Channeling Energy (or how to sneak up on your brain)

One of the things I’m learning as a neurodivergent is how to follow the flow of energy. When it’s right to rest and when it’s actually better to move, do something, anything, and how to sneak up on my brain if it’s resistant.

I was raised to see rest as idleness, self-care as decadence. It’s taken a really long time to even begin to deprogram myself from that. I also realise, with hindsight, that I pushed those values onto my husband. He used to understand the need to sit and just be, was an expert at it, but I saw it as laziness. Sorry, husband 😔

In my defence, it wasn’t just upbringing. Our whole Western culture celebrates productivity. We are told to “fill the unforgiving minute | With sixty seconds’ worth of distance run”.    

From infancy, our worth is defined by our achievements. You spoke! You walked! You can count to ten, you passed your exams. What a clever girl, I’m so proud of you. Haven’t you worked hard.

The message is never that it’s okay to just be. That the world is somehow better with you in it, regardless of whether you win awards or die trying.

When I was working, Monday morning chat filled me with dread. “What did you get up to this weekend?” caused my truthful autistic brain to stumble. Somehow, “I slept and did laundry” wasn’t the answer they were after 😂

But weekends were for rest and recovery, ready for another week of work. Harvesting energy, so I could pour it into my job. Which is why it was fortunate that I loved it (most of the time). I was excited by Mondays, revved and ready to tackle the challenges and test my brain to see what it could do.

Without that, under-employed as I currently am, (I won’t say unemployed, because there is still a house to run, a family to feed and clothe), managing my energy is so much harder.

Firstly, there isn’t much challenge in laundry, so it isn’t all that exciting. Feeding a house of ARFID is challenging, but in a tax-return sort of way that’s pretty fucking miserable, I won’t lie. My newly-freed-from-work husband is doing All. The. Things. Decorating, landscaping, renovating. Wonderful stuff, but it’s not where my energy is currently at.

So I read and apply for jobs and try not to panic.

And I learn about energy.

I’ve learned that my energy flows best in an empty house. Which is a bit of a bugger at the moment. I’m back to hanging out in coffee shops for solitude and cake. My waist is expanding at an alarming rate 😉

I’ve learned that I can sneak up on energy, like a skittish horse, if I pretend to be resting and then suddenly leap up, put running clothes on, and get stuck into a task before my brain’s caught up. 

I have remembered the power of a playlist. Metallica blaring through headphones got me through periods of post-procrastination panic-productivity at university, enabling me to write a term’s worth of essays in a sleepless week. I don’t recommend it, but if you must, then diet coke and …And Justice for All are what you need. Just don’t forget the headphones.

I am also learning about creative energy. It’s like trying to catch a Roborovski hamster. Or like the end of Crystal Maze, grabbing the gold tokens flying around. The clever contestants waited and gathered them as they landed rather than snatching at air.

Take this post. It’s weeks overdue, and the third I’ve started in my head. But today I waited until the ideas started to gather, then grabbed at them as they pooled in my mind. I started at 5a.m. The Notes file on my phone is full of 5a.m. thoughts. 😂 I had a slight side-quest, trying to find an image of a Crystal Maze contestant grabbing at tokens. I couldn’t, but am learning to limit these perfection-searches where I can. That way danger lies. (The same reason I can’t have Instagram or TikTok on my phone.)

My brain, when under-utilised, is like the Crystal Dome all the darn time. Ideas flap around me, all shiny, but I can’t get hold of them. Or I grab randomly and get a hodgepodge that I can’t sift through. Since leaving work to look after my daughter I’ve knitted, cross-stitched, crocheted, made a book trailer video, redesigned a book cover, drawn illustrations, updated my website, and come up with a dozen crazy ideas for new projects.

New cover design

But having to job-hunt is depleting my energy, because it’s all the things I hate. It’s trying to believe in myself and sell myself, it’s trying to say what recruiters want to hear, in cover letters and interviews. It’s searching, and reading through the job-speak trying to understand what is actually expected in a role.

And it’s waiting.

Waiting is ADHD Kryptonite. A 4 o’clock appointment will kill a day.
Add to that a daughter who is still in recovery and a hyper-productive husband doing ten projects at once, and managing my own energy is getting really hard.

So I read. And rest. And sneak up on my brain, holding a chocolate bar and a coffee to tempt it to submit.

And I wait.

My Creative Life

So, one of the things I haven’t wanted to talk about recently is my husband and his team being made redundant. It didn’t seem right to talk about it when it was so emotive and raw. Nine years is a long time to work somewhere to then find out you aren’t wanted. Aren’t needed (although we’ll choose to disagree on that). The problem with talking about it is that it’s the same place I worked, and hope to return to. And his team were friends, and they were all treated badly.

All the feels.

But in some ways, my husband leaving that job is a good thing. I’ve said for a long time that he needed a change. A break. A chance to rest and rethink. To do All. The. Things. It isn’t fair that I got to heal from burnout if he doesn’t as well.

It also means that I might be able to return to work sooner. Maybe to the same place if they’ll have me. If I’ll have them. But it feels like a betrayal to consider going back, even though it’s a big company and, stressful and spoon-depleting as it was, I appreciated being in a neurodivergent-friendly team.

But it makes me feel selfish to leave husband and daughter and hustle back to what I want to do, so that’s a not-to-talk-about-for-now.

Part of my stay-employable strategy, though, while I support my daughter, has been to improve my adobe skills and build a portfolio page. I’m doing a video-editing course with the OU, and playing with animation in Photoshop and Premiere. Not the best software for it, but it’s what I know.

What I didn’t expect was how healing it would be to review the things I’ve done, the lives I’ve lived and places I’ve been. To remember I’m more than a mum. I heartily recommend it, if you’re in a rut or need a confidence boost. In the end it was more than practice or a portfolio piece. It was an affirmation. With an irritatingly catchy bit of music 😂

So, here it is: my creative life:

Blogging: The Art of Listening

I’m reposting this from ten (!) years ago as I stumbled across it today and realised that a) it’s still relevant and b) I still need to work on listening and not interrupting/fixing 😂

A potentially life-changing book

A potentially life-changing book

I started reading a (for me) life-changing book, yesterday, which I wish I’d read years ago, called The Five Love Languages by Gary Chapman. I haven’t finished reading it, so I won’t write too much about it here, but the basic premise is that we all speak one of five love languages and for us to maintain healthy relationships (be it parenting or marriage) we have to understand the other person’s language and learn to speak it.

The languages are Words of Affirmation, Quality Time, Receiving Gifts, Acts of Service and Physical Touch. (If you want to learn more before I finish reading the book, visit www.fivelovelanguages.com).

Rather like Valerie Alexander’s Happiness as a Second Language, it teaches hope, as it reassures that we can all learn these unknown languages, whatever our upbringing. I grew up in a house where happiness wasn’t really spoken and, equally, love wasn’t an open dialogue either. I’m slowly learning to speak these foreign tongues, and having phrasebooks is essential.

The part of the book that sparked today’s blog post came during the discussion of the love language Quality Time. The author speaks of each language having different dialects. For example, Words of Affirmation can include ‘verbal compliments’ or ‘encouraging words’ or ‘kind words’. Quality Time is about giving full attention to another person but this can include ‘quality conversation’ or ‘quality activities’.

On p.67 Chapman explains how hard it is for people to listen, particularly when a loved one wants to rant about a problem at work or similar. He says, “[w]e are trained to analyze problems and create solutions. We forget that marriage is a relationship, not a project to be completed or a problem to solve.”

This was particularly relevant for me yesterday as hubbie came home from work frustrated after having had to work on his personal development plan all day. Admitting there were things he wasn’t good as was hard. Instead of listening sympathetically, “with a view to understanding the other person’s thoughts, feelings, and desires,” I tried to fix the issue. And when he wouldn’t accept my brilliant advice I got angry. Crazy.

Chapman has some great (well worn) advice on listening attentively, but it was point five (p68) that grabbed me.

“Refuse to Interrupt. Recent research has indicated that the average individual listens for only seventeen seconds before interrupting and interjecting his own ideas.”

Oh my goodness, yes, guilty as charged. Interrupting is one of my greatest flaws and I hate myself every time I realise I’ve done it. Even when I’m interrupting to agree, to share an anecdote to say ‘me too!’ or to offer words of sympathy, I am still interrupting. I’m even worse with the children, because for the past five years I’ve had to interpret what they’re trying to say. Now, when they’re capable of explaining it themselves, I still do it and it drives them bonkers, especially the youngest one.

My head fills with words and it’s like I can’t actually carry on listening because my need to speak fills my mind and my words are too precious to waste. How arrogant. When the children interrupt me and I stop them, they often cry and say “I’ve forgotten what I wanted to say now”. My response is usually, “if it was important it will come back to you” but I know from experience that isn’t true. For me, words not said or written down are lost forever (especially the blog posts or character scenes I write in my head at 2am and don’t capture because I don’t want to wake everyone up by getting out of bed.)

I’ve been known to lose track of whole conversations with other people because of the nagging sensation that I was about to say something brilliant. Maybe it’s time to let that go and trust that the words, if important enough, will come back eventually.

Thinking about all this at 5am this morning I realised that is why people love blogging so much and why I love reading posts that other people write. You cannot interrupt. I can write all the way to the end of a thought, or read all the way through to the end of someone else’s explanation, discussion or revelation, without interruption. In a world where we are all so eager to speak, blogging teaches us to listen and allows us to be heard. I hit the like button (where there is one, and I hate it when there isn’t) when I get all the way to the end of a blog post, as if to say “I have listened”.

I also realised that, by reading all the way to the end of a post without interrupting, I often don’t have anything to say. There is nothing to fix, no need for shared anecdotes. The writer has often answered their own question or revealed that actually their situation isn’t exactly like that time when I … at all.

So, my mission is to learn to listen, to learn to let my words go so that I can hear the words of others. How can I write stories if I won’t ever listen to them?

And I’m also going to try really really hard not to beat myself up about past failures. My favourite quote so far in Chapman’s book is “I am amazed how many individuals mess up every new day with yesterday. They insist on bringing into today the failures of yesterday and in so doing, they pollute a potentially wonderful day.” (p47) The sun is shining outside, the children are happy and the husband is smiling. Who would want to pollute this day?

Happy listening.

All. The. Things.

Homeschooling ADHD style

Turns out, when an AuADHD adult tries to homeschool an AuADHD child, what you get is chaos. Creative, messy, fun, imaginative, spoon-depleting, stress-inducing, brain-exhausting chaos.

When the kids were little, they moved from activity to activity at lightning speed. 

With the first child, I had a 25-labeled-box wall unit, and all activities went away. The farm, train, blocks, playdoh, paints, dolls, craft. I spent more time setting up and packing away than we did playing. But when you have a messy brain, you need a calm environment. Tricky, when you also have zero executive functioning skills.

Once there were two of them, only 19 months apart, I settled for containing it in one part of the house and ignoring it.

Thankfully, we escaped the house every day. To the Farm, the zoo, the supermarket, the park. Anywhere, to entertain without mess. I used to call Farm trips ‘Farm Calm’. A clean(ish), pushchair-friendly outside space, with endless variety, in a predictable, safe environment. With food and changing facilities and easy parking. One year we visited over 60 times. Value for money on an annual pass that paid for itself after four trips! We knew all staff and animals by name.

ADHD Parenting

These days, our day trips are to Aldi and Primark, and sadly they don’t do passes. I might buy shares.

At home, chaos reigns once more. And now there are two brains that get disregulated by mess, but need to do All. The. Things.

My current projects include decorating, crochet, sewing, fitness, video editing, writing, reading, lesson planning and feeding everyone. 

The daughter has rediscovered craft (which heals my heart) and lego and jigsaws and origami and painting and the glue gun. At Aldi yesterday, we bought stickers and colouring books and puzzle kits. Because, tiring as it is to keep up, I want to feed the embers of the girl I once knew, coming back to life.

It’s hard. 

There’s little down time, particularly as my creative side is also seeking fulfilment, now there are no LinkedIn campaigns or PowerPoint presentations to fuel it. I might even start another novel. If I can herd the excitable puppies racing round my brain all into one place. I wake at 5am to get some time alone to drink coffee and process in silence. She’s often up by 6am.

With it all, what I’ve realised most is that healing has to come before homeschooling. 

School lacks the creative stimulation for an ADHD brain. There’s little-to-no dopamine for a child who doesn’t want to dance or play an instrument. By GCSE, there’s no art or DT or cooking. If you can’t turn it into an exam, a career, it’s deemed worthless. But if you have no energy left at the end of a day to do those things, then what is left?

And she’s so worried about falling behind. I keep saying, behind where? Who set these goal posts? Even if she does return to full time school at Easter (and I doubt it), GCSEs are modular. She can catch up enough to pass five, and that’s all she needs to do. If that.

Education systems, teachers, the government, parents, they all love to convince kids that their whole futures depend on getting excellent GCSEs. 

It’s such rubbish. 

For a start, thanks to Bell Curve marking, a percentage will always do worse than they deserve. A child could give the exact same answers two years in a row and achieve different grades. The system is so flawed.

And who says GCSEs need be done now

She has her whole life to get qualifications, but if she destroys her passion for life, what’s the point?

Obviously it’s easier, cheaper, if she takes them next year. I’m still aiming for those five. I’ll still plan lessons each week, and weep at my inadequacy to even understand half the topics, never mind teach them. But if there’s more lego than lesson? If we spend two hours making origami hearts, or even two hours in Primark (sigh), then so be it. 

I have my daughter back. I’m getting myself back. I’m just not getting a lot of rest.

Pass the coffee. Black, no sugar, strong as you like. 😂

RSD: A really serious disability

https://cdn.pixabay.com/photo/2019/09/30/18/41/golan-heights-4516524

Part of healing from burnout for me has been having the space to realise how damaged my relationships with my family are, after the two years of neglect. Neglect, because I have been pouring all my energy into negotiating the even more complex relationships that a job brings for me.

My neurodivergence comes with massive empathy wrapped up in a complete inability to read people, and a physical discomfort when I get it wrong or hurt someone. What could possibly go wrong?

Let’s unpack that. 

care

I can’t just go to work and have colleagues. I care about them. Let them in. Treat them like family.

It’s not always a good thing, in an office. Lines get blurred. Piss me off, and I get upset, angry, mean. I will literally do anything to help the people that come under ‘work family’ but if I feel betrayed or let down, I hurt. And lash out. Or I drown in self doubt and believe I have to quit because I just can’t do it. I think my boss talked me out of resigning at least every couple of months.

It’s no wonder I have only managed about 10 years’ proper employment in the 25+ years since I left school.

Because, together with the feeling-everything that makes me overly-emotional comes the inability to read people. I mean I am really bad.

It can occasionally be useful. 

In the past, I haven’t noticed when blokes in the office have been trying to hit on me until they make a drunken move at an office party (and then I am shocked.) 

But it also means I can’t always read sarcasm. I can’t tell if someone is tired/busy/sad/distracted or actually mad at me. And my default belief is that they hate me (more on that below).

Since I realised I’m AuADHD I am more aware of it. I will ask for clarification, from the person or a neutral third. Even that is dangerous, though, as it comes close to gossiping. And you have to trust that the other person you’re speaking to isn’t also going to misconstrue, because of their own potential neurodivergence. 

It’s a minefield.

And for me – and apparently up to a third of people who are Autistic / ADHD – that minefield is armed.

Enter RSD.

RSD stands for Rejection Sensitivity Dysphoria. Like ADHD, the acronym hides the depth of the iceberg. ADHD doesn’t just mean ‘oooh squirrel’. And RSD doesn’t just mean you’re a bit sensitive to criticism, poor wee snowflake, build some resilience.

For me – and I can only talk for me – it means pain. Broken relationships. Hurting people I care about. Losing friends. And did I mention pain? Actual physical my-life-isn’t-worth-living pain.

If someone tells me I am wrong about something, or that I made a mistake, my flight-fight kicks into overdrive. My ears start ringing, my pulse quickens, adrenaline floods through me until I fizz. A knot of tension tightens in my stomach and I feel like I’m falling backwards into a dark place. It’s not dissimilar to a panic attack (or, if you haven’t ever had one, to being uncomfortably drunk.)

I might lash out, depending who has said it. And if I’m with people I love, there’s a strong chance they’re neurodivergent and also RSD, so the exact same process then happens to them. And I can see they’re hurt. So the RSD ramps to the next level, because not only am I wrong (a horrible thing) I am also evil for hurting them. I don’t deserve to exist. Depending on the severity of the feeling, I can get suicidal thoughts.

At that point, flight-fight expands to include freeze or fawn. So one of four things will happen now, all out of my control. 

  • Yell
  • Leave
  • Go mute
  • Apologise endlessly

None are conducive to healthy relationships, especially if the other person a) doesn’t know what’s happening and/or b) is experiencing the same thing.

Eventually the physical reaction will fade. That’s when the real pain starts. 

The racing, intrusive thoughts. The need to apologise, explain, beg for forgiveness. The overthinking. Replaying, trying to understand. Knowing I am overreacting but being unable to control it. 

And the echo can last decades. Waiting for my brain to retrieve it at my lowest moments. Stupid incidents from age 16 still make my ears ring and my pulse race at 2am. And still my brain will actively seek those memories out and replay them. Stupid brain.

It’s no wonder I don’t have many friends, or that I was reported more than once at work for upsetting someone in a meeting or email. 

Because the passion and energy that makes me good at my job comes from a need not to fail. That perfectionism I always put on my CV? Turns out it’s RSD driven. If I always deliver, on time, above expectation, no mistakes, you have no need to criticise me. The RSD beast lays dormant. Unless you tell me I am overdelivering and that’s why I’m in burnout. You’re trying to help, but it’s a criticism and so it triggers the fight-flight. (Sorry, boss!)

Knowing about RSD has helped. I have dropped off calls when I felt the adrenaline in overdrive. I’ve walked (stomped) round the building a few times to calm down. Sat in a toilet cubicle and sobbed.

But if everyone else around me has no idea, I just look hysterical, overly-emotional, unstable, or plain out of order. And that’s at work.

In a house where 3/4 of us have RSD, and getting it right matters so much more, but we all feel more. Well. Exhausting.

I recently read a great post on RSD on LinkedIn https://www.linkedin.com/posts/adhd-asc-dyslexia-family-resources-belgium_rsd-neurodivergent-rumination-activity-7132409562745204736-OMQV

It includes this checklist:

Do you often feel intense emotional reactions in response to perceived or actual criticism or rejection?

🔹 Can seemingly minor feedback trigger a mental tail spin or emotions and thought spirals?

🔹 Do you have trouble containing your emotions when you feel rejected and your responses may be disproportionate to the situation?

🔹 Do you experience #rumination and perseveration and are unable to let comments go?

🔹 Do you frequently engage in people-pleasing behaviors to avoid potential rejection or #criticism?

🔹 Do you feel highly sensitive about other peoples opinions of you?

🔹 Are you prone to high levels of self-doubt, low self-esteem, or negative self-talk?

🔹 Do you find it challenging to navigate social or professional situations due to the fear of judgement or rejection?

🔹 Do you at times feel constantly attacked and on edge?

🔹 Do you avoid starting projects, tasks or goals where there’s a chance of failure?

Kate Halpin

I tick every. single. one.

Imagine carrying that all the time with no one knowing? Imagine finding out there is a name for it and you’re not just a failure or a terrible human being?

There isn’t a cure. Only knowledge. Therapy. Being open.

We need to talk about RSD, especially at work. Look for the signs in others. Support them, come up with strategies or signals to help in a moment of crisis. Don’t judge. We’re not snowflakes, we have a mental condition.

And, most importantly, find a friend that tells you it’s the RSD talking when you’ve left all your work WhatsApp groups because you think everyone hates you.

And then have the bravery and humility to ask to be let back in 😊

Full Craft Ahead

It’s been nearly a month since I left work to care for my daughter, and I can finally feel the burnout fade. Like a cold you didn’t realise you had until you can actually breathe, I don’t think I understood just how depleted I was.

I was aware of the lack of spoons, the poor sleep, the zero energy. But I hadn’t appreciated just how much my job consumed me inside, like a smouldering fire. 

My daughter said the other day how happy she was that we were friends again, now that difficult colleagues weren’t stealing my energy. That hurt, I’ll be honest, because it’s true. I don’t have barriers, so negative people can and do bleed me dry. 

The other difference, now that I’m not problem-solving all day, is that there’s room for creativity at home. 

So many projects. 

All at once, because ADHD.

I’ve decorated the bathroom, painted Christmas cards, made lego, moved furniture, baked.

And now I’m restless, so very restless. Because projects need to have purpose (my worth is defined by productivity, payment and praise remember!) I can’t just create for the sake of it, there’s not enough dopamine in that. It needs to be for something or someone.

So, apologies friends if you have a birthday coming up, because you just know something painted, knitted or crocheted is coming your way. 

Sorry, not sorry. 😂

Lemony Wisdom

When life gives me lemons, I tend to glare at both the giver and the lemon, say gee fucking thanks, and throw the lemon as hard as I can against the nearest wall. Stew in my petulant rage for a bit. Slip into pity. Sleep. Cry.

Eventually I’ll get restless. I’ll walk and think, listening to sad songs on repeat, and imagine if life had only given me strawberries.

Then, when I’m tired of drowning in self pity, I will switch to warrior songs. Walk a bit further and a bit quicker, read inspiring memes and posts.

Eventually my brain will start picturing lemon recipes. It will come alive and embrace all things lemony. I will see the impulsive idiot I was, chucking away the lemon, and go buy ALL the lemons (way too many, because ADHD after all) and vow to become the best lemon chef ever.

Then I’ll get bored and wonder what you can do with oranges, but at least I’m not sulking any more.

Well, I’m not entirely convinced that works as an extended metaphor but hopefully you get the idea!

I’m currently at the ‘new recipe and regret’ stage. I regret leaving all my work WhatsApp groups just because my husband said work colleagues didn’t become friends. (I usually turn to him to interpret life, because my RSD makes me read people all wrong and I didn’t want to appear needy or a naïve idiot). With a clearer mind I would have remembered that ALL my friends were once colleagues. Even at school. How else do you meet people? But it takes time. Hopefully any that want to remain friends will look me up.

And my brain is coming up with all the things that I can do and sell to make myself feel worthwhile again, because sadly my self-worth is linked to productivity, payment and praise, and homeschooling aint gonna give any of those.

This is the time where I usually focus on all the wrong things. Set up a complete company persona, with business cards and webpage and flyers, spending more money than I’ll ever make back. Thankfully I’ve realised that’s because those things should have always been the point. I’m a creator at heart. And two years of being given the space to strengthen both my skills and confidence as a creator, rather than shoehorned into jobs I don’t enjoy (project management and data analysis) means I can get straight on with the work bit.

I still have confidence issues. I still don’t know how to sell myself. I still see my skills as dime-a-dozen. But that’s the imposter syndrome. And thankfully I’ve had a good coach who has taught me to believe in myself a little bit.

I’m still reining in the impulsivity and RSD. Still oscillating between wanting to take up permanent residence in the work coffee shop to see friendly faces and so scared of rejection I couldn’t even drive past yesterday. But it’s been less than a month. Patience.

Because I’m so good at that 😂

Guilt

I finally broke today. Again. There’s a lot of breaking at the moment, with a hormonal tween in the house and short days and a constant to-do list I’ll never get to the end of.

Mostly, though, what’s destroying me is guilt.

Guilt that I’m using plastic, guilt that I have enough to eat when so very many people don’t. Guilt that I get free healthcare, when people where my sister lives go bankrupt for having a baby. Guilt when I throw food away, guilt for not buying organic. Guilt for flying. Guilt for shopping in a supermarket and not buying local. Guilt for eating meat. Guilt for not making the kids eat vegetables. Guilt that the kids are always unhappy. Guilt that I have zero sex-drive. Guilt that the dogs haven’t been out because I can’t stand one more muddy bath. Guilt that the house is a shit-heap and I’m in bed playing Alphabetty.

Guilt that the kids don’t want anything for Christmas because they basically get whatever they want all the time. Guilt that I’m too tired to put them to bed and instead let them fall asleep watching YouTube. Guilt I don’t get outside more or take the kids to the park. Guilt that I haven’t put the lights up because I have zero Christmas spirit. Guilt that I’m sick of school and homework and yet dread them being home for the holidays. Guilt at the sheer waste of the gifts I’ve bought and the modern-day slaves in China that made it for peanuts and who live terrible lives. Guilt I didn’t buy the school photos, or get to the kids’ assembly. Guilt that I watch TV when I should be working and spend more than I earn.

Guilt that the planet is going to hell in a handcart and I’ve turned my heating up to 20C and loaded the tumble dryer. Guilt that I haven’t planted enough trees or joined Extinction Rebellion or been on a protest march. Guilt that I’m voting tactically in the next election because another day of the poverty caused by the current government makes my heart weep, but really I want to vote Green and save the world, not just the people in my country.

Mostly just guilt that I’m not doing enough, recycling enough, reusing enough, saving enough, being enough.

I’m working as a transcriber for a charity at the moment, Compassion in World Farming (CIWF), focusing very heavily on the climate crisis and the importance of eating less and better meat. It’s very rewarding work, but listening to days and days of audio about the climate crisis is not helping. Then I hang out on Facebook, the only place I have friends, and am bombarded with food banks and politics and say no to plastic. So I turn off the gadgets and stare at my house, full of needless crap I’m too exhausted to sell and too guilty to chuck, and the only thing left is sleep. Until the dogs wake me up, wanting a walk, and it starts all over again.

I’d love to end this diatribe with something cheerful. The CEO of CIWF always ends his interviews with, ‘What gives you hope?’

Right now? Not a lot.

 

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.