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 14th April 2017

I have nothing to say

My voice has gone literally and metaphorically

I am scared to sleep tonight

Scared to say I had a small attack

My mouth is numb and my head is throbbing

I know the signs now, even when they are mild

Staying awake doesn’t change a thing

Sleeping gets it over with

But still I am scared

What if this time is the time I don’t make it back?

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

Dear Diary: 1st March 2017

My head hurts, the pain from my obstructed bile duct that Doctor’s could not find is back. I had this cool symptom triad of pain approximately over my pancreas, radiating back to my kidney and a headache. That triad never went completely but things are building.

This is about life boxes, the weekend has left me behind with creativity and my business project. I feel stupid because my Anonymouse blog can’t promote my little venture and my venture can’t direct to my blog without broadcasting to my ex and the problems and issues that would create that I cannot handle. But I want people to see the blog and find it useful to them and I want to share what I create.

Feel like I don’t promote myself out of fear of backlash and there is this great big set of shadows. On the one hand, I have that fear of vicious reprisals and the fact that those near me do have something to lose and she not only knows how but also would because she did once already try and destroy anyone seen as on my team. On another, I have a health issue that has already taken away my hard work and opportunities that I worked for.

Feel hemmed in by threats. While at the same time as my creative project boxes are stalling, my life – life has a car dying, another car breaking, a budget that had a 13k hole in it, 6k owed I never knew about and a £300 a month outgoing that wasn’t in the original budgeting, so my income is super low just as the financial shit hits the fan, and because of my health, which is really crappy, I can’t just take a crappy job to bring in money because I could wake up or even take sick. I have actually collapsed a few times in the last 6 months, probably should have let myself be taken to hospital but I refused.

That is all becoming more than I can cope with in a big way. At the same time, there is all that opportunity which feels like it is slipping away because I just cannot get to take advantage of it through being ill, through dealing with minor life issues like I need to. It’s all being wasted for me as well as by me being so fearful to step out. I feel like success would bring a shitstorm of reprisals, it’s all brakes on me that I feel and they are hurting.