What is ME? A special post for ME awareness week

I.

ME is feeling your body overpowered by an exhaustion so great that it is literally disabling.

It’s thinking I can push through this, then realising that your stubbornness has left you bedbound.

It’s knowing that the harder you struggle to try to escape, the stronger the grip it takes on you.

II.

ME is losing every aspect of your busy professional, social, romantic and sporting life, and seeing it reduced to nothing but a bed or a sofa and four small walls.

It’s hearing the dangerous helicopter whirr of blood in your ears from climbing the stairs.

It’s relying on your carer for every need, every day, until the words “please” and “thank you” lose all meaning.

It’s the pure physical boredom of having to lie in the same place hour after hour after day.

III.

ME is not being able to be in the same room as your beautiful niece and nephew because their energy and life and movement are just too much for you.

It’s explaining to a friend that they can’t visit, as it would knock you out, and knowing they think you must be “just depressed”.

It’s doing something that you managed OK yesterday, but today it puts you on your back for a week.

It’s gritting your teeth and saying “thank you” when someone tells you to stay positive, when they have no idea what they’re asking.

IV.

ME is that incredible rush when, for just an hour or two on a very rare day, your body feels normal and light and strong.

It’s the dull ache and disappointment when you crash all over again.

It’s weeks of painful progress undone by one day too much.

It’s going right back to the beginning, over and over again.

V.

ME is watching weeks become months become years, and not knowing what to do with your hopes and dreams, because if you let them go you may be broken, but if you cling on to them they may break you.

ME is tomorrow and tomorrow and tomorrow, creeping in this petty pace from day to day. It is, truly, a tale told by an idiot.

It’s secretly wishing you had cancer instead and would either die, or not die; right now, you don’t really mind which.

VI.

ME is losing your identity and realising that you’re still here‏.

It’s slowly, painstakingly building a new life for yourself.

It’s treasuring fresh air and blue skies.

It’s the strange relief found in connecting with other people who suffer like you.

It’s realising you were stronger than you ever knew.

ME is learning to appreciate all the terrible, precious and tiny beauty of the world.

It’s finding out how much some people love you and that they would do pretty much anything for you.

It’s the empathy for others in pain that you never knew you were lacking.

It’s feeling a wellspring of love, or kindness, or grace, whatever you want to call it, for all of the people you’ve ever known and the ones you haven’t too.

It is finally reaching that alchemy in the mind which can transform darkness into light, and find – in the stillness – the dancing.

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