Mental health blog

I think this blog may be standing in for a while as a way for me to monitor my own mental state. Which when I am stressed / overloaded / depressed, and thus not fully assimilating more than a fraction of my experiences, is difficult to do. So apologies to my readers if this is not your cup of tea.

Because today I feel like shit.

I mean seriously. The pressure at work is unrelenting. The social demands – probably laughably benign from a non-autistic perspective – are confusing and they are constant. Usually my job is well suited to quiet focus and isolation, but now is an exception. The merciless expectation, drilled into me through every interaction to perform, perform, PERFORM; at the same time as delivering all of a million things in none of the time. Keeping track of the million things when I can’t parse words and everything has to be checked six times. My colour-coded “to do” list is not up to this. I am exhausted by lunchtime; every lunchtime. I cried through two separate meetings today.

I can still just about cope outside of work. One long (alcoholic) drink and at least a quarter jar of Nutella down and I feel better. I mean, more relaxed. The thing is, I won’t get anything done tonight. There is ironing that can technically wait, but shouldn’t. There is music practice, which can’t wait, so won’t happen. There is an ever-increasing list of actually urgent things shuffling forward to Saturday, when I should be resting, or maybe putting some out-of-work time into workplace things. Things that at some point, on a day like today, I will have to do.

Some day, in a week, or two weeks from now, I will break down. I will curl up on my sofa and sob. I will have crossed the line from rationing non-essentials like ironing and music practice, into food, or sleep, or rest. There will be no time to take care of myself as I struggle to perform the basics, ever more slowly, in the waking hours available.

This year, I am afraid of that time. I fear it because of how it feels, for me. But I fear it also because I can’t hide. This year I can’t draw in and focus on my work, avoiding the pressure of interactions with such high expectations. This year I am expected to smile and learn; to be positive; to have energy throughout. And already, I can’t.

I am afraid of the exposure. I am afraid of the shame. I am afraid of negative consequences from not being able to hide. I am afraid of taking time off work or failing at other commitments. I am afraid of forgetting what it feels like to be OK. Again.

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Autumn is here

This time of year is usually difficult for me. Often SAD comes on gradually. Sometimes it’s sudden. Usually it’s both.

I noticed I was starting to get tired at the beginning of the month. I’d known it was coming; it didn’t seem so bad. Maybe the weather changed; maybe it was just more people around at work, back from their summer holidays, more admin and communications draining my resources just that tiny little bit more than usual. It’s always justifiable, always reasonable, in the beginning. Whatever it was, quite suddenly, the demands of every day left me flagging, unexpected struggling to navigate the familiar walk back home. So I rearranged my schedule, putting the chores back to the weekends, then concentrated on enjoying my evenings and got on with life as usual.

Now I’m sitting here and feeling tired, so dead tired, but not wanting to sleep. Now I’m planning the days ahead in the knowledge of not be able to function except on weekends, and maybe not even then. And suddenly nothing difficult can be done with less than two weeks notice. Life contracts to form a new, smaller normal.

It’s all of the little things, and the big. Things are stressful at work and I’m struggling to access support. I have a running injury; so the let-out for all of my everyday frustrations, that quiet time in the middle of the day to relax and recharge, is gone. I feel slow and tired, all the time. It’s hard to concentrate, to organise my tasks and focus on what I should do. I’m not sad. But I don’t want to do anything. I don’t want anything. Gradually, suddenly, autumn has crept up on me again.

Every year comes round again, every year the same; but different. Last year was different. This year is different. Last year I coped by reducing external pressures and focusing on things that made me happy. This year the pressure is unrelenting. But this year I have support from mental health services that I’ve never had before. This year I have an employment support coordinator to help me navigate my professional nightmares. This year I have a counsellor who knows I have a history, who won’t just drop me the instant I’m sub-clinical by GAD-7 or PHQ-9. This year, however isolated I might feel, crying at my desk at work, I’m not alone.

Maybe this time, things will be different.

The calm between the storms

Mental health recovery is a funny thing. Sometimes I even wonder if it’s even a thing at all. Research on clinical depression shows it’s something that tends to recur, and anxiety will always be there. So maybe “recovery” isn’t the right word.

But regardless of terminology, there have definitely been some beautiful periods of my life where I have been neither anxious to a disordered level nor depressed. Whilst the descent tends to be slow, recovery can begin with startling suddenness. One day, out of the blue, I feel OK.

I’m very bad at recognising when I’m depressed. Unfortunately, CBT taught me to get better at that. I say “unfortunately”, because there is a level of self-protection in denial. If I don’t know I’m depressed, I don’t have to fight it. I can just get on with stuff. Ever more slowly, and with ever less interest, but it avoids the pain of actually acknowledging I’m sick – something that at that point, of course, just feels like one more thing on the endless list of things that I can’t deal with. The worst bit isn’t even knowing things are bad. It’s when you realise you genuinely can’t remember what it felt like to be OK.

When I’m starting to get better, it’s a positive spiral. Contrary to what your shrink may tell you, if you are autistic, chances are behavioural activation has f**k all to do with this. When my senses are already more sensitive to overload than usual, setting goals on doing more things and “connecting” with my peers tends not to improve either my mood or my energy levels! But when something finally does go right, it works like they tell you behavioural activation is supposed to.

There’s a storyline to getting better. It starts with being bored. Not that horrible empty feeling you have in depression, where you don’t want to do anything but you don’t want to do nothing either: just solid, healthy boredom. I’ll have got used to being depressed by that point, so my schedule will be skeletal, covering only the bare minimum of activity required to keep myself physically intact. But one sunny Saturday morning, I’ll get out of bed and think: I have nothing to do today. Well that sucks. Let’s do a thing!

I’ve done this enough times now to become passable at navigating the next stage, which involves doing ALL THE THINGS! Literally. I look at the schedule and realise how empty my life has become, at the same time as I’m remembering all the fun things I’ve missed. I’ll suddenly realise I want to start running more; and driving to choir; and visiting that exhibition that’s been on my list forever; and I can totally fit in a couple of social activities this week too … except that I can’t, of course, even though my brain is telling me how much it’s totally up for this! Having done this a couple of times, crashed and burned, I know now to start off a bit more slowly and build up to a full schedule.

But the next bit, regardless of caution or care, is where things can go off track. That first glorious rush of unicorns and rainbows, where you’re utterly ecstatic at the sheer unbelievable amount of energy available when you don’t have to spend it all dragging your arse out of bed in the morning, is winding down. You’ve fully realised just how bad a place you were in before, but you’ve got a handle on things now, and you’re feeling whole a lot better. You’ve settled into a routine where you’re happy and motivated – maybe even thinking about a challenge. And then something bad happens.

Words are inadequate to describe the horror of this moment. All of those bad feelings and negative thoughts that you’ve just shaken off come flooding back with the intensity of a pre-dawn nightmare – only you can’t wake up. You’ll never wake up. You’re terrified and not ready for this and it’s hopeless, because after just a taste of the life you almost didn’t remember you’ve been shoved right back to the hell you were in before. (You haven’t, of course, but right now it feels just the same.) You thought you’d finally escaped; but no. You thought you could do something fun, even something challenging – but as you’ve already found to your cost, when you don’t even know if you can rely on being able to feed yourself next week it’s just not practical to plan for anything more. The memory of the last episode is still fresh in your mind, and you’re exhausted just thinking about it. You don’t know if you can find the strength to dig yourself out again.

From there, it can go either way.

I am writing about this now because two weeks ago, this is where I was. Two weeks ago I drafted this piece, and two weeks ago I couldn’t post it, because I honestly didn’t know what was going to happen. I spent most of last year lurching from crisis to crisis, constantly on the brink of exhaustion, bouncing along a mental health gradient that was definitely positive but never quite got me to feeling fully human again. So I didn’t want to post something optimistic about recovery just before I sank.

Today I am OK. I took a break last week to get some perspective; now I’m clear-headed and angry and ready to fight. This isn’t about me being weak or useless (neither is depression, but it tells me both are true). The problem that burst on me with the force of a nightmare is not in my mind; and by its very nature, a “real” problem has a “real” solution. Soon I will be scared – scared of pushing too hard, scared of gas-lighting tactics, scared of being misunderstood – and I’ll convince myself that really my wellbeing isn’t that important after all. But not today.

Recovery isn’t about everything going well for me. It’s about having the strength and the self-belief I need to fight. And it lives nowhere more than in that calm before the storm, when I’ve got the firmest hold on what I’m fighting for.

When there is no help

TW: suicidal thoughts; self harm.

A few years ago I got to reading and liking the work at Beauty Redefined. These twins have done some impressive work looking into attitudes around body image and body shame. I love the way their articles focus in on particular behaviours, and then they don’t stop there – they talk to me in my language about how to fight the prejudices and preconceptions of the world around me. I like that thinking!

For obvious reasons, Beauty Redefined focus a lot of their work on women. But the article they shared on Facebook today was about a man. Wentworth Miller. In this article he talks about the cost to him of mass-media body shaming whilst fighting an episode of depression which, not for the first time, he only “survived”.

So I admit I never watched Prison Break and have never heard of this guy before today. Remembering names, particularly actors’ names, isn’t really my thing. But this article really got to me. I’ve not had the chance – or the courage – to read much about suicide (except for the gooey happy clappy stuff about “don’t suffer in silence, we can help”, provided courtesy of our glorious NHS *). I have, of course, heard a sprinkling of those silly misconceptions perpetuated by people who have no concept of that moment when it begins: the still, deathly quiet contemplation of the need to end your own life. So they asked him: “was it a cry for help?”.

And he said: “No. You only cry for help if you believe there’s help to cry for.”

That is it. That is it exactly there. If I were in that place now (which, thank heaven, I’m not), it would have been a punch in the gut. I would have cried all night, and the next day, and probably the next night as well. I would have looked at the knives in the kitchen drawer and wondered whether that sort of pain would help me stay alive in the face of this fundamental truth. Because that one person knows this thing, and he said it out loud, and that makes it real.

Being suicidal isn’t an emotional thing – at least it wasn’t for me. It’s cold and dark and clear, like staring into still water on a silent night; and it’s utterly rational. It’s not desperation – it’s grief. You know, more clearly than you’ve ever known before, that this is the only option left to you. You feel that calm, quiet loss – such a waste of life. You’re grieving for yourself, before you die.

I am a strong person. I am driven and resourceful, and God help me nothing will stop me if there’s any other option worth trying. But sometimes there isn’t. Sometimes it’s the end of the day. You’ve talked to your manager and their manager about expectations. You’ve talked to HR about accommodations. You’re running and sleeping and eating healthily, when you can choke down the food. You’re exhausted and you’re scared for no reason, of nothing and everything, tomorrow and forever: you can’t make it stop. You’ve seen your GP and asked for advice, and she’s given you pills. You have talked to everyone you can; you’ve begged; you’ve told them you’re out of options, that you don’t know what else to do.

But there is no more help out there. There’s no counselling or therapy available to you – at best there’s an 18 month waiting list. Signing yourself off work is a thing that you cannot afford. You’re in pain and frightened. You’ve cried yourself to sleep for days on end. You cannot talk to friends or colleagues, or even tolerate the presence of people; work is a place of irrational terror. You know the pills will break your body, but not taking them will break your mind.

The GP is good. She asked you: have you been feeling depressed? She asked: are you feeling suicidal? She looked back: have you been suicidal before? She made you promise: you will tell us if it gets that bad again? So you promised, although you knew it was a lie.

Because there is no help. And you have no more energy to cry.

 

* Please note: I have absolutely nothing against the NHS. I have no political agenda and am not interested in doctor, nurse or GP-bashing. It’s just that the mental health services available to people like me, in the area where I live, are utterly and incomprehensibly shite.

Please also be assured: I’m not currently suicidal – although as you’ve probably guessed, I’ve been there recently. But if you were going to ask, thanks for caring.

(Un)medicated

Ele is currently having a mental health wobbly. Somewhere at the centre of this wobbly has been acknowledging and accepting that she can’t get through what she’s currently going through without medication.

I really struggle with attitudes to medication for mental health problems – including my own. The first time I told anyone I was on medication (last time, not this time) the reaction I got was of pure shock. I’ve encountered people who view medication as giving up; a sign of weakness; failure; lack of discipline or determination; and a shameful thing. Many others are determined to see medication as a crutch: a temporary support that mustn’t be used for too long, just until you can get back on your feet. I’ve been cautioned against the dangers of “becoming dependent”. Of all the people I know, only the few who have actually felt the benefits of medication in their own lives (and, thankfully, my GP) will view this choice in anything other than a negative way.

For the hardened shamers, there are many bloggers and artists who have confidently and eloquently explained the error of this viewpoint. One of my personal favourites is this comic, by Robot Hugs. If the skeptics don’t look at this and at least reconsider, they’re not worth my time.

The crutch argument, though, is something I find personally much more difficult. This is the one I agonise over. I suppose what it boils down to is the nature of the mental health problem. Just as with physical illness and injury, some things the body will repair in its own time, and some it won’t. You might be on crutches for a while with a broken ankle, before it heals and you learn to walk again. But if it’s a broken spine, you’ll be in a wheelchair for the rest of your life.

Regardless of the nature of my issues, the concept of medication as only a temporary support in itself is damaging to me. The problem is that if I see medication as a crutch, I am driven always to think forward to the time when I will be “mended” enough to set it aside. As soon as I reach that comfortable place of clearing my head of anxiety, or of thoughts that I don’t deserve to live, I’m immediately afraid and ashamed of relying on this medication that I now “don’t need”. Obviously, if I’m not actually suicidal, I can come straight off the antidepressants – right?

But what if I haven’t stopped needing that crutch? Just because I feel better when I’m taking medication, doesn’t automatically mean I’ll keep feeling better once I’m off it. Hopping along on crutches for that broken ankle, you might be absolutely pain-free, but you’ll know straight away if you drop them and try to put weight on it! I don’t know how much of this is me pushing myself too hard, or being too aggressively independent, but when a support is labelled as “temporary”, the anxiety of losing the crutch combined with the pressure to try and drag myself up without it is almost too much to bear.

Why is dependence on medication for mental illness seen as such a bad thing? We don’t shame diabetics for their insulin dependence. Is it because it’s something we can’t measure? There’s always the temptation to demand proof: proof that someone is really ill, that they really need those pills they take every day. It never seems to be considered why on earth we would take this stuff if we didn’t really need it! Medication is not an easy option. The paucity of knowledge around how the brain actually works makes medication for mental health issues less a precise science and more a matter of throwing different drugs at it until one of them does more good than harm. The side effects frankly suck. Why would anyone do this to themselves unless it were the best option left to them?

I’ve tried self-help and I’ve tried CBT. I’ve read all the popular wisdom on staying physically and mentally healthy. I kept a mood diary for a while and tried to identify triggers. Then I found out I was autistic and read an awful lot more.

But now I’m here. The local mental health services don’t want to deal with me because I’m on the spectrum. I’ve got as far as I can with CBT, and learning more about autism and all the things that are “wrong” about me (and how they could have been “fixed” if I’d been “treated” in childhood) is only adding to this hopeless fear. For me, right now, I know with complete certainty that medication is the right choice. I know I am absolutely right to stay on it for as long as I need, and to use that time to build up all the confidence and resilience I can. I just wish that knowing were the same as believing.

Depression and overload: what does self care look like today?

Overload is one of the easier autism-related concepts to explain to a non-autistic person. Basically, it’s what happens when you’re just too tired to cope. Strangely enough, the vast majority of people are familiar with this concept!

The difference with autism is the reason for the overload. Often because of sensory processing difficulties, such as hypersensitivity to sound, bright colours or smell, the wrong environment can put an autistic person in a perpetual state of overload and exhaustion.

My understanding of my own sensory sensitivities and triggers is still in its infancy. With the recognition of my autistic identity came the framework for realising that some things I find difficult might not actually be my being fussy or demanding, but because I actually experience the world in a different way. Even with that knowledge, though, deciphering my sensory environment and the aspects that can send me home practically incapable of changing my clothes, let alone cooking dinner for myself after work, is an ongoing process.

At some point I’ll write a bit more about overload, recovery and how I manage those risks in the workplace; but that’s not where I’m heading with this post. This post is about choosing the right self care at the right time, and how that’s not always as easy as it looks.

As well as sensory overload, I’ve also struggled throughout my life with depression. Although I didn’t seek help until early adulthood, looking back, I was an awfully depressed child! I spent some time at university not being depressed, but my life has really been arranged since junior school in bouts of relative mental “wellness” punctuating a background of depression, rather than the other way around.

Now the problem is that the symptoms of depression and overload, on the face of it, look identical. But they’re different.

Consider…

You have to stop. Stop now and curl up somewhere quiet. Your brain just wants to cry. It’s hard to think, even to move. So you move slowly: to protect yourself, to conserve your strength. You can’t cope with anything more.

You cancel social activities. You stop going out. You restrict exercise to the routes you know, because you just can’t cope with the unexpected right now. It’s almost too much effort just to go out the door. You don’t enjoy the things you love. You just need to stop. Stop now.

And at this point I ask myself: which is it? Depression or overload? Is there too much, or too little? Is there just too much of the wrong thing?

What does self care look like today? Is it a quiet night in with the lights on low, with a book and a blanket and a hot drink? Is it a choir rehearsal: immersion in music until you can feel the sound in your bones; keeping up with instructions; singing under bright lights? Or is it an evening run in the fresh air? Can I risk being up late, or do I need that sleep more than usual? Am I moving too slowly to keep to a schedule? Do I need to protect my senses tonight, or stimulate them?

What are the costs of choosing badly? What’s on at work tomorrow – what could go wrong if I’m having a bad day? Who am I meeting with? Can I afford to risk it? Or maybe there’s something I’ve been looking forward to on the weekend. Is it really worth jeopardising that?

What did self care look like last night; last week; the week before? How many choir rehearsals have I now missed? Are there real things in the medium term, whether necessary or just desirable, that will be jeopardised by my not doing something tonight? Does it matter whether I’m broken tomorrow if the alternative is unpaid bills, or not seeing a good friend for a holiday this year?

I’ll know if I chose wrong. Overloaded me can’t safely drive: she can’t process the visual signals quickly enough. Depressed me can, and probably should – she just doesn’t want to go out. Overloaded me will suffer in a choir rehearsal. Depressed me will suffer if left alone with her thoughts. All the me’s can enjoy a good book, but depressed me will be restless afterwards, and overloaded me might not even be able to focus on the page. If not allowed to recover, overloaded me will be exhausted at work the next morning. If left to fester, depressed me will struggle to get out of bed. But none of these signals come before the event.

Right now I’m overloaded. Last night I wrote a list of things I couldn’t currently do, when I’d last been able to do them, and when I anticipated being able to do them again. I looked at the list and realised I had bills piling up because I’d not been able to pull myself together to read the meters. I realised that the next time I expected to be able to make a financial decision involving more than a grocery shop wouldn’t be for another week or three. Not making that decision has implications, as does making the wrong one. So today I know that self care looks like clearing my schedule and asking nothing of myself but to fix up those bills, and maybe by the end of the day my head will be clear enough to think about finances. Sometimes it’s that easy. Sometimes it’s not.

It’s an interesting dilemma, when you’re not in the middle of it. I wonder: what would you do?