Thinking Out Loud: Staring at the Future

It has taken me a long time to face writing this: recently an infection put me back in hospital. Opposite someone with hemiplegic migraines.

They were under a regional specialist centre with a proper specialist consultant and were under a treatment team with multiple therapies. They were exactly where I am supposed to want to be, they followed the advice of every attack getting admitted.

It was horrific. The man was a shell, the ward was noisy and chaotic, and they had no idea how to treat him, worse, they were random and haphazard with his pain treatment, most of the time he curled facemask on, earphones in pain trying to make it through the day to his release.

He saw no treatment, he was pushing his family away as he failed to cope with the emotional effects of attacks, and each admission robbed him of days and weeks of his life, you could see him imprisoned by his “disease” and crippled by doing exactly what he was told to do. Exactly what I am supposed to do.
We spoke, he could not believe that my attacks were both longer and more debilitating, that I had no support in place, and that I was not being admitted like he was each attack. His disbelief crashed head first into the fact that, while we shared symptoms and experience, I had carried on doing life in direct defiance of medical advice and was doing well, and he, doing what he had been told, further down the road than me, was now virtually crippled and imprisoned by his condition.

We spoke only that afternoon, he left. I doubt he will change, he is embedded in being a patient and invested in the model where he would be saved by modern medicine. I don’t believe in white knights on unicorn’s, as a child I learned very early that it doesn’t matter how loud or how long you cry, how much it hurts, how bad it gets no one is coming to save you.

Perhaps then, out of the damage of those abuse years has come a useful toolkit for journey ahead

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Dear Diary: Manchester is not by the Sea

The seaside, so often the facade of towns long closed down in heart and soul existing was not for me.

This was reflection and calm, the quiet, where people said a cheerful hello while you look out, a gas rig or two between your bench and Norway. A different place, a different sense of time.

A little calm so close to places so familiar and a life so very different to the one I have now.

My obligation fulfilled, respects duly paid, tears respectfully held back, and happy memories built upon the ashes of the past.

My dearest friends a comforting bridge, welcoming arms and helping hands, solace in the storm.

A place does not know, it does not remember, it meant no harm, it held no anger, it will not be bitter, nor will it be sad, it will shed no tears, knowing not the passing of our years. Those we bring, they are ours to leave or take away, memories are our own each day, and the stories ours to tell, like the place lest we too face away.

Dear Diary: The Night Is Dark And Full of Terrors

My attacks happen in my sleep.

I wake up, sometimes I am ok.

Sometimes I am not.

Sometimes I am paralysed

Sometimes a little.

Sometimes a lot.

Sometimes I can speak.

Sometimes I slur.

Sometimes I make no sense.

One time it didn’t hurt.

But I woke up.

And sound strummed agony for chords

I tried to smile but that didn’t work

Dear Diary: Monday 24th April 17: Sorry

Sorry no Monday Night Reflection Tonight

Just a Question

You ever hurt so much you wish you could take some time off from life just to get a rest

Sleep is supposed to be that rest I guess

Sorry No Reflection

Things will change the War of Art is not Over

Dear Diary: 20th February 2017

Don’t stroke the Mouse!

Mouse was rushed into hospital last Tuesday with a suspected stroke.

Nearly a week later all we can say for definite is that Thursday night his brain showed no sign of damage.

20 stroke like episodes later Mouse can barely move his left side or speak.

His NHS experience is far from positive but with every reason to be down my brave Mouse is still upbeat and planning new projects for when he finally comes home.

Mrs Mouse

Poetry Corner: The Captain and Jack

The Captain and Jack are gone

Cheaper, rougher whores are what it takes

The mixer shrinks and the ice it melts

The fog no longer dims the lights

 

The empty bottles of my dynasty,

Recycled like my stories of glory days

The bitter taste of regret

Diluted with bourbon or rum till I forget

 

My hand it shakes, my gait unsteady

No longer call it pain, useless cliché

Existence once called life

Time and tide fading away

 

Another day, and breath I steal

Each one I take I cannot return

No redemption for wages earned

Sleep no friend or welcome rest

 

 

Poetry Corner: Hurt

Its all too much today, the hurt, saying it’s okay

Take it away, take it away

I am tired, and I don’t know what to say

Take it away, take it away

Tired of pretending, it’s not okay

Take it away, take it away

Words, thoughts, nothing to say

Take it away, take it away

It is my all, everything, every day

Take it away, take it away

I don’t care how, please do it today

Take it away, just take it away.

Dear Diary 17th Feb 2017

I am hurting lots, more than usual. I would make a joke about a bus or train hitting me but not now. This isn’t funny today, my eyes sting because I want to sleep again, I am exhausted from the pain and the physiotherapy this morning.

I tell myself all this is worth it to be better and be healthy but times like this I am not convinced at all.

Just want to feel healthy again, I can hurt fine when I feel healthy.

Poetry Corner: Sore

I don’t remember before I was sore

A time when I didn’t hurt even just a little

It was only 15 years, so long ago

Genetic they say, nothing to do

You leave the doctor’s office, abyss

They give you medication, foggy blur

It is great for a while, then it hurts more

No one sees you, no one checks

Boxes ticked the numbers work

You don’t, you try, you fail, you lose

Spontaneity leaves takes happiness away

Planning and management slowly kill you

Strangle you, choke away the will to breathe

Little things they rock you to your core,

You cry, you cry some more, this is normal now

Adjustments are made, you forget what changed

Till you see what life really is and tears fall

Rain, Rain and Pain this is evermore

 

Dear Diary: 10th February 2017

Thank you body, thank you so much. I have been sick for months, I have gotten used to it, I had no real idea how good I felt before it happened.

So thank you so much for giving me 3 days of what I felt like before I got sick so now I am feeling crappy again I have a nice fresh memory fo what I should feel like. And the knowledge that feeling is not even 100% of how I felt way back in August 16