Fibromyalgia and Social Media


I have a love/hate relationship with the fibromyalgia groups on social media. Sometimes I’m comforted by the knowledge that people understand how fibromyalgia feels, and sometimes I’m frustrated by the amount of negativity and rudeness towards those who are sharing their stories in order to help others.

Fibromyalgia is a horrible condition – no question about it. Those who suffer with it didn’t choose to develop this crap condition, but we do get to choose our attitudes and I generally choose positivity because it’s healthier.

Don’t get me wrong. I understand the need to vent on social media. It helps to know that people understand what we’re going through. It also helps to have somebody offer a virtual hug on our bad days, but if all we’re doing is being negative – and feeding off the attention which our negativity attracts – then we could be doing ourselves more harm than good because it can become an addiction like any other, and all it needs are a few words..

Life sucks. I’m fed up with everything. No one cares.

Que the sympathetic comments and crying emojis…

My perception is this..

Life sucks – Yes it does, and shit happens to everybody.

I’m fed up with everything – Only ‘we’ can change this.

No one cares – They do, but sometimes people don’t know how to be around people who are unwell – especially when it’s an invisible illness like fibromyalgia.

Logging onto loads of sympathetic comments comforts us for a short while, but it doesn’t change our situation.

I’m continually seeing members shutting down anybody who tries to be positive. If somebody posts a positive quote, they will ruin it with their negativity, and a thread which started in positivity ends up being deleted.

Example: A lady recently posted that she’s been ‘blocked or kicked off’ several fibro groups because of her ‘weight loss success story’.

Blocking somebody because they shared a success story?

Am I the only person who is flummoxed by this attitude?

I believe her because I’ve seen it. Mention the words ‘weight loss’ and ‘exercise’ in a positive way and the lynch mob are out in full force – before you know it, you’ve a metaphorical pitchfork up your arse!

I understand the reluctance regarding the suggestion of exercising to help with fibromyalgia because I had to stifle the urge to right-hook the first doctor who suggested it to me, but I can verify that exercise can reduce pain. Almost five months on – I’m still exercising as much as I can!

It’s not a cure. I still have fibro. I haven’t been able to exercise for four days because I’m having a flare up where all my joints are painful, I’m having migraines, and I’m fatigued. Coincidentally (or not) my anxiety has crept up and I’ve been having nocturnal panic attacks again. See, this is the connection between stress and fibro.

The other annoying aspect of fibro-group life is that people think that every single thing that goes wrong with their bodies is down to fibro..

*graphic image of a yellow toenail*

“Is this fibro?”

No. It’s a fungal infection.

*graphic zoomed in shot of a zit*

“Woke up with this spot on my face. Is it fibro? “

It’s a zit mate.

‘The binmen didn’t empty my bin this week. Is it fibro?’

Ok, I’m being ridiculous now, but you get my drift?

Then there are occasions where people will post alarming pictures of something going horribly wrong with their bodies..

*graphic picture of a swollen foot*

Woke up with a swollen foot. Any ideas what this is?

I don’t know cocker, but ya foot’s five sizes bigger than the other one, and it’s purple. Just my thoughts, but maybe you’d be better off phoning your GP (or an ambulance) rather than relying on fibro ‘warriors’ triage?

The most alarming one is when people post about chest pain asking what we think it is. You don’t piss about with chest pain that’s new to you. Yes, there is a condition that is common with fibromyalgia (costochondritis) but this needs to be diagnosed by a doctor. People should not be wasting time on social media asking people what they think it is! You could be having a heart attack and people are giving it the, “Yeah, I get that all the time hun – Costochondritis. Take some Ibuprofen. Be fine x.”

Thankfully, the majority of people will urge the group member to seek urgent medical help! (the one with the chest pain, obvs)

To be fair, I’ve had health anxiety in the past, and it’s likely that a lot of people in the fibro groups have it – which is why they’re constantly melting down over trivial stuff. I get it. I’ve been there, and it’s not funny at the time. But I can see the humour in it now as I look back – like the amount of times doctors have probed my arse because I was, like, totally convinced I had bowel cancer. My poor bum-hole has had more fingers up it than Sooty and all they ever found were some piles and an otherwise fabulous looking colon! I got my knickers in a right old twist for sure, but it was a valuable lesson to learn that anxiety can take us to some dark places if we allow it to.

Speaking of humour..

There are those who frown on humorous fibromyalgia posts declaring them ‘disrespectful’ to fibro sufferers?

Laughter has been scientifically proved to be good for us, so up yours, cockers!

Humour can be found in most situations. Granted, there are some things which can never, ever be funny, but fibromyalgia isn’t one of them. Using humour lightens up the situation. Most importantly, it takes away fear which in turns reduces stress, and stress makes pain worse.

It’s ok to have bad days where we just say, ‘You know what? Positivity can do one today. I need to wallow in my pit and binge-watch Midsomer Murders.’ I think it’s healthier to let some crap out now and then. All I ask is that people think before they post that negative comment because the person behind the success story has had to work their arse off to get there, and why the hell shouldn’t they be proud of themselves? Sure, I can understand how a success story can amplify our own misery if we are in a bad place and hope seems so far away, but for other people it will mean hope and could be the catalyst which changes their lives!

Let Autistic Soul tell you a little story…

Anybody who has really read this blog will know that I had a mental breakdown, and I do mean a breakdown.

My brain didn’t work.

My body didn’t work.

I was overrun with stress hormones.

I thought I would never get better!!


I read EVERYTHING I could on anxiety.

I watched videos.

I listened to podcasts.

I dusted off my Claire Weekes books.

I joined online anxiety groups.

As is the way of most autistics, I had to understand what was happening to me!

Do you know what gave me the most comfort at 3am in the morning?

It wasn’t ‘Bob from Birmingham’ who was up at the same time as me and totally going off on one about the unfairness of his lot..


I empathised with Bob, but it was the success stories which kept me from throwing myself over the nearest cliff because in those stories came hope.

Here were people who had been every bit as ill as me, or worse, and they’d recovered, and were sharing how they did it. They didn’t just sit back and give up. They tried everything until something worked. They kept falling down, and they kept getting back up again. This is what kept me going along. We will find comfort in negativity that matches our own, for sure, but that won’t make us better. That just keeps us where we are.

As an experiment to myself, yesterday I made about a dozen positive comments re things to try to alleviate anxiety (abdominal breathing) and how exercise has improved my fibro pain, and not a single comment was responded to.

We’re talking serious tumbleweed!

Could it be that some people have been ill for so long that there is comfort in familiarity?

Could it be that some people can’t see themselves ever improving?

Could it be ignorance about how the body works and not being able to separate what is fibro pain and what is down to lack of activity?

I am genuinely asking these questions because I don’t know why positivity seems to piss so many fibro-sufferers off! All I want is for everybody to be in less pain, but the bottom line is that this requires effort and the knowledge that things will worsen before they start to improve. Few things in life which are worth having come without putting some graft in, no?

If you are a fibro-sufferer, I empathise. I’m your comrade in arms, but I do NOT apologise for wanting a better life for us.

I can give you a few tips..


  • Be mindful of the type of fibromyalgia groups you join and leave any which block or censor positivity.
  • Understand that your body is a machine and all machines will eventually stop working when they sit around gathering dust!
  • It’s more than ok to vent and to allow ourselves to feel shit at times. We’re human.
  • Research fibromyalgia. Research the effects of exercise on pain. Research the effects of stress on fibromyalgia, and trawling through numerous negative social media posts will ramp your stress levels up which in turn will worsen your pain.
  • Don’t be disheartened when what works for someone else doesn’t work for you. Fibro is a complex condition. Keep trying. You will get there.
  • Though fibromyalgia can be very unfunny at times, try to see the funny side when you can. Use humour as a tool in your armoury because laughter releases the good hormones which bring down the pain levels and inflammation.

Speaking of humour (again) I’ll end this post with ‘Derek’s’ Amazon review which I will link to. This is doing the rounds on social media, and rightly so because it’s hilarious!

Read it and let those little drops of wee dampen your underwear!

The Horror at 30’000 feet

You’re welcome. 😉

Embracing the Weird

Definition of Weird: deviating from the customary:
bizarre, cranky, curious, eccentric, erratic, freakish, idiosyncratic, … (naturally)

Causing puzzlement; perplexing: (my neurotypical husband would testify to this)

Until a few years ago, I fought my weirdness. I hid the weird. I supressed the weird.

Where’s your will to be weird? Jim Morrison

Hidden under the desperate need to be invisible, Jim.

Fighting my weirdness was like trying to keep afloat on a punctured lifeboat where drowning was inevitable – it was just a question of time. This was me for forty plus years – floundering against the unrelenting current of neurotypical bullshit until one day I went under the surface and that, my friends, is an analogy for nervous breakdown.

A year later, a clinical psychologist informed me that my ‘weirdness’ had a name – Autism. This person, in effect, threw me a lifeline, and I’ve been making my way back to shore ever since.

There’s a whole category of people who miss out by not allowing themselves to be weird enough. Alain De Botton

Some autistic people reject the word ‘weird’ and that’s fine. It’s about perception and personal preference, but I prefer to see ‘weird’ as a positive.

Also, where people see weirdness – I see creativity.

“Weirdism is definitely the cornerstone of many an artist’s career.” E A Bucchianeri

Take Andy Warhol. ‘Weird’ was a word that was often used where he was concerned, but the man was creative and made a fortune out of thinking outside of the box. At the time of his death his net worth was equal to $220 million dollars!

Newsflash: He was most likely autistic!

Warhol’s behavioural traits strongly suggest autism. His social and communication issues, obsessions and repetitive style totally do it for me. I mean, it’s possible that some of it was a persona to make him to stand out from the crowd, and maybe he was just really shit at interviews, but given that he thoroughly examined packages of underwear before buying 28 pairs of the same pair – I’m confident in the theory that he probably was autistic.

For fans of Warhol, however, the suggestion that their hero’s view of the world was impaired by a mental disorder is upsetting. It undermines the idea that he knowingly shaped our understanding of pop art. ~ Vanessa Thorpe (The Guardian – Was autism the secret of Warhol’s art)

Mental disorder? I thought we were talking about autism?

Does this mean that Gary Numan fans binned their records when he ‘came out’ as autistic because it, like, totally ruined their enjoyment of “Music For Chameleons” – if Alan Partridge’s air guitar-ing hadn’t already, that is. Because Gazza had already been told he probably had Aspergers when he was 15, and it was fairy obvious that he wasn’t your average 80s pop star!

Coincidentally, “Are Friends Electric?” was the first record I ever bought- which I reckon is apt- and not just because Gary is autistic, but because most of my ‘friends’ live in my computer which makes them ‘electric’ – kind of.

While we’re on the subject of singers..

Susan Boyle was formally diagnosed in 2012. She’s one of us, and she played an absolute blinder in her audition for Britain’s Got Talent, or Britain’s Quick to Judge, as it was known back then..

Modern society is too quick to judge people on their appearances. … There is not much you can do about it; it is the way they think; it is the way they are. But maybe this could teach them a lesson, or set an example. – The Washington Post

They call it a ‘parable’ of modern times. I call it one in the balls for society because, alongside Susan’s phenomenal voice, was the sound of a few million mouths hitting the floor..

I dreamed a dream in time gone by (THUD THUD THUD THUD times a few million) when hope was high and life worth living…

Susan was the favourite to win but dance troupe Diversity threw a small teenager into the air and that was that, mate. No matter, the show made Susan famous anyway and she’s still keeping in real in her ex-council four-bedroomed house – which makes me love her even more!

People have mistaken Susan’s meltdowns (caused by severe anxiety) for diva behaviour, but this lady likes a toastie before a performance and isn’t arsed about what her dressing room looks like! You want to see diva? Try Mariah Carey!

Miss Boyle also has a really great sense of humour…

“Knowing my luck I’d go out on a date and you’d find my limbs scattered around various Blackburn dustbins!”

That’s my kind of humour – dark, but funny.

Personally, I wish Susan all the very best and I’m proud of her for being her authentic self.

If people ridicule us for being ‘weird’, it’s because they’re uneducated about autism, misinformed or just boring as fuck, and instead of taking offence I suggest we take it as a compliment and reply with: ‘Thank you so much!’ and smile at them because it will freak them out, and after all, being freaky is part of the definition of weird, no?

If you’re autistic that makes you I in 100, and if people can’t deal with that – it’s their problem.

Be weird.

Be you.

Weird people are the best people.

Me Versus Mother Nature


Mother Nature has pulled out ALL the stops to make me old before my time.

She’s given me an early menopause, arthritis (basically everywhere) a mental breakdown and fibromyalgia.

I was ageing faster than “Nicholas Flamel” after his Elixir of Life had run out!

Physical and mental ill-health put ten years on me, at least. My skin was an unhealthy shade of pale and, as noted by my rheumatologist, it was extremely dry, and dry mature skin is very ageing.

While being more active has improved my skin because of improved circulation – it’s only part of what needs to be done. I have to put back what Mother Nature has stolen from me – which is my collagen.

Collagen = Youthfulness.

Full disclosure: I’ve been using anti-ageing creams for years but I’ve replaced them  with Vitamin C (and hyaluronic acid), a natural face-scrub, inexpensive barrier cream plus sesame oil.

Sesame oil? Are you nuts!

Yes, and yes.

I’ll tell you more about sesame oil in a bit!

Morning Routine

Cleanse (oil based cleanser)

A few drops of Hyaluronic Acid/Vitamin C

Barrier cream (sunblock if I’m going out in the sun)

Night-time Routine


A few drops of Hyaluronic Acid/Vitamin C

Sesame oil massaged into face, neck and chest.

I exfoliate at least twice a week, and when I have a bath or shower I massage sesame oil into my body – including my feet and elbows!

Benefits of Sesame Oil

  • High in antioxidants
  • Good for heart health
  • Good for the skin (contains Vit E)
  • Could help with arthritis
  • Could improve hair health
  • Anti-inflammatory properties

I’m spending a fraction of what I used to spend (soz L’Oréal et al) and the results speak for themselves because my skin looks ten years younger than when I started, and I have fewer lines. Obviously this an anonymous blog so you’ll just have to take my word for it, innit?

NOTE: If you fancy trying the sesame oil, you’ll need to do a patch test to make sure it won’t irritate your skin to make sure you don’t puff up and end up in A&E innit?

Vitamin C with Hyaluronic Acid

Vitamin C brightens, promotes collagen production, reduces wrinkles and provides antioxidants while the Hyaluronic Acid claims to hydrate and ‘plumps’ the skin. For me, this is a valuable part of my skincare routine, but it is used in conjunction with H2o hydration!

Good skin (or better skin) is the key to looking younger. You can dress how you want cockers, but if ya face looks like Keith Richards then you’re going to look older than your years!

I’m no expert on beauty but I can share what works for me, so here are my tips for better mature skin.

Autistic Soul’s Tips For Better Skin

  • Drink less caffeine. (it will dehydrate you)
  • Avoid soft drinks.
  • Avoid basking in the sun like a fucking seal.
  • Drink in moderation, but drink water in-between. (best case scenario – no alcohol, but I prefer to keep it real on this blog, so, yeah – moderation)
  • Don’t presume that expensive will work.
  • Exercise
  • Eat plenty of fruit and veg (IBS allowing)
  • Sugar is to skin what Jaws was to swimmers!
  • Consume omega-3 fatty acids (found in oily fish) flaxseed and monounsaturated fats, which you can find in walnuts, avocados and olive oil.

Do your research. Read what other people have to say about products, but be mindful of fake or biased reviews. Some people will wax lyrical about a glittery turd if they’ve received it for free! Also, what works for one person won’t necessarily work for us because we all have different skin, sensitivities, and preferences when it comes to how something feels and smells. What smells ‘heavenly’ on ‘Andreaaaaaa’ might smell like cat piss on us, you get me?

Buy the smallest amount you can and be prepared to bin it, or give it away.

Or maybe go into a department store and have the ladies fawn over you with their testers? I did this with foundation, simply because I was sick of buying shades which made me look like an Oompa Loompa. In the end, I frog-marched myself into Debenhams and had a lady tell me the exact shade for my skin – one for summer and one for winter. That said, I can’t go out in the sun, so it’s winter shade all the way for me!

Another word of caution about buying skin-care products and make-up online is if an expensive brand is like, silly cheap, then it’s probably fake or you’re buying a tester.

Personally, I’m leaning more towards Ayurvedic skin remedies which have worked for centuries rather than something that has an ingredients list a mile long. General rule of thumb? The longer the list – the more unnatural the product!

If you’ve read this post, and you’re thinking, I really can’t be arsed with all this, cocker, that’s fine. If you only choose to drink more water, it will make a difference! You’ll piss more so don’t drink after 6pm. But when your wee is nice and pale – you’re hydrated. Yay!

As for me, I’m on a roll to make sure that I feel (and look) the best that I can be as I enter into my fifties. It’s me taking back control. It’s self-confidence. It’s remembering that I have it a lot easier than most of my female ancestors – who were mostly dead by 40 due to working themselves into early graves. That, and no National Health Service, obvs.

My mother departed this Earth aged 72 years old, but she made the very best of herself right until the end. Ok, make that the day before the end because she died wearing her nightie and no make-up. This was the worst death scenario my mother could have imagined, but that’s Mother Nature for you – she gets off on shit like this. It’s what she does.

My grandmother went one better. She had Mum putting rollers in her hair the night before she died. She’d been poorly for two weeks, but it was like she could see Mother Nature and The Big D in the corner of the room and was like: “I see you there motherfuckas, but I’ll go when I’m ready, and with my hair nicely curled thank you very much!”

Nan died peacefully the next morning – her hair perfectly curled. According to my mother, she looked 30 years younger. That’s some hardcore anti-ageing right there! However, it’s drastic, so I won’t be recommending death as a tip!

I can’t help but smile that my grandmother got her hair done for the journey to the next world. That was so her. How to check out from this planet with one finger in the air, eh Nan?

With women like this as examples, how can I possibly let the side down?

You can’t help getting older, but you don’t have to get old ~ George Burns

Confessions of an Autistic Human: Communication

NT person: “The washer is broken and I feel exhausted.

Me: Yeah, my washer is on it’s way out too. It’s making a weird noise and there’s a funny smell – like’s something’s burning out? This happened before (different washer) and it turned out to be the brushes. I’ve had this one for 8 years now whereas I had my mum’s old Servis one and that lasted for 30 years! They don’t make them like that anymore do they? And I know what you mean about feeling exhausted because I’ve felt that way for almost 10 years now. I get loads of symptoms like pain, constipation, chills, and feeling dizzy. Lots of trips to see the doctor and hospital tests, including a colonoscopy where they shoved a camera up my bum, and I had to wear a funny gown which exposed my arse. They finally diagnosed it as fibromyalgia. Have you been to the doctors about the exhaustion?

Apparently, the response the average NT is looking for is, “Oh, I’m sorry to hear that!’.

What they get is me talking about my own experiences in a very un-filtered way which will inevitably always come back to my colon..

Why do you always have to make it about you?

I guess, on the face of it, it does look that way, but what I’m actually doing is trying to connect with people in the only way I know how because I’m useless at small talk. Not only is it a chore trying to think of the words to say, but talking about trivial stuff is like nibbling on a Ryvita when I could be oesophagus deep in a roast beef dinner with all the trimmings – except sprouts which give me shocking flatulence..

See, it’s the colon thing again!

My husband (who suffers from a raging case of neurotypicalism) struggles to understand my need to know ALL there is to know about things that interest me. He watches a film. He listens to a song. It’s a one dimensional thing. For me, it’s a multi-dimensional experience combined with an almost pathological need to know everything there is to know about a particular film or piece of music. He doesn’t understand me, and it’s hard to walk out of a cinema and not be able to geek out with a like-minded soul, you know?

Speaking of my husband..

I think I do his head in. No, I know I do because he’s told me – which is fine because I do my own head in at times. I baffle him. I can do past, current and future in one sentence, and about different subjects. To paraphrase, I throw in more curve balls than Candy Cummings – who you’d imagine is a porn star – but he was actually a 19th century baseball player!

The difference is that most autistics I know are the same as me if you’re asking them a question verbally or on the internet – you get a lot of info for your proverbial money. Generally, when I ask an NT, I get one (or few) liner responses. Now, I’ve tried this method and, bizarrely, it takes me longer to knock out a one-liner than it does to just go with my autistic flow. But I have discovered that one-liners come into their own in certain situations – such as when posting a funny picture. In this situation, it needs to be short and snappy with as few words as possible because it’s the image that needs to do the talking..

I could learn a lot from my eldest son here because he’s perfected this, and it’s hilarious. Interestingly, he’s not autistic, but my middle son (who I suspect is autistic) is more like me for saying in 10000 characters what could be said in 140. As for my diagnosed autistic dude – well he can literally steer any conversation back to Pokemon, and I do mean, any conversation! And he does it in surprisingly few moves. It’s his thing – his constant in this confusing world.

How I communicate used to bother me. It’s like I would put in so much effort to answer a question and the other person would give me a ‘Thanks’ or ignore me altogether and paranoia would kick in, especially when said person would answer everybody else but me. Then I discovered I’m autistic and that discovery led me to a world of other over-sharers, and it’s an absolute joy to have responses that match my own for word count!

The Greek meaning of autism is autos (not a car magazine) which means ‘self’, and in a way is correct, except that it also implies selfishness, and I think that a lot of us talk about ourselves and our experiences in order to connect with others. This involves empathy – you know – that which autistics lack? It’s just that we do it in about 50 paragraphs, whereas your average NT does it in one line – “Totally get this“. It does the job. It says, this has happened to me, or something similar, but the urge to start tapping away on the keyboard like some deranged lunatic overcomes me, and before I know it I’ve hit the post button..

And there it is.. MASSIVE paragraph amongst hundreds of one-liners.

I know I over-share, and I talk about subjects that most people won’t touch – like colons – but that’s me. It’s who I am. And if we talked about our colons and bums a bit more, then maybe fewer people would die of bowel cancer, no?

Generally, I have a lot less to say verbally, but give me a keyboard and I have plenty to say because there is a barrier between me and everybody else. I have time to choose my words and I can change them if they don’t work or I’ve used the wrong words. I can’t edit myself verbally – once the words are out there there’s nothing I can do, and it’s often the case that I don’t speak at all because it’s easier.

I don’t stumble over my words on here. If my brain freezes up mid-sentence, who is to know except me? I get to re-read what I’ve written before I put it out there.

Another beauty of blogging is that I hate writing by hand because it hurts and my writing isn’t the neatest. Sometimes it looks like a spider rolled in ink and breakdanced on the paper! My writing slants unpredictably, and when it looked this up it means: An erratic slant: Usually means a lack of flexibility.

Well that’s another autistic mystery cleared up, eh cockers!

“Not everyone is always going to like you. What impresses one person may turn another away. To thine own self be true.”
― Susan C. Young

Negative Thinking

There’s a pattern with me where my ‘mind shit’ builds up to an unmanageable level and I get me some therapy. I go. I vent. I unleash. The shit gets squashed back down again for a while. It’s like Christmas when the bins are full and you have to stamp everything down. In fact, a ‘bin’ makes an good analogy for my mind as they only seems to be crap in there!

Anyhoo, my bin’s almost full and this puts me at risk of ‘falling down the rabbit hole’ – which is a metaphor for something that transports a person into a really wonderful (or really shit state) and in my case it’s a really shit one.

Yesterday I was so overwhelmed by negativity that I had an episode of ‘situational mutism’. I hid myself away upstairs. I comfort ate. I wanted to cry – only the tears wouldn’t come. The negativity ran riot in my mind and I couldn’t do anything but lie there and let the stress hormones run feral around my body..

I remained in this state for a few hours, then the thought popped into my head to put YouTube on, and with no intervention by me, there, tucked between my over-50s exercise videos, was the ‘suggestion’ of an Eckhart Tolle video about negative thinking!

Synchronicity or what, cockers!

Say what?

Synchronicity: describes the simultaneous occurrence of events (or coincidences) which apparently have no clear cause, but are deeply meaningful.

According to Eckhart, the best way to overcome negative thinking is to live in the present moment. It’s a big ask, truth be told, because I can generally be found in the past or in the future, and neither are nice places to be, but Eckhart knows all about negative thinking and what it’s like to be a deeply miserable human being because he was one until he woke up one morning and felt less shit..

“I opened my eyes. The first light of dawn was filtering through the curtains. Without any thought, I felt, I knew, that there is infinitely more to light than we realize. That soft luminosity filtering through the curtains was love itself. Tears came into my eyes. I got up and walked around the room. I recognized the room, and yet I knew that I had never truly seen it before. Everything was fresh and pristine, as if it had just come into existence. I picked up things, a pencil, an empty bottle, marvelling at the beauty and aliveness of it all.”

Beautiful huh? Whereas, I woke up this morning to a shade of grey (and not in a sexual way) and I had to flick a dead fly off the windowsill..

“As you grow up, you form a mental image of who you are based on your personal and cultural conditioning. We may call this phantom self the ‘ego’. It consists of mind activity and can only be kept going through constant thinking. The term ego means different things to different people, but when I use it here it means a false self, created by unconscious identification with the mind.”

And here lies the problem because I grew up being bullied and a whole load of other negative things which wrecked havoc on my confidence and self-esteem. I also grew up being loved by my family, but my brain has this thing going on where it only focuses on the negative memories, and I think it might be the case that I don’t consider myself worthy of happiness?

There are so many thoughts and memories that make me unhappy. They’re like limpets on rocks – an absolute bugger to prise off. But I know that deep down in my psyche is the pre-school me – and that version of me experienced what Eckhart was talking about with his epiphany – every single day.

She’s there, buried underneath all the crap. The poor fucker can’t breathe!! Help her, Autistic Soul, help her!!

My heart wants to be happy. How do I know? Well, our bodies thrive with happiness but wither with sadness. This is scientific stuff! So doesn’t it make sense to try and find my happy? And hopefully before I die?

So what makes me happy?

  • My kids (even if they’re shit at replying to my messages)
  • My husband (when he’s not being an insufferable neurotypical arsehole)
  • My lovable (and psychotic) lurcher
  • Music (the soundtrack of life)
  • Books (bury me under a pile of books!)
  • Gardening (when the pollen is low enough to get out there, like)
  • The sea (the way those waves roll in an out..)
  • My home (sanctuary)
  • Binge watching box-sets (currently on Brassic)

There are things we can do to combat anxiety and depression and bring ourselves a bit of happy. Yes, I know how hard it is to see the light when your mind is full of crap, but the potential is there.

Exercising ~ Even a short walk gets those endorphins flowing. I generally feel better after I’ve been for a walk – especially when there’s nobody else about.

Mindfulness ~ Bringing ourselves into the present by noticing the world around us instead of focusing on how shit we feel. I won’t pretend this is easy, especially with being autistic, because the world can be a scary place. But there is beauty out there too!

Doing Something New ~ Trying out something different, like photography. Anything that takes us out of ourselves – even it’s for five minutes.

Goals ~ Having something to aim for in each day, even if it’s to get that bastard big pile of ironing done!

Therapy ~ Go unleash your shit onto somebody who gets paid to listen. Fill your boots. Use ALL their tissues. Or type/write that shit down – using ALL THE SWEAR WORDS!!

Sense of Purpose ~ We all have a place in this world. We all need a sense of purpose to give our lives meaning. Mine is to be a mother, and the best one I can be. That’s my purpose. It always has been.

Focus on the Good Bits ~ Life can be EPICALLY CRAP, but try and focus on the better bits, no matter how small.

We may not have had any choice in being here. After all, we are the result of our parents swapping bodily fluids *retches* and we happened to be the best swimmers, but seeing as we are here we might as well try and make the best of our time because in the great scheme of things, it’s very brief. Like, blink and you’re dead – brief.

Today I woke up to the same old feeling of not having slept very well. I didn’t have my ‘Eckhart moment’, but I did get a lick from the lurcher in thanks for letting her outside for a piss. Now she’s fast asleep on her doggy-bed chasing imaginary rabbits and I realise that she is something to be thankful for because here is a friend who’s never made me feel bad about myself. I mean, she’d probably prostitute herself to anybody with a box of Bonios, but I like to pretend I have her undying loyalty.

So the antidote to negative thinking is to be in the present?

So for the next minute I will be ‘present‘.

I noticed that the sun has came out – changing the colour of the conservatory roof from grey to blue.

I heard the ticking of the clock, the tinnitus in my left ear, electricity, the whirring of the fridge and freezer, and the dog’s breathing which was back to normal since she was no longer rampaging after rabbits..

Slightly more difficult as it’s hay fever season and my nose gets blocked, but there was no mistaking the odious smell that escaped from the Lurcher’s arse!

I tasted blood in my mouth – which means that I’m probably low on Vit D again.

That and coffee.

I noticed that my skin felt dry (probably the new soap, or age) and that my coffee was lukewarm.

Alright then Eckhart. Today I will try to be present as much as I possibly can in the hopes that it will make some room in the ‘bin’ that’s my mind.

It certainly won’t hurt to try, right?

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.” ~ Albus Dumbledore

Confessions of an Autistic Human: Resting Bitch Face

A man came up to me in the street one day and he said, “SMILE! It might never happen!”

What might never happen?

This kind of thing happens to me a lot, and there’s a reason.

Resting Bitch Face

I have a serious resting face, otherwise known as ‘resting bitch face’ because if you’re not grinning like a lunatic 24/7, apparently you’re a bitch, and a miserable one at that.

If a man has a serious resting face, does that mean he’s got ‘resting bastard face’?

*Googles resting bastard face*

Apparently it does!

What I want to know is – where did this expectation for women to smile come from?

When a man tells a woman to smile, is it because, at a conscious or unconscious level he believes that they are subservient and exist to please him? Some might see it as a casual remark that means nothing, but what if it’s really about control? The man wanted me to smile, regardless of how I was feeling. For all he knew I could have been grieving the loss of a loved one. I wasn’t, but the point is that he had no regard for my feelings – only how my face affected him.

We only have to go back six decades to see how this was a way of life because women were generally subservient to men. Their purpose? To look after them. To keep them happy, no matter what.

Here are a few of the tips on how to be a ‘good housewife’ taken from Good Housekeeping 1955.

Be a little gay and more interesting for him. His boring day might need a lift and it is one of your duties to provide it for him.

Greet him with a warm smile and show sincerity in your desire to please him.

Be happy to see him.

*retches violently*

Obviously, ‘gay’ has a different meaning these days, but in those days it meant carefree”, “happy”, or “bright and showy”.

What I want to know is this: How the hell did these women manage to smile as they waited on their husbands hand and foot? Sure, the men were out earning the ‘filthy lucre’, but the wives weren’t exactly sat on their arses all day were they? They cooked, cleaned, laundried, (not a word according to WP, but it’s staying in) shopped, looked after their children, and elderly parents.  How more men didn’t end up with arsenic poisoning – I’ll never know. Can you imagine spending the morning scrubbing hard floors to have your other half walk all over them in his dirty boots whilst expecting you be a ‘little more gay’?

In contrast, I texted my other-half to inform him that the dog’s vomited all over the kitchen floor. How’s that for gay?

Thankfully, we’re no longer shackled by such chauvinist crappery – which is why I don’t appreciate random blokes walking up to me in the street and saying stuff like “SMILE. It might never happen!”

As for the annoying wedding photographer I encountered at my brother’s wedding in the early 80s..

“Are you going to give me a smile shuggie?”

Fuck off. I’m 12 years old, hormonally imbalanced to the point of murdering somebody (you, if you don’t piss off) and I’m being forced to wear a pink dress when I should be wearing jeans and an AC/DC tee shirt! Take your smile, and your camera, and SHOVE IT UP YOUR ARSE!!

P.S Don’t call me shuggie. what I wanted to say, but I’m autistic, and I have the verbal communication skills of a wheelie bin – especially when stressed, let alone hormonal – so I just stood there looking like an angry blancmange..

Fair dos. The man was a wedding photographer. It was in his job description to encourage people to smile at weddings, but it’s still annoying when you’re a tomboy in the throes of adolescence, and some bloke is trying to make you smile when all you really want to do is listen to some heavy metal and get on with hating the world. You get me? Goes for school photographers too. Annoying gits. I hated school with a PASSION. Why on earth would I want to smile? Do people smile in hell? DO THEY?!!

My high school photograph was an absolute stunner: Greasy hair, angry looking acne, and an expression that one usually sees in mugshots. Needless to say, as soon as the opportunity presented itself, I relocated said photo from the ancient Jacob’s biscuit tin to the bin, but not before I manically cut it up into a million pieces. But miserable school photographs isn’t just an autistic thing because I’ve seen my NT husband’s high school photograph and he looks like he’d just been given a months detention!

I don’t have to smile if I don’t want to. If I was to smile all the time, I’d be carted off to the nearest secure-unit or A & E because people might assume I’ve had some kind of seizure. We’re not meant to smile all the time – it makes your face ache.

Ironically, ‘face ache’ is a term for people who don’t smile.

‘Eh up! Here comes face-ache.’

Am I the only one who sees the ridiculousness in this? ISN’T THE WORLD CONFUSING ENOUGH!!!

Of course, we could always flash people our very best Jack Nicholson ‘The Shining’ smile. You’ve got to show them teeth, see. Top and bottom. It’s predatory. Technically, it’s a smile, but it’s a menacing one. Makes people uneasy. They can never quite work out if you’re harmless or a serial killer.

While I have become aware that I have ‘resting bitch face’, it’s not all of the time because my face does what can only be described as ‘aerobics’ when I’m talking or listening – something that I only became aware of when I saw myself on video. As much as I cringe when I see myself on camera, it’s also fascinating to see what happens to my face when it’s not in serious bitch mode. I thought it was just a quirk of mine until I saw Sara Harvey (Agony Autie) pulling off some serious facial gymnastery of her own on a video at an autism event and now I’m wondering if it may be an autistic thing? Can you relate?

When I do smile, it’s because I have reason to – not because some random bloke walks up to me in the street and demands one. I reserve my (non-psycho) smiles for the people I love because they are worth the effort. It might not be the most attractive of smiles, but it’s real – it’s me.

Plot twist: can you guess which song my mother chose for her funeral?

You got it: Smile.

Taking the piss from beyond the grave. Thanks Mum. 😉 

Not smiling makes me smile ~ Kanye West

Menopausal Weight Gain


The menopause doesn’t cause weight gain.

There. Said it. It’s out there.

Hormonal changes are responsible for fat depositing itself in new places (especially the abdomen) but lifestyle and genetics are the real culprits behind us gaining weight after the menopause.

The rule is simple: once we reach the menopause, we need to do more and eat less.

This is a gargantuan ask when you have a chronic health condition, arthritis, and a penchant for Waggon Wheels. But inactivity, and wolfing down 5000 calories a day, is only ever going to push those dress sizes up!

Of course, there are women who are happy with some extra weight after the menopause because they finally have the curves they’ve always wanted; they feel better than before. But it doesn’t work that way with me. It never has.

An Autistic Perspective

I’m a hyper-sensitive autistic person who struggles with excess weight – it’s a sensory thing – just as I struggle with certain fabrics, and smells and sounds.

I’m currently just under ten stone, and that might not sound a lot, but I’m two stone heavier than I was before the menopause, and it makes me feel very uncomfortable.

Autistic or not, we burn fat more slowly as we age, but most of us don’t adapt our lifestyles accordingly. We take in the same calories (or more) and do less. The result is weight gain, deconditioning, and a clapped out heart if we’re not careful because our hearts are the most important muscle we have.

The Good News

It’s reversible. (Huzzah!)

The Bad News

Requires effort and motivation. (Boo!)

The Educational Bit

A few small changes make a BIG difference and once we start to feel (and see) those differences – we’re more likely to keep going, right?

So – to the tips!


Eat smaller portions.

Go a plate size smaller.

Eat less.

Eat Healthy (er)

This can be a challenging if you’re partial to comfort foods. But menopausal women are more likely to lose weight if they ditch the junk food, or at least swap some shit for healthy options, like fruit, veg and fish.

That said, just because something is healthy doesn’t mean it’s good for us as individuals. For example: my IBS flares up if I so much as glance sideways at an apple. Citrus gives me migraines, and nuts (unsalted variety, obvs) have a tendency to cling onto the walls of my colon like limpets. Wheat? Don’t start me. One bowl of Weetabix and I puff up like I’m about to give birth!

Full disclosure: I’m at risk of turning into a serial killer if I don’t eat some chocolate every other day at the very least, therefore I consider it my duty to make this part of my diet.

I also drink a few cups of green tea everyday. It’s an acquired taste, but several studies suggest it may promote weight loss by stimulating the body to burn fat. There’s also some evidence to show that drinking it could lower the risk of developing chronic illnesses and other nasties like cancer.

Intermittent Fasting

Easier than you think!

By ‘fasting’ I mean not eating for twelve hours. It’s basically what we do everyday when we wake up – we break our fast (breakfast)

Here’s the thing: our bodies do the repair work when we’re asleep. When we eat late, our bodies have to work hard to digest the food, and if you’ve ever wondered why your sleep is especially crap after a late night vindaloo and five pints of cider – this is the reason.

It’s about the body needing time to carry out essential maintenance, and it’s about a better quality of sleep. There are lots of different type of fasting diets out there if you want to go hardcore, but as far as I am concerned the only time this body is going 24 hours without food is if it’s experiencing a bout of gastroenteritis or my colon is being deep-cleaned prior to a colonoscopy.


It doesn’t matter what we do as long as we do something that increases our heart rate, and I don’t mean imagining Tom Hardy standing in our front room wearing just his undies and some chip-oil..

I mean exercise.

I started off by managing five epically painful minutes a day and four months later I’m averaging 30 minute workouts. It’s all low impact exercise which targets every part of the body – including my brain! (and that needs the most work, ha!)

I’ve also lost a few pounds, so, yay!

Type ‘Over 50s workouts’ into YouTube’s search engine and you’ll find lots of low-impact workouts to follow. Of course, I’ve tailored the experience to suit my needs which means muting the instructors and their Kylie 12″ dance music and playing my Amazon Music workout playlist because I’ve discovered that I keep better time to rock music than dance.

Toe tapping to Paranoid Android? Works for me, cockers!

The Emotional Bit

I’m almost 50. It’s unrealistic to think that I will ever be like I was 12 years ago when I was within in my optimal weight range, healthy and firing on both ovaries..

*cries a bit*

I’m always going to carry some weight on my abdomen, because that’s where Mother Nature – the bitch – has decided it’s going, but at least now I can see my toes again. Yay!

In January I was in a bad place mentally, and physically. I tearfully told my husband I couldn’t take much more because I couldn’t walk or stand up straight. Lying down was all I could do and that got shit after a while..

Physiotherapy threw me a lifeline and educated me about exercise giving better range-of-motion to my painful and atrophied muscles. They said it would improve my quality of sleep, and it has. They said it would improve my sense of well-being, and it has. They told me that, the less I do, the more pain I will be in, and that inactivity is most likely how I came to develop the inflammation in my pelvis in the first place.

Bottom line: if we’re unhappy with our bodies, especially during the menopause, we must make the conscious decision to do something or deal with the consequences of doing nothing.

“A bear, however hard he tries, grows tubby without exercise.”
― A.A. Milne, Winnie-the-Pooh









Now That’s What I Call Autism


I love a mixtape, don’t you? So here’s one I made just for the autistic humans..


A Side

1. Don’t Stand So Close to Me ~ The Police (always been social-distancing, cockers)

2. Move Closer ~ Phyllis Nelson (for the space-invaders)

3. Too Much Information ~ Duran Duran (social media overload)

4. Anxiety ~ Good Charlotte “I am anxiety free!” (said no autistic person, ever)

5. Minority ~ Green Day “Stepped out of the line. Like a sheep runs from the herd. Marching out of time. To my own beat now” (so, up yours, haters!)

6. Senses Working Overtime ~ XTC (literally)

7. Creep ~ Radiohead But I’m a creep, I’m a weirdo. What the hell am I doing here? I don’t belong here. (Less of the creep, Thom, but I’m with you on all the rest)

8. Are Friends Electric ~ Tubeway Army (how can anybody deny your autistic authenticity, Gary Numan?)

9. Born This Way – Lady Gaga (obvs)

10. You’re in Love With a Psycho ~ Kasabian (one for my husband)

B Side

1. 99 Problems ~ Jay Z (I got 99 problems but the Switch aint one – for the gamers)

2. Heaven Knows I’m Miserable Now ~ The Smiths “I was happy in the haze of a drunken hour, but heaven knows I’m miserable now” (‘totes emosh’, Mozzer)

3. 19th Nervous Breakdown ~ The Rolling Stones (most of us have had at least one)

4. Spinning Around ~ Kylie (literally, though not necessarily in size zero hot-pants)

5. Communication Breakdown ~ Led Zeppelin “Communication breakdown. It’s always the same. I’m having a nervous breakdown. Drive me insane! (self-explanatory)

6. Beloved Freak ~ Garbage “People lie and people steal. They misinterpret how you feel. And so we doubt and we conceal” (adoring you from afar, Shirley Manson, but not in a criminal way – I aint trawlin’ ya bins)

7. In My Room ~ The Beach Boys ( have spent the majority of my life in mine)

8. The Slightest Touch ~ Five Starr (and it feels like I’ve been punched)

9. Garden Party ~ Rick Nelson “But it’s all right now, I learned my lesson well. You see, ya can’t please everyone, so ya got to please yourself. (translation: f**k em)

10. Poker Face ~ Lady Gaga (can’t read my p-p-p-poker face)

“Without music, life would be a mistake.”
― Friedrich Nietzsche, Twilight of the Idols

Confessions of an Autistic Human: Holidays

Holidays? Not a fan.

Too unpredictable.

Too unfamiliar.

Too stressful.

There are the sensory issues, like sand in sandwiches, which sounds like it belongs there, but I prefer Branston pickle in mine.

And it gets everywhere.. (sand, not Branston)

I struggle with the strange smells of caravans, hotels and cottages and also with the knowledge that thousands have upchucked, flatulated, and fornicated in these places. Not that they haven’t been cleaned in-between, obvs, but this is where my mind takes me..

Other issues include the obligatory flock of seagulls if we’re holidaying at the coast..

Flock of Seagulls. Pop group from the 80s. Questionable hair-dos?

No. I mean the beaky buggers that crap on your head and steal your chips!

Give me your f **king chips!

Is it me, or are seagulls a lot more feisty than they used to be?

I remember my childhood holidays.

That is, I remember a few of them..

I recall being crammed into musty-smelling caravans with daddy-long-legs the size of Brazil, and my parents flicking tea-towels about trying to shoo them out again otherwise there was zero chance of me sleeping..

But before all that was the monumental stress of having to choose which books to pack, as well as a few more books, and, if there was room – some more books!

Dad would see me staggering towards the car (three bags of books on each arm) and he’d say, It’s a car, not the bloody Tardis!’  But, despite the protesting, he always found room for my books, bless him.

Sometimes we stayed in a caravan, sometimes in bed and breakfast places, and It was this type of holiday accommodation that I struggled most of all, because, ya know – people.

One year we stayed at a working farm which stank of cow poo and was home to a vindictive, and exceptionally loud cockerel. It was sensory nightmare, and the only thing that kept me sane was the farm collie, who decided to be my friend, and not because I fed her sausages under the table..

In true autistic fashion my inner turmoil was reflected in the photographs which flopped through our letterbox a few weeks later. Yes cockers, you had to wait WEEKS for your snaps in those days – none of your instant malarkey! The result being that there is a tin of photographs (somewhere) where I look a miserable, sulky, and rarely looking at the camera..

I’ve got better at concealing my feelings because I know it’s not all about me, and we all have our memories to make. Even though I struggled with holidays, I’d rather have those memories than not, because Dad enjoyed them. He’s smiling in almost all the photographs he’s in, and that makes me smile too.

There are also the memories of my children on the beach, having fun, and you’d be fooled into thinking that I was having fun too if you take the photographs at face value, because I’d perfected the art of masking by then. Nowadays, holidays are very much tailored to my autistic son and I. My husband ensures it, and I’m grateful to him for that. That said, he’s not a beach person. He’s an introvert, so I guess it suits him too? He knows I don’t have the capacity to suppress what’s inside anymore, and our autistic son has never been able to, so he works with what we’re able to tolerate.

We go to the beach, but it’s for a walk, or for half an hour with a bucket and spade. It’s like taking a few chocolates out of the box instead of wolfing down the lot and making yourself sick. I get to look at the sea, and it calms me. It recharges the battery a little. Would you agree that it’s a visual stim? Because I find the rolling in and out of waves incredibly calming..

My perfect holiday is somewhere in the Scottish highlands where you can layer up to keep warm and sit by an open fire enjoying a single malt. Seasonally speaking, Autumn is best, especially when the heather paints the landscape purple. It’s like. ‘Stop the bloody car! I must get and photograph this!’ Then I have to add filters to the image because the lens never captures the hues as my autistic eyes see them.

I know the majority of NT’s must be epically frustrated at not being able to go on holiday at the moment, which is probably why they’re breaking social distancing rules and flocking to the seaside, but, at least the environment is generally having a much needed rest from humans, no?

With that in mind, let’s take a moment to think about the millions of seagulls who are presently having to survive by cracking shells on rocks, having become accustomed to cod, chips and mushy peas. This pandemic is hitting them hard too. Let’s hope they’re not too vengeful when things get back to ‘normal’.

“It came to him that he didn’t like holidays. . . . They bore down on you. Each one always ended up feeling like an exam . . .”

― Lily King, The English Teacher


Have you ever looked up and seen the stars? I mean, really, seen them?

I don’t mean the few that make it through light pollution – the ones that can be counted on one hand..

I mean the kind of stars in the picture..

The sky as it really is.

This has only happened to me twice in my life, that I remember anyway..

One of those occasions was on the coast of Scotland in a beautiful place called Crovie, and I’d had a few pints so I was probably seeing double the amount of stars that there actually were.. even so, it was pretty awesome.

But the time which blew my mind was when I was standing on a car park in Exmoor – a place which boasts the darkest skies in which to see stars..

We were only in Exmoor for four nights, and three of them were overcast, but my luck was in on the fourth day because it was cold and clear skies were forecast. Problem was that husband and son were unwilling participants on account of it being in the minus temperature wise, but I eventually won them round with the promise of a chips and sweet-tea, and who wouldn’t be tempted by a plate of hot chips on a cold winter’s evening!

An hour later, we were driving up a very windy road towards a carpark in deepest darkest Exmoor, and I didn’t know quite what I was expecting when I got out of the car, but what I saw when I looked up literally took my breath away!

I can’t think of the words which would do justice to what I saw, and I tried to take pictures with my camera phone, but every picture came out black with not a star to be seen..


However, the camera which is my brain captured the vision in all it’s ethereal glory.

It wasn’t just about the aesthetics because my experience went much deeper than what I could see because standing on that deserted carpark I felt connected to the universe and understood that everything and everybody is connected. My soul felt like it was plugged into some kind of universal mains which brings me to the final frontier – space.

Last year we celebrated 50 years since man landed on the moon..

I was yet to be born when Neil Armstrong took his giant leap for mankind in 1969, but I was fascinated to watch the original footage. In true autistic style I trawled the television channels to find everything I could on the subject – much to the annoyance of my neurotypical husband who couldn’t understand why one 90 minute programme wasn’t enough..

Of all the footage – one photograph stayed with me.

There were three astronauts on the Apollo 11 mission – Neil Armstrong, Buzz Aldrin and Michael Collins.

The most iconic photograph is the one Neil Armstrong took which reflected himself in Buzz Aldrin’s visor, but the one which moves me is the picture that Michael Collins took which shows our planet, the surface of the moon, and the lunar module.

Every time I look at this photograph, it humbles me. This is the bigger picture. Somehow we evolved to think that some humans are better than others and as someone who is different to the ‘norm’, I know what’s it’s like to be treated as if I’m inferior to everyone else, but this picture shows us as we really are – a very small part of something beyond our comprehension.

Staying with astronauts, Dr Edgar Mitchell created IONS (Institute of Noetic Sciences) in 1973 after a profound experience heading back to Earth during the Apollo 14 mission.

What I experienced during that three-day trip home was nothing short of an overwhelming sense of universal connectedness.

Granted, I was standing on a car park in Exmoor when I had my epiphany, not travelling in space, but I guess the sense of connection was the same and I believe it’s something that we all can tap into.

I never want to forget the moment when I became one with the universe, and, no, I wasn’t on medication, pissed or having a psychotic episode. The problem is that some people believe that there’s nothing more to this world, and that’s fine, but they belittle the experiences of others in order to hold on tight to what they believe in. I’ve seen all the tactics in my time, including questioning the intelligence of those who experience such phenomena and to put this into perspective, Edgar Mitchell was a US Navy Captain and MIT-trained aeronautics engineer and the recipient of numerous honours, so he was hardly a moron, no? And I’m not saying I’m as intelligent as Edgar, because I’m not. (I wish) But this blows away the theory that you must be thick or gullible to believe this stuff, right?

All my life I’ve felt disconnected from those around me, but looking up at those stars reminded me that this is my home, and I am connected to every other human on this planet – even those who reject me. And whenever my world darkens because of illness, mental illness, or the resurgence of bad memories – I take my mind back to Exmoor and remind myself that no matter how shit life gets – the stars are always there.

I love the stars.
Because they can’t say anything.
I love the stars.
Because they do not judge anyone.
-Natsuki Takaya