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.

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.

A Note on Suicide

[Apologies in advance if this hurts my friends and family but I need to say it.]

There is a lot of discussion about suicide at the moment for obvious reasons. How it’s selfish. How people suffering from depression need to remember they are loved. Much of the latter is heartfelt and well meant. But.

I’ve struggled with depression. Struggled with suicidal thoughts. And yes, before my medication, I often thought my family would be better off without me. But now, when it happens, my main, overwhelming, sometimes only thought, if it can be called thought, is I want the pain to end. That’s all.

Perhaps that is selfish. But unless you’ve lived with a battle in your brain most of your adult life, you can’t really judge.

If someone going through chemo just wants it all to be over, you wouldn’t judge. And for many at least there is an end in sight. My depression is mild and mostly controlled, but even I sometimes can’t imagine living with it for another forty or fifty years.

So don’t judge, not even in kindness. Don’t tell people with depression to ‘think of their loved ones and how much they are needed’ because that IS selfish. How can being needed, being required to get up every day and give to others, when you are struggling just to breathe, lessen your pain?

It must be horrible to be on the outside. I’ve spoken to people who have lost family members to depression (and that’s what it is, succumbing to an illness). It’s awful. Just as losing someone suddenly to a heart attack or a brain tumour or septicaemia is awful.

And there is always the ‘what if’? I have it. I was meant to be staying with my father the weekend he died, rushed to hospital with septicaemia. What if I had been there? Would we have reacted sooner? Saved him? And that’s as valid for suicide I guess. Medical intervention might have helped. But telling a person they are loved, needed, required, precious, selfish, or anything else AT THAT POINT, I believe would be no more effective than it would to tell someone to stop having a heart attack.

I would love to end this with an answer, a right way to help sufferers of depression. I don’t have one. Except actions speak louder than words. For me, the friends that showed up and put the kettle on, watched the kids for an hour, walked the dog, those were the ones who helped me survive PND. Don’t wait for the sufferer to ask for help. Often they can’t, the darkness won’t let them. Take a risk and just show up. And above all, don’t judge.

The ‘What For?’ Week

IMG_8039For about a week every month, although it might be a fortnight and feels like a year, I hit a point where hormones and brain chemistry clash and the anti-depressants don’t quite do their job.

I always know, thankfully, because I can count contraceptive pills left in the pack, and the point at which I start feeling super-low is always when there are just five left.

Who’d be a woman?

That first day I am aware of the descending gloom. I start taking vitamin B supplements and eating fish and brazil nuts in an effort to stave off the dark cloud of ‘what’s the point?’

But by day two or three it’s easy to forget it’s chemical. Life has no meaning, just getting up and moving is a struggle. The sun can be beating down, like it is today, and I’m just hot and bothered. My world narrows and I feel like I’m stuffed with clouds of misery. I genuinely can see no point in going on. I have a copy of Reasons to Stay Alive by Matt Haig but I haven’t read it, because the only time I remember I have it is when I’m so low reading it seems too much effort.

It sucks.

The What For? week is when I wish I had a job. I need to have to do something, because I have zero motivation. I can feed the kids and the guinea pigs and the husband and the dog. Dog gets walked too, albeit a fairly short ploddy amble. But that’s it. I spend the rest of the time asleep, because I have no drive to do anything else.

It sounds pathetic now I write it down. Such a white middle class privileged nonsense of depression. Who can’t find the motivation to mow the lawn or stack the dishwasher or hang out the laundry?

Even on a good week I struggle to get stuff done. I’m managing to get about an hour of writing planning and research done a day before I’ve (almost literally) lost the will to live.

I guess the problem with being a stay-at-home/self-employed/unemployed parent (whatever I am) is that everything is a choice. Sleep or paint the garden fences, sleep or vacuum the carpets, sleep or tidy the kitchen. Given that choice, how many would find it easier to choose sleep?

Anyway, it is only a week (or maybe a fortnight – it’s hard to tell when I start feeling better, it’s a bit like getting over a cold). And on the plus side I have started running again. When my legs can manage it I slot a run in between the bouts of sleep, so at least I feel like I did something vaguely productive, if only to my body.

And at least I have started planning a new novel. It’s taken a long long time to make that choice. It’s going slower than a hungover snail, and I don’t have much enthusiasm for writing any more, and I feel like everything I’ve ever written is complete pants, but in the back of my mind is still the hope I’ll pull something together that will make an agent not chuck it in the bin. One day.

In the meantime, I’m off to have some more vitamin B supplements and eat some salmon.

See you on the other side.

 

 

Giving Up Guilt For Lent

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Guilt-Free McD

So it’s pancake day already. Not entirely sure how that happened. I’ve just been for a swim and realised it’s only the third time this year and we’re two months through already.

The heady world of work appears to have been short-lived. Having had a completely unproductive week last week checking my email every ten minutes hoping for the next project, this week I’ve had to rediscover self-motivation. Funny how it can be lost in a couple of fortnights of someone else’s schedule.

It helps that I’m solo parenting this week, so having to be extra organised and switched on. Also the children ask me what I’ve done while they’re at school and I can’t keep shrugging and saying ‘slept’.

But it’s hard now I’ve tasted ‘earning money’. It’s hard not to feel guilty sitting down to watch Brave while knitting (albeit knitting things I hope one day to sell). It’s hard not to feel guilty taking the dog for only a short walk (because rain) or sitting in McD after my swim when I could have lunch for free at home.

But equally I’ve just resurfaced from the one week a month when my medication falters, as it comes up again hormones, and I have to fight the black thoughts. A week when tall buildings and deep rivers look inviting.

Today I feel joy in life again, after a week of, ‘Tell me, what’s the point?’ And, despite some horrific stories on my FB feed that have left me sick and sad, I’m aiming for content today.

My kids asked me about Lent as I made pancakes this morning. I explained about giving things up. They immediately suggested that wine and chocolate should be on my list. How well they know me. But I generally turn to those things to fill the hole in my soul when life seems stupid and pointless, or when I feel like a terrible wife, mother, writer, person. Which is often. Being unable to give them up makes me feel weak and pathetic and guilty that I’m not a better human being.

So this Lent I’m giving up guilt. Or I’m going to try anyway. It’s harder to judge whether you’ve slipped, compared with finding a glass of Pinot Grigio in your hand or scoffing down a big fat bar of dairy milk. But Lent’s about the effort right?

Cadge me a Curse Word

img_5623Recently my use of ‘Mummy Words’ (mostly ending in uck) has increased exponentially. I seem to be in a permanent grump, with the children, the dog, the weather, the traffic. And it expresses itself in short sharp swear words.

I did wonder if it’s because of some of the parenting blogs I follow on Facebook, that make swearing not just okay but a fundamental part of surviving parenthood. My favourite at the moment is Peter and Jane. If you haven’t come across it, and you have children living at home (or indeed a husband addicted to gadgets or a judgy dog) and you don’t mind more than a few words ending in *uck and *wat, then I highly recommend it. It’s easily the highlight of my day, although possibly it contributes to my rage by vicarious experience and empathy.

But, thinking about it more recently, I have realised what swearing is to me at the moment. It’s a packet of cigarettes.

I started smoking when I was fourteen and realised it was the only way to get a break when working in catering. I did a summer stint in a posh burger bar at Goodwood Races, and soon joined the girls having a crafty fag in the ladies toilets.

I rarely smoked excessively. Only when I absolutely hated my first proper job, shortly before having a breakdown and quitting everything, did I reach anything like a twenty-a-day habit. Then it was because two other girls I worked with were having a hard time too, and the ‘Fancy one?’ email used to come from one of us to the other two at least every half an hour.

I quit smoking when I went travelling in New Zealand and realised I couldn’t possibly afford it. Until I fell for the manager of a hostel I was staying in, and learned how to roll my own so I could cadge a light on the hostel steps – the only way I’ve ever known how to strike up a conversation with a stranger. It worked too, we lived together for a while.

Of course I quit smoking for good over eight years ago, when I discovered I was pregnant. I can honestly say I haven’t had a single one since. But I’d be lying if I didn’t say I’ve inhaled deeply a few times when passing someone with a roll-up or a Marlboro Light.

I am a hypocrite too, because I hate smoking now with the zeal of the quitter. I don’t even like people vaping near my children, and I’m amazed anyone still does it.

Except…

At times like this, when I’m super-stressed, and the world feels out of control, and people are asking things of me left and right, and the children are being vile, and the weather is awful, and I just want it All. To. Stop. I miss it.

I miss drawing deeply in anger on a burning stick, I miss the camaraderie of the cadged fag. I miss the control. The doing something. The reason to be still for five minutes to do nothing but breathe, even if it is breathing toxic life-ending chemicals.

I realise that my current addiction to coffee, my previous need for a glass of wine every night, my constant search for chocolate or cakes or something to feed the soul hole, are all part of the same thing. Trying to fill the void. Trying to find control in chaos.

And my latest addiction? (Apart from wine and coffee and chocolate and sleep). Swearing. Being able to use forbidden words. Relishing the bite of them. Giving myself permission to tell the family to FO to their face, however wrong it is, just to take back the wheel of my life and who I am as a person.

I love my family. I love my life. I remember being shocked when my doctor asked me in a judgemental way if I didn’t like my children and regretted having them, when I explained my antidepressant dose didn’t seem to be enough to survive the summer holidays. And I couldn’t put into words the dichotomy of love and hate, of giving everything for them but yearning for something for me, the finding of self in being a mother but the massive loss of the self I used to be. The loving being needed but the suffocating prison of it. The days when I can’t breathe because of the pressure of needing to be a person I’m intrinsically not inside: calm, patient, loving, tactile, organised, nurturing.

And on those days I go back to my life working in a bar, or travelling, or hanging out with educated women who say fuck, and I swear.

And I love it.

Can I cadge a swear word?

Life

img_5537The more the world goes crazy, the harder it is to write a blog post. I can’t gather myself enough to write anything meaningful about Trump or the NZ earthquake (tearing up roads I remember driving along fifteen years ago) or the gutter press (too many horrors to mention).

But equally a trivial post about my little personal battles with depression, children, writing, builders or being an HSP seems too frivolous to mention. (I hate the term HSP – Highly Sensitive Person. it makes me sound like Mrs Bennett: ‘Oh Kitty, stop coughing, have a thought for my poor nerves nerves.’ Although actually that pretty much sums me up at the moment.)

img_5523I went to Remembrance parade with the children yesterday, as they marched proudly, and stood silently and respectfully for hours, with their Beavers and Brownies packs. When the Brigadier addressed them all at the end, she said, ‘We were blessed with wonderful weather, although it’s always cold in November. Yet we parade whether it’s sunny, or raining, or pounding with hail. And it’s those times, when the weather is atrocious, that we come closest to understanding, albeit for a short time, what our soldiers endure for us.’ [I’m paraphrasing, obviously, but that was the gist.]

And sitting here now, finally in silence after my own personal few weeks of awfulness, on my own micro scale, it occurs to me that – trivial as my problems are – perhaps my context allows me to access the world’s suffering in a way I couldn’t if life were always sunny.

And when the sun does shine again (When my HSP stops being Hell is Sound and People and becomes Haven in Serenity and Personal space), I can imagine the world finding sunshine again too. When it feels, like now, that I’ll never not be teary and tired, angry and wired, I can know that healing comes to everything eventually. Trump isn’t president yet, and can be booted out in four years (unlike Brexit 😔) New Zealand will recover and thrive, as it has done so many times. The Millennials will come together and fix the world, if only we 80s kids will step out of the way and let them.

Hope will survive.

Until then, HSP can mean Hoping Sanity Prevails.