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, huh?

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.

Menopausal Middle-Aged Spread

My younger self listened to middle-aged women blaming their weight gain on the menopause..

‘I used to be six stone wet through, Sandra. Now I can’t breathe near a cake without gaining three stone!’

I deluded myself that ‘mid-life-spread’ wouldn’t happen to me because I’d always been relatively slim. I assumed I’d be one of those skinny old biddies like Dot Cotton off Eastenders, only shorter.

Before I go any further, this isn’t about ‘fat shaming’ because I admire plus size women who are body positive. I follow a few on social media and they look fabulous! They certainly know how to work those curves! However, I’ve also noticed that those women are not of menopausal age and here’s the thing:

Being menopausal and obese is a disease waiting to happen.

‘When you’re over 50 you have to pay attention to your health a bit’ ~ Dawn French

So, Mother Nature has taken the piss YET AGAIN because after tormenting me with 31 years worth of painful periods and psychotic mood swings, I’m now hauling an extra stone around with me every day – most of it around my middle.

I struggle with how being overweight makes me feel and being hyper-sensitive is probably the reason for this.

Why do we put on weight after the menopause?

  • Women are generally less active than before so muscle mass turns to fat.
  • Menopausal women are more prone to stress which produces high levels of cortisol. This causes us to put on weight around our middles resulting in the ‘muffin top’ effect.
  • Metabolism changes at menopause. It’s slower, so we have to put more effort in to burn fat.
  • Lifestyle habits such as comfort eating our way through family size bags of Revels and downing five gins a day.

‘So what do I have to do?’

It’s simple.

Exercise more, eat less and reduce your sugar intake.

Reduce sugar? Don’t swear at me!

Sugar (and fat) is what makes food addictive. Nobody comfort eats salad, right? However, overdoing it comes at a cost to our health. For this reason, I am concerned about the ‘eat what you want, as much as you want and fuck everybody who says otherwise yolo’ ethos of the body positive movement because it has serious consequences for menopausal women who have lost the protection their hormones once gave them. It in our long-term interests to be (and maintain) a healthy weight.

‘But-but-but I can’t live without five sugars in my tea!’

The current guidelines state that sugar shouldn’t take up more than 5% of our daily calorie intake. I know it’s hard and I haven’t ditched the sugar altogether, but I have reduced it drastically and that’s partly because blood sugar spikes trigger my palpitations.

‘Rightio. I’ll use sweeteners then.’

Sweeteners are an option, yes, but they can have side effects, especially for IBS sufferers, so do your research and see what works for you.

The Educational Stuff

Refined carbs such as white bread, potatoes, alcohol, biscuits, cakes and sugary drinks need to be limited because they make blood-sugar go bonkers and over a period of time this will lead to insulin resistance.

Blood sugar levels are regulated by eating unrefined whole foods such as fruits, vegetables, and whole grains. Boring as fuck, but necessary, as complex or unrefined carbohydrates are processed slowly over a longer period of time and require a small amount of insulin for metabolism. Personally, I can’t get as excited over brown rice as I do a plate of chips, but there you go..

So it’s not just as simple as limiting calorie intake. It’s no use eating 1200 calories if there are all refined carbs. This is where the word ‘balanced’ comes in. If we can eat a balanced diet with reduced calories, we will reap these benefits.

  • Clearer skin
  • More energy
  • Better concentration
  • Fewer hot flushes
  • Reduction of PMS
  • Improved sleep
  • Fewer mood swings
  • Better mental health
  • Fewer urges to stab people
  • Weight loss
  • Muscle mass
  • Less bloating

Tempting huh?

So, I downloaded a calorie counting app on my phone and set my limit to 1200 calories a day for a loss of 2lb a week and the result is that a week later I’ve lost 4lbs!

It’s amazing (not to mention alarming) just how many calories I’ve been shovelling into myself without realising it. It’s no wonder I am a stone overweight!

‘A stone? Big deal!’

I know it may not sound a massive amount, but it’s relative, because I’m 5ft 1 inches small AND I have sensory processing issues. That one stone might as well be five in my world and I REALLY struggle with how it feels!

Would it surprise you to know that I struggled with pregnancy for this reason? I was COLOSSAL with all three of my boys. Needless to say, I whinged throughout each pregnancy.

Again, it was Mother Nature having her little joke because there was no way she was going to allow me (a 6lb baby) to produce 6 lb babies of my own. Oh No. I had to heave 8 and 10 pounders out of my vagina. I mean, ffs!!!

So, everyone has their ‘perfect weight’ where they feel wonderful and healthy and the world is full of unicorns and sunbeams. Mine appears to be eight and a half stone – so that’s what I’m aiming for.

Basically, once menopause hits, we have to rethink our lifestyle or risk the proverbial shit hitting the fan health-wise, and by ‘shit’, I mean heart disease, cancer, diabetes and Alzheimer’s.

That’s the reality.

Yes, some women can eat what they like, drink what they like and smoke 100 fags a day and the bastards will live to be 100, but they are the exception, not the rule. Plus, what’s the point of longevity if you’re too ill to enjoy it?

Fuck it, Mildred. Lets get drunk and eat lots of cake!

It’s simple really.

  • Do more.
  • Eat less.
  • Eat healthily
  • Don’t skip meals
  • Reduce refined carbs
  • Stop smoking
  • Limit alcohol
  • Lower stress levels

The quality (and longevity) of our lives is in our hands now. According to Super Genes: ”Only 5% of disease-related gene mutations are fully deterministic, while 95% can be influenced by diet, behavior, and other environmental conditions.

We can kid ourselves that life is too short while we are scoffing our fourth chocolate digestive in a row and necking treble brandies, but the reality is that we are potentially the ones shortening it by making poor lifestyle choices.

The key word to mid-life health is moderation. A cake once a week won’t hurt you. Nor will the odd glass of alcohol. It’s when they are consumed in excess that the harm is done. Even the smallest of tweaks to our lifestyle will make a difference and one tweak generally leads to another as we begin to feel fabulous, right?

Viva la menopause!

Preparing My Autistic Child For Life Without Me

 

I lie awake at nights worrying about many things. Things such as money. Have I put the bins out? Some cow who wronged me in 1985. You know? Life. Plus, a few thoughts that I’m not willing to publicize. *coughs*.

One of my fears is a really BIG one.

It’s the fear that one day I will have to leave my autistic son.

Leave, as in die.

I worry about being dead because I know that I will no longer be able to look out for my son and that puts the shits up me worse than anything in this entire world!

The thing is: I’m middle-aged (*weeps*) and my body is starting to let me down, so, naturally I’m becoming aware of my own mortality. This wouldn’t be as much of a problem if I didn’t have a young son who is dependent on me.

Well, it’s your fault for having him late then!

WHOA THERE! I was 38 when I had my son and lots of women give birth well into their 40s nowadays. Plus, I was relatively fit and healthy. Quite simply. I gave birth and my ovaries threw in the towel and it’s pretty much been downhill ever since..

I have two other wonderful sons, but they are grown up and living their lives. I worry about them, of course I do. Most mothers never stop worrying about their children, right? However, they are independent and stopped needing me a long time ago. My job is done. They can change my big girl nappies when I start soiling myself, right boys?

The Boy is different because he’s autistic and here’s where the problem lies – not because he is autistic – but because I am also autistic and I know how hard it is to live in a world that doesn’t understand you.. While I am alive (and compos mentos mentis) I’m here to fight his corner and I have already had a one person cautioned by the police for intimidating my son.

“There’s no bitch on earth like a mother frightened for her kids.”~ Stephen King

If that makes me a bitch? Fine.

I am preparing The Boy for independence. Just how independent his life will be is unclear as he’s still only eight years old, but I know I must push him and put him into situations that will push his boundaries. If I don’t, his world will be very small. The difference is that, being autistic, I know when to push and when to ‘ease off the gas’, as it were.

I also know when to change things that are no longer working..

One such thing is mainstream education. This last year, it’s become a struggle for The Boy, despite full one to one support and the best efforts of all involved. The problem is with the mainstream system, not the school itself. So he is being transferred from mainstream to a specialist school where he will be with other autistic children. Alongside the usual curriculum, he will be taught essential life skills in a controlled and safe environment. In mainstream this wouldn’t happen as the emphasis is on education, not life skills.

The school has 70 pupils ranging from 8 to 18 with class sizes no bigger than 6. In comparison to his mainstream class of over 30 children! So, this should help to lower his anxiety. It’s a fantastic opportunity for him and one which, thankfully, we didn’t have to fight for as it was the only viable option for him. If he was to remain in mainstream, he would have most certainly failed like I did and I can’t allow that to happen. What kind of parent would I be if I did? Nor could I rule out mainstream from the onset. My experience in mainstream was mega shit, but I didn’t want it to cloud my judgment regarding him. The difference is that The Boy has been happy whereas I wasn’t happy. Ever.

As positive as this is, it’s going to be a big change for all of us.

I will no longer walk him to school. He will use the transport provided by the school. Independence wise, It’s a massive step. If he were to remain in mainstream, there’s no way I could allow him to walk to school alone as some of the older children do because he’s too lost in his inner world to be aware of the dangers around him. He’d also copy the knobends who walk across school crossings when the red man is showing. What kind of example to kids is that?!

I want my son to live a full and happy life. I love him, so I have to start letting him go because the job of a loving mother is to let her children go. Even children with severe learning difficulties need a level of independence from their parents – even if it’s just for a few hours a day.

It would be easy to protect The Boy from the world and wrap him in cotton wool, but I would be failing him as his mother. Being too afraid to leave his own four walls because he’s stricken with anxiety or depression is no life at all and I speak from experience here. I grew up undiagnosed with no support and I’ve struggled EVERY step of the way.

I know I won’t be around for ever, so I must prepare him for that eventuality.

The Boy is limited by his diagnosis, but it was vital in order for him to access the support he needs. However, as things stand today he would be refused jobs simply because he’s autistic. Hopefully attitudes will have changed and companies will understand the value of autistic employees in the workplace by the time he is ready to enter the world of employment.

So, in a few weeks The Boy will start a new chapter in his life. I will stand outside our house as he gets onto the school bus and I will wave him off with faked enthusiasm – not because I don’t care, but because I care too much. I will have to call on ALL my acting skills to suppress my overwhelming emotions. As soon as the bus is out of sight I will probably go inside and drop-kick a cushion to the floor. Then I will collapse on it in a flood of tears..

My boy won’t be five minutes around the corner anymore. I won’t be able to walk past the school and wonder what he’s doing. It freaks me out just writing about it. I know I will struggle in those first few months. I will worry how he’s doing? If he’s happy? If I’ve done the right thing? Then I will remind myself that I am a mother. This is my job. His brothers are living their lives and I owe it to The Boy to give him the tools to be as independent and happy as they are.

The Boy is more than my son. He is a human being in his own right and a beautiful one at that. He shines as special children do. I want him to understand the positives of living inside the rainbow, because autism isn’t the tragedy that people imagine it to be. The tragedy is in the ignorance of people who don’t understand autism.

So, on with the journey.

 

 

 

 

 

 

 

 

Confessions of a Hypochondriac

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

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

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

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

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

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

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

I like to think it read something like this..

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

Wednesday: Guffed. Put myself into a coma.

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

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

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

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

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

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

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

Avoidance is a killer.

There is a midway between avoidance and obsession.

AWARENESS.

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

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

P.S Calcium supplements can make your poo pale.

P.P.S They can also constipate you.

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

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

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

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

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

I tentatively prodded the ‘mass’ with my finger.

As you do..

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

I texted OH: MY FUCKING BOWELS HAVE FALLEN OUT!

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

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

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

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

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

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

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

My GP obviously didn’t have a clue.

So I consulted another one.

Dr Google.

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

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

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

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

Quite.

Turns out my ‘prolapse’ was hard poo.

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

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

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

I thought it was bowel cancer.

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

There’s NO shame in being a hypochondriac.

Some of the world’s best have been hypochondriacs!

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

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

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

I was having a mental breakdown.

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

IT WAS TERRIFYING.

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

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

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

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

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

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

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

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

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

The End.

 

 

 

 

 

Anxiety: All Aboard The Crazy Train

 

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

This is health anxiety.

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

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

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

Or ever will.

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

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

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

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

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

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

Have another read through the list!

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

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

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

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

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

‘THIS time, I’m really ill.’

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

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

It is important that I don’t CATASTROPHISE.

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

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

Nope.

Don’t believe everything you think.

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

Way to go, me.

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

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

The crazy train will come for you.

YOU DON’T HAVE TO CLIMB ABOARD.

 

Anxiety: Rewiring The Brain

 

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

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

I understand anxiety.

I understand panic disorder.

Knowledge is power.

So, the educational stuff..

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

Tex

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

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

Simplified: Tex thinks.

The Amygdala or Amy for short. (see above)

Amy

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

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

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

I SCREAMED THE HOUSE DOWN.

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

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

Simplified: Amy reacts.

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

I have both.

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

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

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

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

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

The Sympathetic Nervous System (SNS)

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

Adrenalin and cortisol are released.

Our hearts beat faster.

Blood pressure goes up.

The digestive system slows right down.

We tremble, sweat or get the chills.

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

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

The Parasympathetic Nervous System (PNS)

Heart rate slows

Blood pressure lowers.

Gastric juices increase enabling digestion.

Breathing slows down.

Body temperature returns to normal.

PNS is the body returning to normal.

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

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

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

Things you can do include:

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

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

Relaxation therapies include:

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

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

Moving on..

Breathing

We need to breathe or we die. Simple.

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

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

Try it when you feel stressed.

Take a big breath in.

Feel your diaphragm expanding.

Then let it out s l o w l y.

Do this another three or four times.

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

If you do nothing else, learn to breathe properly.

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

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

It slows my heart rate down.

It calms me.

It stops Amy from launching into action.

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

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

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

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

Cheesey vector art to close the post.

 

 

 

 

 

 

Autism and Burnout

Burnout is a chronic state of stress which leads to physical and emotional exhaustion. It might manifest as anxiety or depression or both.

The Signs Of Physical and Emotional Exhaustion

  • Fatigue: You lack energy and feel more tired than usual.
  • Insomnia: Starts with the occasional bad night and progresses to the inability to sleep or stay asleep every night.
  • Concentration: Lack of sleep affects concentration and the ability to complete tasks.
  • Physical Symptoms: Palpitations, chest pain, chills, stomach aches, headaches and hundreds of other physical symptoms that make you worry that you are gravely ill which in turn forces you even further down the wormhole.
  • Illness: Your body becomes more susceptible to immune related illness.
  • Appetite: You may lose your appetite or go the other way and over-eat, especially sugary or high-carb foods.

Alongside the physical signs, there are emotional signs.

  • Loss of enjoyment about things you love.
  • Negativity: You become pessimistic about everything. In my case, it isn’t glass half empty. It’s glass smashed into smithereens all over the floor!
  • Isolation: Socialising is hard work for most autistic people but during burnout, we don’t have the energy or inclination to socialise at all. This includes social media.
  • Detachment: As an autist, I have always felt detached from everybody else but detachment from burnout can be a detachment from everything including yourself.

When you reach this stage it is illness.

A lot of autistic people will reach burnout stage at some point in their lives. The reason is that trying to exist in an NT world is stressful and exhausting and the human body can only take so much battering from stress hormones before it starts to burnout.

Burnout.

Nervous Breakdown.

Shutdown.

Call it what you will but it ALL amounts to the same thing.

Your body has had enough and is no longer whispering words of warning to you. IT IS SCREAMING AT YOU TO FUCKING DO SOMETHING!

The whispers started for me as a small child when I constantly felt sick or threw up and was living in a constant state of fear.

The whispers got louder as a teenager when I developed an eating disorder as a way of trying to gain control of my own life.

As a twenty-something the whispers told me that it wasn’t normal to be seeing ‘black things’ scurrying across the floor that nobody else could see or imaginary spiders in front of my eyes.

At thirty-something I tried to shut the whispers up with alcohol.

At forty-something my mother died and I had my first nocturnal panic attack.

At 46 years of age I had a nervous breakdown.

Finally, my body said ‘ENOUGH’.

Physically and mentally, I burned out.

My body has pumped so much adrenalin into my system that my fight or flight response now triggers when it shouldn’t – like in response to my dreams or the heating coming on. This is why I have insomnia. This is why I wake up in the early hours every morning.

Why do autistic people burn out?

The more ‘highly functioning’ we are, the more is expected of us and the more we push ourselves to be neurotypical. People can’t see what’s going on inside of us. They just see somebody who ‘looks’ perfectly normal. The effort it takes to be able to pull this off is phenomenal and sooner or later, the consequences will be burnout.

A lot of autistic people suffer from anxiety and anxiety means fear.

We fear walking out of the front door into a noisy and confusing world. We fear having to socialise. We fear having to make small conversation at work. We fear that we will lose control. We fear people being able to see past our pretence of being neurotypical. We fear rejection. We fear there being no escape route.

We fear.

Our hearts beat faster. Our bodies are constantly primed to fight or run. The fight or flight response is triggered numerous times a day and over time it takes longer for our bodies to recover from it. Eventually, even the fittest of us will succumb to illness. Either physical, mental or both.

Once you have had a breakdown you are never the same. It’s an invisible scar. A wormhole opened up and you know that it won’t take a lot for you to lose yourself down there again. As if life wasn’t already tough enough? Now there is this fragility about you. The difference is that by now you know you have to take better care of yourself and your needs.

You learn to say no.

You learn to let go of people/situations that drain you.

You accept your limitations.

You will hang up the neurotypical ‘skin suit’ for good.

What the fark is a skin suit?

If you’ve ever seen Men in Black, you’ll be familiar with the big ol’ ‘bug’ who comes to Earth. The alien nicks farmer Edgar’s skin so he can look less, er, conspicuous. Only it’s not his skin, so it doesn’t fit. He looks weird and it makes him uber cranky because it feels pretty shit to be wearing someone else’s skin. A bit like trying to cram yourself into size ten jeans when you are a generous twelve..

Feeling ‘alien’ is a feeling that a lot of autistic people identify with. We feel like we don’t belong here and a lot of us pretend to be neurotypical in order to not stand out. It’s an act and acting requires effort. When we shut the outside world out, it’s such a relief to finally be us.

My breakdown coincided with my diagnosis and even though I am still fighting to rid myself of panic disorder and insomnia, I am finally free of the constricting neurotypical suit I’ve been inhabiting for the majority of my life.

I feel lighter.

I don’t push myself to be ‘normal’ anymore.

If I can’t go to social functions I don’t beat myself up about it.

If I can’t face shopping in the supermarket, I’ll do it online.

I haven’t given up on life. I just find ways that make living a little easier.

When I get overwhelmed I shut myself away like I have always done. The difference is that I no longer feel guilty about it. People can think what the hell they like because you know what? They will anyway because that’s what people do.

This is no longer about them.

It’s about you.

It’s about self-care.

With social media, I get overwhelmed pretty quickly so I have learned to give myself breaks from it and to limit time spent on the internet. The internet can get pretty intense and I soak up the negative stuff like a sponge. Bad news and hate is all over the internet. It affects me, then I get ill. Yes, we live in a computer age and the internet can be useful but it can also be damaging to your mental health so it’s up to us to police our internet time so it works for us not against us.

I have also accepted that I can’t do ‘life’ on my own so now I ask for help when I need it. Being autistic, there are certain things that I struggle with. Asking for help, isn’t being weak. It’s self-care.

The thing is that I’ve have put so much effort into existing that I’m exhausted and for what?

To fit in?

So I don’t offend people by saying no?

I’m done with all that.

We should all be done with that, right?

If you can identify with this post. Please don’t let another day go by where you live your life on somebody else’s terms. If it hasn’t already, it will make you ill.

It’s time to be the fabulous human being you were born to be.

It’s time to be you.

“If you celebrate your differentness, the world will, too. It believes exactly what you tell it—through the words you use to describe yourself, the actions you take to care for yourself, and the choices you make to express yourself. Tell the world you are one-of-a-kind creation who came here to experience wonder and spread joy. Expect to be accommodated.” ~ Victoria Moran – Lit From Within

 

 

 

 

 

 

 

Five Reasons I Hate Snow

 

1~ It’s cold.

Snow can be cold. The kind of cold that strikes through to the bones and freezes your snot. People say that children don’t feel the cold but they obviously never met the likes of me. Soggy mittens were never my idea of fun, people, hence I generally ‘enjoyed’ the snow from the warmth of the dining room window. That said, there have been moments in my menopausal journey where I would have given my right nip to be able to shove my face in a snowdrift..

2~ Aesthetics

There is something quite beautiful about fresh snowfall. I always marvel at the white blanket that magically transforms even the shittest of places.

Then humans and animals ruin it all.

First come the size 14 boot prints of the milkman.

Then, come the patches of yellow snow..

There is nothing remotely picturesque about a snow filled garden when you have dogs. Even less when it’s a small yard.

Then there is the joyous act of cleaning up after your four-legged friend has taken a dump in the snow..

Never had the pleasure of digging out a dog turd from 8 inches of snow?

You’ve never lived!

*snorts*

Lets not forget the lazy-arsed owners who genuinely believe that their dog’s excrement will dissolve in the snow so there’s no need to get that poo bag out eh?

What actually happens is that once the snow has melted – the pavements are smeared with poo which gets on everybody’s shoes and into their homes. Incidentally, these are the same breed of dog owners who believe that slinging shit bags into trees makes them inconspicuous.

*double snort*

3~ Driving

The problem with this country is that we are never prepared for wintry conditions. Our cars suddenly turn into Torvill and Dean – only less graceful.

To be fair, it’s the scariest thing to find yourself sliding down the road with absolutely no control whatsoever. I’ve had a few ‘squeaky bottom’ moments in my time so I avoid driving in the stuff whenever possible. However, I still get anxiety from watching other drivers sliding perilously close to my car as their back wheels have a mental breakdown.

Note to self: Next house must have a driveway.

4~ Snowballs (and other bodily parts)

No matter where you are or who you are with, at some point some idiot will throw compacted snow in your face and fall about laughing. For some reason, this is considered normal behaviour? But if I was to fast-spin a cricket ball at them, I’d be hand-cuffed and trundled off to the police cells.

*throws hands up in the air*

Then there are the snow-people complete with balls and boobs..

Nothing says Christmas quite like the sight of a snowman with a massive set of knackers on the front lawn, eh?

5~ It’s Slippy

As I’ve got older, there is another reason why I hate snow and ice.

It’s slippy.

The problem is that I have Osteopenia.

Osteopenia? Isn’t that a film about mods?

No, that’s Quadrophenia.

Osteopenia is the pre-curser to Osteoporosis. In other words – thinning bones. This means that I am more likely to break a bone should I fall over. Even a minor fall could have serious consequences. *serious face*

This is monumentally crap because I’m only 47 but it is what it is and all I can do is protect myself as much as I possibly can. So I fit contraptions to my boots (cleats) to stop me falling over and they do work. I am the ONLY parent on the school run who wears them. However, the well-being of my bones trumps dignity, no?

Note to self and other snow grip users: Do NOT attempt to walk on a tiled floor with your ‘cleats’ on. You’ll be on your arse faster than you can say Bolero!

Then there are the women who wear high heels when the pavements are blatantly icy. What’s more is that they manage to stay vertical! There’s me taking tentative steps despite the protection of my grips and they overtake me wearing stilettos as if they didn’t get the memo that it has snowed!

Witchcraft?

One theory is that the heels act like little ice-picks so maybe there is some method in this madness?

Even so. I think I’ll stick to my flat heeled boots and snow grips, ta very much. I’d rather look like Nanook of the North than end up sprawled on the pavement with a busted hip.

So, there are my five reasons why I hate snow.

Let it snow, let it snow, let it NOOOOOO!!!

I rode on a plane a couple years ago with Snow Patrol and didn’t know who the hell they were. They said they were big fans of mine and were playing Madison Square Garden. And they let me listen to one of their records on their iPod. I started to weep. ~ Neil Sedaka

 

 

Spontaneity Hurts.

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

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

It certainly doesn’t work that way for me.

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

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

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

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

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

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

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

Take Christmas, for example..

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

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

Every year he says, ‘We’ll see’.

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

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

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

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

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

An example of spontaneity malfunction from my childhood..

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

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

Here’s how.

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

The Many Moods Of The Menopause

Most women are used to being moody for two weeks out of every month, right? Our significant others understand that all a woman wants during her premenstrual and menstrual phase are painkillers, a hot water bottle and a family size bar of chocolate and if we don’t get those things we’ll be up on a manslaughter charge. Diminished responsibility, obvs.

Here’s the thing..

Menopausal women don’t get a break from the mood swings. The length of time it can take for things to settle down vary but it can take up to 15 years for all the symptoms to subside.

FIFTEEN YEARS!

When it comes to our ever changing moods – think of them as a relay race where Happy starts off and passes the baton to Irritation – who passes the baton to Anger – who passes the baton to Psycho – who passes the baton to Melancholy – who passes the baton to Guilt who sprints through to the finish.

THEN IT ALL STARTS AGAIN AND NOR NECESSARILY IN THAT ORDER.

Irritation

Everything and everybody irritates you. Nuff said?

Psycho

This is turbo-charged irritability.

Scenario: Mrs X has struggled with hot flushes ALL day. Her boss is an inconsiderate arse biscuit who’s fed up of her numerous visits to the loo to stick her furnace face under the cold tap. She fights her way home in rush hour traffic, then opens her front door to find her living room is a shit-tip. The carpet is 50% dog hair, 50% Pringles. The dishes are doing the leaning tower of Pisa in the sink. The house smells like somebody died in it and the culprits behind the chaos are staring lifelessly at the X Box in some kind of gaming-induced coma. The only reason Mrs X knows they are alive is because their thumbs are still moving..

Mrs X realises that while she’s been slaving away at work, the lazy oafs she heaved out of her vagina sixteen years ago have been sat on their backsides killing zombies all day and calling each other ‘dude’ or ‘man’.

‘Pass the Pringles, Man’

‘Dude. WTF?! You killed me!’

Mrs X starts to feel the familiar sensation of heat rising from her chest upwards..

This is where she goes from irritated to PSYCHO.

She starts yelling. This may or may not be coherent. Then, she starts chucking stuff. First, her handbag hits the wall. Then she frenziedly starts yanking wires out of sockets, spitting out a few effs here and there. This gets her offspring’s attention because to prematurely end a gaming session is like shutting off a life support machine. If you were to look closely enough, you’d notice that they were turning blue..

Once the X Box is in bits all over the floor, Mrs X slams off upstairs for a weep and by the time she resurfaces, the living room’s had a make-over, the dishes are done and all the knives have been hidden.

Unsurprisingly, ‘Psycho Mum’ gets things done because she’s fucking terrifying!

Anxiety

Fear loves the menopause. Having entered into this stage of life, we become more aware than ever of our mortality. We gauge our longevity against that of our mothers and grandmothers. We fear the future. We fear getting old. We fear forgetting. We fear being alone.

We fear everything.

Melancholy

Once we know our reproductive days are over, some women break out the Champagne. Others just get sad. They grieve for the babies they will never have despite knowing that they wouldn’t have had anymore anyway because they’ve, like, been there, done that and worn the tee shirt OVER THEIR HEADS!

Also, their wombs are like withered balloons.

In all honesty, if they were to heave another human out of their fadginas, they would probably need a safety net as part of the birthing plan.

So, we cry for our youthfulness because it’s apparently buggered off, dragging our ovaries with it. A few gins and Spandau Ballet’s Greatest Hits on the iPod and we’re sobbing for Britain. Why? Because when Tony Hadley first crooned the lyrics to True back in 1983 – when we were in full possession of our hormones, faculties (ish) and teeth.

Also, we had GREAT hair!

Disconnection

Sometimes women find that their entire personalities change. They don’t recognise themselves anymore. Their bodies are different. Their minds are different. They feel different.

Sometimes, women feel as if they they’re going crazy and people say: ‘You’re effing crazy, you are!’

To be fair, they have just lobbed hubby’s best golf club over the back fence in a fit of hormonal rage..

But you know what? This menopause lark is NOT easy for many of us.

If people could spend a day being us – they would understand that it’s not craziness – it’s exhaustion, depletion and bewilderment.

It’s also a sense of disconnection, as if we are observing ourselves? Rather than owning our own bodies and minds. It’s hard to understand that we can never be the same as we were before the menopause. It’s just not biologically possible.

Hysteria

Have you ever started laughing at something funny for it to morph into hysterical crying?

This happened to me.

One minute I was laughing at Victoria Wood singing about being Freda being bent over backwards on her hostess trolley. Proper belly laughing. The next I was crying hysterically and OH was debating whether or not to call the chaps in white coats to come and inject me.

The cause?

Hormones.

Those little shits are the reason behind ALL the crappy bits of menopause.

Lack of Motivation

Basically, you get days where you have zero motivation. That pile of ironing? Sod it. Need to go shopping? Sod that too! You make a date with your duvet and something with Colin Firth/ Sean Bean/whoever in it and woe betide any human over the age of 14 who tries to come between you and your 13.5 togs!

Happy

We get moments of happiness too. Hurrah! Granted, these moments can turn from happy to not happy a bit sharpish (Boo) but you’ve got to understand that it’s all down to hormone imbalance.

It won’t always be this way.

One day your feral hormones will start behaving themselves. The hot flushes will trail off. The moods will stop swinging. The brain fog will clear and you will accept your new ‘norm’.

But inside you’ll always be 16, eh?

Mullet Queen 1986