Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Good Days

Discussion in 'General Symptoms' started by Marco, Jan 25, 2010.

  1. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Actually the title is a bit of a misnomer. My good spells last no more than half a day.

    While my symptoms tend to fluctuate a little depending on what I'm doing etc most days are just like any other.

    However, on average three times a year, I suddenly feel better. Not just marginally better but almost 100% well - the way I was pre-ME. These spells are not related to any activity, the weather etc.

    The way I conceive it is if you think of the various bodily systems as like a long sine wave, dipping above and below optimal, but all out of sync. Inevitably they will all be in phase at at optimal level at some stage. Of course, when this happens I tend to want to do the things everyone else takes for granted and we arrange to go to the cinema, out for a meal or something.

    Without fail this 'overexcitement' results in a completely sleepless night, as if my brain just can't process all the information, followed the next day by a mighty crash and a further few days before I'm back to my 'normal' routine.

    As for the bad days they tend to be prompted by more specific things such as doing to much physically or mentally. Apart from the complete mental shutdown I suddenly go from being generally mobile to a bent over, pidgeon toed, limping pseudo-pensioner just about capable of dragging myself to bed.

    Does any of this sound familiar.
  2. flybro

    flybro Senior Member


    So far I've found that for the last 3 years I have been 100% back to my old self, 3 times. Each time it was between Feb and March and lasted for three weeks.

    I was convinced I was better each time, on all three occasions when I crashed, I crashed for a long time, with old symptoms being worse and new syspmtoms that I hadn't had before coming to stay.

    I'm also the same re feeling OK and making plans to go out, even a Dr or hospital appoinmnt, the minute I know I am going out the next day, I have trouble sleeping, even with zopiclone.

    However I also know that I nearly always feel like death when I get up, and that it can take me up to a three or four hours before I am able to acheve, washing dressing and eating.

    After this I'm normally ready for a rest. So if I am to go anywhere, I have to be up for 4 or 5 hours before the appoinment, in order to be presentable ready and rested enough to leave the house.

    Generally speaking after the journey, and waiting to see a Doc or consultant I am exdhausted, not able to take in what is being said, or express myself. This leads to me feeling very frustrated. Knowledge that I shall be worse off tomorrow than I was yesterday, for a fat lot of flip all, also leads me to stop bothering the Doc.

    By the time I get home I'm exhausted, and will likely be in bed for 10 to 15 hours, and it will take me days, sometimes weeks to achieve the levels of activity that I was previously acheiving.

    If I feel like crap but had a good time, or benefitted in some way, I don't mind feeling like crap afterwards.

    If the wether is good and I feel well enough, I do try to go out, somewhere pretty that has a close car park.
  3. Lily

    Lily *Believe*

    This sounds extremely familiar and I always feel so validated when I hear any of you describe such things.:Retro tongue: For me though, I don't have 100% days anymore. The % of normal of these days has seemed to decrease each time. The crash after doing something on those days seemed to get worse and worse, and I think I'm afraid of doing much when I have one of those days anymore.
  4. George

    George Guest

    It runs about every 9 to 10 months for me. I get to a 60 on the physical scale instead of a 40 and my cognitive goes up to maybe 70 instead of 55. For about a month maybe two I can do some of the things like going to a movie, out to eat, clean out my closet, help a friend with computer problems. In fact I'm ansy to "do" during that time.

    Then it's crash, three or four days in bed, my physical climbs back up to 40 slowly. My cognitive crashes to around a 30 and slowly climbs back up to around 55. So I don't get worse because of "good days" and I don't get worse in the long run.

    So yeah it sounds very familiar.

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