Thinking Out Loud: I used to try really hard

It seems a very long time ago that I downloaded a blog planner and I was reading pages and pages on how to create content that would engage readers and grow an audience.

I would be carefully timetabling days so I could create content, especially my Monday Night Reflection, which was so very dear to me, that would be valuable and well thought out. Monday Night Reflections were particularly special because I was letting the blogosphere into my thoughts and sharing genuinely hoping that I was helping create something that would be of value to someone.

I knew that staying anonymous would limit way in which I could grow, but I tried my best to use strategies that would create an audience and some organic traction because I wanted engagement, my heartfelt wish was that someone wouldn’t hurt like I did, or would see that, hurting was okay, and that there was through it to get to.

Thing’s changed, and I thought perhaps I could document overcoming the attacks of what are most likely hemiplegic migraine, perhaps documenting survival in a different way, the challenge of having my creative ability taken, robbed even and learning, relearning, sometime learning daily to do something that had been a joy and such a big part of my day would be something I could share.

I found sharing impossible, there was nothing to share, it was blank, you just write rubbish and bin it, till its not rubbish and you feel comfortable sharing what you have. My failed attempts are not something I keep, like falling of a cycle, not something you really need to post for the world to see, failed is failed.

Thing is, you have stats, good old Word Press, and there they are not changing, there I was dedicated as an author to my craft planning and working to create, and there I was dead in the water, lost at sea, struggling to express myself at all.

I care, of course I do, every one who creates cares, I want people to engage, everyone with a blog is really saying look at me, I am no exception, what I mean to say is, I am here creating, I hope you like it, I am sorry if its haphazard, random, without focus or purpose, that’s my life right now, that’s is me, that is my blog and my creativity, I gave the structure thing a go, I couldn’t hack it, it didn’t fit, I am too old, and just a little bit too grumpy to wear things I don’t like.

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Poetry Corner: Migraine

Tears escape, torn up inside

Nothing right, scared to die

 

Too much everything becomes the pain I feel

The light, the sound they hurt so very much

Like a sledge hammer even the lightest touch

 

No such thing as silence, there is no rest

I hear in colour, the sheets like sandpaper at best

I want to sleep, the shadows terrify heart

My days and nights, my conscious drifting apart

 

The sea and darkness surround my art and thought

I would drift or drown, I have forgotten how to even fail

I have no idea about what it is that will prevail

It is dark, I’m lost, drifting to who knows where

Don’t destroy those who dare to be close and care

Dear Diary: You Can Never Hide

One of the great things about life is we can hide, work, family, hobbies, athletic endeavour combinations of those afford us wonderful opportunities to hide away from reality.

While we get away and pursue some noble and worthwhile goal to the applause of our peers, we can hide from facing something bigger, and more frightening than the challenge we tackle for the world to see.

But when the goal is achieved, the project is over, we instantly seek the next one to avoid the chasm and void of light where we know we face the truth we have been hiding from all the time, so we stay in the darkness calling light.

How long can we pull the trick of self-delusion, do we pull it at all?

Dear Diary: Proof of Something

If I am proof of anything it’s hard work doesn’t pay off, practice doesn’t make perfect and what goes around doesn’t come around.

In reality, you have to be working hard on the right things in the right way, it has to be perfect practice, life isn’t even remotely fair and the universe simply does not care at all.

Ultimately the world will neither miss me nor mourn my loss, I matter only so far as I decide that I do, beyond that, I don’t matter at all. I lack both relevance and significance. My existence continues in large part through luck and cowardice; mostly cowardice.

I live a life of pretend and make believe. I pretend what I do has significance, it matters, it counts, that somehow my life is worthy of something, that I as a person have value and worth. In my make believe world I am wise and knowledgeable and people look up to me and value what I say, they support me and believe I will succeed, that my endeavours valuable for my part I pretend along that my life has value with them.

I know, I am, sadly, and I wish I was not, completely aware, of the sham and masquerade.

I am playing along like it matters because it’s all I know to do, but I do know exactly what is true.

 

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

Monday Night Reflection: Back to Normal

That is a lie, of course, there is no back to normal. Not in a bad way, but I am not going back. I had decided to move on before any of this dropped on me, I had changed direction, and normal was a fluid state of moving forward towards something new and different.

Normal was not a set routine or structure, I was developing a new business venture, I was practicing my skills, I was growing myself and exploring directions and possibilities to see what and what not plausible or possible, what could be developed for money and what was best left as artistic endeavour for artistic endeavour’s sake. My business was being grown, not pushed, I was learning from past mistakes, and the pace was consciously, in fact very deliberately slow. Each step was small, and consolidated, assessed and embedded, decisions taken carefully, investments very circumspectly undertaken indeed. I was very keen to be in absolutely no rush to spend money, time, or unnecessary effort in a fruitless endeavour. I was keenly aware that every resource I had was very limited and that my project was one I wanted to grow properly, healthily and strong in that organic way of a business finding its rightful place.

None of that has really changed. I have, I have made no secret that my skills and abilities have been affected, and I am relearning things. The timetable has been set back, and along with that, my blog has had to change from what I really wanted to be doing at this point in time and is not really what I wanted to be sharing either. However, my business, my blog, and my personal life are still there, still being developed and I am still working on each of my goals.

I have had a setback, and in the real sense of that, I am working from behind where I was, however, I am still working slowly, and that, ultimately is all that matters.

So while, there may never be, a back to normal, there is a normal service, and that is coming back.

Dear Diary – After the Hiatus

From Monday 3pm to Friday 3pm stuck in Hospital doing my best not to die of boredom, with so much empty space.

The reality was I shut down. Just to be able to cope I had to not think, no internalise, not be in the moment, not fully present or engaged, and not full focused at all on the future, the past or the present to detach myself from reality and the enforced artificial rules of the situation and my disempowerment.

I survived, the week was an unpleasant dark shadow over my life, holding the time before it in a strange semi-suspense because I knew at some point, coming at short notice, everything had to park for a week. Sensibly, nothing unparkable could be started. Not quite on hold, but really going forward fully either.

Now I am out, I am of course liberated, I am free to do whatever it was that I was unable to do before. Which was?

That is the question, in March so much of what I was doing got ripped away, I hate the melodramatic sound of that. But a few months down the line, it feels more that way now because back then there was the promise that certain things were temporary, that the losses inflicted would be short lived.

Reality has dawned; and I am living with and adjusting to, the new landscape, the shifting sand of what abilities retained, and the extent of skills lost. Those projects are on hold while I have to go and re-learn skills that I need in life. From fine motor skills and co-ordination to emotional intelligence and resilience or understanding, it feels like everything has taken some sort of damage. It may not be impossible, but it is going to take some time.

Of course, I have sabotaged self. My remarkable apparent comeback at the end of May and my stubborn refusal to quit doing whatever I can has led people to think I am ok, after all, here I am living life. That is what you see.

How could they know, the physical pain, the emotional difficulty, the depression, the despair, the frustration of knowing you once could and now can’t; of course they have no idea. And, really, now words can tell the story of being trapped knowing its gone and you might not get that back, or the frustration of being expected to operate on a level you can no longer reach. There is no way to say, this life, the one I was breezing through with ease, no it exhausts me before midday, those things that I could cope with and a hundred more on top, I am crushed by half of them or less, and that finger tapping sounds like you are taking a sledgehammer to my head, but its ok.

The break is over, it is time to move on, step by small step, practice, fail, get up, fall over, get up, make a mess, clean up, carry on, and so on, and so on, every day, every day trying, just trying and hoping to work a little way back, a little way on the dream, and little bit better than yesterday.

Dear Diary : In the Spaces

Right now I am sat in a neurology unit. I was admitted yesterday, I arrived at 3pm, got to the actual bed for me at 9.45pm. This will typify my experience, lots of time and space ….

Time to think, or to be precise, more time to think, but now out of my space.

It will come as no surprise that I and Mr Mouse are introverts, and that with migraines as a constant issue quiet space and time are a big feature of our day. A hospital is loud, its busy, and of course it’s being a bay of four, plus staff, it is a permanent social environment. It not only drains me really quickly, there really is no chance to recharge properly and sleep is disturbed.

It is something to get through, tests, and repeating the story while really running on empty, but more, it is a week away from being able to make progress towards my goals, its a week on hold. A holiday is part of my plans, its in and it builds me up; hospital breaks me down.

This is no fun, this is not how I want to spend my time, I have almost no independence, I don’t have the comforts of my home, I don’t have my life, which goes on hold, and I slide gently, however slowly, away from my goals, while mentally this is a struggle.

However, the added dimension is external. People expect that is is a fix, like these tests will find a problem and I will get fixed, or that I am here to get fixed, they are wishing me a good outcome, when really, I have no idea what a good outcome is.

It is almost impossible to explain that, not only may the tests not find anything, even if the tests do find something, it is entirely possible that what they find may have no treatment and that there is no fixing this problem at all. The possible outcome is, while I may pick up a label or definition, that will be the sum total of what is achieved and that there will be no help, therapy, fix or even particular management strategy beyond learning to live with it.

And people say don’t be pessimistic, not realising that, this static model is one of the more optimistic outcomes, we haven’t even begun with the progressive degenerative models.