Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Twitter campain - #MEperspective - please take part

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

  1. enna

    enna

    Messages:
    22
    Likes:
    64
    @Joh
    wow... Berlin... ist sehr schön! Ich musst ein Bisschen weinen, als ich deinen Beitrag gelesen habe. I am so sorry for you, that you had go give up your life... If I hadn't my partner, I wouldn't know who cared for me and where I would live...
    I contacted MEAction yesterday on FB, but they didn't answer yet.
    Alles Liebe für dich! :)
     
    Joh likes this.
  2. Joh

    Joh Inactivist

    Messages:
    748
    Likes:
    4,545
    Germany
    Hi @enna,

    Your last post was so nice, thank you very much! That's more compassion than I've ever got from family or friends in 15 years and I guess the nicest thing anybody has ever said to me about my disease - and certainly no one has cried for me before. Great that you can count on your partner (who even made a website :)).

    I saw that you tweeted a video from fun with CFS and just wanted to let you know, that I made German subtitles for three of her videos (going to the doctor, positive thinking and a guide for the perplexed family member). Thought that might interest you, if you have family that doesn't speak English as well as you do.

    Liebe Grüße in die Schweiz!
     
  3. enna

    enna

    Messages:
    22
    Likes:
    64
    Hey @Joh!
    You made me emotional again! I am normally not the very emotional type... I don't know what to say... No one in my family and none of my friends realise even little what I am going trough... But that's also part of the problem, that in Switzerland there is only CFS known (the non-ICD-psychosomatic-Blablabla where the G in my Berlin diagnosis is fully ignored).
    And people think, when in such a rich country nothing is done for this disease, then it can't be real or really harming... So there is no research, no doctors, no financial help, no wheelchair, no emphathy, nothing - But only victim blaming...
    I hope that this will change a little soon... I am ashamed to live in such a rich country, which wants to tell the whole world about human rights. If i get better one day I really want to move out of it!

    Whats your name on Twitter? The fun with CFS is really good :) I was actually surprised that it is translated! Great job, thanks!
    One day maybe we can meet...
    Stay strong!
     
    Joh likes this.
  4. Joh

    Joh Inactivist

    Messages:
    748
    Likes:
    4,545
    Germany
    Hi @enna,

    ha, your words could 100% be mine. Rich country, people think if I get no treatment it can't be real, no empathy (I'm told regularly that I "destroy my family", am "selfish", "should at least compromise" (the compromise being that I get better) and they are ashamed of me etc).

    Great that you were able to get a diagnosis from the Charite, too (as a Swiss). Since 2017 only Berliners (+ area) are allowed to go there. No doctor so far took the time to at least read the letter with the diagnosis from the Charite and a cardiologist laughed at me and threw me out when I asked because of the POTS (that is mentioned in the Charite letter).

    But you know all these stories yourself. :( I'm so sorry that it's even worse in Switzerland! Is Switzerland not using the official ICD code? Do you have another code/no code?

    Germany mostly doesn't use the G-code in praxis, but at least on paper, so I could argue with it when my insurance refused to pay "because being tired is not a disease" (They actually called me (several times) to ask how I could be so impertinent to not go to work when I'm just feeling tired. And that I surely could not retire on the grounds of being tired). That's so heartless, I haven't left the house for 15 month except for doctor visits, haven't seen people under 75 (am in my 30ies) in that time and regularly cry because I miss working so much (I worked (or tried to work) in my dreamjob in my most favorite NGO in Berlin, my dog was allowed to come with me (and loved it there, so many people to play with), all colleagues were my age, we had no fixed working hours and were allowed to take as many vacation days as we wanted - but it worked because everybody was so driven to create change and save lives. People rather worked more than usual and stayed until midnight and worked on weekends. It felt more like living together in the office with cooking, guitars and yoga during breaks :) (not for me of course, always too sick to take part)). When I read that people with CFS are just bored and have no purpose, it's so hurtful, because I had a community and a cause I'm extremely passionate about. But I don't need to tell you any of this. Your artwork also sounds like you were lucky to be able to do your dreamjob (or a passion instead of a job) and want nothing more than to get back to it.

    I'm not on twitter. Just recently found out that I don't need an account to check for news with ## like #mecfs (my favorite) or #pwme or special ## for conferences. Love your meperspective twitter account!

    Liebe Grüße in die Schweiz! :hug:
     
    enna likes this.
  5. Joh

    Joh Inactivist

    Messages:
    748
    Likes:
    4,545
    Germany
    Perfect! :thumbsup:
     
    enna and Valentijn like this.
  6. enna

    enna

    Messages:
    22
    Likes:
    64
    hey Joh!
    I did not forget you, but I am very unwell and I want to give you a proper answer... But I need some time to do it. My concentration is very very bad never can think clear. Most things on Twitter has to do my patner. I only have diffuse ideas, which de does concretise.
    You found the Schrödinger :) It's a pitty you are not on Twitter! I love your "Inactivist" statement!
    I am writing an answer, but it will need time.
    Alles Liebe für Dich, halt die Ohren steif, so gut es geht! :heart:
     
    Joh likes this.

See more popular forum discussions.

Share This Page