The Show Must Go On

I’m struggling today. I need to write how I feel because it helps me and maybe in helping myself I can help you too?

The anxiety isn’t as severe as it has been. It’s a manageable 6/10 but my numerous annoying ailments have decided to come out and play at the same time. My neck is sore. My tinnitus is driving me INSANE and I have the beginnings of yet another migraine.

I try to look at the positives. As in, I’m still alive. I wasn’t one of the 151,600 people in the world that died yesterday. I’m still here. Yet it’s like trying to drive on a flat tyre. Only in my case, a new tyre isn’t an option. The tyre represents my brain and I can’t just go out and buy a new brain. Unless Ebay have started selling brains?

A lot of the things I am experiencing today are not actually anxiety symptoms. I’m 47, therefore it’s natural for there to be wear and tear, especially as most of my jobs were heavy manual work. I’m only five foot one with a small frame so I’ve put a lot of strain on my body over the years. What can I say? You do what you have to do to put food on the table.

Due to my autism, these little annoyances become amplified and it has to be said that anxiety, while it doesn’t cause them, DOES make them feel worse. Stress hormones affect the bones and joints and I’ve always noticed that when I go through a phase of increased anxiety – my aliments are worse. Obviously, the answer is to address my anxiety and all these other things should start to improve. This doesn’t mean that I don’t feel pissed off though. I’ve forgotten what it is to feel ‘well’ because it’s been that long since I felt that way. Another thing that pisses me off is that I never appreciated good health when I had it. I used to hear older people say, ‘You don’t appreciate good health until it’s gone’. Too farking true, me dears.

I get it. I’m middle-aged, post-menopausal and slightly mad. How can I expect to feel like I did in my twenties or thirties? I’m lacking the necessary hormones for a start. My body is crumbling like Cheshire cheese. I’m getting older and let me tell you that it comes around TOO DAMN FAST. It seems like yesterday that I was snogging Nick Rhodes on my bedroom wall. Now I can see 50 waving at me (hopefully) and with that comes the realisation that I am well over half way through my life, if the three score years and ten is to be believed? Sobering thought, eh? Enough to make one want to pissed, only I can’t drink because I have ANXIETY.

Another way of looking at it and probably THE best way is not to mourn my youth but to thank my stars that I have a decent amount of life to look back on. Health wise, that is.

I lost my friend to cancer last year. She was one year older than me with so much more to give, especially to her eight year old son. When I think of what she went through it makes me guilty about whinging on about stuff. She’d have given anything for my problems to be hers instead of the cancer which was invading her body at an alarming rate. However, if you are reading this and thinking that her death should have been enough to make me ‘get a grip’, then my friend, you have NEVER experienced anxiety disorder because it is an illness. I’m not talking about the normal anxiety that every human being experiences, like the nervousness before a job interview or those few seconds after you hear a loud bang. I’m talking about the kind of anxiety that’s debilitating and destructive. It’s a very real illness. Just not one that can be seen. It’s effects, however, are visible to all. If you look close enough, you will see the fear in their eyes. You will see the tremor in their hands. You will notice their inability to be still. If you are sensitive enough, you may even smell their fear. These are the outer signs of a body that’s fucked up due to stress.

Thankfully, I know that recovery from mental illness is achievable for most of us and if it can’t be cured, it can definitely be managed to give quality of life. That thought acts as a light when my skies are dark. Another light comes in the form of my children. A funny text or a phone call from my eldest boys. Or today when I woke up to a dark inner sky. A sleepy voice said, “Cuddle me mama?” and some of those dark clouds lifted. Not enough to make all of this sodding crap go away but enough for me to have the energy and will to keep fighting it.

If you are struggling with anxiety, know this. You will win some battles and you will lose some but you CAN win the war. It really isn’t about how many times you fall down but about how many times you get up again. I know you are tired. I know your soul is weary but KEEP GETTING UP. Even when your legs feel so heavy you don’t think they can support you. THEY WILL. They are STRONGER than you think. YOU are stronger than you think. Rest if you need to but then you must get back up.

Life is a show and we must get on with it as best we can because this isn’t the rehearsal. There never was one in this show called ‘Life’. So, do that pile of ironing, even if it you do it sitting down and it takes you ALL DAY. Walk the dog. Hoover up. ON WITH THE SHOW!

The show must go on
I’ll face it with a grin
I’m never giving in
On with the show.

The Show Must Go On ~ Queen ~ Brian May

 

Alone in the Universe

I like to be alone.

I am completely comfortable in my own company, probably because it’s only when I’m alone that I can be myself. There’s no need to pretend to be normal. I can just be me.

When it comes to loneliness, people usually identify it with physically being on their own. Not me. I can be in a room jam-packed full of people and still feel incredibly lonely because I know I don’t belong. That’s my lonely.

I didn’t ask to be born. None of us do. We are here by choice or mistake and nine months later, out we pop, with no instructions on how to do life. We are at the mercy of those around us and all too often those people let us down.

Those people who had a duty of care to me at school let me down.

As a child I played alone until the age of five and then I had to attend school, or ‘shithole’ as I call it.

School was where I was expected to socialise and interact using skills which I didn’t possess or understand.

School was where I was bullied by children AND teachers.

School was where my sense of not belonging started.

It was clear that other children didn’t like me but I didn’t know why. I tried my best to be invisible but all that did was make me even MORE conspicuous. All I know is that I came to dislike myself too because of it. I couldn’t bunk off because I knew it was wrong. Nor was I able to express my struggles to my teachers or parents so I had no choice but to endure every hellish second of it until I got home.

Home was where I felt safe.

Home was where I was loved unconditionally.

Home was where I could lose myself in my obsessions.

Yet even with my closest family, I was unable to be me. I belonged, yes. My parents would have loved me regardless of anything but I didn’t know how to be myself in front of them. Most of the photographs from my formative years are of me looking away from the camera. That was me before life pressured me into being someone I wasn’t in order to try and fit in. Personas and masks became necessary in order for me to survive.

Something that is common to ALL humans is the need to belong and be accepted by others. I have a need to belong in some meaningful way just as much as anybody else and I want to leave this world having made a difference in some small way. Yet for most of my life, I have felt alien, like I don’t belong here. I breathe the same air. I am a human being in every respect of the word except that my brain is wired differently and people know you are different. They can sense it even if they can’t see it, like Will Smith in Men in Black, who can spot the aliens a mile off despite them wearing their ‘human suits’. That’s how it feels to be me sometimes – an alien wearing a human suit.

These past few months have been an eye-opener for me. The most important change is that for the first time in my life I no longer feel alone in this world. Why? Because there are 700,000 autistic people in the UK alone so add to the rest of the planets autistic population and that’s bloody shit-loads!

There is an autistic community where I don’t have to think, ‘Will this freak people out?’ before I ‘speak’ because people get it. Imagine. After ALL these years. I get to be my freaky self and other human beings say, ‘Yeah, I do that’.

AWESOME!!

I’m hoping that the therapy I am currently receiving will help to address the many years where I was treated badly simply for being me..

The girl who walked up to me one day and slapped me across my face for no reason at all? She was a coward. She was a big girl hitting a small girl – a bully who needed to be flanked by her cronies at all times. I blamed myself for so many years but I know now that I wasn’t responsible for what she did. Nor have I ever been responsible for the actions of others. The problem is with them, not me.

At some point I need to let the past go and move on in order to make the most of the time I have left. Four years ago I felt that nobody would ever understand how I feel. Then my son was diagnosed ASD and I knew that I was autistic too. On hearing my own official diagnosis, I got control back of my life. I know who I am now and why I am different and these next years of my life are going to be lived MY way. I may be in a minority but my life counts just as much as everybody else’s on this planet.

It always has.

I still like to be alone because that’s when I function at my best but liking to be alone and feeling alone in the world are very different things. That’s changed now. There are people in this world who get me. There are also people who don’t get me but are willing to understand and support me. So you see, I am not alone in the universe.

CC Image Via Pixabay

 

 

 

 

 

 

 

 

 

Summertime Blues

On the day I was born THIS was number one in the Top 40.

“Have a drink, have a drive”

Have a crash?

Side-burns and demijohn as a percussion instrument aside, it is a catchy tune, but I’d rather have hung on in there for a few more weeks and slithered out to Elvis Presley’s The Wonder of You. Then again, it could have been Tom Jones’ Daughter of Darkness, which some light say, would have been more apt.

It was summer. The days were long. The jeans were flared and summers seemed to go on FOREVER, as happens when you’re on child-time because child-time is different to real time. Everyone knows that, right?

The skies were bluer. The clouds puffier and the sun cracked the pavements EVERY SINGLE DAY!

Then there were family holidays..

I’m fairly sure we went away most years but I only remember a few holidays and judging by sulky chops on most of the photographs, i.e. me, I can only imagine that I was my usual shit self during each and every one of them. I can only apologise to my parents who no doubt sacrificed all year in order to give us a nice holiday. If they were alive today, my autism diagnosis would maybe go some way to explain my behaviour…

I tried hard to enjoy holidays but being in unfamiliar places (and sleeping in strange beds) sent my anxiety orbital. The beds often smelled funny and had, er, unidentifiable stains, and at that time my olfactory sensitivities were monumental. Also, I couldn’t verbalise my problems so this reflected in my behaviour. I was either ‘showing off’, ‘naughty’ or ‘moody’. Moody, I’ll hold my hand up to but I wasn’t ever intentionally naughty and I was too introverted to ‘show off’. What I was, was overwhelmed…

It also pissed me off how flies used to do that circles round the light fittings. Why do they do that? Daddy Long Legs were much bigger when I was a child. They. Were. HUGE. Spiders were the size of COWS and the world was against me in general. Despite all this, I was supposed to enjoy myself?

Sometimes we stayed in B & B’s. I HATED that. It was bad enough being in a strange place with my own family without having to cope with being around strange people too? Strange sociable people who really annoyed me with their constant, “Are you going to give me a smile?’

No. Eff off.

I didn’t say the F word, obvs, as Mum would have ended my life, but I certainly thought it. Why couldn’t they understand that I looked miserable because I FELT miserable?

Then there were the days out..

If I was lucky there would be a plan and I’d know where I was going (sort of) but more often than not Mum and Dad did the ‘spontaneous thing’ which cremated my brain. The result?

This.

Beach days were the worst.

What child doesn’t like the beach?

Me.

I like it now (when it’s empty) but not then. Never then..

I considered it a breach of my human rights to be made to take my clothes off on a beach in front of strangers.

“Who do you think’s looking at you?!”

Well, I don’t know, Mother, perverts perhaps?

To be fair, most children stripped off without a care in the world but I wasn’t like them was I? I was a self-aware misfit. I refused to remove so much as a sock without Mum standing in front of me with the biggest bath towel we had and even then I tried to keep my knickers on under my bikini bottoms. Yes, I was that girl.

One bikini in particular stands out in my memory. I was about 4 or 5 but it was way too big for me. In those days, you had to grow into stuff so nothing fitted. The top was more like a scarf and the bottoms were saggy-arsed which was dead amusing, apparently. The relief when I was upgraded to a swimsuit was IMMENSE!

The whole beach experience was an onslaught to the senses. The smells. The noise. The stimuli..

We had a little Calour Gas stove and I liked the smell of the gas. Possibly inhaled more than what was healthy for me, though. Then there was Ambre Solaire which Mum and Dad slavered over themselves. They’d sit and sizzle in their deck-chairs, havin’ a smoke and drinking countless cups of tea and be in some kind of heaven while me and my brother whinged like buggery – him because he was stuck with his moody little sister and me because I wanted to be sand free and back HOME with my Enid Blyton’s.

I feel guilty about it now because Mum and Dad worked hard to keep us fed, clothed and living in a nice clean home. They deserved a nice holiday but I always managed to spoil it for them, not that it was EVER deliberate.

When it comes to weather – THAT summer of 76 overrules all other summers in my entire memory.

In the Summer of 76, the average house cost £12,704. Wages were about £72 p/w (in those days they came home via a brown envelope) and a loaf of bread cost 19 pence. 19p!!! You could get a huge bag of sweets for like 5p. Imagine that, Kids?!

It was, like, SOOOOOOOO hot, the tarmac on the roads melted. Google it!

Chopper bikes, Space Hoppers, Quosh (warm), water shortages, IRA bombings, unemployment, flares, platform shoes, white dog poo, really great music, really shite music, melty roads and deviant DJs. The 70’s had the lot. I don’t remember the serious stuff because I was just a kid. What I do remember is how uncomfortable I felt in general. Summer is supposed to be fun but it’s not that simple for sensitive souls is it? Plus, I have to remove my cardi, which is like asking an NT to remove a kidney.

Dare I say, roll on Autumn?

“Summer will end soon enough, and childhood as well.”~ George R.R Martin ~ Game of Thrones

 

 

 

 

 

 

 

 

 

 

I Go to Extremes (OCD and Me)

I sat in the therapist’s office. Coat on. Hands in pockets.

‘So, what can I help you with?’

I’ve already clocked the box of tissues to the left of me and wonder how many boxes she goes through every week. Does she bulk-buy? Anyway, we go through the usual questions like, ‘On a level of one to ten, how has your anxiety affected you in the last two weeks and are you about to top yourself?’

No, I don’t want to top myself. I just need some help in lowering my anxiety levels from 10 to a 5, ta.

My eyes struggle to connect with hers. I’m way too anxious so I stare at the carpet, which is clean and has no pattern. Good. Because I’m in no mood to be coping with patterns and stains..

‘I don’t think we will have enough hours to address all my stuff.’

‘Well, just start with what’s easiest, OK?’

I blurt out, ‘I HAVE INTRUSIVE THOUGHTS’.

Pen poised, the therapist replied, ‘Really? In what way?’

I gave her the example of the hour before when I was partaking of a cup of coffee with OH in Costa. The sun was shining outside and there were only a few people in so I wasn’t overwhelmed. I felt relatively happy. Yep, I can do happy. Just as I acknowledged the happy feeling, a thought clouded my mind..

What if masked men burst in now and started to shoot?

My body reacted as if it was real, not that I’ve been in many hostage situations, thankfully.

Next thought was my son who was at school. Then my grown up boys. Adrenalin flooded my body and my undigested sausage bap was in danger of being barfed back up.

Then I remembered that it wasn’t real..

‘Calm down, nutcase, it’s just your mind being a bastard again. You KNOW this. Drink your coffee, there’s a good fruitcake.’

It was just a thought that had barged it’s way into my mind when I was feeling calm. One of millions of irrational thoughts over my 47 years. Even though I knew it wasn’t real, it threw me. Maybe I need to lay off on the police dramas?

I comforted myself with the thought, ‘What’s the likelihood of Costa being raided? What are they going to say, ‘Everybody on the floor and give me all your muffins?’ Then I researched it and there has actually been such an incident, only they were after money, not muffins. It was prior to opening and thankfully, nobody was hurt. I guess wherever there is money, there is motive..

See, I have this problem with safety. I can’t remember when it started but I’ve definitely done it for the majority of my life. It’s to do with fire, mostly. I have a thing about the house burning down so I have to check plugs and sockets.

Then I have to check them again.

I’ve noticed it’s worse when I’m stressed. The other day I literally couldn’t satisfy myself that I’d turned my straighteners off, despite me holding the disconnected plug in my hand. Then, I have to touch candle wicks to make sure they are cold and sometimes I stick them under the tap to be EXTRA sure. Once upon a time, I taped up all the knobs on my gas cooker in-case they turned themselves on while I was out because everybody knows, cookers can do that, right? I blame that one on surge in pregnancy hormones but I have been known to turn the electric cooker off too. You can gauge my anxiety on how many things I turn off but even on my best day – sockets, plugs, windows and doors are a given.

I refuse to go out and leave things charging up, like phones and Kindles. There’s, like, NO WAY I can do that. OH struggles to understand it. He says it knackers the batteries. I tell him, ‘Battery or insanity, mate, your choice’.

To get out of the house, I have a routine of going round and checking all doors, windows and sockets. If the chain of thought is broken with ONE of these things, I have to go and check them ALL again. Thankfully, I’m not incapacitated by it. I’ve often thought it would be easier to say sod it and stay in but that’s a road I know I don’t want to go down. I have my ritual. As long as I do this, I cope.

I don’t know why I do it. There isn’t a logical explanation for it. There has never been anything to justify it as far as I am aware of. No fires. No burglaries. I’m just a loon, innit?

With this is mind, I often wonder how I managed to be a school caretaker and NOT go totally gaga? I still have dreams about doing my ‘checks’. The alarm was the worst thing because I would convince myself I hadn’t set it so I would go back again and again. I’ve gone back to the school late at night because I’ve convinced myself I haven’t set it. Of course, I always had. It’s a wonder I wasn’t arrested for acting suspiciously, eh? On the positive side, having a security obsessed lunatic as a caretaker isn’t such a bad thing as in ten years of service, I was never called out to the alarm going off. No window or door was EVER left unlocked on my watch.

There seems to be some confusion regarding repetitive behaviours of autism and OCD..

Basically repetitive autistic behaviour, like stimming, is comforting. I stroke my little furry (NOT a euphemism) because it comforts me and picking scabs is on par to a decent orgasm in my book.

New word.

Scabasm.

OCD, however, is anxiety driven. The fear that something will go catastrophically wrong if I don’t touch my plugs ‘n’ shit. I am autistic but I obviously have OCD too, it’s just never been diagnosed because I’ve never sought help for it. Nor has anybody ever suggested I get help. Mostly, they are amused or frustrated by it. Maybe now is the time to address it? In for a penny, in for a pound, I say.

What’s the betting that my therapist will go off on the sick after she’s finished with me?

A slice of fruitcake says she does.

Image via Pixabay

 

 

 

 

How To Survive Being Married to an Aspie

‘In one word, what’s it like to be married to an Aspie?’

OH: ‘Eventful’.

I can’t argue with that..

Next, I ask him to describe me in as many words as he can..

OH: ‘No chance!’

‘Er, why?’

OH: ‘Er, because you’ll kill me?’.

I do what I consider to be my ‘girly’ laugh (it isn’t) and tell him not to be a silly sausage but, to be fair, he is danger of ending up under the patio depending on what he says about me..

OH’s Description of Me

Passionate, Intense, Accurate, On edge, Careful, Opinionated, Knowledgeable, Fixed, Driven, Family.

Fair dos.. nothing in this list warrants a swift whack on the back of the head with the garden spade. However, I know how psycho I can be so I thrust the paper at him again..

‘I’ll bury you under the patio IF you’re not 100% honest about my crappy bits.’

OH: ‘I’ll need a bigger piece of paper then’.

I know from his face that he isn’t being literal and that he is, in fact, taking the piss..

A few minutes later, he gives me the additional words..

OH’s Description of Me Continued..

Impatient, Relentless, Opinionated, Unmoving, Indecisiveness, Moody.

I can’t argue with any of these either, though he does say opinionated twice.

‘Oi, Div, you’ve written opinionated down twice!’

He pipes up, ‘Oh yeah, you’re repetitive as well’.

So there you have it.

Straight from the horses gob.

I will be honest here and say that, by rights, I should live ALONE somewhere remote (but with WiFi) because I’m not good at the social stuff. I also like my own space and struggle having to share it. In addition to this, I go through the entire mood spectrum in any given day. I can be happy (ish) but one word out of place will summon Grumpy, Psycho, Nutter, Stroppy, Flouncy, Cranky and Loon faster than you can sing Heigh-Ho.

OH literally doesn’t know where he is with me. I do his head in. Official. I think my indecisiveness is possibly the worst thing for him because when I am overwhelmed, I literally can’t make a decision between having coffee or tea.

‘Do you want tea or coffee?’

“STOPPPP, IT’S TOO HAAAAAARD” *has breakdown*

I’ve just been diagnosed but I’ve known I’m autistic for the last four years and OH married me with that knowledge. Despite my attempts at ‘normal’, he’s always known I’m a weird sod. YET HE DIDN’T RUN?

Being with an Aspie is hard work. My issues are severe at times and I’m a lot to handle at the best of times. I feel slightly guilty because when we met I was still very much trying to fit in (therefore not being me) but over the last five years it’s become a gradual process of being truer to myself. The menopause has played a part in that because I’m too sodding knackered to sustain that level of pretence anymore. I guess I’m lucky because I have an NT husband who admits he doesn’t understand me, yet still wants to be with me.

In the spirit of good will and all that, I’d like to pass on a few tips which may be helpful to NT partners both male and female.

Alone Time

Your Aspie may need a LOT of alone time. Let them bugger off to do their own thing or they’ll be, like, super cranky.

Obsessions

As much as their obsessions may bore the CRAP out of you, it’s a good idea to let them wax lyrical about them now and then. It’s worth it just to see their faces light up, no?

Patience

You’ll need SHIT LOADS.

Communication

Because I’m crap at verbal communication (and misunderstand things people say to me) we communicate via email when I need to get stuff off my chest. It’s a lot less stressful, believe me.

Learn about Aspergers

I cannot stress how important it is to understand your partner’s autism as best you can. Nobody is expecting you to know how they feel but it helps to understand why they do to certain things and what you can do to support them.

Your Needs

Tell your partner what you need from them. Don’t hint or expect them to read your mind. Write it down if you need to.

You Time

Make sure you do something for YOU. Something that takes you away from Planet Autism for a few hours every week. It’s important because living with someone who is autistic can be wonderful and exhausting in equal measure. Go whack some golf balls about or thrash something non-living. Whatever sorts your stress levels out, right?

Support

When in doubt, ask The National Autistic Society on 0808 800 4104.

Or there is The Aspergers Syndrome Foundation

Sensory Issues

Most Aspies have sensory issues. I am over-sensitive to almost everything but especially to smells. The overwhelming stench of B.O (not mine) at school, still haunts my nostrils 3o odd years later and I REFUSE to indulge in any kind of amorous activity in the morning because I can’t stand morning breath, mine included. It’s like tonguing a  haddock, no?

Slightly whiffy in NT world can be ‘OH MY GOD, WHAT IS THAT FARKING SMELL?! – whiffy in Asperger world. Similarly, overdoing the Paco Rabanne is a no-no. I never said this was gonna be easy, now did I?

Some Aspies can be hit and miss with personal hygiene. It can be a case of CBA or things like brushing teeth hurts due to sensitivity. Me? I can either turn myself prune by over-bathing or forget to bathe for a few days. When I eventually get a whiff of my own undercarriage, I frogmarch myself up to the bathroom and throw myself into the shower until I smell of coconuts.

It’s safe to say that life with an Aspie is never boring. Me? I think I need a NT partner to keep me from floating off into outer space. OH keeps me grounded, or as grounded as I can be.  Sometimes I wonder how he copes with an Aspie wife AND son but he manages it. His escapism is to ‘bust a cap’ in some drug lords arse on his online mafia game. It keeps him sane, innit?

I educate him about what it’s like to live on Planet Loon as best I can but I know he can never really understand what it’s like to be autistic, no more than I can ever really understand what it’s like to be ‘neurotypical’.

Maybe Aspies should wear a some kind of warning system which alerts their other halves when it’s safe to approach them and when they should run for the hills?

GREEN= You may approach me.

Means: I’m in a receptive mood so fill your boots.

AMBER= Approach with caution.

Means: I’m a bit cranky and it could go either way.

RED= DO NOT SPEAK TO ME. DO NOT TOUCH ME. DO NOT LOOK AT ME. DO NOT BREATHE IN MY DIRECTION!!! I’M KILLING YOU IN MY MIND ARRRGGGHHHHH

Means: I am in full-blown psycho/meltdown mode.  I may become mute or verbally vomit words that make no sense whatsoever. Go, save yourself.

Hope this helps. 🙂

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