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

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.

Dear Diary : Reflecting on Monday

I didn’t post a Monday Night Reflection.

I reflect for me, I post, well, I though they might be of use, or interest or something. Maybe one day.

This week it was just for me, I reflected in my space.

I am too sad, the world around is not a place I want to be, people are what they have always been, and that makes me want to be alone. I do not feel at home, welcome, wanted, or accepted, I am not valued, and my contribution is not required.

I have got the message. I will force it on no one. I am still here, I will leave a little piece of me for those who may stumble into the corner and find it. Perhaps they will feel less alone if I am like them or they like me.

Dear Diary: A little scared 25th May 17

You don’t tell people you are scared

A follow-up test is a good thing. It is just an EEG.

Actually its a 3 Day EEG, I have to go into Hospital, be observed and filmed. It means my 20 minute EEG wasn’t routine.

The unit is full. The original request was downgraded to 20minutes because not even a lead consultant can break that procedure rule and to that test immediately.

A 3 day EEG is not just another test. It means my brain did not work right.

It means the problems I am having might not fix, it means the answers stopped being answers and became questions.

It meant I couldn’t file that job application and money will stay tight and difficult.

It means I really don’t know if another attack is coming or not and all the confidence I was getting could be built on shifting sand.

It means those twinges, feelings, drunken slurs and memory losses might never go, the motor skill errors could be the new me.

I could always be this easily upset and cry, I could always not understand and be emotionally fragile, I could have lost who I was forever.

Sounds might always hurt.