Tuesday, August 25, 2015

I hear the black dog growling

He is sniffing at my heels, winding round my legs, trying to trip me. He wants me to fall headlong into the deepest darkest pit, but I will not go. This dismal rain and the dark skies keep me indoors, out of the sunshine which makes him slink away, this creature of shadows. He scratches at the door with every squall of rain. He is in the drumming of the rain on the windows, the drip, drip from the gutters and the tossing of the trees in the wind.
The thunder cracks, the lightning flashes, the air clears, and I know I can break free.
I will not go into the pit.

Friday, August 7, 2015

Surviving the storm

The first moments of consciousness spark in my brain, searing across the peaceful, silent darkness of oblivion. No! I don't want to wake up! I try to sink back down, down into precious, unfeeling sleep. Relentlessly, my brain cascades itself awake, pulling me higher and higher, towards blinding internal illumination behind closed eyes. The pain swirls over and around and through me, like a tempest at sea. I think that if only I could break free, I could ride out that storm on the surface, rolling with it. However, I am chained; chained to the depths, my body a marker buoy in the maelstrom of pain. I must lie here, buffeted by overwhelming sensations that crash my waking thoughts. My skin is on fire, my joints crushed by their very existence. From experience, I trust my brain will dampen down the input, will mute the silent screams, but I also know that for those with the most severe ME, this is how they will feel all day and every day.
My husband hears me move; he appears with a glass of water to help me swallow my painkillers and assorted hopeful supplements - my first action of every day. He speaks to me, but I can only reply with 'mm'. He hasn't realised that today is starting so badly. He pulls open the curtains, heavily lined to keep out even the tiniest shafts of light that blaze at the edges of the blackout blind. As I turn my face away from the window, I know that I am lucky - my eyes will adjust to the light of day, but I think of those who must stay in darkness. I can feel him looking at me; assessing. He curls up behind me, laying a hand on the back of my neck - for me, a soothing gesture I can use to focus my brain and help to dissipate the pain, while knowing that for many that gentle touch would bring agony.
I lie there, breathing.
The storm abates; I will survive today.

Wednesday, August 5, 2015

My elephant is not a unicorn.

My elephant is not a unicorn.

I have this elephant that has chained itself to me. I did not choose him, or welcome him to my life; I woke up one morning and found him there, crushing my mind and body into a silent scream. He saps all my energy; trumpets in my head every waking minute, so I cannot concentrate or think. He is so heavy that I cannot lift or carry anything else. I have to drag him everywhere behind me, so can hardly move. He keeps me awake at night, yet tires me in the daytime. My mind and body ache constantly from his ceaseless demands. If I force myself to do anything, his revenge is merciless; he imprisons me, motionless, for days, crushed under his unforgiving weight.

Most other people can't see him, so they tell me he is a unicorn. He's just a unicorn, they say - and unicorns don't exist; ignore him, they say, and he'll go away. They say I'm too lazy to get rid of him, that I enjoy his company.  They made me try to run away from him - a little harder, a little further every day. He caught me, dragged me back, and kept me prisoner for many weeks. 

A few people say he's a black dog I brought home one day, but I know my beast - and he certainly is a totally different creature, although he does try to let the black dog in, sometimes - but he's not coming into my house. Even if he did, black dogs can be dealt with - people know they exist.

The only people who can see my elephant are those also attached to one. They can just hear him in my stumbling speech, see him as a sag in my shoulders, the pain and lack of comprehension in my eyes, and the false brightness of my smile. They know the frustration of evading those who cry 'Unicorn!' on top of dealing with the elephant itself.

My elephant is not a unicorn.
My elephant is M.E.

Sunday, August 2, 2015

Grit your teeth and smile

I have spent many years being diagnosed with depression, rather than with what actually ails me.
I was told my stomach problems were because I was depressed. My suggestion of a dietary intolerance was dismissed, until I was sent to a specialist, as things had got really bad. Guess what! He diagnosed me with milk intolerance. Turns out that milk gives me an upset stomach, aching joints, sinus problems, migraines and - yes - it makes me depressed.
Roll on the years. I fall ill with mystery aches, brainfog, swollen glands, exhaustion, etc etc; a few years down the line; a diagnosis of ME.
However, it is an invisible illness.
I have to smile, be bright, cheerful and positive, otherwise I am being 'miserable'.
Sometimes, just sometimes, I want to let go.
I want to rant and howl and cry for the pain I am in, and the life I cannot live.
But I must grit my teeth, and smile.