Friday, September 25, 2015

An Outing in the City!

I longed to see the local museum's display to mark the centenary of the WI, as I am a founder member of our village branch. A lot easier wished for than done! I haven't been able to visit the city on my own for three years, since I suddenly crashed with ME.
Dear DH came up with a solution.
I rested well the day before. The day of the Outing, I had a lie in, then rose, washed, dressed, then rested quietly on the bed. I came downstairs, ate breakfast, then rested quietly on the sofa for an hour or so. I sat quietly in the car - no music - as he drove me the fifteen miles to the city, dropping me at the door of the museum. We'd arranged that I would phone him if I needed him, otherwise we'd meet a few hundred yards up the road at a certain time.
He drove off to park, and there I was, on my own in the city! With my walking stick to aid my balance, I entered the museum. There were chairs in the room featuring the WI , which I knew would be on the ground floor. I sat, reading the displays, marvelling at some of the intricate needlework, fascinated by the history of the organisation. Did  you know that the WI campaigned for a ban on smoking in public as early as 1964? There were WI members on hand to chat, which was a treat. They showed me the lacemaking, they were working on, with decorated, beaded bobbins intricately moving in delicate dances across the cushions.
Eventually I tore myself away. I sat outside in the sunshine, people watching - a rare treat! I walked a few yards up the main street, popped into a shop for a sandwich and water, sitting on another bench to eat and drink, revelling in the freedom. I even ventured into a charity shop, spotting a vase identical to the one smashed last week in an attack of clumsiness. I found another seat for another rest, then phoned DH, who drove to collect me. I was very tired, but very happy.
I rested the next day, not feeling too bad; the following day was bad, the day after that was a bit iffy but a little better. Tomorrow I should be back to my 'normal.'
It was all worth it - I'd had an Outing!

My Outing would seem trivial to most people - a lazy day of doing hardly anything. That day I managed much more than usual, which is many times more than a lot of people with ME, who cannot even get out of bed.

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.

Thursday, July 30, 2015

Delete, Delete, Delete

I am now no longer a mother in law, so I have deleted all previous posts.
Instead of a private place to witter about family, this will now be a public place to rant about M.E. and other random things that might cause me to put digit to keyboard.