it has taken me an hour to take my meds, brush teeth, use bathroom.. because my heart rate is far too high.  today was a brutal day for all symptoms but especially my neurological ones & my autonomic nervous system ones.  i crawled over here to shut off computer.  & for some reason, on fb, this spring photo with sarah-louise jordan’s words came up on my page.  & i broke down crying.  this is Myalgic Encephalomyelitis.  & sarah continues to be our wise young poet/sage of courage & inspiration.

“If you know what it is to hurt all over, as though you are a little seed with your protective husk completely removed.

If your pain is a fierce sun, burning down unflinchingly to bleach you to the bones, and there is no respite flowing like water to soothe your aching skin.

If you get so cold that you shake in summer and you laugh at yourself for wearing mountains of jumpers in July but still can’t be warm.

If you wake everyday for years to find yourself unmoving, with only the ceiling to keep you company and at night you wish for the roof to vanish so instead you could stare at the stars.

If your ears have thrown open their shutters and doors so every sound walks in carrying knives, to harm you and steal away your peace. Or your eyes have thrown open the curtains, far too wide, so everything you see is a sharp thing piercing your vision.

If your exhaustion is so towering that it has become a separate entity; a great ruined building leaning on you always.

If your words have deserted you, running away to the corners of your mind so you cannot catch them with any butterfly nets you have; and the ones that remain can’t be spoken, because your voice will not let you make it heard.

If you cannot be touched, or have anyone sit beside you to hold your hand.

If your hands themselves are rigid and broken, like strange crabs which lie sleeping on the ends of your arms.

If you must get through the present time, not in weeks or days, and not even in hours, but in seconds, and every one of them is a lesson in how to hold on.

If it is excruciating to think and you have learnt to clear your own mind and let the pain just take you, because you’re certain that that courage is going to save your life.

If you do not remember the feeling of the morning grass beneath your feet but you dream of it anyway, and you will not let go of the world you can no longer see.

If you wonder if that world will have forgotten you, and about how you will ever reach it again.

If it gets so dark, you aren’t even sure that hope exists anymore and you sometimes believe it might be easier to stop trying to find it.

If you think about ways to end this as a way to comfort yourself that you actually have a choice, even though you know that more than anything you want to go on.

If you understand how it is possible to be running when you are lying still, and how it is that someone can fight monumental battles when they are static.

If sleep is an unfaithful lover, who leaves you crying in the stillness because he has deserted you when you need him the most, and those tears themselves feel like acid as they slide their way down your face.

If it is impossible but here you still are.

If every breath is your triumph.

If you have discovered that no one else can save you, so you are trying to work out how you can save yourself.

If there are things you go through that I could never capture to write about, and more words to describe them than either of us could ever really find;

You need to remember it isn’t over.
You are still alive and there is more hope in that than I can tell you.
It can get better.
I love you.
Hold on.
(Oh you have to hold on)
Your bravery is brighter than all of the darkness.

We’re here.
We are with you.
We won’t let you go.

I promise.”


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