ME/CFS Lingo

  • Community Moderator

    Quick question, has anybody come up with a better word than rest. Well meaning people will say ‘I hope you can rest up’ or ask if its been a restful day. I try to explain its more like hitting a wall or crashing but find it hard to convey that lying in bed on the bad days feels anything but restful. I even use the word out of habit and with the best of intentions will probably say it to others on this forum. Just know when I say ‘hope you get a chance to rest’ I understand the anguish that can come with enforced horizontalness.

  • Hopefully one day we can come up with a word that describes it @gretch. I don't think there's one in the English language yet.

  • I use the term "forced bed rest" for what you're describing. It's not ideal, but I think it gets the point across. It can be forced by your body, or forced by you in order to prevent further deterioration.

  • @gretch I heard a medical professional say - to reduce any activity and daily stresses in order to recover which can mean 'literally lying or sitting down' doing little to reduce energy consumption. In this state there is the opportunity for the human body to start to heal or repair itself. It is amazing how 'wording' things can make a big difference as to how one is perceived in the community.

  • Community Moderator

    @donnamarie think I might co-opt that word for a while. Hoping everyone gets some recoverful days.

  • @gretch that is a great idea.

  • Community Moderator

    As a follow up I just want to say how grateful I am to everyone who is sharing their story on this forum. Not just for the obvious reasons about feeling more connected and less alone and shared experiences taking some of the rawness out of the yearning to be seen, heard and understood but also because your honesty and openness is helping me to upgrade my specific ME/CFS lingo as well as my language of illness in general. For context, I grew up in a house where the only response given to the question “How are you?” was “not too bad.” Which is what was said no matter what the circumstances. So huge thank you and admiration to everyone.

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