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Sharron Stanley's avatar

I was diagnosed with ME/CFS 12 years ago and every day is a balancing act. "Boom or Bust" is our nemesis. BOOM is the effect of waking up feeling refreshed and energised and deciding to use that energy to do everything you've been putting off the last few days/weeks. Inevitably this is followed by the BUST, the crushing fatique and pain and exhaustion that takes over your body and mind. To counteract this I have had to learn to pace myself, to accept my limitations, to not abuse my 'good' days. I have learnt to accept that the world wont end if I dont vacuum the lounge, change the beds and clean the bathroom today but instead just choose one task or maybe even none. Planning my rest times is a must! If I know I'm going to have a 'full on' couple of days then I ensure I take naps in the days leading up to it. I find the most important thing is having a partner, family and friends that understand my illness and accept my limitations and understand that I might have to cancel lunch/social arrangements at short notice, not because I want to, but because have to. Sadly, so many of my 'good' friends stopped asking me to events and get togethers over the years X

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Ritu Bhathal's avatar

Oh, goodness, YES to all the above, Mandy!

I'm experiencing fatigue like I've never felt, before.

It's not helping that staff numbers are rapidly dropping, either, as more children and adults are testing positive.

Just trying to keep going is the aim.

But everything you suggest is what I would have in my list of 7, too.

Take care of you xxx

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