Dear Diary: 19th July 17, At The Head of the Valley

Back from a weekend in Wales.

For many, this is a simple thing, for my Mouse this was a weekend of overcoming fears. Fear of the unknown, a trip to a new and unfamiliar place via new roads, to the countryside. No urban landscape, no hospital, no backup plan, no safety net, the very darkest of unknowns.

However, it was great. I walked up hills, found peace and solitude, walked in the woods and listened to the river whisper.

I cooked in a little cabin kitchen and connected back to myself.

The urban expanse brings neither comfort nor security, it feeds my fears and imprisons my minds, plays tricks on me and convinces me that outside is the enemy. It is people I fear, people are the cruel, random, violent, betrayers of trust.

Nature has no favourites, it is not cruel, nor kind, it is, it does not change, it seasons have always been and will always be, it is not capricious of malevolent, it does not plot or betray, it has no skeletons, no secret past, nature has not lied, nature does not rewrite the past.

Mr Mouse keeps on Moving, keeps in doing, good one Mr Mouse!

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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.

Poetry Corner – The Real Me

Sometimes you forget
Sometimes you believe
Sometimes you don’t pretend
You are not who you are
Not make believe or fantasy

You believe the empty words
The things they say because they should
Because they should be kind
They are the encouraging sort

Some days I forget they expect me to fail
Some days I believe their belief is real
Some days I am not pretending, it’s not an act

But then I see what is real
And I carry on, no big deal