Maybe a Poem…

I was never
A poet.

Aside from:

School creations

And a few rhyming ditties,
Lost
When an old blog server
Closed
And an old computer
Ceased
To function.

Yet,
Since last year,
Since I discovered
I was autistic
And everything
Changed…

Sometimes
Brief
And structured
Words
Have become
The way
That thoughts
Emerge
From my mind.

They are sometimes
More accessible
Than
Crafted prose.
When the machinery
In my head
Is operating
A slow
Translation service…

From
Thoughts…
To
Words.

I don’t even know
If they are poems
Or not.

They are what they are.

And they say what they need
To say.

Apparently
It is World Poetry Day
Today.

And for the first time
I wrote something
That might,
Or might not,
Be a poem.

Very Very Tired

Imagine…

You ran a marathon yesterday
Or had a big meeting at work
Or took a difficult exam
Or moved house
Or finished a huge assignment
Or travelled a long long way
Or dealt with a family emergency
Or been to a large all night party

Or something else similar…

These are big things.

You might expect
To be
Very
Very
Tired.

And today you would need to rest.

In my autistic world
I know that if…

I went out of my flat yesterday
Or spoke to several people
Or had to sit still for a while
Or encountered harsh lighting
Or chatted for a few hours
Or had to wear particular clothes
Or sent a few e-mails
Or gone for lunch with friends

Or something else similar…

These would be big things.

I would expect
To be
Very
Very
Tired.

And today I would need to rest.

For years
People have asked me
“Why are you so tired?”
“What have you been doing?”

Until I knew I was autistic
I could only say
“I don’t know.”
“I don’t understand.”

I was just as baffled
As everyone else!

I know now
That
For me
As an autistic person

The cause of this
Utter
Debilitating
Exhaustion

Is simply
Existing.

Existing in a world
Where people communicate
Constantly
By talking.
Instinctive to many
But an effort for me.

Existing in a world
Where the input to my brain
From my senses
Is massive
And overloads my system
Until I can no longer cope.

Existing in a world
Where people sit on chairs
And care about appearances
And follow secret rules
That nobody told me.

It takes a lot of effort!

Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Absent

Aware
That I am a bit absent
At the moment.

Trying
To deal with so many things
At once.

Feeling
Quite unwell and stressed
And anxious.

Absorbing
So much big news about
So many things.

Using
So much energy constantly
Just to cope.

Needing
To remove as much pressure
As possible.

Struggling
To deal with the newness
Of so much.

Stimming
Though not as much as
I need to.

Dealing
With yet more forms
And reports.

Worrying
About some of the outcomes
Of these forms.

Attempting
To get out of the flat
Sometimes.

Resting
As much as I can because
I need to.

Finding
Life is rather exhausting
And challenging.

Wanting
To do so much more
But waiting.

Retreating
Back into the familiar
When possible.

Observing
That I’m out of my depth
Frequently.

Noticing
That my thoughts are often
Scrambled.

Intending
Still to write informative posts
About autism.

Taking
A little more time and space
Than previously.

Replenishing
Energy and thoughts and words
For a while.

Sensory Reaction

78-2016-12-29-22-16-01An event
Occurred.

I knew
In my brain
That I should react.

But how?

In the past
I would use
Knowledge
To do what
Was expected.

But that was the mask.

So I searched
For real emotion
And found
Blankness.

A few odd tears
Annoyingly blocked nose.

But…

My husband
Speaking normally
Sound levels rocketing.
Quieter quieter quieter,
Please.

Turned the TV down and down
Until it was silent.
Subtitles only.
The sounds of
Electronics
Screaming in my ears.

And the light
Becoming brighter and brighter
A million watts of bulb
Was how it seemed.

Light off.
Lamp off.
The pain of the light from the TV
Until that too extinguished.

I hid my face
Behind a blanket
To shield from the
Reflected light
Of my husband’s laptop.

I had a bath
In almost darkness
With a tiny camping lamp.

Then went to bed.

My head
Totally
Overloaded.

My reaction:
Extreme
Sensory
Sensitivity.

Cataclysm

77-2017-02-25-21-38-12It is now just over a week since I received my autism diagnosis. I had been hoping to “celebrate” that mini-anniversary today, but, as happens, life throws things in the way when you’re least expecting them, so I am having to devote a lot of brain space to dealing with something else currently. The week that has passed since my diagnosis is therefore, today, being “quietly noted” and little more.

If I am quiet here for a few days, then please forgive me. I might need a few days. My organization of my blog posts is also a bit lacking, and I need to do a bit of catching up with filing and sorting (when you find yourself using the search feature on your own blog to try to find out whether you’ve already posted that bit of writing you know you need to do a bit of sorting). Now that I have my diagnosis I’d like to make some sort of reference guide here (better than the Blog Guide) so people can follow the diagnostic procedure. I’m aware that new people have now started reading this blog and following it and might feel like they’re arriving part way through something. I’d really like to categorise and get the tags and so on a bit more useful, particularly for other autistic people and those who are keen to learn. I’ll try, but for now I need a little space. I’d also really like to write up last week’s assessment, but have not yet been able to find enough words and my head is still processing everything.

There is much to be done. I am trying to do what I can as well as I can as fast as I can, but my capabilities are currently not very good, so it might be slow progress. But I am very grateful for so much feedback and so on here, and for the people who have liked the facebook page and people I don’t even know who have said how much what I write resonates with them.

I wrote the words below a few days ago, with the title above. That title describes the state of my head right now, for several reasons. Things change. Autistic brains need lots of time to process change. In the meantime, they don’t necessarily work very well. I am doing my best. Please don’t ask any further – I’m not currently able to answer questions, and my capacity to produce words, even typed ones, has reduced again recently. I need a few days on the sofa, curled up under a blanket, rocking gently, staring at junk telly. My husband is, as usual, being magnificent, and caring for me brilliantly.

It still feels like a dream.
Like I will wake up at some point
And I will be in a tent in a field.

It will be summer 2016,
The point at which something was spotted
And mentioned, by several people.

After 45 years of a life that didn’t fit,
Full of difficulties and mental illness,
The truth started to reveal itself.

The more I learnt,
The more I discovered
That my “normal” was “different”.

I started to investigate my past
And found out
Just how many things tallied.

I started to adapt to my changed reality,
But needed a firm answer,
A piece of paper.

So I asked, and I filled in forms,
And I wrote down information.
120 pages of it!

I waited, and I endured an appointment
That nearly finished me.
And did not help.

But now I have the formal answer.
I know why my life has gone
So badly wrong so many times.

The process of discovery is over
And the rebuilding of my shattered life
Can now begin.

It feels surreal, like a dream.
It’s good. I know it’s good.
The relief at all now making sense.

But it will take time for everything
To feel “normal” again and for my head
To recover from the cataclysm.

Go Gently…

76-2017-02-24-13-40-18The message I receive
From those who have been here
Those who have discovered
Late in life
That they are autistic

Is

That this processing will take some time
And will not always be easy.

And I need to go gently.

I am listening to these people
And I am listening well
Because they have been here
And they know
And their neurology is the same
As mine.

I said from the start
Right back in late August 2016
When the autism hypothesis (now accepted)
Was formed…

That this will happen at my pace
In my way
According to my schedule.

And everything I hear
Confirms that.

“A couple of years”
Seems to be about the time
Taken
For full processing.

And,
Of course,
I need to recover from burnout.

I know I need
To stim
A LOT.
A very very lot.
The minute I started to listen properly
To my body
That became obvious.

What I am struggling with
Is how much
I cannot do.

How much
I need to rest.

How much time I need
To spend
Alone.

I have the biggest
FOMO
Ever.

I have pared back my life
But I need to cut even more.

And life continues.
Much of it
Is not optional
And must be dealt with
Appropriately.

My emotions are confused
And unidentifiable.

My functionality is also
Very very poor.

But at least the process
Is now started.

I will emerge.

Eventually.