in when I was 7 (and to be more dependent than when I was 7) is hard.
    Anyways, I believe you could also put your campaign on the MEAction website and it would be also shared on their social media channels then.

    Uf Wiederluege :)
     
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  19. TiredSam

    TiredSam The wise nematode hibernates

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    Until I tell another lie?
     
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  20. boombachi

    boombachi Senior Member

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    I think this is fabulous. Well done.
     
    Binkie4, enna and Invisible Woman like this.

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