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.

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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.

Pesky Pets and Puzzling Programming

September didn’t get much better. I don’t know if it was exhaustion or a change in meds supplier but I was (am) fragile as a poppy. Any attempt to process more than one thing and I crash like a crappy computer.

So far October is okay. I did four hours of karate training this weekend and, while my body is broken and I can’t walk, my soul feels replenished.

I reached a nadir last week and decided a proper career shift is essential to my sanity. I put out a query for career paths where people skills are not a key aspect, and programming was the answer. I did go for a programming job as a new graduate and got 87% on the paper. Unfortunately the pass rate was 90%. Apparently I needed to slow down and read the questions better. Funnily enough I say the same thing to my son every time he gets stuck on his maths.

So it isn’t completely crazy for this ditsy arts student slash author to try and learn something as methodical as programming. But the brain is soooooo slow at 42 (even if it is the answer to life, the universe and everything!) I’m doing an online course from Harvard and have already nodded off during a lecture.

Mind you, the pesky pets have a lot to do with my exhaustion. Puppy is growing, and can escape from her pen and scramble past the stair block. She came into our bedroom six times last night, and when I finally locked her into her crate, she cried non-stop. Don’t be fooled by her cuteness, she’s a clever little minx.

And even my therapigs are being pickles. I keep trying to combine them into a herd but I have one that’s a bit of a bully. In my advice emails from the lovely people at Wood Green, they said that some gps are just like that and “it’s great that she has a companion already.” Ha! She’s basically me: impossible to live with and lucky she has a life partner who will put up with her. What it does mean is they stay in separate cages, so two lots of mucking out and laundry. Perhaps I need to stick to the guinea pig Mum gave me for my birthday.

Writing is still happening, in between all the chaos and mayhem. I gave Esmerelda Smudge an overhaul, using the awesome Save The Cat book, and renamed it Dani and the Djinni. [As an aside, I’m quite excited to see there’s going to be a Save the Cat book for novelists, although the screen play version has revolutionised my writing.]

I’ve submitted Dani and the Djinni for the Mslexia Children’s Novel Award and, if that goes nowhere, it will be the next in line to be illustrated. I’m doing a book signing at my local library next month so I need to keep plodding on with the writer bit of writermummy.

In the meantime, I’m surviving on coffee and beautiful sunrises. The only benefit of a 5am start.

The Fragility of an Even Keel

As you may have read in my last post, I was accidentally bitten by a dog at the weekend. Seemed like a pretty trivial if irritating thing at the time. But I thought I’d share how, five days later, I’m fighting off thoughts of not wanting to wake up tomorrow, and how fragile even the most level-looking keel can be when you battle mental health issues.

The bite was small but painful and, being on my thumb, I needed it to heal well, so went to the docs. Who prescribed a wide-range antibiotic, because dog bite apparently. The antibiotics (I think) caused cramps and a dodgy tum. I say I think, because my daughter’s been off school for two days with the same thing. It might have been the child at the docs with the sick bowl, or the pale lad slumped on the floor. Who knows? I just know that my daughter is never ill, and mine tends to be viral rather than gastric.

Regardless of the cause, the dodgy tum (or the antibiotics) has screwed up my SSRIs. I can tell because I want to break things and keep shouting and crying. Which has put the dog and kids on edge, so it’s been pacing and begging and ‘Mummy mummy mummy’ round the clock. They’ve even found me in my hiding place: the dog is outside tiptapping relentlessly under the window

There are a whole heap of other things thrown in the mix, least of which is the damn internet not working (kids can’t do homework, I can’t upload book files, hub can’t play Fortnite) but they’re every day annoyances.

Still, all in all, I’m going on holiday next week and instead of being excited I’m hiding in the spare room thinking of all those things you’re meant to think of, to stave off the ‘I can’t take this anymore’ thoughts. You know; how everyone needs you and loves you, and it’s a permanent solution to a temporary problem.

It doesn’t help.

For a start, it’s being ‘over needed’ that tends to make me desperate in the first place. I feel pressured to be the perfect wife and mother and the guilt of failure can be unbearable. Secondly, depression isn’t actually a temporary problem, it’s a lifetime condition. I never understood it when people said that. I guess if your end-it-all thoughts are because of a broken relationship or other ‘event’ it could be considered temporary, but not depression. It’s pretty bloody perennial.

So, anyway, I’m not going to do anything desperate. My tablets are working enough that I will hide and know that, if tomorrow isn’t better, the day after might be. I love my family and know that they need me, however much that feels like a prison sentence at times. I know that even if this post upsets them (assuming I post it at all) they’ll understand and forgive me. I know I have much to be grateful for and that kids grow up and leave home eventually (and apparently I’ll miss them). I know that, in the grand scheme of things, I’m probably not a failure for not cooking proper meals or giving my kids and husband all my attention, or for shouting at the dog.

Some are not able to find that perspective, I’m one of the lucky ones. It can be the smallest thing that triggers a cascade. And it isn’t selfish or attention seeking or dumb. It’s an illness that can take hold like sepsis and attack the strongest people like a cancer.

It’s morning now. I slept. The world is still a fog but I plod through, waiting for my medication to wrap me up again in my safety net. I wasn’t going to post this (no internet! Ha!) but if it helps one person breathe and hang on until the morning, or one person understand why a loved one couldn’t, then that’s enough.

And I hope one day to learn that I am enough.

To Paula, With Thanks

PaulaBack in November 2016 I was working for a friend of a friend, typing up audio files, and she asked if I would help one of her dream writers with a final edit of their autobiography. My first response was to say no: I didn’t feel qualified to edit someone else’s work, especially when I pay someone to do a final edit on my own novels. In fact, I recommended that the author speak to my editor, and assumed that would be the end of it.

It wasn’t.

The author, Paula, wanted me to look at her book regardless, and our mutual friend agreed. I gave a low quote, reflective of my lack of experience, and took it on. To this day it was one of the best decisions I have ever made. I got to read an inspirational autobiography – My Life in Colour: From Brighton to Bali and Back [Free on Kindle I see] – and meet the extraordinary individual who wrote and lived it. I also got to feel that I had contributed to the final shaping of a wonderful book, as well as helping to put together the manuscript ready for self-publishing: that at least I have plenty of experience at.

Fast forward a few months, and I got to finally meet Paula at her book launch in Waterstones in Brighton. It was a lovely event and Paula was even more amazing in person. Larger than life and even more colourful than her book.

Paula taught me to have more belief in my own writing. When I first had contact with her, she said of her book, “I am at that nervous stage and would like to hide it and me from the world.” Despite self-publishing all my novels, I’ve never really escaped from that feeling. I apologise for my writing, because I feel it hasn’t been validated by the awarding of a publishing contract. And with my children’s books, I always felt I couldn’t promote them because they weren’t illustrated.

Paula inspired me to get Moon Pony illustrated: in fact she gave me the means to do so, through the work I did for her and other subsequent editing work. Without her support and financial help it wouldn’t have happened. But it did, and I am so proud of the result.

Tomorrow I stand up in front of three different primary school classes to talk about my writing, read from Moon Pony, and hand out some signed copies. I have actually sold copies of my children’s book to children. It feels epic.

I write about Paula in the past tense because tragically she died last autumn, following a car accident on what turned out to be my birthday. I have never mourned someone so much who I had only met once, but it was like a firework burning bright and leaving a pitch darkness behind.

When I was asked to do the author talks, my first response was no. I don’t do people, especially children, and I hate talking in public. Never mind the thought of reading something I have written out loud for people to judge. Terrifying. It’s why I don’t belong to a writers’ group. But then I remembered Paula, and I said yes. Because she was brave and, despite her fears, she launched her book into the world with gusto and self-belief.

Books are meant to be read, heard, shared, loved (and hated) and they can’t do that lurking at the end of a URL.

So, wish me luck. And Paula, thank you. You are missed.

Blog Block: Breaking the Silence

4eb37dd13f42674acbd12e3530d6f979-the-face-beautifulCan you hear them? All the blog posts I have written in my head over the past few months. Mostly at 2am, when my terrible sleep pattern has me wide awake, brain working, body dead. Unfortunately, by the time I’m up at 5.30am, the body is awake and the mind is numb.

They’ve been great posts though, I wish you could have read them. About my new obsession with the soundtrack from the Hamilton Musical and, as an offshoot, my undying respect and love for Lin-Manuel Miranda (look them both up: awesome!)

Posts about parenting anxious children, and wondering how much to interfere. Following a lot of Go Zen posts on Facebook (very useful: look them up!) and realising that the issue is very much more mine than theirs.

The parallels between running and writing: that was one post (in my head) I was particularly proud of. Sure to go viral (a girl can dream.)

Knitting. Christmas. Being self-employed. Writing competitions. Rejections.

Problem is, I know I’ve written about all the topics before, and I know how much it annoys me when the kids tell me a tale I’ve heard a million times. But maybe that’s life. It is circular after all. The same issues and achievements rock around for all of us, again and again. But sometimes reading the right advice or anecdote at the right time is the key to survival. Meaning there’s a point to the same posts rewritten ad finitum.

Anyway, I’m not one for New Year’s resolutions, but one thing listening to Hamilton daily does for you is give you a sense of your own lack of purpose and motivation. So I am trying for a little more motivation. My husband bought me a t-shirt with one of the key lines from the musical: ‘Young, Scrappy and Hungry’. I’m only one of those things, and only in the sense of hungry for chocolate, but perhaps it isn’t too late for me.

I read this morning about how to make children resilient to failure, to life: about the fact that much of it is how we interpret the things around us, drawing either the positives or the negatives from a given situation. I’m very much a glass-is-practically-empty-and-it-is-all-my-fault kinda gal. Lately it’s been all about having no income. (I got refused for a credit card for the first time in my life. That sucked.)

But I realised, in the car driving home from my coffee in Waitrose this morning, where I had sat doing counted cross-stitch for a gift for my daughter, that I’m the luckiest person on earth. I get to do all the creative things I wanted to do when I was stuck twelve hours a day in a job I hated. So I’d better make the most of it and stop stressing about getting a minimum-wage job and how unfair it is when I have a bunch of qualifications. It’s my life, I need to live it and quit whingeing.

I’ll leave you with some words from Hamilton, that I’m going to try and live by. And if I find myself on the sofa watching Murdoch Mysteries re-runs, I’m going to forgive myself and move on. Because, you know, life.

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Mini Adventure

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Today I am on a mini adventure.

I have left the family in the capable hands of my husband and travelled to Brighton. The lovely Paula Harward has invited me to the launch of her memoir, My Life in Colour, which I was lucky enough to help edit.

So exciting.

I have to admit, though, that the most exciting/scary part is being away from home alone for the first time in eight years.

It’s fascinating how nervous I was about travelling down by train. Nine years ago I was wandering around Kuala Lumpur on my own (having tagged along on hubbie’s business trip) and yet I left John Lewis in a frazzle last week because two strangers were having a row.

When did I grow so timid?

Actually, travelling has never been without stress, mostly in the planning. I hate to be late, and it terrifies me that I’ll miss my train or get on the wrong one (and I’ve done both).

It is weird being away from home too. I feel sort of guilty and disconnected. I had to go buy headphones and a book, having forgotten both, and picked up a Holly Webb that I haven’t read. (It matches the B&B bedding, so lovely!) In it, a girl talks of being connected to her absent mother by a golden thread. Being away feels like that. Except it’s a white smartphone rather than a golden thread.

IMG_7145These days we’re never far from home. My daughter just texted me a love heart she drew and I could video call if I wanted. I don’t know if it’s good or bad. As a parent it’s comforting – I don’t know how my parents coped when I travelled around New Zealand, with only the occasional text message or sporadic email from a grotty internet cafe to let them know where I was and if I was okay.

IMG_7146At the same time there is a sense of never being free, of never getting lost (I used Google Maps to find the B&B), of always being tethered. Of being reachable, connected. Being able to receive messages from my son that are full of poop emojis!

IMG_7084I took the dog on a different walk last week, and it was exciting to meander without timetable or anyone knowing where I was. It shows you don’t actually have to travel to feel free, or always feel free when you travel.

(As an aside, I was actually glad of my phone. Last time I did that walk I got hopelessly lost, had no internet on my phone, called husband for help which he was unable to provide, and ended up walking through an off-road Landrover course and across two sheep fields, eventually having to heave our 28kg dog over a 5ft barbed wire fence. Got lost again this time and Google Maps rescued me in five mins! Haha)

Whether I’m free or not, connected or not, scared or content, it’s definitely an experience. I can hear seagulls outside my window and the sea is a five minute walk from here. In a couple of hours I get to meet the two people who set me on my path as an editor and see a paper copy of the first book I edited that wasn’t mine.

I’d call that an adventure.