Protected: Musings on Friendship

14 01 2018

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15 12 2017

Much to my surprise, i am signed off with depression. You think you’d know, right?

I’ve been on antidepressants for nearly 12 years and suffered on and off with it. Surely I of all people would recognise it? But i didn’t. At first i was just signed off with workplace stress. I WAS aware i was under a certain amount of stress, I was aware I was beginning to fly apart and needed a breather to get my head together but depression? Didn’t cross my mind.

Only once i had stopped work (and got over the stinking cold my immune system had been saving up), i realised that i was really pretty unwell. I felt hollow and empty and numb, like i was carrying a heavy weight around. At the same time i was panicky and anxious and short-tempered. It was like I felt no positive emotions but the negatives were twice as strong. I couldn’t sleep, i couldn’t laugh, all i wanted to do is hide in my bed and never come out. There was nothing i wanted to do and nothing to look forward to. Everything was just too much hassle.

I realised that actually, i had felt like this for most of the year. Initially due to study and exam pressure where i had had to give up everything in my life except study, work, eat and sleep. I thought once my exam was over and degree was secured, i’d feel better. But i didn’t. All i wanted to do was sleep. So i thought “Well, its taken its toll. 7 years of study, no wonder i am knackered” and i slept. But it didn’t improve. By that time (and we were busy with work and short of staff), i had long since stopped self analysing or even thinking about how i felt, i was focused on just putting one foot in front of another. Getting through the day, getting the kids to school, working hard, coming home, going to bed..repeat, repeat, repeat. Things were so hectic that i didn’t really wonder at the fact that all i had the energy and willpower to do was sleep or lie and read. I didn’t miss my photography, i didn’t miss my walks, i didn’t miss being outside. It was just the new normal.

A week after being initially signed off, i went back to the doctor with my list of symptoms and she said “Goodness, you’re nowhere near ready to go back are you?” And i am not ready, even now. Even though it has been two weeks since then. My medication has gone up a dose and initially i felt better. I have rested, i have exercised, my creativity mojo has come back (and OMG how could i have not missed it? It is the core of me). And then i woke up feeling very anxious and panicky one morning and spiralled down again. I tried to exercise. Now across from our house is some woodland bound on two sides by railway lines. I tried but all i could think of as i walked was “Would it hurt to be hit by that train?” Well yes it would, obviously, but it would be quick. I gave up on the photography there and decided to take a trip down to a seaside town near me. Running water is an essential part of my chill time and the beach always helps. Except all i could think was to wonder how long it would take were i to wade out. Would i get freaked out and regret it? Would i be a wuss and take three or four steps in before the chill drove me back and left me looking like an idiot with soggy jeans? Would i get beyond the point of no return and realise that I desperately wanted to live?

Needless to say, given that i am typing this now, i came home without trying any of this (partly because of the catastrophic effect it would have on my family, especially my sons, and partly because i can’t help feeling i’d have fucked it up) and spent a couple of days hibernating and sketching and reading and sleeping. I feel a lot better now. Not well, not by any means, but better. I am not due back at work until January and i hope like hell i do not have to go back to the doctors between now and then. I am keeping the number handy, just in case. I am still numb, still unemotional, but i feel a little less hollow. The weight I am carrying is a little less heavy.

Baby steps….




Let’s talk about Autism Awareness aka a rant about FB chain messages

22 10 2017

Right. Lets talk about Autism Awareness. (A wee bit sweary!)

These cryptic “post the colour of your underwear to raise awareness of Breast cancer. Don’t tell the boys!” posts do my nut in at the best of times. They raise ZERO awareness and little better than a virus or that letter from the head of the bank in Nigeria offering you millions. They’re stupid and they’re spammy and they do fuck all to raise awareness.

This latest one has really taken the biscuit though. You know the score, someone posts a cryptic status, you click like or comment and you get a PM going “AHA! you clicked like and got caught. Now you have post one of these statements…remember its for autism awareness!

I am so livid. I really don’t know where to start. Because this sort of cryptic shite is a taunt to those with autism. Every bloody day is a nightmare of coping with cryptic statements and conversations, of living on your nerves trying to decode the messages behind what people are saying, in real time and without any innate understanding of several important forms of communication,

I cannot look people in the eye. Ever. I kind of fake it and look at eyebrows or cheekbones but never eyes. Its far too intense, I feel like the other person can see me and knows me right down to the soles of my feet. Logically, i know this is not true but…

I cannot read body language.

I have no tools to decode what you are saying to me other than my knowledge of your personality and what you are actually, literally, saying to me. And people very rarely actually say what they mean.

Imagine growing up, knowing you were different, knowing you were missing important stuff in social interactions but not knowing what or why.

Imagine being totally cut off by people you thought were friends and having no idea why or what you’d done.

Imagine knowing you are the butt of some joke because you misunderstood something but have no idea what or where you went wrong.

Imagine offending someone you actually really like by saying something the wrong way or being a little too honest. Imagine hearing stuff come out of your mouth and realising it was the wrong thing to day but unable to stop it because your social processing (which is fully conscious rather than unconscious as for most) is running ragged trying to keep up.

And that is just the social stuff. There’s a heap of sensory stuff too.

Let me describe a party to you. You know you are going to have to work hard because its a social situation and well, all of the above. You’re wearing smart clothes and you’re uncomfortable because they’re weird and not your normal. They are tight and loose in all the wrong places and that label at the back is jabbing you like a knife.

You go in the door and heat and light hit you. Flashing lights that daze you, different colours coming at you, they feel like they hit you physically. Its so hot you think you might be sick.

And then there are the smells.Everyone’s perfume and aftershave, the smells of the shampoo they used, a million different food smells and alcohol. Every one of them hitting you physically. Jab. Jab. Jab.

The noise is tremendous. There’s music and its very loud. someone over the other side of the room is kicking his chair, someone’s toddler is having a paddy, you can hear EVERY conversation going on in the room yet you cannot decode the speech of the person next to you from the background noise.

Finally, the music cuts off and someone takes to the stage to say “Surprise! We have Kareoke and everyone has to take a turn.” so now you’re thrown by the surprise ( we do not do surprise, ever, because we work on hard-learned scripts for various situations and like to know in advance which we need to use) and the fact that you’re now in a social situation that you have no script for.

All of the above sensations come at you with equal, hard, force. I have no way of filtering them out. Its very physical and very tiring.

And this is me. I have Asperger’s and I don’t suffer from it as badly as others. I can fake it most of the time. My son is far more affected and his life more restricted as a result.

You want to raise awareness of autism? Share this. Donate to or even better, join in awareness raising campaigns they run. If you cant be arsed doing that, please just spend 5 minutes trying to put yourself in my shoes (ironically, something i am really terrible at. Its another ASD thing to be unable to imagine/envisage other persons pov).

But for fucks sake, do not share confusing and cryptic statements with about 2 seconds thought and pretend it is for my benefit. I can do without friends and contacts like that. And if you share posts from the Autism Speaks monsters who want us “normalised”, then i will delete you.

Protected: Debt

2 09 2017

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Protected: FML

10 03 2017

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Rare Disease Day 2017

1 03 2017

I have Ehlers Danlos type 3. It counts as a rare syndromes but is more one that is little heard of, badly managed and massively under diagnosed. It’s a collagen defect. Collagen is a protein that gives strength and stability to the ligaments that hold joints and bones together. Because I am lacking, every joint I have is hypermobile, they move so much further than they should which leads to pain and exhaustion. My joints often partially or wholly pop out. It affects every part of my body: problems such as IBS and heart problems called POTS are related; my skin is soft and stretchy and I bruise badly, blood vessels in my knuckles often just pop causing massive bruising. And I am lucky, type 3 is the mildest of this condition.
Sometimes I’m fine, sometimes I’m in so much pain I can barely breathe, sometimes I never know which day it’s going to be.
In diagnosing and managing this condition, the NHS is useless. It is a genetic condition that I’ve had since birth, the signs and symptoms have been there since birth, I got diagnosed at 41 after years of pain and exhaustion and a completely unnecessary and contraindicated operation on my elbow. I was diagnosed and sent on my way with a prescription for painkillers, splints that soon wore out, orthotics for my feet and an injunction to work on my posture and do Pilates. Working on your posture is impossible when you have no idea how you are supposed to stand! Fife didn’t want to know me because they don’t support my condition. Physios have given me exercises to actually stretch my tendons and ligaments, something that actually makes it worse!
The NHS treats conditions piecemeal. I got exercises for my arms and elbows when the problems were referred up from my hips and shoulders so of course they didn’t work. The answer to that? We don’t know how to help so here’s stronger painkillers. I have finally got my pain under some sort of control following consultation and a structured programme of exercises from The Fibro Guy, thanks Adam Foster!
And it’s not bad or malicious or incompetent, it’s just lack of knowledge and awareness. So I am writing this, incredibly lengthy, status to do just that. There are many more people out there, in pain and wondering what hell is wrong with them.






21 07 2016

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