Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Good days and bad days

Discussion in 'General ME/CFS Discussion' started by fireflymd, Aug 4, 2017.

  1. fireflymd

    fireflymd

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    Is this how it is for you? I had a couple of weeks recently where I thought I had "turned the corner".

    Still a struggle to get out of bed in the mornings, but I could get through an abridged day of work and wasn't so debilitatingly fatigued that I did not feel suicidal.

    I thought this was "livable". No real life--could not go out shopping, or to dinner after work, etc, but livable. I though perhaps all my antibiotics, antifungal, antivirals and numerous supplements had finally kicked in.

    Then since the start of this week I have started to decline again. I could barely get through work yesterday and today could not get out of bed until later due to feeling shaky and trembling.

    Do others experience this as well? The waxing and waning of symptoms?
     
    JaimeS likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    Sometimes, especially if you don't take care not to overdo things.

    But sometimes there just seems to be no predictability, or it worsens after about 2 or 3 years. Sometimes it improves.
     
    fireflymd likes this.
  3. *GG*

    *GG* Senior Member

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    Concord, NH
    Sounds like you are doing to much. I know it sucks to do less, but that is the best way not have such "bad days". Perhaps it is not possible for you to do less? Financial or family obligations?

    GG
     
    NelliePledge likes this.
  4. JaimeS

    JaimeS Senior Member

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    Mid-Ohio Valley, United States
    Sure, it waxes and wanes: this is a relapsing-remitting illness.

    The trick is to not 'use up' your energy the moment you have it. It's hard, especially if you're used to being healthy, but you have to keep in mind that you have a very low 'energy bank account', and if you spend everything in it you'll be overdrawn tomorrow.
     
    MeSci, Jessie 107, *GG* and 5 others like this.

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