Tuesday 27 November 2018

post written 23/06/2013

Right, time for part two of my epic post on physical sensitivity and all the things that are tangled up in that web. I’ll try and keep things… um… making sense and on track and stuff. {And by the way, I have no idea why this paragraph has gone all "reverse indent" on me, or how to fix it!}
Pain: 
I have fibromyalgia – which I sometimes call hypochondriac syndrome. Basically, FMS (short for Fibromyalgia Syndrome) is something, like Aspergers, that you are born with. It’s Chronic Pain Syndrome – something to do with connective fibres and soft tissues, basically. Kind of a form of arthritis I guess, but not quite. I have found out, since I started looking into Aspergers and the online communities around, that quite frequently females with Aspergers also have FMS. I would say it’s a co-morbid possibility but… I have really lapsed on my AS research of late. It was an obsession at the start, back when The Aspie Bestie was diagnosed and I discovered Aspergers and the possibility I might have it, but then it… {I haven’t the words to put here, which is an unusual thing for me, especially when I’m writing. I just sort of stopped being so fanatically into Aspergers, after reading Aspergirls by Rudy Simone the first time. Also in late March I met a girl who described herself as ‘mildly’ aspergers, which made me thing “If she’s mild, I probably won’t even be a speck on the spectrum” and I went off it more, although I still wanted a diagnosis to be sure.}

Anyway, FMS is all about pain. So I have a lot of things that I always just attributed to that. Every so often I would have what I called “a bad fibro day” and on those days even the hairs on my arms moving (in the breeze, or being moved by clothes or people touching them, I don’t have sentient arm hairs) would cause enough pain that I didn’t want to function. I would have to get up in the night and shave my legs, and compulsively moisturise my entire body, because my leg hairs were irritating, and I could feel my skin dehydrating and it hurt. Not every night, just sometimes. Take now, for example. I can feel the cold seeping into my bones, my hips/pelvis near the base of my spine, and into the sides of my breast area. The cold is sharp and insidious and biting. The pressure on this bone/joint area – just from the weight of me sitting down – makes it worse. It’s getting so that all I can think of is this pain. If I didn’t have to be at work, for the money, I wouldn’t be sitting at all. I actually have a lot of days where I can’t sit for long periods of time, due to the FMS, and most of the time at home is spent in bed. Hoppy called me lazy but if you were in pain most of the time, wouldn’t you want to be lying down a lot?
Now, knowing what I know, I’m more inclined to attribute those days to Aspie Hypersensitivity. Or some of them at least.
Hypersensitivity to external stimuli would be a very reasonable explanation for the pain or discomfort I feel most of the time. Lights and smells and sounds can all cause irritation that is translated into a headache that won’t go away. When my sense of touch {for lack of a better thing to call it} is being hypersensitive, that will be the cause of the days where clothes irritate me and I can feel each individual hair being ruffled or my dry skin feels too tight, too dry to the point of pain.



Sometimes, Being Different Really Pays Off

This may be a metaphor, with deeper meanings, but the base view of it is simple.

(I'm fascinated that I found this draft blog post, written in September 2014. I don't know where I was going with it, but I'm posting it now)

as an FYI - maybe I'll start blogging again

Why My Anxiety is just as valid as yours


I have anxiety attacks as well as stress attacks that make me lose my voice.
My fight-or-flight instinct is so strong that it nearly knocks me unconscious. Literally.
But my fight-or-flight instinct errs on the side of "fight”
My body prepares itself for every small potential disagreement as if it was an end of the earth argument.
My body and mind both tell me that this is a fight for my life, a fight for survival, that I might die if I don’t defend myself to the best of my ability.
And so, my body amps itself up for a fight.

In an anxiety attack, I will be (metaphorically) armed to the teeth and ready to defend myself to the death. My heart will be pounding so hard, blood rushing through my ears, that I can’t hear what I’m saying, let alone what you’re saying. I will be dizzy, I will have trouble standing upright, my arms will feel weightless or incredibly heavy. I will have to fold my arms or put my hands on my hips.
If I can’t hear what I’m saying, I might have to repeat myself – multiple times. Or I might start talking louder. Often, I don’t realise I’m doing this.
I become tongue tied, and the words in my head can’t make it out. The frustration for this causes me to curse and swear, because it’s like being trapped in your own head. I’m a genius but when I’m having an anxiety attach you wouldn’t know it.
If the anxiety attack is bad, and I start fidgeting my hands, this is because I actually feel like I need to rip my fingers off. Do you understand how it feels, to have your body tell you that to stop this anxiety attack and to make yourself be better understood you have to rip your own fingers off? If it’s mild I might want to rip my hair out, or bang my head against a wall. But if it’s bad, I want to rip my fingers off.

Do any of the things described sound like I’m physically attacking the other person? Because nowhere in the summary of events is any attack going to happen on anyone who isn’t me.
But people take yelling as intimidation – it’s because I’m effectively deaf.
But people take stance as a “power pose” – it’s because I’m propping myself up.

Why am I mentioning all this? Because I’m sick to death of people writing me off. You have anxiety attacks? So do I. Mine are bad, and they are real. They are no less valid because they’re different from yours.

Stop being a narcissist, stop using your power plays and your little threats. Stop assuming that you’re better than me because your anxiety attacks make you a victim while mine make me a weaponised attacker – because mine still make me a victim and you are still attacking me.

Monday 25 August 2014

My Learning Style

If you go through a list of learning styles, you’ll find the typical: Learn by asking, learn by listening,

learn by doing... They have their proper names I know, and people can be a blend. I probably fit into

those spectra; I think I've done a test before. But my real learning style does not really fit into a nice

compact box.

I call my learning style (and yes, I made this up less than 5 minutes before I started writing this)

“Learn by Systematic Chaos”

The oxymoron in the title is purposeful – chaos being the opposite of organisation so something that

you can’t have in a systematic order.

If I’m just listening – all attention focused on the act of listening to what the instructor is saying –

this is the worst possible thing for me in reality. If I’m actively trying to focus just on the [teacher/

tutor/lecturer/trainer] (insert whatever term applicable here) and not (fidgeting, writing, talking)

doing something unrelated to what’s being said, then rather than my body racing away from the

subject at hand with my mind free to learn and absorb; my mind is racing at a million miles an hour

and the sound of the air conditioner becomes too loud, I can feel the muscle fibres in my neck at

such an intensity that I can’t figure out how to position my head (and every angle feels wrong) and

all of a sudden I have to concentrate on remembering to breathe in and out.

Which of those two options sounds like the one that enables me to learn?

That up there is one scenario, one way that things can screw things up when I try to learn. There are

innumerable alternate scenarios and situations and, and, and...

Exactly.

Tuesday 19 August 2014

My Brain Has So Much It Wants To Write

And I do mean so so SO much.

It's been 10 months since I last blogged (I think) and I feel terrible because of that. It's probably been 8 or nine months since I ever really wrote at all, apart from for work (National Novel Writing Month... yup that would about be it)

I plan on writing more.

Or trying to at least.

Watch this space ...

Sunday 13 October 2013

why do i stay up late?

I just had a brilliant thought.

It went along the lines of this:

"I could chop all my fingers off."

Just, you know, a random suggestion that popped into my head as a solution... to what I  don't know.

So I ask again. Why do I stay up late?

6 hours left til I have to wake up but not only am I not sleepy, I plan on watching just one more episode of Grey's Anatomy before I try...


This is my prediction; me tomorrow. Somewhere, out of nowhere, there is going to be a wave and it's going to hit me face on and knock me off my feet.
A metaphorical, work related wave no doubt, not an actual wave like this one, but you get the picture.
{and I get the feeling it'll be a little worse than saying "lime" instead of "life", or writing "donut" instead of "doubt"...}

Friday 11 October 2013

You knew what I was like when you met me

You knew what I was like when you met me,
because I never hid who I was.
I have never really known who you are,
because I can't see below the surface as well as you,
because I never thought to think you would lie.
You gave people-pleaser answers,
you said everything a girl would want you to say.
You made me fall in love with you
but now I think it was all a game.

At six months, you didn't break my heart.
You shattered it.
And that hurt,
even though we "got back together",
that hurt lasted six months.
At least.

Since then you have been remaking me
changing me into who you want me to be.
Or trying to at least.
And if I look at the past with unbiased eyes,
you were doing it long before then.
The only difference is,
before you were doing it with your pretty people-pleasing lies,
and now you do it with hard cold eyes
and one hand holding tight to the leash my love has made around my neck.

You are the only person whose opinion matters,
you are the only person who I care if you think I look good or not.
Well I'm trying to change that
I tell myself,
I tell others,
that my opinion about my body is the only one that matters.
But when I say that I'm lying.

I've done things I said I would never do,
I thought I never could do,
all to please you.
Because no matter how much you've changed,
I always remember you as you were.

Always remember when you said you loved me.

Always wish that things hadn't changed.