Disconnect to Reconnect

I have a problem. This digital age is making me ill and I need to cull my use of it for the sake of my health.

Don’t get me wrong, the internet and social media etc has its positives. It’s in social media (and blogging) that I have found my ‘tribe’ – fellow autists who understand me completely. And I’ve found some lovely online friends who I’d definitely make the effort to meet in real life. There is comfort in knowing that there are other people like me – regarding autism, anxiety and fibromyalgia. So, there are positives to the digital era. But there is also a dark side – a side which ramps up anxiety and deepens depression.

The internet is a place where fear and hate lives.

Cyber attacks.

Trolls.

The threat of ‘deletion’.

Addiction.

Fake News

Unwanted news and graphic pictures.

Katie Hopkins.

When it comes to social media, it seems to me that Twitter’s sweet little blue-bird icon should give way to a massive vulture with bits of flesh dangling from its beak because, DAMN! PEOPLE CAN BE SO NASTY!

Tweet this, Motherfungler!

With Twitter, people can be nasty and remain annoymous, whereas, back in the day, ‘trolling’ involved sitting at the kitchen table with a newspaper, a pair of scissors and some glue. There was a certain amount of effort involved, you get me? These days, people only have to switch on the PC (or other electronic device) to get their nasty on and, alarmingly, one of the worst social media offenders runs the United States!

But it’s not just social media that’s the problem. I’m starting to think that this digital era in general is making me ill – the screens and the amount of information in one hit. Not to mention, the addiction.

Take me back to the time of radio, books and record players the size of a small car.

Of simplicity.

I’m not against mobile phones per se. As a female driver, I feel safer with a phone to hand (not while I’m driving, obvs) The problem is that it’s no longer just a phone. It’s an intrusion.

Often, I don’t I don’t need to check my phone. It’s just habit. I mean, just how important is it that I have to see somebody’s fry-up? Or e-mails flogging me worming tablets with 10% off?

*Note to self: Order worming tabs*

Of the twenty or so e-mails I received this morning, two of them are from me!

I can’t do it anymore! I know the digital age is escalating my anxiety, so it’s in my best interests to disconnect as much as possible. Therefore, my plan is to have a month where I don’t use social media at all and to only read paper books. I may still blog because blogging is my voice. Also, I blog in the morning to scare up a bowel movement, innit. The adrenalin helps to get things moving, y’know? But that will be it. It will be an experiment to see if my anxiety levels improve.

I will remove any relevant apps on my phone because if they’re not there, I can’t be tempted, right?

I want my phone to help me, not control me and at the moment that slimline b@stard has me right under its thumb (ID)

To reconnect, I have to disconnect.

The thing is, I’m old enough to remember a time before the digital era, so I know how satisfying that feels. I feel sad that today’s generation won’t ever know that. What they will know is the anxiety and depression that comes with living their lives online, constantly comparing themselves to photo-manipulated versions of people who appear to live the perfect life.

It’s not real.

More importantly, there is the danger of developing problems with our spine. According to the British Chiropractic Association, our obsession with smartphones has led to a rise in the number of youngsters with back problems. This is due to the amount of time they spend leaning over their phones!

45 per cent of 16 to 24-year-olds suffer from back pain – a 60 per cent rise from last year.

You Get Me?

Kindles.

Kindles are great. Especially those 99p bargains! But where is the joy in an electronic purchase? Standing in a book shop, inhaling paper and ink? It’s magical! It’s like catnip to a cat! You don’t get that with a Kindle!

Part of what made growing up bearable to me was the fact that I got to buy a book every week and part of that joy was the visit to the bookstore. Granted, there is the occasional whiff of ‘eau de fart’, but book shops are exciting places and it doesn’t surprise me that people feel stirrings within their bowel regions whilst being surrounded by all that wonderful literature. Personally, I’m too posh to fart in public, but I’m no stranger to having to put a book down, mid-browse, in order to sprint to the nearest loo!

I am part of the digital age whether I like it or not, but I know I’m not the only person on the planet who craves simplicity. As with any addiction – will power is required and I’m sick (pardon the pun) of feeling ill and absorbing people’s hatred on social media, so, disconnection will commence on November the 1st.

I am, in effect, closing down all those ‘open tabs’ that are draining me of my energy, creativity and faith in humanity. Not to mention, positivity and you do need a little P to battle mental and physical illness, no?

We already have months of the year where people are encouraged to stop drinking and smoking. Doesn’t it speak volumes that the same thing is starting to happen with social media?

Almost everything will work again if you unplug it for a few minutes, including you. ~ Anne Lamott

 

 

 

 

 

 

Coping Strategies: What Can Help You Not To Mask?#TakeTheMaskOff

This week – how to be mask-less (ish) and survive with marbles intacto.

Firstly, no more f**ks shall be given.

By ‘f**ks’ I mean Not giving a f**k is living whilst BEING YOURSELF.

It’s time to be selfish and I know that for most of us autistics it’s a BIG ask because we’re so used to worrying about not upsetting those around us, right?

We’ve suppressed who we are, just so other people don’t feel uncomfortable around us?

Well, as my dear old mum used to say (frequently)

Sod THAT for a game of soldiers!

Or was it conkers?

Anyway, it’s time to take back what’s ours – which is our rightful place on this planet!

We need to be us.

Not a version of us.

Or someone we quite like off the telly.

Us.

And if people start giving us a hard time for being our glorious selves – we can walk away. We can also flick them the V’s, but why waste the energy? Haven’t we wasted enough precious time and energy on those toxic tw@ts?

Self Care

Self-care is essential for autists. You’ve got to know when to put yourself into recovery mode and not to try and override your brain when it’s telling you it’s about to malfunction!

If you are the overly sensitive kind of autist, you’ll need to steer clear of bad news or toxic people. It (and they) will have a detrimental effect on your mental health.

It’s also important to be mindful of how much time you spend on electronic gadgets and social media. The autistic brain often struggles to cope with copious amounts of information in one hit. This is why we get headaches and anxiety. Set yourself time limits and stick to them and don’t take your electronics to bed with you!

Electronics = Stimulating= Insomnia= Godzilla

To Socialise or Not to Socialise?

This is very much down to the individual. Some autists love to socialise. Others, like me, don’t. But sometimes socialising is necessary because people get married and die and stuff.

So what to do?

I have devised a plan.

Firstly, it’s OK to decline invitations. That event will go ahead without you and nobody will really give a toss whether you’re there or not once they’ve necked a few ciders!

Secondly, reserve the right to cancel at the last moment. Tell your host in advance that you may have to cancel. It’s up to you whether or not you disclose the reason why, but I am always honest about my anxiety and fibromyalgia.

With a bit of luck, this will put them off ever asking me again! Muhaha

Thirdly, don’t feel obliged to make small talk with people. Do what makes you comfortable and if that’s sitting in the corner with a massive slice of Victoria sponge and a pint of gin – sobeit.

Fourthly, you have the right to throat punch anybody who tries to drag you onto the dance floor to do the ‘macarena’ or any other dance that involves synchronisation on a mass scale. The reason is that autistic people are generally uncoordinated, innit. Then again, one can flourish the no f**ks given card and unleash your magnificent stimmy-moves along to Dancing Queen.

Dance or punch. The choice is yours.

Finally, leave when you need to leave – even if it’s after ten seconds.

When it comes to employment, you don’t have to go to works ‘dos’. It’s NOT compulsory. People invariably get drunk, make prats of themselves and spend the next six months avoiding every work colleague they propositioned whilst under the influence of thirty-six Pernod’s!

If the words ‘work’s do’ make you feel so anxious that you do a bit of sick in your throat, it’s probably best that you stay at home and watch Casualty in your Pokemon onesie instead!

Remind yourself that this is your world too. It might not feel like it, but it is. And we only get one shot at life (shameless cliche) so why waste time wearing masks that will only suffocate us in the end?

For what it’s worth, I do believe that masking has it’s place, but only as an occasional ‘aid’ that benefits the individual. Like everything else – when something is used to excess, all benefits are lost. In the case of masking – people develop mental illnesses because of the effort it takes to be someone else and subsequently the loss of their own identity.

All I ask is that people understand the consequences of long-term masking.

We need to understand our limits and for those rare occasions when we have to push ourselves into uncomfortable territory (such as weddings or funerals) we MUST practice self-care – before, during and after the event. The exception to this is our own funeral because if there is ever a time when no f**ks are given – it’s when it’s us who’s lying in the coffin. You get me?

Being yourself is hard after a life of masking. I know. But we were never meant to be ‘one of the herd’. (another shameless cliche)

In trying to be the same as everyone else we just end up standing out even more, but not necessarily in the way we’d want to.

Who do ewe think ewe are? (sorry)

I recently drove through Dartmoor where there were wild horses grazing among thousands of sheep. It was a breathtakingly beautiful place. It’s also a bit arse-clench-y when sheep wander in front of the car like they are some kind of death wish. Point is, the sheep vastly outnumber the horses, but they co-exist with them. The horses are not trying to be like the sheep. The horses are comfortable being horses and the sheep accept them and get on with the important task of grazing or having a poo.

That’s the kind world I’d like to live in.

Not the grazing and pooing bit. Obvs.

Then again..

I mean all autistic people living as autistic people.

Will that happen in my time? Probably not, but I really hope it will happen in my son’s lifetime.

The only way that can possibly happen is to #TakeTheMaskOff.

 

 

 

 

Diagnosis/Self Awareness – How Does That Affect Masking?#TakeTheMaskOff

 

Until the age of five, I didn’t mask. There was no need to. I was free to exist in my little world without fear of ridicule. I was happy with who I was. Then one day my mother took me to a strange place. This place was loud and scary and had lots of other children in it. It was a sensory nightmare.

My mother stayed with me for a while, then she got up to leave. I remember trying to leave with her, but she told me that I had to stay there. So I did what many children do on their first day of school – I cried.

The teacher sat me on her knee, but it didn’t comfort me because I didn’t like the closeness of her. She was a stranger invading my personal space, but I couldn’t move. I couldn’t speak. I couldn’t do anything to change the situation. A bell rang (loudly) and we were told to go outside where it was hot and the noise was deafening. It hurt my ears. I mean really. I didn’t know what I was supposed to do, so I just stood in the middle of the playground trying (and failing) to process the sensory stimulus that was threatening to overwhelm me.

That was the first time I remember experiencing loss of control.

At that moment, a girl walked up to me. I thought she was going to talk to me. Maybe offer me some friendliness? But she didn’t say a word. Instead, she looked at me as if I was something particularly nasty. Like shit? Then she pinched me hard on the arm.

Whatever I was expecting it wasn’t that.

To the onlooker, it must have looked like I didn’t react at all, but inside of me all hell was breaking loose.

I stared at my shoes while my brain went into overdrive.

I remember wanting to run off home to be with the family who loved me unconditionally and the invisible friends who understood me.

I also remember that nobody came to help me.

Nobody.

How could nobody have seen this?

And why had my mother left me in this horrible place?

At the end of that first day of school, I went to collect my coat, but there was something else on my peg – a mask. I placed it over my face and I wasn’t me anymore.

I wore it for the next forty-one years.

In my forties I became ill. The mask had been slowly suffocating me and now I was struggling to breathe – to live.

During this time I saw a doctor who saw beyond my anxiety. He sent me to see a psychiatrist who sent me for an autism assessment.

Nine months later, I was formally diagnosed as autistic.

First there was relief. Then came the grief – not for being autistic, but for all the time I’d lost trying to be something I’m not and can never be. I grieved for the fearful child that I’d been, the troubled teenager I became and the adult who masked so much that she lost her own identity!

In the beginning, masking is helpful because it provides a way to fit in with everybody else, but over time the mask gets heavier because you lose energy and strength. The mask starts to suffocate you. But you’ve worn it for so long you don’t know how to take it off. Then, life has a way of forcing change upon you and it often comes in the form of mental illness.

Mental illness shrinks you. Literally, in my case. My clothes became loose. My skin lost it’s elasticity. My mask came loose. In the end, it came away with no effort at all, but it was because I was ill. I thought I would feel vulnerable without it, but mental illness takes you to the darkest place you could imagine. A place you NEVER want to be again. I would rather take on the world in it’s full judgemental glory than go back there!

I masked because the world didn’t want the real me and I needed to try and be like everyone else to survive. Being me wasn’t an option – certainly not when I was school in the 70s and early 80’s. It also meant that I flew under the autism radar.

Masking delays diagnosis. Boys are diagnosed a lot earlier because they are generally crap at masking. The example I can give is of my son and myself. My son doesn’t mask and he was diagnosed at 4 years old. I have masked for the majority of my life and I was diagnosed at 46 years old.

Since my breakdown and subsequent diagnosis, I no longer care what people think of me. I get to be me, now.

Epilogue

I walk out into the middle of the infant school playground towards the smaller version of me.

She looks lost, awkward and out-of-place.

She’s hurting, but nobody knows it.

I gently take her hand and whisper, ‘Don’t worry. I’ve got you now’.

We walk past the girl who is responsible for the bright red mark on my younger self’s arm.

We could use the law of retaliation and give the little bitch an eye for an eye, but this is about healing, not revenge.

So we place the girl’s image into an imaginary balloon and let it float up into the sky.

Then we walk off into the cloakroom where a solitary coat is hanging on its peg.

I remove the coat and replace it with a well-worn mask.

We don’t need it anymore.

We’re free.

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

We all mask.

Masking is not just an autistic thing. It’s a human 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 died unexpectedly. The problem was that I’d been trying to run my entire 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.

It’s the tidal wave. Or it’s a hurricane.

It’s catastrophic.

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.

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 music.
  • I was constantly retching and feeling sick.
  • 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. The kind of crying where the tears just happen without any effort at all. I actually prayed for the anxiety to come back. I could fight the anxiety, you see, but depression doesn’t fight fair. It consumes you. It numbs you. It steals every ounce of joy you ever had until you feel that nothing is worth living for, even when there is.

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

 

 

 

We Are Not All ‘A Bit Autistic’

‘We’re all a bit autistic.’

I’ve heard this a few times. That, or ‘We’re all on the spectrum somewhere’. Whether or not it’s intended to make autistic people feel better (or less different) what it actually does is trivialize the problems that we face on a daily basis.

Autism isn’t a life choice.

When I talk about my difficulties, some people say, ‘Well, everyone’s like that sometimes’ – I have to stifle the urge to punch them in the crotch. (I’m not pervy – I’m just really small)

Key word: ‘sometimes’ – meaning occasionally, not ALL of the time.

People can’t be ‘a little bit autistic’. You’re either autistic, or you ain’t. Simples.

‘Well, we’re all different aren’t we?’

Yes, we are all different, but being different doesn’t make you autistic.

So let’s bust this myth by simplifying into a single sentence.

Autism, is a neurological difference.

And repeat it.

Autism, is a neurological difference.

Once more?

Autism, is a neurological difference.

Unfortunately, there are those who reduce autistic people’s struggles to things that can be overcome or, better still, cured. Some people claim that there is a cure for autism, like the parents of autistic children who genuinely believe that pumping bleach into their child’s bottom will ‘rid them of their autism’. These insane idiots call it ‘a cure’. I call it abuse.

This is the mentality we have to deal with.

People misunderstand. They are dismissive. Or they are abusive. They try to compare their occasional ‘off days’ to the struggles which affect autistic people every second of every day.

Day after day.

Week after week.

Month after month.

Year after year.

Decade after decade.

Until they die.

If everybody were a ‘bit autistic’, the world would be autism friendly 24/7, not just for an hour once a month in participating venues.

If everybody were a ‘bit autistic’, the word ‘autistic’ wouldn’t be used as a insult.

For Example: “Beach boys songs are all just autistic screeching” (Twitter)

Wouldn’t It Be Nice if people didn’t use the term ‘autistic’ as an insult?

See what I did there?

Alas , the author of the tweet doesn’t know that The Beach Boys are one of the most critically acclaimed, successsful and influential bands OF ALL TIME. Obviously, the tw@tspanner wouldn’t know harmonising if it bit him/her on the arse! God Only Knows what kind of crap they listen to. You get me?

Here’s another one..

Jenna Jameson“Meanwhile his legion of autistic, screeching followers make the most disgusting, sexist, hateful attacks on me because I happen to do porn in the past. #Hypocrites (Twitter)

A Tweeter replied: “Autism is not an appropriate word to use as an insult. Please reconsider.”

Jameson relied: “I said autistic screeching, stop looking for a reason to be offended”

Jameson picked him up on a technicality, but she’s missing the point, no? Obviously, she didn’t get the memo that it’s OFFENSIVE!

When it comes to ‘screeching’ – neurotypical girls win hands down.

Case in point: Three teenage girls at a well known fast-food restaurant (one milkshake between them)

One was pacifying herself with a massive candy dummy.

One appeared to be auditioning for BGT.

The other was downing the milkshake while the other two were distracted.

Then, in walks ‘Kenzie’ and they unanimously start screeching like bats.

Kenz? He didn’t know they were alive. He paid for his burger, fries and Coke and fucked off out again leaving the three girls finger-drawing ‘I heart you’ into the misted up window.

The point is..

Search Results

No results for ‘neurotypical girls screeching’.

See?

If everybody was a ‘bit autistic’, the abusive ‘autistic screeching’ meme wouldn’t be ‘a thing’.

Or this..

“A woman who has Asperger’s syndrome was “forcibly removed” from a screening of her favourite film by cinema security staff for “laughing too much”.

If everybody was a ‘little autistic’ would the audience member have reported her?

Would the security guards have thrown her out like a piece of rubbish?

Would other people have acted like total tw@ts?

She said that she frantically tried to explain that she was autistic but a member of the audience shouted “you’re retarded”, while another told her to “shut up b****”.(The Evening Standard)

FYI, If these things were said after she announced she was autistic – technically it’s a hate incident.

In comparison, those girls in the well known fast-food restaurant were being disruptive. They were playing music on their phones and it was louder than the music coming out the restaurant speakers, but nobody complained. Nobody got them thrown out.

When it comes to everybody being ‘a little autistic, one of the best analogies I’ve seen came from Facebook saying that it’s like pregnancy. Most people (including men) will know what back ache or throwing up feels like. Do we hear people saying, ‘We’re all a little bit pregnant?’ No, we don’t because it’s a RIDICULOUS thing to say!

If you’re a woman, you might understand the resentment one feels when husbands/partners attempt to compare something trivial (like a stubbed toe) with the pain of childbirth? You want to bludgeon them to death, right? Well, it’s like that. You hear someone say ‘We’re all a bit autistic’ and you start looking around for things to hit them with. Am I wrong?

Maybe when people say they’re a ‘little autistic’ it’s because they like the idea of the ‘quirks’ bit? That’s fine, but I’m guessing they wouldn’t want to be bullied for it? Or experience the mental illness that comes with trying to survive in a confusing world? Or the rejections in the workplace? Or the chronic conditions? Or the hostility from the general public? And I’m guessing they wouldn’t want to be wiped off the face off the planet for being a minority group, eh, Jenny McCarthy?

If you don’t know what I’m on about, Google the semi-plastic gobshite’s #endautismnow campaign.

When a person says ‘We’re all a little autistic’ they are either trying to show solidarity or trivialising a someone’s struggles – either way, it’s not appropriate or helpful.

To put yourself in my size 4s you have to have known fear, pain, humiliation and a disconnection from those around you. You need to have worn a ‘mask’ to the point that you no longer know who you are. You will have had two separate eating disorders and numerous episodes of anxiety and clinical depression until you completely and utterly lose your shit in your mid-forties. At the same time, you need to have succumbed to a physical illness that limits your already limited life and will do for the rest of your days. From that moment on you have to try to exist in this confusing world in an even more fragile and vulnerable state than you were when you were heaved out of your mother’s fanjo!

Not all autistic people have this kind of back-story, but most do, especially those who were diagnosed late in life. And let’s not forget those troubled souls who are no longer around to tell their story because their lives were ended at their own hands or by those whose duty it was to care for them.

The problems are not with being autistic per se – it’s more to do with how the world preceives us and it’s about trying to survive in a world that isn’t autism-friendly – such as being called a retard when you’re enjoying yourself at the cinema.

While I appreciate that everybody goes through difficult times (and people become ill) it’s not comparable to living life with a brain that processes everything differently. How can it be? Autistic people are born at a disadvantage to most other people, simply because of the way their brain is wired.

If you can’t identify with autistic people’s life experiences, don’t try and claim our identity and, please, don’t belittle the effort it takes for us to exist by saying: ‘We’re all a bit autistic’.

Remember, autism, is a neurological difference.

Stand beside us.

Stand up for us.

That’s how you can support us.

Reasons I Hate Summer: Flies

Flies are evil b@st@rds. They are evil enough when there isn’t a heat wave, but extreme heat brings on a whole new level of evilness, no?

Bins stink. It’s part of being a bin, but the heat is making the bins extra-stinky and it’s attracting flies by the trillions. This wouldn’t be as much of a problem if my bins were at the end of a very long garden, but I live in a terraced house with a very small back-yard so my bins are well within whiffing distance – as are everybody else’s.

At this time of year there is always the danger of maggot infestations. Makes your skin crawl doesn’t it? Take it from one who knows: when you’ve battled the maggot-massive, you NEVER want to do it again!

Plus, it puts you off eating boiled rice. For ever.

You get me?

The fly is Ninja fast. You’ve opened and closed your bin lid in record time, but there’s always one who’s the Usian Bolt of the fly world. It’s flown in before you know it and if it’s a female, she’ll dump around 75-100 eggs onto the bags of rotting food. The next day, you wander out in your slippers with a bag full of potato peelings and you see that some tit has thrown loose rice in your bin. This isn’t your doing. You don’t throw food in the bin like her up the road. You’re posherer. You’re just about to throw a strop when you notice that the rice is ALIVE.

You’re torn between wanting to scream in horror and not wanting to draw attention to your BIN OF SHAME because having maggots is like having nits, as in, it can happen to anybody, but nobody wants to admit to it, right? Luckily for me, I’ve got a massive manhole. NOT a euphemism! I’m referring to the manhole in my back-yard which is indeed large enough to fit a man in should I ever need to conceal a body!

I am joking, of course.

Or am I?

Moving on..

Got a lil maggot problem? Chillax! (are people still saying that?) I have tips!

The Maggot Slaying Kit

  • A pair of Marigolds
  • Hot water
  • A massive bottle of industrial strength bleach
  • A brush that you’ll never want to use again
  • A bag to retch into

Don’t make the rookie mistake I did during the Great Maggot Infestation of 2015. I just hosed them down the drain. I didn’t kill them, innit? So some of them crawled up through the gaps in the flagstones and by ‘some’ I mean close on a hundred – all wriggling across my patio..

Maggots, EVERYWHERE!

For the Great Maggot Infestation of 2016, I was better prepared. I par-boiled the effers in the bin with a few shots of Domestos, then I swilled em down the drain.

Want to learn more about flies?

You know you do!

Fly Facts

1. Flies regurgitate digestive juices onto food so they can eat it. So if a fly lands on your quiche, it’s probably best to bin it. *boaks*

2. Rumour has it that flies do a poo EVERY time they land. (I’ll leave THAT one with you)

3. Flies are disease ridden arse-holes. Salmonella, E.coli. You name it, they spread it. For this reason, you should never leave food out uncovered. Not unless you want to defecate yourself dry?

4. Flies can walk upside down – coz they freakeh!

5. Flies have 360 degree vision (much like my mother) so they can see behind them. This would explain why the arseholes fly off whenever I creep up on them with a can of Raid.

6. Flies live for about 30 days, though their lifespans are shortened dramatically if they fly into my house.

7. Flies can lay up to 500 eggs in their lifetime – most of them in my bin.

8. Flies are agile and fast. That’s why you can drive yourself demented trying to swat the motherfunglers with a tea-towel.

9. Flies lay their eggs on rotting food and poo. Flies round shit, right? This is so that their offspring have something yummy to munch on when they hatch.

10. BRB – Gone to vomit.

Yo. Humanz. Am gonna crap on your Quiche!

So you see, there is much to despise about flies. Those buztards are bad news. That said, I do try to give them a fighting chance. I will open a window or a door, but if they don’t take the hint they get taken down with a tea-towel or a blast (or three) of Raid.

Meanwhile, here’s the question you’ve always wanted to know the answer to.

Why do flies do circles under your lampshade?

The flies patrol well-defined airspaces underneath landmarks like lampshades. … Male flies approach a landmark from below and, in the absence of other flies, settle to patrol an airspace close to the landmark. A second male approaching the same landmark chases, or is chased away by, the patrolling fly when it comes too close and may eventually settle to patrol 10–30 cm below the airspace occupied by the first fly. … The position of male patrolling stations relative to the landmark suggests that females might arrive at landmarks from the side (and not from below, as males do), thus crossing the dorsal visual field of patrolling males.

Source: Jochen Zeil. The territorial flight of male houseflies (Fannia canicularis L.) Behavioral Ecology and Sociobiology. August 1986, Volume 19, Issue 3, pp 213-219

In simple terms, it’s blokes fighting over girls up town on a Saturday night, innit?

Fly Porn.

But enough of fly mating rituals. Back to fly annihilation, yes?

Prevention is key to keep maggots at bay, so here are some tips.

Fly Control Tips

The first step in fly control is exclusion and sanitation. If your house is a massive bin, and you like to have your windows open – YOU’RE GOING TO ATTRACT FLIES! However, even if you are shit-hot with sanitation and you’d rather drown in a pool of your own sweat than open a window, you will still get the odd fly who fancies its chances, so here’s what you can do.

  1. If you do find a fly in the house, try to entice it out of the window or door. Life is life, right?
  2. Failing the humane approach, confuse the shit out of it by using two rolled up newspapers instead of one.
  3. If that doesn’t work, give it a murderous blast of Raid.

Now, I am so fly-aware, those arsewipes don’t have time to shit, let alone reproduce!

I take no pleasure from being the fly-finder general. I think it’s sad to watch any living thing die, but we have to remember that flies are not cutsie kittens. Or fluffy wuffy gerbils. They are nefarious spreaders of disease. They will crap on your food and make the world fall out of your arse. Or they will drive you to the brink of insanity with their incessant BUZZZZZZZZZZZZZZZZZZZZZZZZZING. Plus they really know how to take the piss when it comes to picnics and BBQs. You get me?

Roll on Autumn, I say.

 

Autism: Highly Functioning?

There’s a label when talking about autism.

‘Highly-functioning’.

It’s a term intended for professionals, but one that is used generally. In this post I’m going to try and illustrate why hearing this term makes me scream inside.

You can dress yourself? You’re highly-functioning!

I can dress myself, but sometimes I wear those same clothes for days because the thought of having to put something ‘new’ on makes me anxious. I do change my undies daily though – in case you were wondering?

I have sensory processing issues and hate to feel constricted in any way – so neck-lines, waistbands and sleeves have to be just right or my brain snaps. Also, I can’t tolerate anything that isn’t almost exclusively cotton. How I survived the seventies with it’s obsession for nylon, I’ll never know. Maybe that would explain whay I was a little shit most of the time?

I can physically dress myself, yes, but it’s a sensory nightmare.

You can wash your own hair? You must be highly-functioning!

I can physically wash my hair (though it’s getting to be more challenging now with the fibromyalgia) but it will be 80% dry-shampoo by the time I do wash it – which will be when I can’t physically get a brush through it. Or my scalp itches -whichever comes first!

I have a mobile hairdresser who comes to sort my hair out a couple of times a year. Even though she’s lovely (and technically brilliant) and I always look forward to seeing her – I still get the inevitable migraine which comes with having to make conversation. Recovery usually involves painkillers and at least three hours sleep.

You can apply make-up? You’re highly functioning!

I’ve been wearing make-up since 1983, but it’s a mask. Without it, I feel vulnerable. Might as well be wandering around in my bra and pants, innit? However, my routine rarely varies. I use the same products every day. Even if I go completely nuts and buy something new, I invariably revert to my old stuff because it’s familiar.

I don’t like brushing my teeth as they are sensitive as hell, but my fear of having fillings and extractions overrides my sensitivity to brushing.

Just because I can do something doesn’t mean that it doesn’t cause me discomfort or distress.

I used to be the opposite way. I bathed every day. Sometimes twice a day. Occasionally, three. It’s a miracle I’ve any skin left! My hair got washed daily, sometimes twice. It wasn’t necessary. I was just a nutter. Then again, my personal care has always been more psychological than beauty or fashion.

You clean your house? You must be highly-functioning!

Again, it’s all about the realms of what’s considered ‘normal’.

I used to clean obsessively. I would clean the entire house (including hoovering) every single day. The living room carpet got hoovered at least three times a day. I mopped the kitchen floor just as frequently and disinfected everything that was wipeable. I mowed the lawns as many times as I thought I could get away with without coming across as lunatic, but I admit that I once mowed the same lawn twice in one day! That’s not gardening. That’s a bit nuts!

As soon as a dandelion reared it’s head, I was out there with my Flymo. Then I’d be on my hands and knees cutting round the edges of the lawn with a pair of scissors. Yes, I was that person!

The anomaly is that I love to see dandelions elsewhere..

I realise now that it was about control. The same way my eating disorders were about control. I just didn’t understand why life was so hard for me. So I’d scrub, disinfect and mow until the late hours. Then, I’d numb my brain with homebrew. As the Smiths song goes: “I was happy in a haze of a drunken hour but heaven knows I’m miserable now.” For a while, the world was tolerable. I could do this life thing, yeah? Then I’d overdo it. I’d vomit and the next morning I’d wake up to find the world was as confusing as it ever was.

Vomiting aside, my corner of the world HAD to be perfect to compensate for the chaos outside my front door and that inside my head. Nowadays, half an hour of light housework equals three hours resting on the sofa. I am completely the opposite way, but it’s not by choice.

You do your OWN shopping? Are you sure you’re autistic?

I’ve always found shopping difficult because of the social aspect, sensory overload and the range of choice. Choice, you see, overstimulates my brain and the more anxious I become, the more I am unable to make choices – even simple ones like between coffee or tea.

A super-functioner and I can’t make a simple decision between tea or coffee? What am I like?!

Nowadays, I have the added joy (not) of fibromyalgia which limits me even more. For the days when I can’t cope with the supermarket, I do online shopping.

You can drive? Super-Functioner!!

Fancy that, an autistic person with a driving licence!

I was determined to drive because I struggled so much with public transport. Lesser evil, right? With me, it’s always been a case of one fear overriding another. However, getting myself from A to B is a different matter entirely..

For example: Recently, a 20 minute trip to Hobbycraft involved me virtually ‘driving’ the route via Google street maps, even down to checking out the exit route in the car park. Who does that, right? It took me twenty minutes, but it was necessary in order to familiarise myself with the route.

Diversions bugger my brain up. I’m still dealing with a diversion from last week! I NEED to be able to get into my car and drive the same route as I always do, but life isn’t so simple, is it? It creates diversions and obstacles all of which have a knock-on effect with me.

I establish routines and end up going to the same shops and parking in the same places which makes my world safe, but small.

I’m also crap with directions and distance. My sat-nav’s most used commands are ‘When possible do a U turn’ and ‘Route recalculation’. Nuff said?

Some days I can’t drive at all due to brain fog. Better safe than sorry, right?

You can communicate verbally? That makes you highly-functioning!

I can talk. I had no speech delay that I am aware of. I love words, only I prefer to type them. I’m much better at communicating via the typed word. But even then, it’s not simple, as my need for perfection means that my posts are edited 35 plus times! I can’t just ‘knock’ a post out, like most bloggers can.

When it comes to actual speech, I sometimes become aware that my voice has become ‘monotone’ and I have to prompt myself to change pitch. When I’m excited, I talk too fast. When I’m exhausted, I talk too slowly and my brain ‘buffers’. As in, something gets lost between the thought process and communicating what’s in my head.

Then I have meltdowns where I have this kind of ‘verbal diarrhoea’ thing going on. Or I stop talking altogether. This is known as a ‘shut-down’.

Many of us have co-morbid conditions as well as being autistic. It’s life farting in your face, then following through. As if life isn’t hard enough, right?

I also have Fibromyalgia which means I am in some level of pain or discomfort all the time. I also have OCD going on, which is a pain in the arse.

Fibro what? Isn’t that something you take for constipation?

No. That’s Fybogel!

Having fibromyalgia means that I am less able to function than ever and I will have to learn to live within even more limits as this illness is chronic and life-long once it’s established. I also most likely have Dyscalculia (number dyslexia) which makes life difficult as maths is such a necessary part of it. I’ve probably been short-changed out of hundreds of pounds in my time. However, I stand by my argument that trying to learn algerbra was a waste of sodding time!

Ooh. You have a learning difficulty? That makes you low-functioning then?

I was in the top set for English. I scored 98% in my history mock exam because I was (and still am) obsessed with the past. I was also in the bottom set for maths. So, you tell me?

I give up. I don’t know what you are!

I’m an individual.

The term ‘highly-functioning’ belittles how hard it is to get through every day. Just because I don’t need help putting my knickers on, it’s presumed that I function ‘highly’? In reality, every day takes a great deal of effort simply to exist. I’m always in some level of pain or anxiety – even in my sleep. Some days I barely function as migraines wipe me out or I reach my capacity to cope with anything unfamiliar or taxing. If you’re wondering what fibromyalgia has to do with autism. The answer is – EVERYTHING! It’s relative because a life of anxiety makes autistic people prone to conditions like fibromyalgia.

Yes, I can physically do stuff, but it comes at a cost, both physically and mentally.

I get overwhelmed quickly. I need regular breaks from social media/internet due to information overload. What energy I do have is reserved for my role as a mother. It’s primeval, because despite my health, I ensure that my son’s needs are met. I know the days of obsessively cleaning are gone because I just don’t have the strength and that causes me considerable distress, but it means that my obsessions shift elsewhere – as I discovered when I developed heath anxiety last year.

The term ‘low functioning’ is equally as belittling because in labelling someone ‘low-functioning’, society lowers it’s expectations of this person. They are pitied, rather than respected. Or worse, ignored. Just because a person needs help with daily care, doesn’t mean they can’t contribute to the world in a meaningful way!

A highly-functioning person might barely be able to function physically (or mentally) on some days, but there are expectations of them because of a term which most people take at face value. This is why we burn out repeatedly until we become chronically ill.

Is this really functioning highly?

Some days I barely function at all.

I am spending more and more time in survival and recovery mode and if you don’t understand those terms, lucky you!

The term ‘highly functioning’ implies that I am successful at life. That I can do things with ease?

To those who take one look at me and say, ‘You’re autistic? You must be highly-functioning then!’

COME AND LIVE MY LIFE FOR A WEEK. THINK MY THOUGHTS. FEEL MY FEAR, PAIN AND EXHAUSTION. TOUCH MY F**KING PLUGS UMPTEEN TIMES BEFORE YOU CAN LEAVE THE HOUSE – THEN TELL ME I’M FUNCTIONING HIGHLY!

*hyperventilates into paper bag*

The point of this post is to show that being physically able to do something comes at a cost. I’ve reached the point where I’ve worn myself out and I now I’m constantly ill.

If you look close enough, you’ll see the exhaustion in my face. You might notice the way my body slumps with fatigue. You might even see a tear fall unchecked or hear a door slammed in frustration. These are hints to an inner chaos – a chaos I’ve known all my life. Only death will bring me any real peace, but I’m not suicidal. I’m in no hurry to leave this life because there are souls who that make this struggle worthwhile. Three of them call me ‘Mum’ and I’ll fight until my last breath to be with them.

And it is a fight. A daily battle to exist, but it would be a lot easier if people would only take the time to respect us for who we are.

High or low-functioning – the terms are misleading and unhelpful. What we are is individuals.

All images are in the public domain via Creative Commons

 

 

 

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!

Fibromyalgia and the Heatwave

Just in case you hadn’t noticed, we are in the middle of a heatwave.

It’s not even 11 am and it’s 21 degrees! That’s, like, CRAZY! Well, it is for England, anyway.

People are walking around semi-naked (not always a good thing) and if I see one more f**king fly, I will scream!

‘Bastard’. Also Known as the Common House Fly.

Every year (around this time) we get a maggot infestation in the bins, because no matter how fast I am in putting our rotting food into the compost bin, those bastards are quicker. They are Ninja fast and reproduce just as quickly. Our bin becomes a maggot utopia. That is, until I theatrically snap on the rubber gloves and introduce the maggot-massive to my friend, Dom Estos!

Anyway, enough about flies.

Are you still there?

Have you gone to vomit, or check your bins?

Back to the weather..

Heatwaves make me feel shit. This is because my body can no longer regulate temperature. Have I mentioned that my body hates me?

For healthy people – hot weather equals sunbathing, fun, eating charcoaled sausages, collapsing chairs, sunbathing and copious amounts of alcohol.

For me, it’s migraines, sinusitis, brain fog, palpitations, fatigue and IBS.

Not exactly Club Tropicana, is it?

The magic temperature that suits me is ‘mild’. Whenever I hear the weatherperson say ‘mild’, I want to kiss the TV/radio/whatever. On hearing the words, ‘cold front’ or ‘heatwave’, I take myself off into my room and adopt the fetal position.

Please, don’t start me on rain!

There’s no scientific proof that weather affects fibromyalgia, but those who suffer with the condition will verify that their bodies are like barometers when it comes to the weather.

Slight diversion: We had a barometer when I was a little girl back in the 1970s – it was a reindeer with the barometer bit where it’s chest should have been.

I’ll let you into a little secret: I was worried that Father Christmas was missing a reindeer!

Or was this what happened to them when they got too old to fly?

Worse, I had to say goodnight to ‘Rudolph’ every night as I passed him on my way up to bed!

‘N’ night decapitated Rudolph with the glassy staring eyes. Please don’t kill me in my sleep!’.

Childhood trauma aside, I was fascinated how the dial swung from rain to fair etc. These days, I don’t need any atmospheric pressure measuring instrument (antlered or not) to let me know when the weather is going to change because my body tells me when the weather is going to be bad. Or good.

Mine has three weather terms: Good. Changeable. Shite.

Thanks to the heatwave my barometer is firmly in the shite zone. I feel ill. I’m miserable. Even the dog is giving me a wide-birth! Mind you, she’s fairly miserable herself. She just lies about on the floor looking pathetic, not that I blame her.

However, that cool kitchen floor sure looks inviting, no?

Anyway, here are some gratuitous tips of how not to die in the heatwave.

  • Stay indoors. (obvs)
  • Fill your home with fans. (log onto Argos and buy their entire stock)
  • Drink water. LOTS of water. (Dehydration will make you feel even crapper than you already do) (Fact)
  • Stand under a pleasantly cool (not cold) shower and refuse to move. (until someone needs a poo)
  • Do your outside activities in the morning or evening.
  • Live on salads.
  • Keep your clothing lightweight and floaty.
  • Go bra-less if you’re confident you won’t fall over your own nipples.
  • Go commando. (Women suffering from post-menopausal ‘drip’ might want to skip this one)
  • Find a nice north facing room and live in it until the weather breaks.
  • Borrow the washing-up bowl. Fill it with cool (not cold) water and stick your feet in it.
  • Lie down on the cool kitchen floor (with or without the dog) If you have an old one like mine (dog, not floor) leave plenty of space between you as geriatric dog breath could put you into a coma – leading to possible death and you’ll decompose a hell of a lot faster in this heat! (think of the smell!)
  • If all else fails, lie on the floor in your undies.

If you’re suffering in this heat, I wearily raise my fist to you in a show of sweaty solidarity.

If you saw a heat wave, would you wave back? ~ Steven Wright

The Fibromyalgia Years

Health brings a freedom very few realise, until they no longer have it.

It’s true. Most of don’t appreciate our health until it’s gone. It’s only when we become ill, that we understand what a humongous loss it really is.

Aside mental health problems, I’ve always been relatively fit and healthy. I would think nothing of decorating an entire room (from top to bottom) in one day. This would include a couple of hours kip in-between AND working part-time. However, six years ago my mum died (suddenly) and I’ve felt ill ever since.

I’ve had tests done on my body from brain to bum and the results have failed to show anything wrong aside low vitamin D levels. Blood tests? Put it this way. The NHS has more of my blood than I do! Only I never got tea and biscuits.

I’ve been told, time and time again, that it’s ALL down to anxiety. Or age. (I’M 47!!)

I’ve told doctors (time and time again) that something physical is driving the anxiety – not the other way around.

Turns out, I was right all along.

The Discovery

A few weeks ago I was at the doctors. Quelle surprise? Originally, this appointment was to whinge about my painful legs, but I’d had an horrendous night sleep (less) wise, so I decided to moan about that instead. I suggested that my insomnia could be connected to my congested sinuses – a condition I’ve been complaining of for the last two years. So I came away with a prescription for a steroid nasal spray and a referral to an allergist with the warning that the waiting list is massive and I probably won’t get an appointment until about 2046.* Half an hour later later, I snorted some steroid up my nostrils and waited for the ‘pipes’ to clear.

At the same time, I noticed a tight feeling in my chest. I’ve had it before, so I didn’t fall down the rabbit-hole of health anxiety. My therapist would be proud of me, no?

I’m no stranger to chest pain. I’ve had tingling, tightness, pain and muscle spasms galore, but my heart is allegedly healthy. The symptoms usually disappear after a few days to be replaced with pain elsewhere in my body. This time, I thought it could be the steroid, so I stopped taking it and made another appointment to see the GP. She didn’t think this was the case because the nature of steroids are to open the airways, not the reverse. However, she did agree that it seemed too much of a coincidence for it not to be related and so advised not use it again. A week later, I still had the tightness and was struggling to breathe, especially at night.

Meanwhile, I happened to notice that a lot of autistic people had fibromyalgia or ME in their bios. I’d heard of ME, but didn’t know anything about fibromyalgia. So I researched it and there was EVERY SYMPTOM that I have been going to the doctors with for the past six years – including tightness in the chest! (Technical jargon? Costochondritisnoncardiac chest pain or musculoskeletal chest pain)

It was a ‘light-bulb moment’, because I knew that I had finally found out what’s wrong with me.

Armed with a sheet of A4 paper with Fibromyalgia symptoms, I limped off to see my GP. It wasn’t the one who’d prescribed me the steroids (she was on leave) but I’d seen this one just as many times with other symptoms. He studied the paper and said, ‘Yes, fibromyalgia has crossed my mind, but we need to do some elimination tests to rule out other stuff’.

The ‘other stuff’ (such as rheumatoid arthritis) was ruled out and last week I was formally diagnosed with fibromyalgia.

*hallelujah*

Maybe, if I’d have seen the same doctor over the past six years, he/she would have reached this conclusion earlier? As it is, I’ve seen three doctors in all, so nobody had the whole story unless they took the time to trawl through my numerous notes and, trust me, nobody has that kind of time. If patients notes were still in paper form, they’d need a wheelbarrow to cart mine around. However, had they have read through them, they would have probably realised that the following symptoms (in the absence of other conditions/diseases) suggest fibromyagia.

  • Chest pain
  • IBS
  • Food sensitivities
  • Allergies
  • Medication sensitivities
  • Fatigue
  • Muscle spasms
  • Burning mouth
  • Insomnia
  • Palpitations
  • Migraines
  • Neck and back pain
  • Abdominal pain
  • Congested sinuses (for two years)
  • Inability to control body temperature
  • Low Vitamin D levels
  • Pins and needles in arms, hands and feet.
  • Dizziness
  • Headaches
  • Brain fog

So, I now know what’s wrong with me. I have fibromyalgia. So what does this mean?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”. Fibromyalgia Syndrome (fibromyalgia for short) is a common illness. In fact, it is as common as rheumatoid arthritis and can even be more painful. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. – FMA UK

In simplest terms, it’s a life of shite in varying degrees.

Fibromyalgia isn’t a disease and it’s not life-threatening (thank fuck) but it is limiting.

Imagine having toothache. Painful, right? You can’t enjoy life, but you know that the dentist will numb you up, yank the offending tooth out of your mouth and the pain will go away. With fibromyalgia, the pain just moves to another area of the body. Sucks, eh?

I’m frustrated with my lack of mobility. Some days, I struggle to walk. This is especially the case in cold and damp weather. I live in England, so that’s pretty much ALL of the time.

After lying or sitting, I’m stiff as a board and I kind of have to shuffle my way off chairs and roll out of bed sideways, which is about as alluring as athletes foot.

I can’t do tasks which involve looking up without them causing me severe pain in my neck.

Sitting in the car can be painful because of my lower back and my neck hurts with every jolt of the vehicle.

Or I get migraines which wipe me out for days.

I could go on, but I’m starting to bore myself. You get the picture, right?

After the initial euphoria of getting an answer to why I’ve felt so shit for the last six years, the reality is setting in: This feeling shit? It’s basically me for the rest of my life.

*sound of balloon noisily deflating*

I had this fantasy that my anxiety would decrease, my menopausal symptoms would level out and I would get some quality of life. I would get the old me back. Little did I know that the anxiety and being menopausal were masking what was really wrong as some of the symptoms overlap and once you’re labelled as a hypochondriac, it kind of sticks.

I feel guilty for feeling sad because my friend would have given anything for her diagnosis to be fibromyalgia instead of cancer, but this is how I feel. This is my reality. Fibromyalgia won’t kill me, but everything is relative and living with long-term (and constant) pain affects you mentally as well as physically.

Also, I’ve had two life-changing diagnoses in two years. Autism and now this, so it’s natural to feel a little overwhelmed, right?

I accept that, being highly anxious, I was probably always going to develop some kind of stress-related illness or condition. I know this could be a lot worse and no doubt it will be if I don’t learn to chill the fark out. I’ve demanded a lot from my body over the years by constantly flooding it with stress-hormones, but I do believe the sudden death of my mother was the trigger for this condition.

Stress caused this.

Stress makes my symptoms flare up – as does the shitty British weather.

My body has deployed the SOS flare. That red glow in the sky? It’s not the sun setting, folks – it’s my body begging for help.

I mentioned earlier that I used to be able to decorate a room in one day? Now I do half a wall and I’m in pain for a week. It’s frustrating not to be able to do what I want to do, when I want to do it. I will adapt, but I need time to accept this version of me. The knackered one. It is what it is. I can only try my best to limit the damage and view this as a warning. My body’s way of saying, ‘Do something about your stress levels or die early of a heart attack, cancer or stroke, dear’.

I’ll find the humour in the situation, as I do with most other challenges in my life. At least I can still laugh, only not too hard cus it hurts. Until then, I need to have a little sulk for the loss of the person I once was.

RIP, old me.

The moral of this story is to listen to your body. The NHS is wonderful and doctors are hard-working and magnificent, but they are not infallible. They don’t get things right every time. Doctors are great with disease and emergencies, but not so great when it comes to ‘invisible’ conditions which require a bit of detective work and, ultimately, nobody understands our own bodies better than us, right?

*Slight exaggeration.