Rezultati pretraživanja
  1. 4. velj

    Regarding psychological involvement with , one common element that I've observed in every ME patient I've interacted with: Grief. This is from the loss of their job, income, social life, hobbies, sports, medical insurance, family, friends, and some case the ability to walk,

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  2. prije 4 sata

    It’s likely I won’t get to live to my grandparent’s age. That I have a poorer quality of life & my life expectancy won’t be the same as someone born in the 1940s. It’s interesting to see our will to live at play.

  3. This graphic speaks volumes. 95% of the time I'm definitely in lounging mode, you'd be surprised how much energy getting dressed actually uses up. So when you see me in 'leaving the house' mode it's a fake, a front, it helps me feel "normal" for a while

  4. prije 10 sati

    is the monster, but those in the medical system who blame for this disease & tell us we’re lazy & seeking attention, are aiding & abetting the monster. You don’t need all the answers, you just need to listen & not blame victims.

  5. prije 10 sati

    I don't have many followers (which is fine!) but if any of you who aren't could retweet some of the tweets it'd be appreciated. It'll help get the message out beyond the twitter community. Thanks.

  6. Imagine, just for a moment, that you've had surgery. You can't move around much or leave the house for 3 weeks. What bothers you? Solitude, not working, not cooking or cleaning, being in pain? Now imagine instead of 3 weeks this is the rest of your life

  7. prije 10 sati

    What I’ve lived as a would shock you . Not being believed for 20yrs hurt more than my neuropathic pain that’s like a migraine in my whole body. Only now that I’ve been 100% bed bound (20 months) am I taken seriously. My doctors have no solutions.

  8. prije 10 sati

    So true: ME patients don't fake disease - in social interactions, we usually fake being well...

  9. prije 10 sati

    Around 20,000 people in New Zealand have this illness. It has a huge impact on our lives. Many people know nothing about it. To learn more check out # and read people's stories

  10. prije 10 sati

    To those who say are faking. You’re right, we are. Every day that we fight, we’re faking that we’re not breaking. Every time we smile & laugh we’re faking that we’re not in agony. Every time we distract ourselves we’re faking that we aren’t terrified.

  11. In summary, what is “normal” for ME can be hard to distinguish from dying, especially when you are forced to normalize really alarming and intense symptoms daily, for years on end. This puts in perspective the quality of life people with ME can experience.

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  12. prije 11 sati

    don’t forget about the wonderful new toolkit for ME Awareness Hour... New artwork has been added for you to use. Thank you for this 😘 XXX

  13. Brain foggy sentence of the day: “Right, I’m just going to go and turn my curtains off.”

  14. 1/ Thread Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is it really that bad? Trigger warnings: The studies below paint a very bleak picture

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  15. prije 23 sata
    Odgovor korisniku/ci

    Easy menu navigation. Limited moving/flashing text, images etc. Backgrounds not too bright. Although not brain fog related - a fair representation of spectrum of severity of in photos. Thank you for what you are doing!

  16. 4. velj

    And to feed and care for themselves. This grief should not be confused with depression, anxiety or any other psychiatric condition. It is simply a rational reaction to a great loss. Every experience this. Every. Single. One.

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  17. 4. velj
    Odgovor korisniku/ci

    As someone living with for 22 years, I am even more shocked by the silence and inaction for decades about the millions of people with The silence is so deep, vast majority reading this tweet won't even have heard of Myalgic Encephalomyelitis.

  18. 4. velj

    Spent a 1 hr appointment with a medical specialist today explaining all about and then got slugged $220 for the privilege. That was the extent of my appt. Shouldn’t it work the other way round and get paid for educating the ‘experts’..???

  19. 3. velj

    is trending... All in your head You don't look sick Come on, try harder I get tired too Have you tried yoga? Sleeping all day? Lovely!

  20. 2. velj

    Apparently my not being in a perpetual state of ceaseless positivity is the reason for being unwell. Apparently my illness is CAUSED by my unhappiness ABOUT MY ILLNESS. Sound the dickhead alarm — we have a dickhead in aisle three. don’t listen to the dickheads, okay?

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