MEperspectives No. 1 – Rachel Miles

Rachel - use this.jpg The first in an occasional series being put on The ME Association website.

For four years I’ve been suffering with ME and for four years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep.

Now that it’s been part of me for so long, I realised how I could get the point across. I’ve not only been living with it, I’ve been battling with it.

The only thing I can think to compare to, is living with an abusive and unpredictable partner.

  • He tells me what I spend my day doing.
  • He makes me cancel on friends, and cancel appointments.
  • He decides whether I can read a book, or listen to music.
  • He gives me false hope; lets me think that I can achieve an unprecedented step forward, then pulls me back down to his level.
  • He tells me what I can eat and drink.
  • He’s indecisive, sometimes he lets me do something then changes his mind midway.
  • He plays tricks on me, and punishes me when I read his mood incorrectly.
  • He makes me feel sick in the same day that he let me be happy.
  • He makes me feel weak when inside I know I’m strong.
  • He controls how long I sleep, or if I’m allowed to sleep at all.
  • He makes me feel pain for no reason.
  • He makes me afraid of what will happen if I defy him.
  • He knows I dream of leaving him, and reminds me that I’m foolish for doing so.

But what I don’t let him know, is that I will one day be free of him, and that his power over me will slowly diminish.

ME is a hugely complicated illness, and like abusive people, each form has it’s own tricks and tortures. It lets you appear capable and healthy but inside you’re constantly physically and mentally exhausted.

Remember, next time you see a sufferer, that in energy terms, he or she may have just climbed a mountain. But all they’ve done is sat and smiled at you. That’s what ME does.

It fools the body into thinking that it’s just run a marathon, climbed a mountain, built a house, gone a week without sleep, but all it’s actually done is made lunch.

When a sufferer tells you he or she is a little tired, they sometimes mean is they are so exhausted they could weep.

It’s a trickster, that sleep won’t stop. Whether it’s got you in a weak or strong hold, it’s still powerful.

So please, when you see your sufferer friend, remember that they are fighting a constant battle with their oppressor. If you can’t imagine it yourself, don’t try. Just support them. They’ll need it.

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