Living with M.E

It's always there but you never see it.  There's nothing to show you, no way to make you see it.  Just another invisible illness.  It's always there, sometimes in mild insignificant ripples other times it sweeps you off your feet and pulls you under like a tsunami. Peaks and troughs.  It's all about the peaks and troughs.  It's always there.

Yet you feel lucky.  No matter how hard it is you function.  You have to.  You're existing not living but at least you're able.  You think of the others who are bed bound or wheelchair bound because it's such a personal affliction, so many different combinations of at least 60+ documented symptoms makes every case unique with a variance in severity.  Many of the cases are invisible.  You can't see it and you don't want  to.  I can't even pronounce myalgic encephalomyelitis.

The fatigue is relentless, whether you sleep for an hour or a day, it's there. There is no rejuvenation just varying degrees of tiredness. It's not a simple yawn, this is bone deep, a devouring carnivorous fatigue that utterly consumes your body and your mind. Your limbs are leaden and you have to physically think about moving them in order for them to actually move, you have to make yourself talk ...force yourself to concentrate.

Then there's the brain fog. Sometimes it's just a mist that blurs everything, thoughts merge and mingle, colliding in the middle.  You have to repeat to yourself over and over in your mind what it is you're about to say/do/think next or else it evaporates and your mind is absolutely blank.  Words disappear from your tongue at first and then from your mind as you're left with meanings yet no defining word, simple every day words.  You can feel their hard edges scraping at your consciousness yet you can't find them, the frustration is alarming.  You stop halfway through a sentence, utterly confused and lost as you have no idea what you were saying or what you were about to say.  You can see it's shadow, it's outline.  You know it's in your mind somewhere but you can't access it, you can't see the details.  It's like feeling something lodged to the roof of your mouth, you can feel it...nudge it with your tongue but you can't quite get to it.  It hasn't disappeared, it's merely hiding and that makes it all the worse because you know it's there.  You feel stupid.  You lose track of conversation, by the time you locate the word or sentence, the conversation has moved on and you're lost.  Was it seconds or minutes that you were stumbling around your mind for? Someone is waiting for an answer or opinion and you stare at them blankly as you have no idea what they asked. They think you're ignorant. 

Thoughts are racing and ricocheting round your mind bleeding into one senseless stream, that you can't separate, pause or decipher.  You turn on the tv, pick up a book, pick up a pen, it's no use you can't concentrate on anything, you've read the same sentence five times now and still have no idea what it said.  There's an underlying sense of frustration, bubbling inside.  Even the way you're sitting or laying isn't right.  You're so tired you feel as if your brain should be bleeding, yet you can't sleep.  It's late.  You've been clicking refresh on facebook for ages yet everyone's in bed. Your back aches, your legs ache, your arms ache. Sometimes you fall asleep straight away, it's bliss, until you wake again a few hours later still morbidly exhausted to the point of breaking yet the sleep doesn't return.  Other times the sleep is so light, it's hard to decide if you're actually asleep at all, or just so tired you're in stasis  in some in-between state and then the dreams start, they're exhausting.  It's like you've lived another day in another life and it's time to get up, again.
It's hard to move.  You can't make your limbs move.  Even your thoughts are weighted.  Drop me into the canal, I'd sink.  You're sinking into your own skin.  You can't explain this.  Motivation evacuated long ago.  You're stagnant. You lay in bed staring at the ceiling.  You've been sat on the sofa for hours, blank.

Your throat is hurting, again.  It's always hurting.  Your fuses are shortening, they've been cut yet are still live and sparking menacingly.  You're feeling volatile and unstable.  Exploding like fireworks.  You're too hot.  You're too cold.  Even your own skin wants tearing off. It itches.  It's sore. You're suddenly allergic to everything, sneezing until your brain shakes, your eyes are itching so badly you're looking for a spoon to gouge them out with.  If your nose runs any more you're going to smash it with your fist. Stop talking to me.  Turn down the music.  Turn down the television.  Why are you breathing so loud? For gods sake why is every little noise so irritating? you feel homicidal.  You want to smash things and scream at people. Every smell is making you nauseous.  Your head is banging with pain.  Turn the lights off, are you trying to blind me?  Thoughts are abstract and flashing.  You need a ciggie but two puffs make you feel poisoned and like you're about to die.  You'd drink but you're drunk after one.

It's like you have flu ... every month.  A general malaise.  A mish mash of not feeling quite right.  Colds last weeks on end.  Coughs last months.

Why are your lungs so empty?  You just can't seem to breath enough in.  You're hungry for air.

You make yourself go out yet sat on the bus and the nausea is overwhelming.  You're dizzy and disorientated.  It's so hot in here, why won't people open the damn windows? You're sweating and everyone stinks. The tinny sound of someones mp3 player is making you want to insert it up their rectum, wrapped in a cheese grater. Can't anyone else hear it??  Everything's blurry and it hurts to focus.

Today is a good day.  You're walking miles, all the shopping is done, you've paid the bills.  You're going here tomorrow.  You'll go there the next day.  Crikey, even your mind is relatively silent. Woo-hoo!!!!

Such a heavy price to pay for a few days, hell a week maybe, or normality.  Everything hurts.  Random flashing pains flare in your wrists.  Every muscle is bunched and knotted.  You're walking through syrup.  thoughts are slow and heavy, sticking like hurled stones to the sides of your mind.  You've been sat here for hours.  You sleep half the day away just to function.  The oven has been heating up for forty minutes, you'll put something in it soon, just another few minutes.  The pans and plates are so heavy, you've been staring in the cupboard and have no idea what you're looking for.  You forget to turn the hob off.  You didn't lock the door.  Shit you've burned the veg again. Peoples lips are moving but you can't hear what they're saying.  You're sinking.

But it's okay.  It's only Yuppie Flu.  You're bone idle and lazy.  There's nothing wrong with you.  Pull your socks up.  Stop being a hypochondriac.