#TakeTheMaskOff: What is Burnout? How is it Connected to Masking?

We all mask.

Masking is a human thing, not just an autistic thing.

We hide the parts of us that we don’t like or don’t want people to see for fear of rejection or ridicule.

When I mask I play a role and that means not being myself.

Onlookers can’t see beyond our mask. They see something that isn’t real.

Take Robin Williams: Twinkling eyes and a great smile. He was a hilariously funny man. And he killed himself.

The man was in hell, but nobody saw it. We saw what Robin wanted us to see – his mask.

Masking is taking yourself, your fears and your demons and suppressing them so that you can present the world with a version of you that it will accept. You do it to fit in. You do it to survive. This takes a great deal of mental energy and it comes as no surprise to me that most autistic people develop mental illnesses. With me, it’s primarily anxiety.

Anxiety has shadowed me all my life. I’ve mostly functioned with it, but there have been episodes of depression and anxiety which have been severe enough to require medication and time off work. Somehow, I made it to 41. Then my mother unexpectedly died. The problem was that I’d been trying to run my house on a car battery (theoretically speaking) for so long that there was quite simply no energy to deal with such a shock and when it comes to trauma – losing a parent (especially a mother) is at number 5 on the Holmes and Rahe stress scale scoring 65/100% – 100% being the death of a spouse.

That was the start of my ill-health and five years later I burned out completely.

Mental breakdown. Nervous breakdown. Burnout.

Call it what you want, it all amounts to the same thing. Not limit reached, but limit breached.

I’m convinced that a life of masking led me to burnout at the age of 46 and during that time I didn’t have the energy to function, let alone mask.

The mask was very much off.

How best to describe my mental breakdown?

  • My own personal hell.
  • I lived by the minute, not the day and every one of those agonising minutes felt like an hour.
  • I couldn’t hold onto my thoughts.
  • I couldn’t complete the simplest of tasks.
  • I couldn’t sleep.
  • I was in constant pain.
  • I was having numerous panic attacks a day.
  • I couldn’t eat.
  • I lost weight and muscle mass.
  • I couldn’t watch TV, read a book or listen to my beloved music.
  • I was constantly retching.
  • I wanted to be put into a mental institution – just so they could make all of it stop.
  • I thought I was dying, going crazy or both.

In-between bouts of anxiety, there were lulls where depression would take over and I’d cry. It was the kind of crying where the tears just happen without any effort at all. The depth of sadness was such that I willed the anxiety to kick back in.

Anxiety was the lesser evil because it made me feel alive. When the depression took over, everything slowed down. It was like my body and mind was giving up on me. Was I dying?

With every second of every day – I lost another piece of myself.

There was no dignity in my fight. It was ugly and it was messy and I thought I would never find my way back.

Make no mistake – mental illness is a battle.

You have to remember that the chemicals in the brain are imbalanced. It’s an illness.

Nobody chooses to be mentally ill.

Masking brought me to the brink of my sanity. That’s how it affected my mental health.

Since that time, there is a fragility about me that wasn’t there before. I developed a chronic condition (Fibromyalgia) which affects my entire body. Now, as well as being in mental pain, I am always in physical pain. This is what masking can do!

I wouldn’t be in this state if I’d been able to be myself – if society had accepted me as I am. But it didn’t accept me. It bullied and ostracised me and exploited my vulnerability which forced me to constantly wear the mask that’s damaged me beyond repair.

It’s a lesson I’ve learned – albeit too late to save my health.

“The most important kind of freedom is to be what you really are. You trade in your reality for a role. You trade in your sense for an act. You give up your ability to feel, and in exchange, put on a mask. There can’t be any large-scale revolution until there’s a personal revolution, on an individual level. It’s got to happen inside first.” ~ Jim Morrison

Be part of the revolution.

#TakeOffTheMask

 

 

 

#TakeOffTheMask: How Does Masking Affect Mental Health?

According to the Australian Actors’ Wellbeing Study taken in 2015, performers are twice as likely than the general public to experience depression. Many report performance anxiety and high levels of stress due to work-related pressures.

What’s this got to do with masking?

Autistic people who mask are performers.

We play a role so that society will accept us and we can fit in.

The actor: Will I be convincing as Othello?

The autist: Will I convince people I’m the same as they are?

Either way, it’s a performance.

The problem with performing is that we’re not being ourselves. Whether it’s strutting about on stage playing Hamlet or standing on the school yard with the other parents – performing takes a great deal of mental effort.

Tonight Matthew, I’m going to be…

Some of us mask so much that we lose ourselves. The boundaries between what’s real and what isn’t become blurred. Then one day we look at ourselves in the mirror and are shocked to find that we no longer recognise what’s being reflected back at us. The person that we used to know is buried under the mound of characters that we’ve created over our lifetime.

When I mask, I rely on what I’ve learned.

I have to recall lines or appropriate responses.

I have to judge when to speak and when to stay silent and for how long.

I have to remind myself to look at the person from time to time.

I have to try to work out facial expressions, which is hard when you’re crap at non-verbal communication.

I have prompt myself constantly.

I have to try and deal with the emotional fallout when I get it wrong.

I have to do all of this while trying to cope with my sensory issues, like background noise or smells or lights.

It’s mentally exhausting.

Imagine having to do this EVERY time you socialize, even with a neighbour or someone in the street – every single day.

Imagine having to perform every time you walk out of your front door? Or, even in your own home?

They say that the world is a stage and from the perspective of a lot of autists – it’s true – except that YOU are the actor, the director, the producer, make-up artist, wardrobe stylist and, well, you get my drift?

I have always been scared of the world and most of the people in it – so I’ve worn a mask and tried to fit in. To protect myself. To survive. Except that a lifetime of pretending has left me mentally (and physically) exhausted. All these years I have performed in order to fit in, but the truth is that I no longer want to.

I no longer want the anxiety that goes with trying to fit in.

I no longer want to feel the fear of rejection.

All these years I’ve pretended to be someone I’m not and in doing that I have failed to honour the unique (and worthy) person that I am – that all autists are.

Reggie removed his mask to discover that he’d been awesome all along!

 

 

 

 

 

 

 

 

IBS: The Big Squeeze

If you are unlucky enough to have IBS, (irritable bowel syndrome), you have my sympathy. It’s shit. Literally

What’s IBS?

IBS is a condition that affects the digestive system causing stomach cramps, diaria diahorea diarr the shits, bloating and constipation.

It’s common.

It comes and goes.

It’s usually life-long.

There’s no cure for IBS but it can be managed with medication, relaxation therapies, changes to diet and carrying spare bog roll.

With IBS some people poo for Britain. Others can’t poo. Some unfortunate sods alternate between the two.

Me? I have constipation dominant IBS, but it hasn’t always been the case. Do you want to know more? Or have you hit the X tab yet?

My IBS started when I was under a considerable amount of stress. My, (then), husband was having a nervous breakdown and his timing was especially crap because I was about to give birth to our second child. My digestive system took a direct hit and subsequently threw in the towel. I was 21.

At the start of my IBS I wasn’t constipated. On the contrary. The slightest hint of adrenalin and I was releasing the ‘sewer snake’. Bizarrely I needed a poo every time I went up into the loft, I have no idea why, it’s not as if our loft was an exciting place, it was cramped and full of stuff we couldn’t be arsed to take to the tip. Even so, within minutes of climbing up there my colon would start doing the can-can and I’d be taking the loft-ladders two steps at a time trying to get down to the bathroom.

By then, the time-scale between ‘stirrings’ and potentially soiling myself had reduced alarmingly. You get my drift?

Twenty, (plus), years on things have changed. I’m invariably constipated. Bummer, right? Alongside this is right-sided pain and bloating. These days I only have to side-glance a pea and I look 6 months pregnant!

Oh, and I fart a lot.

Ladies do not fart!

One, I’m no lady.

Two, everybody farts.

Even kittens!

So first, let’s define constipation.

  • infrequent poos
  • difficulty or straining when you poo
  • feeling of being unable to completely empty during a bowel movement, or the sensation of wanting to go but not being able to.
  • you fart for Britain.

I don’t know about anybody else, but my pain goes away a bit when I finally do manage to ‘download some brownware’.

Living With Constipation and IBS

Diet

I find it helpful to keep a food diary to see which foods give me gyp. Dairy and wheat are the usual suspects, but a lot of other foods can aggravate IBS symptoms.

Eating your food as close as it is to its natural state will benefit you and your bottom. As a general rule, if something has an ingredient list a mile long – it’s best to avoid. Also, overdoing the fruit and veg could make things worse. Remember me and peas?

Big one this: Never skip meals!

Also, stop eating when you are full.

Look, if you can’t breathe, there’s no room for pudding. You’ve had to undo your stretch-fit jeans as it is!

Laxatives

Sometimes it’s necessary to take laxatives. Occasionally I have to give myself a rid-out with prescription laxatives. This is only when the other methods have failed. Or I’ve been on the codeine. Eight sachets of this stuff and my colon surrenders itself completely. It’s what the GP calls a ‘bowel reset.’ This is a last resort and it’s under the supervision of my GP.

*It’s NOT a good idea to rely on laxatives indefinitely!*

Water

Dehydration causes constipation, so fill up on the H20!

Exercise

Moving about helps to keep everything flowing within the digestive system. There is a reason that most bed-bound people become constipated. Walk. Swim. Breakdance. Whatever. Just move.

Relaxation

If you have IBS, chances are you are stressed-to-shit, (if only ha ha), so it makes sense to address your stress-levels and do as much relaxation as possible.

Straining

Just typing this sub-title brings tears to my eyes!

One must always try and resist the urge to strain out a bowel movement!

We’ve all been there. Stranded on the lav with Mr Turtle’s head and his front legs hanging out of our lower orifice. It’s like the colon REALLY wants to go for it, then half way through says, ‘ You know what? Sod it. I’m bored now. Laters, yeah?’

What to do? We can’t sit there indefinitely with poo hanging out of our arses, can we?

Do we reach round and help Mr Turtle out? *boaks* Or do we take a deep breath in – grab onto the sides of the toilet seat – and bloomin well go for it?

Then there’s the pain..

Once I had to peer into the pan to make sure I wasn’t passing glass shards because that’s what it f**king well felt like!

It felt like labour. I was having to do the hoo-hoo-hoo breathing and everything.

I was cold and sweaty.

This was hardcore defecating and it comes to no surprise to me to learn that a lot of people die on the toilet. Granted most of those are elderly or have heart conditions. It’s a spike in blood pressure that finishes them off, apparently.

In the end, I birthed what felt like an 30lb baby through my bum-hole. In reality, it was a turd the size of a raisin. I was both awed and horrified at how something SO small could cause me SO much pain. It was a lot like giving birth, actually – only minus the drugs.

A straining session for me ensures a visit from Emma Roids (piles) where it hurts to sit down. Standing up’s isn’t much better. Plus, they itch like buggery!

Let me tell you now. There is NO dignity, whatsoever, in having to ram a three-inch suppository into one’s quivering bum-hole. Or anybody elses. Or in buying tubes of Anusol in the local supermarket. It’s hardly discreet is it? The clue’s in the name. ANUSol.

At this point, you’re either horrified (bordering on projectile vomiting) or nodding with profuse empathy. If it’s the latter, I pity you.

My last remaining tips are as follows..

Toilet Roll

Don’t buy cheap 2 ply. Your botty deserves better, no? Plus, yer fingers go through the cheap crap – which can be icky. Pay extra and pamper the poop-shute!

NOTE: Definitely, no IZAL. Using Izal is akin to wiping one’s arse with a crisp packet!

Blood in Poo

If you have piles through straining you may or may not experience blood when you wipe. Or you might see it in the pan. If this happens to you and it’s your first time, postpone the heart-failure. It’s most likely due to piles. Get it checked out, just to make sure.

Purge, When You Get The Urge

For this, I penned a lil poem.

Every time you need a poo.

Go t’ bathroom and sit on t’loo.

Look at your phone or read a book.*

Don’t delay cus it’ll hurt like fuck hell.

Changes In What’s Normal For You

If your symptoms change see your GP. 99.9% of the time it’s nothing to worry about, but it’s always better to be safe than sorry.

Finally, talking about what’s going on with your bowels is only as embarrassing as you want to make it. It’s a normal (and essential) bodily function. Embarrassment costs lives. Opening up (shameless pun) can mean the difference between life and death. Nuff said?

  • Don’t sit on the loo for hours reading books or messing with youir phone. You’ll make yer piles worse!

Dear Anxiety..

Dear Anxiety,

Thanks for keeping me alive for 47 and 3/4 years. You’ve prevented me from doing idiotic things that could bring about my premature demise: such as overtaking on blind bends or not looking before I cross the road.

Haven’t always been so helpful though, have you?

Remember when I was a child and I worried about monsters coming to kill me in my sleep? My little heart would race and I’d feel sick. Sometimes I would be sick. Obviously, this thrilled my parents no end as cleaning vomit-spattered carpet is just what you want after a bottle (or two) of Blue Nun and a homemade curry on a Saturday night. But, fair dos, you’ve saved me from harm on numerous occasions..

Like when my dad failed to pick up from primary school and I decided to walk home myself. Only, I wasn’t allowed to walk home alone because there were two major roads to cross. One by the school and one outside my house. The latter being exceptionally busy. Lorries ploughed into garden walls (ours for one) and animals frequently got run over. That kind of busy. Unfortunately, one of the teachers saw fit to usher me out of the safety of the playground so I had no choice but to start walking towards home. I managed to cross the first road because there was a zebra crossing which I’d crossed a thousand times and I knew that cars would stop for me. Then I got to the busy road and I stood on the pavement for what seemed like hours, worrying over what to do. I could see into our living room window and hoped that my mum would happen to see me, but no such luck.

‘Go on! Just run across!

What if I get hit?

‘You’ve never crossed this road on your own before. There is no safe crossing here, you must ask for help’.

I went into the local shop and blurted out that I needed help crossing the road to the woman behind the counter, who was slicing some ham at the time. It stunk, but panic overrode my sensory issues. Without you, I would have chanced it and the consequences of that would have been deadly on two counts. One, I could have been flattened under a bus. Or lorry. Two, my mother would have killed my my dad, then buried him under the front lawn for not picking me up. Harsh, but she was well into her peri-menopausal stage by then and was prone to occasional flashes of insanity. I guess you could say you saved two lives that day?

The teacher got one hell of a rollocking from my irate mother who demanded to know what the ‘sodding hell’ he was doing letting an 8 year old child walk home alone when I told him I wasn’t allowed to. At least, I think I did? I definitely thought the words, but whether they translated from brain to mouth, is up for debate.

You did your job. You kept me safe. For that, you have my gratitude and respect. However, somewhere along the line you’ve overstepped the mark. You’ve completely taken over and I’m asking, no, I’m TELLING you to stop. You are with me 24/7, whether I’m in danger or not. It’s been this way for over six years now and with the greatest of respect, you really need to fark off now.

There is no danger in watching Mary Berry bake a cake, so why act as if there is? What’s she going to do? Come at me from inside the TV screen with a rolling pin and beat me to death? Or when a car door is shut three streets down, is it really necessary to respond with a full-on panic attack?

Why are your turning minor health issues, like headaches, into life-threatening diseases?

Your job is to keep me safe, but now I am scared of you. I am scared of how you make me feel, because you make me feel like I am going to die – especially in my dreams – which make The Texas Chainsaw Massacre look like The Muppets Take Manhattan.

I’m sick of feeling my heart race, for no apparent reason.

I’m sick of feeling sick!

Palpitations. Skipped heart beats. Clammy. Shivering. Shaking. Nausea. Tummy ache. Cold head. Tingles (and not nice ones). Tight chest. And a hundred and one other unpleasant symptoms that rage through my body at any given time.

Last, but definitely not least, that horrible feeling of foreboding just before all the shit kicks off. LIKE THE WORLD IS GOING TO END. Or my heart is going to stop and I cease to exist.

I’m a bit pissed off with it all now. Actually, I’m MEGA pissed off. So, I am taking back control of you because I want my life back. I still want you around, not that I really have any choice seeing as you are a primeval part of me (I’d quite like to stay alive), but you will work for me, not against me. Capiche?

I am getting all Godfathery on ‘yo big ol’ ass’ because you need to be put back in your place. Pegs, taking down and all that. My theory is that you took advantage of a hormone imbalance. You saw my oestrogen walking off into the sunset and thought to yourself. ‘I’m in here. This emotional idiot has no ‘balmy’ army to keep me in my place anymore. Lets cause some shit!’

Am I right?

Those rare moments when I feel relatively ‘normal’* are enough to trigger panic attacks because feeling ‘well’ is such an alien feeling to me now. Bizarre plot twist: It’s actually better for me to feel shit because it’s constant and familiar. *throws hands up in the air*

You’re like the boggart in Harry Potter – a shapeshifter feeding on my fears. So how about I use the Riddikulus spell on you? Because if I imagine you wearing a fluorescent green mankini and Compo wellies, you will look pretty damn ridiculous. I will laugh and you will shrink faster than a cheap burger on a barbie and ,eventually, you will return to your rightful place. Which, for your info, is in my BRAIN, not my entire being.

So, you are no longer anxiety. You are boggart or ‘bog’ for short because that word makes me laugh. Like when Mrs Trunchbull calls Bruce Bogtrotter ‘Bog’ in Matilda. Always makes me laugh. Just typing it makes me smile. See?

When you can behave yourself, you can have your title back again.

Regards, your human.

*Normal for me is when I don’t have something crappy going on in my body. Last noted phase of normality was 2008.

It all begins and ends in your mind. What you give power to has power over you, if you allow it.

Creative Commons Image Via Pixabay

 

 

 

Confessions of a Hypochondriac

Charles Darwin, Andy Warhol, Florence Nightingale all have something in common..

Ooh. What’s that? Intelligence? Creativity? Empathy? Fabulousness?

Well, all of those, but what I’m talking about is hypochondria.

A hypochondriac is someone who lives in fear of having a serious illness. This could even be despite medical tests never finding anything wrong. They may also have somatic symptom disorder known as illness anxiety disorder, health anxiety, or hypochondriasis.

I’ve written about my struggle with health anxiety before and I’m not ashamed to do so. The way I see it is this: The more we get mental illness out in the open, the more people can be helped, yes?

So if you’ve ever listed your aches and pains down in a diary or journal – you could be a hypochondriac.

Darwin, for instance, kept records of his own flatulence.

I like to think it read something like this..

Monday: Long. Rasping. Smells like something crawled into my colon and died.

Wednesday: Guffed. Put myself into a coma.

Saturday:  Woke up from coma & farted a 9.8 on the rectum scale.

Sunday: Attempted ‘danger fart’. Followed through. Mrs Darwin – NOT happy!

Darwin’s fart diary? That’s nowt. I kept records of my bowel movements. Yup, I lined the toilet with bog roll in order to inspect the contents of my own poo!

Then I wrote about my findings in my journal. *blush*

Note: A courtesy glance into the pan as you wipe your botty is NOT hypochondria. It’s normal. Advisable even. If there’s blood in your poo it could be an early sign of bowel cancer and early detection could save your life. We’ve all seen the Be Clear On Cancer ads, right?

Avoidance is probably worse than obsession because people ignore symptoms altogether, which was Andy Warhol’s story..

Warhol was a genius in his field, but he pathologically feared growing old and getting ill. He refused to go anywhere near hospitals and so he ignored a recurring gallbladder problem until the pain was bad enough to hospitalise him. Problem was, he’d left it too late.

Avoidance is a killer.

There is a midway between avoidance and obsession.

AWARENESS.

It’s normal to be aware of new symptoms and to seek help if problems persist, but I was doing went waaaaay beyond the realms of normality.

I compared my poo to the Bristol Shit Scale and one thing I learned from playing Miss Marple with my own crap is that EVERYTHING you ingest affects what comes out of your bottom. Even supplements!

P.S Calcium supplements can make your poo pale.

P.P.S They can also constipate you.

Pale bowel movements and hypochondria? What could possibly go wrong?!

DID YOU KNOW? Sweetcorn comes out appearing to have been undigested. Apparently it’s something to do with humans not being able to break down the cellulose husk? However, it is a good way of finding out how long the journey takes from food going in your mouth to it coming out the other end. In my case, sometimes the sweetcorn was outta there in a matter of hours. Sometimes it was festering for days..

Stress affects your digestion system. Fact. I varied from feeling nauseous and not being able to manage anything more than a dry cracker – to feeling ravenously hungry, even after a full meal.

When it comes to your bowels, stress can play havoc with them. Believe me! Some days I was crapping it up for Britain at 3am, whereas other days my poo got stuck in transit and I was stranded on the loo for what seemed like decades. One such day being when I, er, strained a bit and convinced myself I’d prolapsed my bowel.

I was on my own in the house – stranded in the bathroom with what felt like a grapefruit hanging out of my orifice.

I tentatively prodded the ‘mass’ with my finger.

As you do..

The only plausible explanation was that I’d forced my bowels out, right?

I texted OH: MY FUCKING BOWELS HAVE FALLEN OUT!

I rang the doctors and demanded to speak to my GP. Now, normally I avoid phone calls like Justin Bieber songs, but my fear of dying with my innards hanging out of my arse-hole overrode my phone phobia.

The jobsworth receptionist gave me the ‘You’ll have to make an appointment madam’ spiel, so I screamed at her that my bowels were hanging out of my bottom.

‘Ooh! Right. In that case, the doctor will phone you back as soon as possible.’

So my GP phoned back and listened as I hyperventilated in-between the words. My. Bowels. Have. Fallen. Out. Of. My. Bottom. He asked a few questions then said, ‘You’re constipated. I’m writing out a prescription for some Lactulose. Pick up in an hour’.

Lactulose? Why the fuck wasn’t I being taken to hospital to get my bowels shoved back up into their rightful place?

‘Wait, don’t you want to have a look up my bum?’

‘Well I can if you want me too, but from what you’ve described I’m 100% certain it’s constipation. You just need some stool softener.’

My GP obviously didn’t have a clue.

So I consulted another one.

Dr Google.

I can hear the sound of palms being slapped on faeces faces from here.

IDIOT! You type in constipation and two clicks later, you’re dead!!

Yes, I know, but fear overrides common sense. Also, you don’t need to make an appointment cos Doc Google is available 24/7.

Aside the usual cancer scaremongering, I was treated to some wonderful anecdotes of bowel prolapse. Not to mention graphic photographs of something resembling afterbirth protruding from people’s bottoms. Apparently prolapsed bowels are not uncommon with weight lifters? ‘Bob from Barnsley’ volunteered the info that the last time it happened to him (after an intense barbell lifting session) he simply poked his innards back up with his finger. ‘No fuckin problem’.

Quite.

Turns out my ‘prolapse’ was hard poo.

I’ll spare you the details of how I found that out.

Er, why are you talking about shit, you manky bastard?

Because IBS affects a lot of anxious people and until they know it’s IBS, they think it’s something terminal.

I thought it was bowel cancer.

It’s easy to understand how IBS can scare the living daylights out of people and a how health anxiety can develop, but if you ever find yourself poking around in your poo – it’s probably time to get some therapy!

There’s NO shame in being a hypochondriac.

Some of the world’s best have been hypochondriacs!

It’s hard to imagine Florence Nightingale (the most famous nurse in the universe) was in fact a hypochondriac, but she spent the last 57 years of her life bedridden convinced she was dying. Flo eventually flitted off her mortal coil at the grand old age of 90. Who says that doing sod all is no good for you?!

My health anxiety co-exists with a panic disorder, as it often does. The thing with panic disorder is that you get panic attacks, which are terrifying enough when they happen in the daytime, but the majority of mine happen at night. These are known as Nocturnal Panic Attacks and leading up to my crisis point I was having at least one attack every night, cue Insomnia! A tired mind is an irrational mind and all those normal symptoms of stress became life threatening to me.

There was a period where I was either pestering my doctors, the out of hours doctors or A & E. My health was my existence – my obsession.

I was having a mental breakdown.

Writing this post (specifically the literally shit bits) I can see the funny side, but at the time it was anything but funny.

IT WAS TERRIFYING.

I guess I was destined to breakdown at some point in my life because I am one of the many autistic people who’ve had to stumble through life undiagnosed. Once diagnosed we are labelled as ‘highly functioning’ though I can assure you that it’s a misleading term as most of us struggle to exist, let alone live.

I am also hyper-aware of changes in my body. Most people are unaware of such changes, but I’m special, innit?

Being naturally anxious (and obsessive) this makes me a prime candidate for health anxiety. Also, I’ve been exposed to death earlier than most as my family started dying off before I could say “Mummy, I’m going to be sick”. By the time I was 26 I’d lost all my grandparents, a school friend, my father-in-law, an aunt, an uncle and my father – The Reaper was on overtime with my lot!

When it’s written in black and white, it’s easy to see how I came to lose the plot. However, I knew I needed help, so I got some therapy. Got cured (ish) and I no longer stare at my poo longer than is necessary, or healthy.

Will I ever be free of health anxiety? Probably not, because worrying is stamped into my DNA. If they ever autopsy my body, they will find WORRIER written through me like a stick of Blackpool Rock!

There is a massive difference between controlling health anxiety and and it controlling you..

In between Andy Warhol and shit-prodders like me is awareness. It’s acting on persistent or unusual symptoms instead of ignoring them.

My advice is to learn about the effects of stress on the body. Start with this blog if you want. I’ve written about it enough times. Just search for health anxiety. Or read some books. Whatever. Just educate yourself because knowledge will help to remove the fear.

I write about my experiences to help people. No filters. I share my crap (literally in this post) so that people will see that there is no shame, whatsoever, in being mentally ill.

The End.

 

 

 

 

 

Anxiety: All Aboard The Crazy Train

 

It’s normal to have aches and pains in middle-age. The problem with minor aches and pains when you have a fearful and sleep deprived mind is that you start to overthink them until they turn into something terminal, like cancer.

This is health anxiety.

Since my late 30s there has always been a part of my body playing me up. This week it’s neck pain and I’m having another IBS flare up. I’m constipated and there is a niggling pain in my lower bowel region. A few months back I would have Googled my symptoms, come up with bowel cancer and scared the metaphorical crap out of myself.

This is what I now call ‘climbing aboard the crazy train’.

The crazy train is the runaway thoughts train. It’s a scary ride. Scarier than ANYTHING you have ever ridden on in any theme park.

Or ever will.

It’s fulled by your catastrophic thoughts. There is no driver. There are no passengers. There is only YOU.

These are just some of my anxiety symptoms over the past six years.

  • Allergies
  • Back pain, stiffness
  • Breathing problems
  • Blanching (pale face)
  • Body Aches
  • Body Jolts
  • Body Zaps
  • Body shakes
  • Body Tremors
  • Blurred vision/sensitivity to light
  • Body Temperature (going from very hot to very cold)
  • Bloating
  • Brain zaps
  • Brain fog
  • Burning sensation on skin
  • Buzzing in hands, arms and feet.
  • Chest pain
  • Chest tightness
  • Chills
  • Constipation
  • Craving sugar
  • Crazy thoughts
  • Difficulty speaking (slow speech)
  • Diarrhoea
  • Depersonalisation
  • Difficulty thinking/concentrating
  • Dizziness
  • Difficulty swallowing
  • Dry mouth
  • Flu-like symptoms
  • Fear of dying, of losing control and going crazy
  • Feelings of unreality
  • Feeling that the tongue is swollen
  • Frequent urination
  • Hair loss
  • Headaches/migraine
  • Heart palpitations
  • Hot flashes
  • Hyperactivity
  • Insomnia
  • Loss of appetite
  • Mouth (burning tongue and clicking jaw)
  • Memory loss
  • Muscles (vibrating, tremors, weakness and wastage)
  • Nausea (retching and vomiting)
  • Neck (shoulder and neck tension and stiffness)
  • Nervous stomach
  • Night sweats
  • Numbness in fingers, feet and arms
  • Rapid/irregular heartbeat
  • Pulsing sensation
  • Sensitivity to foods and medication
  • Shortness of breath
  • Sexual Dysfunction
  • Shooting and stabbing pains
  • Skipped heart beats
  • Soreness on scalp (like bruising)
  • Twitching
  • Tinny taste in mouth
  • Tinnitus
  • Lightheaded
  • Weak limbs
  • Weight loss

To list ALL my symptoms would obliterate my word count but you will see that my anxiety symptoms have affected me literally from my head to my feet and I have multiple symptoms at any one time. In my case, being menopausal and autistic means that there are overlaps but the anxiety makes things profoundly worse. For instance, my Tinnitus isn’t an anxiety symptom per se but it is worsened by the anxiety.

The most comprehensive list of anxiety symptoms I know of is here.

The next time you say, ‘THERE’S ABSOLUTELY NO WAY THIS SYMPTOM CAN BE DUE TO ANXIETY!’

Have another read through the list!

All these symptoms and the ones listed in the above link are symptoms of stress.

Heart symptoms are classic anxiety symptoms but you should ALWAYS get them checked out if they are new for you. I underwent tests on my heart and the doctors concluded that my ticker was doing everything that it should, it was just beating faster than it should because my body constantly thinks it’s in danger.

I have generalized anxiety with health anxiety that is now in ‘remission’ cos I got myself some therapy, innit? I’m also autistic which is where the roots of my life-long anxiety problems lie. A lot of autistic people have mental health issues. Most, I’d say. This is because it’s stressful living in a world that you don’t understand and which doesn’t understand you. I also have OCD with sporadic bouts of depression. Not forgetting the good old menopause which means I am lacking in the hormones which kept me sane (ish) for 30 years – discounting one week out of every month where I went psycho and would have willingly stabbed somebody for their Mars Bar..

Over these past six years, I have been UTTERLY convinced that I have having a heart attack or that one is imminent. Or that I am riddled with cancer or some other insidious disease. Yet, ALL the tests keep coming back clear. The horrors that I have tortured myself exist only in my imagination. Whoever said that autistic people don’t have imagination? I have a fabulous imagination. Ask my GP!

Everybody is different when it comes to anxiety. My symptoms may not be your symptoms but the one thing I have learned about anxiety is that it affects your WHOLE body. Symptoms are transient. They stick around for a few days or a few months but then they go to be replaced by something else. To the exhausted mind – new symptoms equals fear.

‘THIS time, I’m really ill.’

Yes you are, but the illness is mental not physical. Dear.

A few months ago I would have been hyperventilating in my GP’s surgery at the onset of a new symptom but I have been there, done that and the t shirt is a mangled mess. Now, I calmly remind myself to acknowledge the symptom but not to Google it. If it lasts longer than two weeks, I see my GP.

It is important that I don’t CATASTROPHISE.

Yesterday it was neck-pain to the point where I needed painkillers but instead of allowing my mind to start shitting me. CANCER? OMG AM GONNA DIE kind of thing, I thought it through logically..

Last week, I’d been decorating, as in, climbing up ladders and looking up. I was working muscles that I hadn’t used in a while. Plus, I have arthritis. When you look at it rationally it’s easy to see why my neck would be giving me gyp. Simple isn’t it? IBS symptoms? I’ve been back on the beans and onions. To the exhausted mind – ANY pain – fires up the stress response. It has to be an illness, right?

Nope.

Don’t believe everything you think.

I didn’t allow my thoughts to run away with me. I took painkillers and each time the ‘what if?’ Gremlin wandered into my mind, I acknowledged it for what it was – A THOUGHT – and carried on binge watching Benidorm. Today, there is no pain and I had a decent night’s sleep because I didn’t climb aboard the crazy train.

Way to go, me.

The point of this post is to help you to understand that anxiety affects the entire body. Often there will be no explanation other than stress hormones affecting your body. I wouldn’t have thought that my scalp feeling bruised was an anxiety symptom but it is. Or a clicking jaw. The good news is that your symptoms will start to fade away as your stress levels recede. If you need the reassurance of your GP, by all means go and get your ten minutes worth.

Then ACCEPT it when they tell you it’s anxiety, especially when tests come back clear.

The crazy train will come for you.

YOU DON’T HAVE TO CLIMB ABOARD.

 

Autism: Confessions of a Skin-Picker

 

What’s Stimming?

Stimming is self-stimulatory behaviour. It is repetition of movement, sound or movement with objects.

It’s done for relief and pleasure.

Simplified: Stimming calms or stimulates.

Everybody stims, however, NTs have more socially acceptable stims and are more able to control them.

With an autistic person – stims are necessary to their mental health well being.

We stim to release tension or to stimulate ourselves.

Some people stimulate themselves to feel pain for pleasure, like my friend who liked to pull her leg hairs out one by one using tweezers.

*eyes are watering*

I didn’t know I was autistic until five years ago – so I’ve had forty plus years of generally hiding/suppressing behaviour that I now understand to be stimming..

It started with spinning where, as a small child, I would spin myself around until the butterflies danced in my stomach.  Then came infants school where there were boxes upon boxes of colourful (and tactile) objects that I liked to stroke or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily. I wasn’t interested in constructing things like the other children. Sod THAT for a game of conkers! I just wanted to sit in a corner and stroke stuff!

Speaking of conkers…

I like to touch them. (NOT a euphemism)

Then came the glue..

You’re probably reading this and thinking, ‘Glue? Oh my God, she’s a glue sniffer!’

Rest assured. I wasn’t (and have never been) a glue sniffer.

I may, however, have had a brief dalliance with Tippex in my high school days..

One of my all time loves is art and that love started in school. However, art was sensory for me. Visually? Great. Smells? Not so great.

I loved the smell of paint. Still do, but not when it’s combined with the aroma of curdled milk, cabbage and dried vomit as was the case in school. That said, I loved to create pieces of art so I forced myself myself to tolerate everything else..

The other sensory issue was that I almost pathologically HATED getting stuff on my fingers..

My mother told me that I was using a knife and fork a lot younger than my brothers were. She presumed it’s because boys are generally slower than girls? I think it’s probably because I disliked the feel of slimy food on my fingers. *shudders* This also explains why I find making pastry so unpleasant, hence, I avoid it wherever possible.

Whoever invented ‘Jus Rol’ has my unwavering adulation.

So, glue..

The first time I used glue – the stickiness made me anxious but I had communication issues so I wasn’t able to ask if I could go and wash my hands. I was starting with palpitations when THIS happened:

The glue dried and I discovered that peeling it off my fingers was quite possibly the best thing to happen to me since Enid Blyton!

I could happily lose myself in a glue-peeling session which made my school day slightly more tolerable.

Note: FFS don’t try this using Super Glue!

Glue-picking was the precursor to my most used stim – skin picking.

Yeah, a lot of my stims are gross.

When I was 21 I got chicken pox. Initially, this was crap because I was pregnant at the time. I was the size of Brazil with spots that itched like fuckery. I remember the one thing that people kept saying to me: ‘WHATEVER YOU DO, DON’T PICK THE SCABS!’

That’s like telling Mary Berry to stop baking and become a binman..

OF COURSE I PICKED THEM!!

I especially loved the scabs on my head because I would pull them ever-so-slowly through my hair which was, like, orgasmically pleasurable.

I’ve always picked my spots. And other people’s. Feeling that satisfying ‘pop’ as zit matter is released at high velocity? That’s right up there on the pleasure scale for me. Welcome to the pleasure dome mateys! I literally don’t understand how a person can have a big fat juicy zit and NOT want to pop it? Weirdos.

Downside is: I have scars.

LOTS of scars.

I also pick the skin off my lips. Sometimes with my fingers – sometimes with my teeth. NOT the best of stims if you like vinegar on your chips!

Zit slaying and lip picking are stims I try and save for ‘me time’ because even I know that it’s socially unacceptable to be pecking at yourself in public like a demented pigeon. Even so – sometimes I forget myself..

My bad, motherfunglers.

Rest assured that once I’ve acknowledged my skanky behaviour, I switch to a more socially acceptable stim – like fiddling with my cube/keys/phone/pebble/whatever.

Should I mention that I’m allergic to nickle so when I wear cheap earrings, my skin weeps, then crusts over? I guess you’ll know where I’m going with this so I’ll move on..

My, not gross stims, include rocking back and forth or side to side. I take more in when I’m rocking because I am less focused on my anxiety. It’s a gentle movement but if I’m having an anxiety crisis at home, it’s full on IN YOUR FACE back and forth rocking sometimes combined with manic pacing up and down.

Then there’s my fidget cube. I say mine. I may have nicked it from The Boy because his stim of choice is to chew his nails..

I also use a spinner which I like to spin near my cheek because I like how it feels on my face. No doubt, I’ll probably end up in A & E one day with a spinner-related facial injury..

NOTE: I’m trying very hard NOT to think of the scab..

Next, is my thumb ring.

Yep, I just lurve touching my ring.

Leaaaaaaave it.

I always wear one on my thumb which I manipulate with my index finger or my left index finger and thumb. It started off as me trying to give myself an edgy look? Then I realised that manipulating it calmed me down, so I’ve worn one for years. My current one is metallic rainbow colours so I get visual and tactile pleasure. Win and win!

I also LOVE soft materials. I wear soft leggings and stroke my legs, but not in a kinky way. I love blankets too – especially fleecy ones. They comfort me and keep my extremities semi-warm as I seem to be lacking blood flow in my hands and feet. Plus, under a blanket, you can hide from the world.

Also, people trying to sell you PVC windows. Or God.

Going back to pastry, I was once informed that cold hands make better pastry? So it’s a shame that I dislike the feel of it on my fingers or I could be the pastry queen of the North by now, no?

I get that I have some gross stims. I mean, picking my skin is pretty, er, what’s that word the young un’s use? Ah yes, ‘minging’ but it gets me through the day and through life. It’s not like I sit in Costa flicking my skin into people’s skinny lattes is it?

FYI, I am picking my lips right now as I’m editing this post for the 135th time.

Finally, people may tell you that stimming is offensive or unacceptable. The problem is with them, not you. Stimming has a purpose. It is part of the armory that we need to exist in this world. For this reason (and many others) it is perfectly acceptable to tell them politely, but with conviction, to eff off.

Me? I stim to calm myself and because it feels good.

 

 

 

 

 

 

 

 

 

 

 

Anxiety: Rewiring The Brain

 

My autistic brain likes to research. I have an almost pathological need to understand things. I can’t take things at face value. I have to dig deeper. So, I have an anxiety disorder and in true ‘me’ fashion. I have to know why I am an anxiety case.

I’ve spent 47 years living with anxiety and the last seven years researching it. Maybe that makes me something of an expert? I don’t know what it’s like not to have anxiety on some level. I think I came out of my mother’s womb hyperventilating but having anxiety and understanding it are different things.

I understand anxiety.

I understand panic disorder.

Knowledge is power.

So, the educational stuff..

The Cortex (or Tex because I like to give things names)

Tex

Tex is the thinking part of our brain. He’s what makes us human, able to reason and know when some bastard has short-changed us. It’s also where we develop negative thoughts and irrational thinking. This is cortex based anxiety.

Tex is a good bloke but sometimes he gets overwhelmed by the volume of negative self-talk we throw at him with all the ‘I’m a shit person’. ‘I will never be happy’. ‘What’s the point?’ ‘This is just too hard’. Not to mention the ‘What if’s?’ In time, these negative thoughts repeatedly trigger the fight or flight response which releases stress hormones into the body. We have physical symptoms. Then we worry that we have a life threatening disease. When this happens, we have become mentally ill.

Simplified: Tex thinks.

The Amygdala or Amy for short. (see above)

Amy

Amy is small, almond shaped and responsible for the response and memory of emotions, especially fear. She is also the reason we don’t become extinct because: No amygdala = no fear = extinction.

Whenever your flight or flight is triggered, that’s Amy doing her stuff.

Amy is responsible for phobias. The reason I break out into a cold sweat when I clap eyes on a spider is because I found one crawling around in my nightdress when I was five.

I SCREAMED THE HOUSE DOWN.

Amy remembers this event so every time I see one of the eight-legged fuckers, my heart bangs like an old barn door in a gale.

I have bad dreams every night and wake up in a state of anxiety because my fight or flight response has been triggered by my subconscious. This is amygdala based anxiety.

Simplified: Amy reacts.

Some people have cortex based anxiety. Some have amygdala based anxiety. Some unfortunates have both.

I have both.

One thing can be said of me.. I do NOT do things by halves.

My physical symptoms have given me cause to imagine the very worst is happening to me, as in terminal illness instead of anxiety. This is cortex based anxiety. Basically, a Dementor has poor old Tex in a choke hold and is draining all the happy from him. How’s that for an analogy?

Every night my Quentin Tarantino-esque dreams prompt Amy to leap into action, cape and all. She’s literally a super hero trying to save my life. Only, she doesn’t understand that the ‘danger’ to my life is a harmless dream – not an axe murderer making his way up the stairs.

None of this is Amy’s fault. She is trying to keep me safe. She must be knackered though. I know I am. Therefore, changing how I think is necessary if I want to control my anxiety instead of it controlling me. Note I say ‘control’ as opposed to ‘cure’. I have to be realistic here. I’m autistic and the autistic brain is prone to anxiety. I’ve always been anxious and, failing a lobotomy, I always will be. The best I can hope for is to be able to control my anxiety instead of it controlling me.

Changing how we think is important but there are other things we can do to help to rewire our brains. The first thing is to understand the effects fear has on the body and how relaxation can reverse it.

The Sympathetic Nervous System (SNS)

The sympathetic nervous system is part of the fight or flight response.

Adrenalin and cortisol are released.

Our hearts beat faster.

Blood pressure goes up.

The digestive system slows right down.

We tremble, sweat or get the chills.

We have the urge to open our bowels or have a wee because a full bladder isn’t helpful when we need to run like buggery or punch a mugger in the face, right?

When SNS kicks in, the amygdala has been activated. Remember, Amy doesn’t know if you are in danger of being run over or if it’s merely your thoughts that are asking her to step up and save your life.

The Parasympathetic Nervous System (PNS)

Heart rate slows

Blood pressure lowers.

Gastric juices increase enabling digestion.

Breathing slows down.

Body temperature returns to normal.

PNS is the body returning to normal.

We need BOTH responses to live. It’s just a question of balance.

Research shows that doing deep breathing exercises, mediation and relaxation exercises helps to activate PNS. If you do relaxation exercises regularly you will eventually be able to stop your amygdala from responding to your thoughts as if they are a threat on your life.

If your anxiety is cortex based, you need to work on your thoughts.

Things you can do include:

  • Writing your thoughts down and, if you want to, trashing them.
  • Try and look at your situation in a different way.
  • Do what makes you happy.
  • Avoid people off who make you feel like shit. If you are in the quicksand, you want someone who will lift you out, not push you down even further.

If your anxiety is amygdala based, relaxation therapies are the way to go.

Relaxation therapies include:

  • Yoga
  • Guided meditation
  • Progressive muscle relaxation
  • Deep breathing exercises
  • Mindfulness

Any of these therapies will help to rewire your brain but you have to be prepared to put the effort in. It won’t happen by itself. The beauty of breathing exercises is that they can be done anywhere and nobody will know you are doing them except for you. Also, progressive muscle relaxation will teach you exactly where you hold tension in your body. For me, it’s my jaw, shoulders, stomach and, believe it or not, my arse.

Moving on..

Breathing

We need to breathe or we die. Simple.

Anxious people don’t breathe properly. They breathe so shallowly that they hyperventilate which causes a whole load of unpleasant symptoms.

Learning to breathe properly is probably the most valuable thing we will ever learn.

Try it when you feel stressed.

Take a big breath in.

Feel your diaphragm expanding.

Then let it out s l o w l y.

Do this another three or four times.

If you’ve done it correctly your heart rate will have slowed down a little and you will feel calmer.

If you do nothing else, learn to breathe properly.

When it comes to therapies find what works for you but be consistent.

I find it helpful to acknowledge when my thoughts are turning funky and to do my breathing exercises.

It slows my heart rate down.

It calms me.

It stops Amy from launching into action.

I tell her, ‘I don’t need you, Amy. It’s just my crazy thoughts. Go wash your cape or something.’

So, when you think you will be this way forever and it’s hopeless, remind yourself that it is possible to rewire the brain by changing your thoughts and doing exercises which activate the parasympathetic nervous system.

Whenever you think that it’s impossible and you can’t be arsed because it will never work etc etc – just change the m to an s and put a lil space in to make it is possible.

There is a way. You just have to find what works for you.

Cheesey vector art to close the post.

 

 

 

 

 

 

Anxiety: The Night Shift

 

What were you doing at 2am this morning?

Chances are you were asleep.

Me?

I was cleaning my kitchen.

Are you insane?

Well yes, but I don’t usually snap on the Marigolds in the wee early hours of the morning..

Thing is. I went to bed at 10pm last night and woke up having one of my not so wonderful nocturnal panic attacks. I’d been dreaming so I presumed it was around 4 or 5am, which is the time I usually wake up with a racing heart..

Then I looked at the clock.

IT WAS 11.30 PM!!

There was an ‘What the actual fark?!’ moment, right there.

I’d only been asleep for about an hour?

This was alarming in itself as I am used to waking up around 4 or 5 am. I have woken early on other occasions but when you are half asleep things are confusing and unfamiliarity intensifies fear which intensifies the sensations of anxiety.

I my breathing exercises but on this occasion they didn’t work. I was just too wired.

The adrenalin surged through my body affecting every part of me from my head to my toes. This is the sensation where my body feels electrified combined with a horrible feeling of foreboding. It’s a majorly shit feeling but I’m used to these sensations. I’ve experienced them more times than I can remember. Mostly, the deep breathing works, but sometimes my heart races on regardless.

That’s when I have to get up.

This was one such occasion so at 11.45, I gave in and got up.

On walking into the kitchen, my dog looked at me as if to say, ‘What the fuck are you doing, Human? I was having this totally awesome dream about me, a fit Dalmatian and a pallet load of Bonios and in you walk lookin’ all pale and shaky. Don’t expect me to lick your sweaty face anytime soon, yeah?’

Then she started licking her arse..

I don’t blame her. Like me, my dog is a creature of habit and doesn’t like surprises. I often wonder if she is autistic too?

My first job was to flick the kettle on for some herbal tea. Ginger for the nausea. Then I filled in one of my trigger forms for health anxiety. This is where I talk myself down from my state of irrational fear by asking myself what my worst fear is and what factual evidence I have for it. For instance, my fear might be that I will have a heart attack or my heart will stop and I will, like, die. Factual evidence for this thought are my symptoms – such as palpitations and chest pain.

Then I consider the evidence against this thought. In my case, I have had recent and extensive tests which all showed my heart to be working as it should albeit a bit fast due to anxiety. There is no evidence of heart disease. Also, I have had these episodes for the last 6 years and I am still here.

I remind myself that even if the worst was to happen, I have experienced and come through a major health scare when I was bleeding internally in my 37th week of pregnancy. My life and that of my son was in danger. However, despite understanding the seriousness of the situation, I felt no fear and did not panic. This suggests that if the shit was to hit the fan, I would cope.

I also remind myself that, relative to it’s power input, the heart is the strongest organ in the human body. It’s designed to keep going despite stress or trauma. This organ kicks arse yet because of the sensations of racing and humping, I imagine it to be frail or delicate? There is no medical evidence to support heart failure or disease. My heart is merely responding to the fight or flight mechanism. A necessary bodily function. It’s there to keep us alive. My brain doesn’t know that it’s my thoughts that are triggering the response. It’s simply doing it’s job.

Next, I consider the other possible explanations for the panic attack. What have I done differently?

In this case, I had eaten too much sugar and too many cups of decaf. Even decaf has a percentage of caffeine, so if you drink enough and are sensitive enough, it will affect you. I also ate a spicy meal which I know affects me. When I woke up, my mouth felt like a flip-flop, so I could also have been dehydrated and dehydration can trigger panic attacks.

So what did I do to cope with the situation?

I cleaned my sodding kitchen!

I worked with the adrenalin instead of feeding it with irrational shit.

I completed my worksheet by coming up with a realistic thought about my situation and this is what I wrote..

This is unpleasant but I have been here hundreds of times before.

These sensations always pass.

I can cope with this.

At around 3am, I reevaluated the intensity of my thoughts, emotions and sensations and noted that it had gone from 90% fear to 10% with my physical symptoms being less intense, so much so that I was able to go back to sleep.

It’s 8am as I am typing this. I have had four hours sleep and I feel exhausted but I got through another night shift.

I didn’t add fear to the fear.

I didn’t phone for an ambulance.

I didn’t disturb anybody else.

I will not fear going to sleep tonight.

If I have another panic attack, it won’t kill me.

It never has.

“That’s the advantage of insomnia. People who go to be early always complain that the night is too short, but for those of us who stay up all night, it can feel as long as a lifetime. You get a lot done” ~ Banana Yoshimoto

 

 

 

 

Spontaneity Hurts.

Say yes, and you’ll figure it afterwards ~ Tina Fey

Doesn’t work that way for some people, Tina.

It certainly doesn’t work that way for me.

Sometimes it will appear that I am being spontaneous, but the truth is that I will have been thinking about something in my head long before I actually say, ‘Shall we do this today?’ However, this can only apply to me and OH as The Boy needs time to adjust to any changes because he is autistic too.

One problem I’ve always had is having to cope with other people’s spontaneity – such as those who turn up without notice. I’ve had decades of people just turning up unannounced. There have been countless times when I’ve hidden upstairs or in the kitchen to avoid answering the door..

As part of my diagnosis my ex husband wrote a letter about me as, at that point, he’d lived with me the longest. He referenced how I used to do these things and how at the time he thought I was being moody or rude. He noted that every time the door went or the phone rang, I was suddenly elsewhere..

My parents never turned up unannounced. I guess this was because my mother also struggled with unannounced visitors. My mother-in-law, bless her, was different. She was full on neurotypical and as old fashioned as they came. I know without a doubt that she loved me, but I also know that she didn’t understand me. She’d often ask her son why I was so moody, only I wasn’t being ‘moody’. I was struggling to process the change to routine.

In the early years of my first marriage, I was practically a hermit. I struggled with everything that most people do without thinking. Even fetching the milk in was stressful because there was a chance that one of the neighbours would see me and I’d have to speak to or ignore them. It was often the latter. Sometimes because it was easier. Sometimes because the words wouldn’t come out. Hence, I got myself a reputation for being ‘weird’ or ‘stuck up’. I’ve waited hours for neighbours to go in just so I could walk up the street. On especially anxious days, I have cancelled appointments rather than walk past people in my street. Sounds ridiculous, I know, but it’s true.

My mother-in-law had set days where she would come to ours. The routine worked for me. However, sometimes she’d just turn up when I was on my own. She’d peer in through the living room window and rap on the glass. I loved this woman so much but my heart would sink, not because I didn’t want her, but because I wasn’t prepared for her. There was no time to get my head around it and I had no choice but to let her in because no matter how muddled my head was, I would never have left an elderly lady on the doorstep.

A lot of people like to be spontaneous but I’d hazard a guess that the majority who do are neurotypical.

Take Christmas, for example..

Every year, I give OH a list of what I want for Christmas (almost always books) and he always says, ‘We’ll see’. On hearing those words, I become anxious. He has this thing where he likes to ‘keep me guessing’. It’s utterly NT and it drives me FUCKING NUTS!

Every year, I tell him, ‘I don’t like surprises. Please just get me what I’ve asked for’.

Every year he says, ‘We’ll see’.

I’d hoped that my DX would change this and he would understand that surprises stress me, even nice ones.

Last week, I told him that I’d give him my list of books and he replied that I’d be getting something else as well because it made him happy to surprise me.

What’s more important? The pleasure of the giver? Or the distress of the receiver?

I can’t help how I am. I can’t adapt. No matter what I do, I will ALWAYS react negatively to spontaneity.

I get that there has to be compromise in any relationship, let alone a neurotypical/autistic one, but sometimes compromise isn’t possible. In this situation there can be no positive compromise. It can only be that OH does as I ask him or I try and cope with the anxiety in order to make him happy.

An example of spontaneity malfunction from my childhood..

We’d just moved and my life had been turned upside down. That summer, I turned 11 and my mother decided that I was old enough to be sent on errands, whereas before, I’d always gone with my brother. One day she told me to go to the local shop for her. It was a bad day anxiety wise and I had no confidence at all. I reacted badly. However, my mother interpreted my behaviour as being normal for a girl my age. Except that I wasn’t being rude. Or lazy. I was overwhelmed.

How can a trip round to the local shop overwhelm you?

Here’s how.

The request was spontaneous. There was no time for me to process or plan. Mum wanted something from the shop and she wanted it there and then.

The only route to the shop was along a busy main road where the traffic, at the best of times, was loud and unrelenting. Part of pavement narrowed with railings on the roadside and overgrown bushes on the other. It was claustrophobic and forced you into having communicate when people allowed you past or when they thanked you for allowing them past because for all my problems, I have always practiced good manners whenever possible.

The shop itself was half post-office, half grocery shop and it was always busy after around 10am. Mum sent me round at dinnertime – one of it’s busiest times.

What happens to my brain when I’m stressed is that it goes blank. I struggle to process and retain information. I remember standing in the shop with sweat literally pouring out of me – staring at what my mother had written on the piece of paper..

I was looking but I couldn’t see anything..

The noise was deafening. That, combined with the smells of cooked meats and that general grocery shop smell was an assault on my senses. The ‘normal’ thing to have done would have been to ask someone, but that meant communicating and it was beyond my capability at that moment in time. In the end, I walked out of the shop with nothing and went back home feeling useless. It was a feeling I would become familiar with as the years went on. It really bothered me that I couldn’t do the spontaneous thing without my brain malfunctioning. I need to plan. I need to know where everything is, right down to the toilets. I need trial runs to unfamiliar places. I’ve done this with holidays. It’s a part of my autism that I wish I didn’t have but I also know it’s a part of me that will never change.

Spontaneity doesn’t make me feel ‘alive’ like it does with most people. It freaks me out and fucks me up.

Since being formally diagnosed as autistic, a lot of the guilt has left me. How can I beat myself up over something that’s beyond my control? Nor do I feel the need to apologise anymore. I can try and educate people but I can’t make them understand that spontaneity hurts.

  I might say yes IF I can figure it out beforehand ~ Me