First proper ‘crash’ since official diagnosis

  • I finally got a diagnosis several months ago, which empowered me to care more for myself and prioritise rest. There have been ups and downs but usually no more than a day or so at a time of feeling below par. The last several weeks I have been becoming more generally fatigued, but since it wasn’t too acute I didn’t take it too seriously. Then a week ago I pushed myself too far and have been pretty wiped out since. Lots of days not up to much more than staying horizontal, maybe a bit of reading. Since I haven’t had to take such a significant and intentional step back from family responsibilities before I am trying to remind myself how important it is to rest, to recover sooner, than to “just do” that one extra little thing… it’s hard, as you all would know. Before now I have been so relieved by the opportunity to rest nothing else really concerned me; this is the first time where I start to realise what I must miss out on in order to take care of myself in the right way. Thanks for taking the time to read - I just felt I needed that little bit of feeing understood!

  • I'm so sorry @Bee it is just so hard to have a nasty crash when we have been working so hard to look after ourselves.
    And the hardest thing is we so often can't tell in advance.
    Those last several weeks of being more generally fatigued were probably a clue (but it is so hard to tell when there are so many other factors in out lives).
    And oh dear, the seduction and the danger of that 'one extra little thing'!

    When we are travelling okay we do build those activities and responsibilities into our lives and then have to unravel them all because we are back into crash territory. 😞

    Yes, there is likely to be 100% understanding here. 🌾 💐 🐒
    Sending so many good wishes 🐝

  • @Dot thanks so much, it is heartening to hear your perspective!

  • Community Moderator

    Hi @Bee
    As @Dot said, 100% understanding here too. Pacing yourself and being kind to yourself are the best tools we have and unfortunately the hardest to put into practice.

  • Hi @Bee, great you reached out and shared this with us. Totally understand the journey this rotten, chronic, life syphoning illness has taken you on. Wishing you an upward swing towards a better state and soon ... rest up as best you can ...I once referred to this life with ME, as living on a tightrope with a balance pole. Sometimes the pole gets too heavy to hold and I lose balance, and crash to the ground. One response I was given, was why don't you use the swing instead ... it took me a while to understand all this analogy but the swing only moved by my effort and I could slow it down and ramp it up. Some days I could just dangle on it and sway gently. Crashes are weird, the onslaught just seems to appear out of nowhere sometimes and managing this illness is one of the hardest challenges I have ever faced. Just when you think you've got it all down pat, it rears it's ugly head again. I'm still bamboozled by it...Hope you feel better soon 💐 🌼 💐

  • @Bee sending warm hugs 💙💜💚

  • Thank you all, your support really buoyed me up!

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