Checking In

It’s been a while since my last post. It feels like forty years. Given the nature of Invisible Illness, I thought I’d better check in and say I’m still here, just about.

You see, after my last post, a follower and friend messaged me to ask if I’d ever considered I might be autistic. Strangely enough, about a year ago another friend shared this image on Facebook on autism in girls, and I commented how that was me as a child. But I couldn’t go 42 years without knowing something like that about myself, surely?

Erm, yes. Turns out I could. I’m still awaiting an official diagnosis (not a priority for the NHS) but my GP concurs that I show all the traits of high-functioning autism, what once would have been called Aspergers.

It was like being given glasses for the first time, or maybe a tiny bit like finding out you’re adopted. Suddenly life made sense. Turns out 42 is the answer to life, if not the universe and everything.

I’ve spent the last six weeks reading everything I can and replaying my life through this new filter. Exhausting but incredibly enlightening. All the parts of me, of my life, that I thought were broken were actually a result of me being ‘neuro-divergent’. The phrase ‘normal, not normal’ springs to mind. Mostly, for the first time in forever I don’t feel alone. (Go on, who now has a Frozen song playing in their head)

There’s a whole post to write on female autism and why it goes unrecognised. A second on high-functioning autism and why that’s a misnomer. A third on realising other family members also show traits, and the stress that’s put on our family unit, while at the same time bringing hope. Another on having a (suspected) autistic child and helping the world understand them without making them a victim.

I don’t have the energy to write any of them right now. If you’ve ever had therapy, or even a soul-bearing heart-to-heart, you’ll know how draining that is. Re-playing my whole life, all the complicated lonely anxious mess of it, and picking out new patterns has left me with an exhaustion I haven’t felt since having two babies under 2. (And realising some of those horror years of acrimonious self-doubt might have been avoided if I’d realised two out of the three of us were not neuro-typical is heartbreaking).

Anyway, it’s all good. It can only get better. We can only get stronger. There might not be a lot of NHS support, but there is plenty from friends living the same life.

And it turns out that most of the girl protagonists in my children’s books could be considered on the spectrum, so I can thank them for helping me make sense of my differences, even if I didn’t know it at the time.

More than anything, I am grateful beyond words to the very good friend who messaged with her suspicions about my place on the spectrum. There is a strong chance she literally saved my life.

The Invisible Illness

I am not going to take my own life.

I say this to myself every day. Like an alcoholic choosing not to drink.

But I want to talk about it. If it’s going to be upsetting to you then, please, re-read the first sentence, and then perhaps give this post a miss.

Mental illness is talked about now. Suicide isn’t always seen as the coward’s way out. There is recognition that it’s an illness. But it still isn’t, and perhaps never will be, understood.

Because it is invisible.

Cancer. That’s another big killer. You can see cancer. You can see shadows on an x-ray. You can tell someone is doing battle by their scars: the hair loss, the weight loss. The look in their eye that says, ‘I’m going to beat this bastard, you see.’

And I’ve known people that did beat it. And some that didn’t.

But here’s the thing. It’s an ‘it’. It’s an intruder. It’s visible.

With depression, anxiety, suicidal thoughts, despair, ennui, whatever you want to call it, it’s ‘you’. It’s not ‘other’. It’s there inside your head. It sounds like you, thinks like you, it can control your emotions. It can make you cry uncontrollably. It can make you feel sick and shaky at the thought of dinner with friends. It can make you look at the river, every single time you walk past it with the dogs, and say, ‘Well, why not?’ So that the other you – and we all have several voices that chat in our heads, right? – the other you has to say, ‘SHUT UP. Don’t be so fucking melodramatic. I’ve got this. I don’t need to lie down and not get up.’

But imagine having to have chemo every day, with no one having a clue, not even nurses. Imagine that, on the occasions you wanted to say to someone, ‘Chemo makes me vomit, makes my hair fall out and my skin smell of chemicals and it’s horrid,’ but actually what you want to say is, ‘I see no point in living, I get up every day because I have to. I love my family, but that doesn’t fill the darkness inside. I stay because I know they would blame me if I went, but I just want to sleep and never wake up.’ Yeah, I can see how that would go. Selfish, much? Or, my favourite, ‘we all have days like that.’

Did you ever say to someone having chemo, ‘yeah, I had it yesterday, it’s a bitch right?’

My dad had chemo. He fought cancer and beat it. But he died anyway, of septicaemia. But do you know what I think actually finished him? He lost the will to live. Literally. It’s complicated, and it hurts to think of it, but certain events in the weeks before he died made me think that he had just had enough.

I know three people (or three people that have told me) that have lost loved ones to suicide. And I’ve heard that confusion, betrayal, despair. The, ‘Why didn’t they just ask for help?’ The heartrending, ‘What could I have done? Why did they leave when people loved them?’

I’ve felt some of that with Dad. I should have been there that weekend, when he got pneumonia. I mean, I actually should have been there, but we changed our plans. I’d meant to buy him a heater for his room, but for some reason (too expensive?) I didn’t. I didn’t find out he had died for two days. It took me years to get over that guilt. But I never once thought, ‘Why did he give up, he had family that loved him.’

Because the thing is, when it comes down to it, it’s just you and the illness. You’re not thinking in big pictures. Love can feel like a burden, because it’s anchoring you to a place you don’t want to be. When you drag yourself out of bed every day, to give yourself to others, in search of meaning, or out of duty, the love gets twisted, lost.

I’m better if I’m busy. If I don’t give the thoughts room to talk and grow and suffocate me, I can reach contentment. But, here’s the kicker: my illness makes work very difficult. I am easily overwhelmed. Noise can flip me over the edge. If I get tired, I get emotional and say things I shouldn’t to people that don’t forgive (or don’t know). I’ve had two ‘proper’ jobs in my life and I left them both because of my mental health. And so I’m frightened to go back.

Job adverts are all about ‘resilience’. I looked up resilience yesterday. It literally means, ‘to bounce back’. Well, I do that every time I have a panic attack. It takes a day or so, but I bounce back and get on with life. But it doesn’t just mean that, not in a workplace.

I read this interesting article – from 2002 but still relevant – How Resilience Works, from the Harvard Business Review.

resilience

The article cites three things required for resilience. 1. Facing down reality (basically not being overly optimistic). 2. The search for meaning (seeing life as part of a bigger picture). 3. Ritualised ingenuity (the ability to make-do with what’s around you to solve problems).

I’m pretty good at one and three, but two is a problem. I highlighted this quote:

“[M]eaning making is, most researchers agree, the way resilient people build bridges from present-day hardships to a fuller, better constructed future. Those bridges make the present manageable, for lack of a better word, removing the sense that the present is overwhelming.

The present is overwhelming. Yes, that’s it. I see no future without depression, no future where I’m not battling every day to find a reason to keep fighting, and so every day is overwhelming.

I then found a more recent article by the Harvard Business Review on Resilience, from 2016, (I told you it was the key term for business) called, Resilience is About how you recharge, not how you endure. It starts by explaining that resilience shouldn’t be about how long we fight, but how quickly we recover.

We often take a militaristic, “tough” approach to resilience and grit. We imagine a Marine slogging through the mud, a boxer going one more round, or a football player picking himself up off the turf for one more play. We believe that the longer we tough it out, the tougher we are, and therefore the more successful we will be.

The reason I left both my ‘proper’ jobs, the reason they broke me, was because they were relentless. Long days, high stress, lack of support, and an expectation that you were never ill. Leaving at 5pm was called a ‘half-day’. That was a decade ago, and I know (apparently) things are better now. But it’s still frightening. I once had a boss tell me to take a couple of days ‘to get a better attitude’ after I’d lost it at him. Turns out, he was on the money. I went hiking in the Lakes and came back rejuvenated. But the ‘get a better attitude’ part has stuck with me ever since. It was my lack, my failing, that was the problem, my inability to stand the pace.

The key to resilience is trying really hard, then stopping, recovering, and then trying again.

We are beginning to understand this. It used to be called a duvet day, which sounds terribly indulgent. Now it’s called self-care. It amounts to the same thing. Switching off. Literally. Turning off the phone, crawling into whatever space makes you feel safe, and disconnecting.

The danger for a depressive, however, is that’s the space where the voices hide. Lying in bed because you can’t function as a normal human being isn’t always restorative. So another kicker for resilience.

There are two memes on Facebook that I love at the moment:

jomo

I did this last night. Although joy is the wrong word. But I stayed in as a form of self-care. I had FOMO (Fear of Missing Out) too, because I’d been looking forward to dinner with my friends. But I turned off my phone, so I wouldn’t see all the WhatsApp messages, and I looked after myself.

The other one is key, though:

fien

My son asks me every five minutes if I’m ‘okay’ especially when I’m clearly not. I say, ‘I’m fine’ to reassure him. Yesterday I had to say, ‘I’m not fine, but I’ll be okay, please can you stop asking.’ Thankfully he’s the most emotionally mature eight-year-old and he understood.

Sometimes ‘Fine’ is the best answer I have. Because people don’t want to hear the truth or they’ve heard the truth so many times it gets tedious, or they feel helpless because they know they can’t make it better. People like to fix things. People like to fix people. It isn’t always possible.

When I explained to my friends last night, they were the perfect friends. “Tough” one response said, “You’ll be missed”. As in, we know it’s tough but we understand, and we won’t stop asking you to come but we won’t pressure you either. Perfect. It’s taken a long time to find friends like those, because anxiety doesn’t leave much room for friends.

Anyway, today is a new day. I am resilient. I bounce back. Thanks to those friends I have a plan, a future I can prepare for, that will help with the overwhelming now. I battle on.

But the next time you hear someone say a suicide is ‘the easy way out’ or ‘selfish’ or ‘cowardly’, send them my way, and I’ll give them some context.

Craft and Karate

My daughter’s masterpiece

Hello! Happy New Year.

I hope everyone survived the festive season and danced, limped or crawled into 2019.

I definitely dragged myself in, whimpering and wishing for the end of days. But what a difference a week (and the kids going back to school) makes.

Regulars here will know I don’t do resolutions – such a negative way to start a year. I must quit this, be that, do more of yada, be a better me. Urgh. What’s wrong with just being you, only maybe a bit more focused and content?

So instead I have two goals: pass my brown and black belt exam in either July or October, and empty the house of crap in case we move (which we might have to do for schools).

Then it’s easy.

Want to eat the cake? Fine. But remember that’s twelve stone of you that needs to do two hours of karate and then a thirty minute exam. Good luck with that!

Want to buy that piece of tat from the charity shop, or ten balls of wool on special offer, or the kitchen gadget from Aldi? No problem, as long as you’re happy to pack it in a box if you move house.

My first complicated cross stitch

So, we’ll see. I’m lying here unable to move without pain because I did my first ever weights class yesterday, so when it hurts even more tomorrow I might not be so chirpy!

The other thing I’m making time for while I still can (because full-time employment is a must if we want to move) is craft.

I discovered cross-stitch before Christmas and I love it. And, after a rather large hint, hubbie got me a travel easel for Christmas. With decluttering in mind, sewing and painting (on board) take up much less space than knitting and giant abstracts. Plus my daughter can happily do both, so that’s a win.

Fame at last! Hee hee

And writing? We’ll have to see. I want to write a story featuring karate, so that might tie into my goals. I started one, but wasn’t sure where it was going. Any ideas or suggestions gratefully received!

In the meantime, I’m still enjoying seeing my books at the local library and, even better, not seeing them because they’re out. It might not mean sales or reviews or a book deal, but mostly what an author wants is to know their books are being read.

Anyway, pets are calling, time to feed the zoo. May the new year bring you contentment, fulfilment and peace, at least for a few moments now and then. Failing that, may it bring you a cup of tea and a stonking good read.

My Twelve Days of Christmas

On the twelfth day of Christmas my family gave to me

Twelve minutes’ silence

Eleven days til Hamilton

Ten years of parenting

Nine filthy rooms

Eight more days of school

Seven unshipped presents

Six empty cupboards

Five hungry rodents

Four loads of laundry

Three annoying children (including hubby!)

Two stinky dogs

And an empty cup of tea for Mummy!

Happy Christmas! And may all your online parcels arrive on time (even the ones you accidentally ordered from China)

The Superfan and the Psychometric Test

img_6357Doesn’t that sound like a book title to grab the attention, if only for the wrong reasons? Maybe for my next book I should come up with a random title and then write the book to fit? Anyway I digress. The title actually refers to the highs and lows of my weekend.

On Saturday I had an ‘author event’ at our local library. Originally it was going to be a book reading and signing, but that got cancelled due to lack of interest (it was on a school night) and swapped for a Saturday morning craft session. Only I forgot to sort crafts. So at 5am Saturday, full of cold, I searched Pinterest for ideas, and produced craft unicorns, Minecraft Torches and bookmarks. I was still cutting out cardboard at 9.30am when I was meant to be leaving for the library! Me, disorganised? Hmmm.

Anyway, it was a bit of a washout. Five or six  girls made unicorns, but no one really knew why I was there. (The minecraft torches ended up being used for my son’s Nativity Pringle Pot, so not totally wasted!) Until a young lad came in, carrying a copy of Hope Glimmers. And next to him, his dad, who it turns out I went to school with. But they were there to meet Mandy Martin the author, not Mandy Jarman from school. The dad’s surprise when he figured I was me was awesome. The best part, though, was that Hope Glimmers had been purchased online and they’d brought it to be signed. By me. Like I was a real author or something. And when I said there was a new book based on Minecraft, the lad’s smile made my year.

img_6353

Nativity & Santa Pringle Pots

I read an article a while ago (written in 2008 and updated here) by a guy called Kevin Kelly, who said that what creative people need to succeed is a 1000 true fans; superfans who will buy anything you produce. I’ve never had a superfan before, generally my books are bought by people I know, or anonymously on Amazon, where without reviews you don’t even know if they liked it. I’m not saying this boy was really a superfan, but it certainly felt like it at 11am on a Saturday morning as I signed books for him.

My happy bubble was short-lived, however, when I received an email from Boots (a High Street Pharmacy Company, for non Brits) with feedback on a job I had applied for as a trainee pharmacy dispenser. Please note, ‘trainee’. As in, to be trained to do the job, surely?

This is my first experience of interview by computer and I’m not impressed. Having clicked ‘apply’ through the job website, they asked for my job (just one) and my education (just one), so I put Invigilating and a Masters in English, as my two most recent. No request for CV or experience or anything. Just an email with a link to a psychometric test.

Now, I hate psychometric tests, especially now I’ve been out of the work game for a while and am fully entrenched in ‘me’ because ‘me’ is a socially-awkward introvert who finds people challenging. But ‘work me’ is outgoing, confident, creative, innovative and all that jazz. So anyway I tried to understand what the questions were getting at, although that’s pretty tough in most psychometric tests as that’s the whole point of them. Except we’re not all black and white, either or, ‘this statement best reflects me’ without context.

I worked in a bar when I was a uni student, and loved it. In fact I wanted to be a bar manager when I graduated, but my first class degree actually proved a sticking point in the interviews I went to because the starting salary was so low. Anyway, six months after I’d been working in the busy train station pub, dealing with difficult customers and working alongside a team of twelve people, they made me do their psychometric test ‘for their files’. I failed. They said they would never have hired me because funnily enough it showed that I am a reserved introvert who doesn’t much like people. Thankfully they had six months’ experience of me being a complex human being who was able to act a role at work, convincingly too, and they trusted me enough to have me run as assistant manager for a while.

Given all that, I shouldn’t have been surprised when I failed the test from Boots. But I was. Surprised and gutted (the job was perfect for me). And angry. Because this was their response:

We’re sorry to have to let you know that you haven’t been successful on this occasion due to the level you attained for the questionnaire assessment.

You will need to allow a 12 month period before applying for a similar role as this will give you adequate time to develop your skills and experience.

Adequate time to develop my skills and experience? How do they know anything about my skills and experience? They didn’t even ask for my CV. See that I’ve worked front of house in Hotels, Restaurants, Youth Hostel, Bars and a Clothing Store. See that I’ve worked as a Marketing Manager with direct reports, worked in Communications and handled the grumpy ‘Letters to Director’ that were received. I could go on. And I did, in my head, at 3am, full of cold and disappointment and a little bit of despair. This was a trainee role, where presumably a person would be given the relevant skills and I didn’t even get a look in.

Sigh. Breathe.

It doesn’t matter. A company that interviews by bot is not one I want to work for. But it’s battered an already bruised confidence.

Thank goodness for superfans, that’s all I can say.

Definitely Drowning

It turns out teaching is a bit like parenting, once you make your announcement, people can’t wait to tell you how dreadful it will be.

Only whereas, as a not-yet-parent, I could dismiss all the scaremongering and doomsaying, now I know better. Parenting has taken me to edges I didn’t know were there and left me drained, frightened and unsure of everything.

Not a great position from which to make a great leap forward.

Yesterday I had my compulsory ‘Safeguarding Children’ training that I need as an invigilator. Only this time I listened with increasing horror as teachers swapped stories about neglect and abuse. One or two ‘examples’ of neglect – such as letting a child watch videos late at night – made me question my own parenting.

And then the lovely teacher delivering the training explained that, as adults working with children, we can be held personally liable for a failure to report or disclose a concern. Suddenly I felt like I was standing on a sea wall facing a tsunami.

But I know my anxious brain magnifies worries and turns everything into the monster under the bed. So I went to talk to the charismatic teacher, who clearly loved his job, despite everything he’d been sharing. Tell me about teaching, I pleaded, everything I’ve read and heard makes it sound terrifying. And he said it was rewarding, and gruelling and disheartening and very hard work.

And then he said, ‘As long as you can engage with the students, you’re fine.’

I’m screwed.

I’m the least-engaging person I know. People confuse me, and I spend most of my time trying to second-guess what they’re thinking and feeling. Which I don’t even get right with my family most of the time, so goodness knows how I’ll manage with hormonal teenagers.

My husband’s very pragmatic – take it one day at a time, it’ll be fine. But so far I dipped my toe in the idea of teaching and got swept out to sea. And you have to ask, if they’re so desperate to drag you in with mentors and bursaries and personal plans, what are they not telling you?

Working as a train driver is starting to sound appealing.

Waving Not Drowning

Hellooo! I can’t believe another month has blustered by in a swirl of dead leaves, and still I haven’t blogged. Rubbish. I feel like I’m strapped to a dinghy and I’m travelling down a grade five river, out of control with too much sensory input and not enough breath to scream.

Well, actually that’s all a bit melodramatic, but I’ve been gorging on Sky Arts painting programmes as better for my mental health than murder-mysteries, and the language is quite hyperbolic and addictive. They’re always looking for the bold and innovative and brave (the opposite of little guinea pig me, darting at shadows).

That said, I’m making decisions that will shape mine and my family’s future, so hyperbole is perhaps not misplaced. And actually it started with the art programmes. Having decided that my 42-year-old brain couldn’t handle learning C and Python, I was back to square one. I decided to brush up my Microsoft skills, since I find excel fun to use, and needed a backdrop to drown out noisy neighbours. So Sky Arts.

I watched Portrait Artist of the Year, Landscape Artist of the Year, and The Big Painting Challenge. And remembered how much I love art and how I should have done that instead of History. To cut a long story short I investigated all possibilities of doing A Level or Foundation Art, with a view to teaching, and realised it was too expensive.

But teaching has floated as an idea since forever. Dismissed because I don’t do people, and fifty-hour weeks trigger my anxiety. But so did the idea of going back into an office environment. What to do?

Suddenly I’d applied to observe lessons in a school (next week!), with a view to teaching English (obvious really), and now I’m on a crazy train of potentially starting Teacher Training next September. How did that happen? No idea.

Which is all good, except I’m still typing, invigilating, have an author event this Saturday, and a karate exam the following weekend. And Christmas, which any mum with school kids knows, is a full-time job for the next four weeks of carols, fetes and fun stuff (for them!)

Cue panic city.

So I had this crazy idea of increasing the dose of my marvellous anti-anxiety meds. Except I forgot the first week of change is hell. I feel sick, woozy, jittery and basically a little surreal. Idiot. I’m working on Friday and right now it’s a challenge to get out of bed at 5am to let the pup out. But I recently read this quote from the artist O’Keeffe (one of the class names at my kids’ school which are all named after artists) and I try to keep it in mind.

I’ve been absolutely terrified every moment of my life – and I’ve never let it keep me from doing a single thing I wanted to do.

Bravery is my watchword right now. I entered the karate championships two weeks ago and not only did I win two trophies, I discovered I rather enjoy sparring, even if it means getting bopped in the face. For someone who can’t stand physical contact much of the time that’s a little bizarre, or maybe that’s what gives me the edge to defend myself. Who knew!

And the author event gives me the heebees but what is there to lose? And I might sell a few books. So teacher training could just be the next big adventure. As long as I get through the psychedelic weirdness of upping the meds. I’ll let you know!