Aggressive Resting to prevent crashes with ME/CFS

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  • Опубликовано: 24 авг 2024
  • Aggressive resting is a method of avoiding crashes/PEM. Crashes are one of the known ways we get worse. The more and harder you crash the worse you get.
    There is no research on it yet, but personally I have improved by avoiding crashes. This is one of my big tools for avoiding them.

Комментарии • 20

  • @clw7739
    @clw7739 11 месяцев назад +6

    Well explained thank you

  • @andeebee2530
    @andeebee2530 Год назад +7

    I really appreciate your advice. Thank you.

  • @steveolotu52
    @steveolotu52 8 месяцев назад +3

    My experience/perspective:
    I like the metaphor of a fuel tank.
    - Every activity depletes it, every rest refills it.
    - The healthier I am, the faster it refills and the slower it depletes, vice versa.
    - So I try to never get close to depleting it, as it makes it far more costly to refill. The fuller it remains, the more overall "active time" I get.
    Also, crashes can cause chronic, almost irreversible fatigue with new symptoms (my newest skill is vertigo). So they should be avoided at all cost. But maybe depleting the tank (hidden crash?) can also cause that? All the more reason to maintain a full tank.

    • @corey-me-cfs
      @corey-me-cfs  8 месяцев назад +3

      Yeah, you are right!
      Crashes can definitely do that (I went from mild to the edge of very severe in a single day) but running close to empty for too long without ever quite crashing seems to do it too.

  • @mandycoke5013
    @mandycoke5013 10 месяцев назад +3

    Thanks, lovely!! Great advice.

  • @gailducrest8851
    @gailducrest8851 8 месяцев назад +2

    Thank you for this information. I’ve been doing that for quite some time; but perhaps not as intensely. Good information.

  • @Lilzvx
    @Lilzvx 9 месяцев назад +2

    Wonderful tips Corey

  • @CricketGirrl
    @CricketGirrl 10 месяцев назад +2

    All I do is rest. How do I get back from severe?

    • @corey-me-cfs
      @corey-me-cfs  9 месяцев назад +7

      "rest" is so relative. Activity includes your brain and eyes and ears.
      TOTAL rest is dark, no sound, no voluntary muscles activated at all. No screens, not typing, no reading no watching no listening. To pace yourself when you are bed-bound, you need to take breaks in the dark and quiet.
      I also recommend looking at the treatments section of cfs-me-navigator.com and talking with your doctor about the meds there (used by Stanford me/cfs clinic).
      Pepcid is also an over the counter one (made for stomachs, but also an anti-inflammatory and h2 blocker) that has given me a huge boost. I started with 20 mg a day, then twice a day. I would talk with your doctor about that too.

  • @AlbaLynxQueen
    @AlbaLynxQueen 7 месяцев назад +2

    I can't rest really. I am so wired that I don't rest when I lay in bed😢

    • @corey-me-cfs
      @corey-me-cfs  7 месяцев назад +2

      It's really hard. I get it, but it is SO important.

  • @marionjeannesuterbrightestdark
    @marionjeannesuterbrightestdark 8 месяцев назад +4

    The aggressive effects: So, as you say: aggressive resting is key, the only thing ME-Suffer can do to survive years and decades, which is true, but what are the consequences for the soul or body-soul-system? There is a point where you just can't rest any longer in that way. Every acitivity which is needed for the soul and and balance of your body-soul-System leads to crash, for years and decades. You feel, that your psychological needs are so urgent, that you cannot longer stay in bed. Thats the limit of Pacing in severe but also moderate Patients. She can be reached on day.

    • @corey-me-cfs
      @corey-me-cfs  8 месяцев назад +3

      ME/CFS is absolutely soul-crushing, and it is so hard to forgo things, but to get worse is even harder.
      With pacing though, you can often do way more than with "pushing through".
      The "aggressive resting" is specifically for before and after moments when you know you are doing more and extending yourself- doing something maybe that feeds your soul knowing it will cost you.
      It's a tactic to stop a crash when otherwise that extra activity would absolutely crash you. It makes it possible to go to that extra thing that feeds your soul.

    • @marionjeannesuterbrightestdark
      @marionjeannesuterbrightestdark 8 месяцев назад +5

      You are so true! But personally after many years of moderate ME I experience a horrible impatience and often need those extra things to survive psychologically. It's tricky. But I know you are true. @@corey-me-cfs

    • @marionjeannesuterbrightestdark
      @marionjeannesuterbrightestdark 8 месяцев назад +4

      The word aggressive is appropriate!

    • @corey-me-cfs
      @corey-me-cfs  8 месяцев назад +3

      It's so hard, I know @@marionjeannesuterbrightestdark

    • @Tom_from_Midtown
      @Tom_from_Midtown 5 месяцев назад

      I definitely struggle with that too. I've never been a good sleeper in spite of my best efforts as a now expert in sleep hygiene, and when I'm just laying in bed, awake, and doing nothing at all, it feels like torture. That inevitably leads to rumination, and spiraling of depression and anxiety. I wholeheartedly recognize the need for aggressive rest, but it feels like being buried alive. @@marionjeannesuterbrightestdark @corey-me-cfs