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Achievements

This desk was intended for my final term’s work – an essay, an exam, and a dissertation.

The dissertation was the most important to me. It’s on a topic I’ve been exploring for four years, first summoned in a dark digs room in which I hid from a stinging, sulphuric world, during my Honours degree. I dragged colour into that room – crocheting a massive blanket that could sub for Joseph’s Amazing Technicolour Dreamcoat. I plastered the walls with images cut out of the one magazine a month I bought myself. I fought a good fight. Well, I fought. But I never quite managed it. As my best friend said when he visited for the first time, you could see it was my room but it was a bleached version of myself, gritting its teeth.

That topic has followed me through my contemplating dropping out due to depression, complex post-traumatic stress disorder, and anxiety; my decision not to; the classes I participated in when I sobbed during the breaks; the terror of that term’s final events; and the final push, when I finally wrote it up for the first time. It followed me through the heartbreak of the relationship that had held on by a tangled thread through two degrees finally imploded; through the seemingly inevitable hospitalisation that finally happened. And then it followed me through the slow push of my recovery. Finally, it followed me to Oxford, where it was officially meant to be the big submission of my MSc and the beginning of a possible PhD.

But more than a beginning, it was meant to be an end – a final farewell to the dark time that birthed it. That was the achievement that mattered to me. And it came to matter more and more in the context of the last months, wherein some part of me had begun to accept that I was dying. Somehow, as my mental health was again mangled by a university, pretty much from the day I arrived, and I got more and more lost in a maze of panic attacks, depressive swings, fear and fatigue, my gaze got more and more narrow. As my clinical psychologist brought up the topic of hospitalisation again for when I returned home for fieldwork, and the term “neurological function” set my exhausted hamster of a heart running again, the dissertation became my last hurrah. An achievement worth my life.

What hogwash.

No achievement is worth your life. Duh. But when you’re caught on a sinking submarine of symptoms no-one can explain, and a brain desperately trying to birth answers…

Now, I type my blog at this desk. My cat uses it as a highway. There are always flowers.

flowers on my desk

I take pleasure in squeezing every second of pleasure from them that I can before they’re thrown out the window into the communal garden to make fertiliser. Once every few days, they get fresh water and have their stalks snipped. All dying or browning leaves or blooms are removed.

Today’s achievement is that I walked to the shop for toilet paper and orange juice alone, and I didn’t have an attack.

Tomorrow’s achievement is that I am starting to trust that I’ll be alive to see it.

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Peanut Butter

It’s like trying to explain peanut butter.

My ex-boyfriend was allergic to peanuts, so he’d never eaten the stuff. I used to try and wrap my brain around that concept. It’s not that I couldn’t comprehend someone not liking it. It was not having ever known the taste of it that I simply couldn’t grasp. It’s such a distinct experience, that particular peculiar mix of sweet and savoury tastes gumming your mouth together. It simply cannot be communicated via description. It’s sensory.

It can be like that, trying to relay what it is like to live with mental illness.

In the past 9 months, I have spoken to a clinical psychologist, Cognitive Behavioural therapists, General Practitioners, receptionists, administrators, a psychiatrist, lecturers, friends, a boyfriend, supervisors, strangers on a train, a priest, a judge, family, a mental health nurse, three members of the college welfare team, academic registrars, a disability advisor, and cats, about my mental health crisis. I’ll give you three guesses who help the most (it’s not the ones who specialise in the stuff).

When I was still at university {before I had to suspend my studies because no-one seemed entirely sure whether my body was just running out of steam (the technical jargon for this is adrenal fatigue) after eight months of daily panic attacks or I had some un-diagnosed lurking menace of a brain disease} I kept a diagram of all the people I had to speak to about my health. Those patronising classes on how to use flowcharts to help with your studies came in useful after all. Right up until I left, there was a woman being Cced in all the university’s mails about my health (with information it took me years to tell my best friends) who had never contacted me directly. Apparently she was my department’s disability liaison, for all my needs as a student with a registered disability. Fascinating.

So, first, communicating what it is like is brutally hard, even in the best of circumstances – even when it’s your beloved partner, and you’re lying under the covers in a sanctuary of safety and support, even then – it’s excruciating. So, imagine what it is like to talk to a bunch of bloody strangers in a foreign country who just ask you if you’re suicidal so often that if you weren’t at the beginning of the conversation…and then tell you to call 999 if you are.

Second, the administration of talking to that many people, of not being helped, of trying to find another person who maybe can, and going over it all again is toxically tiring. Today and yesterday, I’ve barely been able to keep my eyes open. I had to take a break to lie down halfway through hanging the washing. I’m gummed up with the peanut butter of it all, the thick, sticky, smothering task of being the Personal Assistant to my Disease.

At the beginning of this year, the precise beginning, I sat with a group of people at a party in London. Everyone was saying a New Year’s Resolution. It got to me, I said, “Don’t die.” Everyone chuckled, in the delirium of champagne and fancy dress, I suppose it sounded funny to them. I wasn’t trying to be funny. I wasn’t even being pessimistic. I was just being honest.

How do you communicate that?

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Cocktails

I remember the first time I put a psychotropic drug into my body. I was 18. They’d wanted to prescribe them for my depression for years. I refused. At least that way, I knew that whatever I was experiencing, it was me. I don’t really know how to communicate this now, with the bevy of drugs they have had me on since. You’d think it wouldn’t make a difference. Surely, as long as you+medication feels better, then there is some of you that feels better?

The terrible truth is that they cannot guarantee if/when you will feel better. When the medication is right, it’s miraculous. I was in hospital when they got mine right the first time, and there was a significant improvement in 24 hours. I quite literally sat up straighter.

But, I was 23 when that happened. There were five years in between – two degrees, one relationship, approximately 1825 days of my life, when they hadn’t got it right. That’s five years of the depression + side effects + attempts to go off + withdrawal + changing medication + new side effects + getting off for a while + depression.

I hate that word, ‘side effects.’ It connotes things that happen on the side, like a sauce that is optional. It’s not optional, nor on the side, if it affects you everyday – if it shapes your first experiences of sex, traveling alone, university, adult life.

This year, the physical side effects of the drug they put me on to help manage my panic disorder included overwhelming fatigue, shaking, weakness, sweating, hot flushes, and disassociation (all of which are also symptoms of a panic disorder). The life effects of those side effects included hearing that I might have some kind of neurological problem, countless doctors appointments, having to prepare my friends and family for how to care for me, almost being killed in a car accident, being rescued by a stranger, being lifted and dressed by my partner (try that for trust exercises), suspending my Masters degree, and as finally burst out of me mid-sob the other night, a deep, and rooted, fear that I was about to die.

You see, knowing matters. Knowing it was the pills that caused the most extreme and unknown of my physical symptoms, which we now do, helps. It helps me to know that I’m not going mad; my body is not simply coming apart; I am not dying.

I’m off them now. But, the life effects don’t stop with the side effects. It is almost impossible to disentangle what was the panic disorder and what was the medication I was given to manage it. Now, all else must be paused as I seek treatment for the panic disorder – and rest and recovery for the shitstorm that came with it’s medical mis-management.

Finding the right medication in June 2016 saved my life. Being on the wrong ones before that deformed it. Being put on the wrong ones this year almost destroyed it.

So, I go back and watch my 18 year old self on holiday with her best friend, feverishly reading The Secret Madgdalene for the first time, eating apple crumble with double cream Greek yoghurt, and kneading the thought of the unopened box of pills in the folds of her bag.

I watch her sit on the cold cement bench, watching the ducks square off in the winter sun. I watch her go inside the thatch-roof cottage, open the box and place one tablet on her tongue.

And suddenly, I am relieved I cannot go back to tell her to do anything differently. I just don’t know what I’d tell her.

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Spring Cleaning

This picture looks like a Google clipart for pills. I know that because when I was setting up the blog I was playing with the idea of a mannequin with a string of pills instead of pearls. Yet, it isn’t. This conveniently coloured display of blue and white is what we flushed down the loo today. We’re spring cleaning, and that included clearing out the medicine box – and these are only the hardcore drugs that it isn’t safe to just put in the bin.

I don’t know if this is what they had in mind with the term “flushing your drugs”, but it’s what I found myself doing on a Saturday afternoon to ensure no-one ended up on intense psychiatric drugs they shouldn’t be taking. This caution is experience-based. A few weeks ago, a doctor took me off one drug – telling me I shouldn’t have been put on it/kept on it for so long in the first place. She didn’t take me off it slowly, a process known as weaning (a word only regularly used in the context of babies). She told me to stop taking it, and the door label said she was a doctor, so I did (I have discovered based on experience that Googling medication you’ve been put on does not help with an anxiety disorder).

The escalation of my symptoms was so severe that I found myself having a depressive episode for the first time in two years. This culminated in sobbing on a park bench (This appears elegant in Adele music videos. In reality, not so much.) I’d fled the house because suicide ideation (doctors/counselors/therapist/nurses/welfare officers are always impressed when you use this terminology) had come to give me a flat-warming present.

At an emergency appointment the next day, the other doctor (his name was also on his door) informed me that the drug I’d been on is considered highly addictive – so what I was experiencing was a major drug withdrawal, for which people were usually hospitalized. Um…okay? That’s not terrifying, and I haven’t lost all faith in her.

People spend a lot of time talking about the importance of asking for help. And, again, they are utterly and completely right. But the other part of the equation is as important, if not more so. You know what else has to happen? People have to actually give it. I’ve been telling people with more qualifications than me that I’m in trouble for eight months, since I moved here in October 2018. And, I’m still waiting for one of them to actually you know…help.

Anyway, despite Friday’s three phone consultations with medical professionals this hasn’t happened. But, in stylistic news, I’ve found a way to feel slightly less despairing about having to take pills multiple times a day, never knowing if they are a good idea or just making the problem worse (as it turns out the ‘tranquilizers’ I’ve been on for four months have been doing).

The idea of a pill box is an old-fashioned one. But when you have to take as many pills as I do, it can genuinely help.

The first of these was picked up on my first Christmas trip to London. It’s small, dainty and pretty. This is just what I need. Each time I open it, I feel like the eight year old on my mom’s friend’s bed, unpacking all her incredible jewelry, treating each piece as a horse that might startle, and glorying in the faded velvet and luscious satin of her proper old jewelry boxes. They were precisely that to me – jewels. I remember the extravagantly glamorous woman who sold it to me for half the price because it was Christmas, and I think of all the women it may have known. And it hurts just a little less that I have to put the tight red capsule on my tongue within 30 minutes of waking.

The second I bought from the artist who made it (he’s Kenyan in case you couldn’t tell from which country is the key) at a market in a tiny, terrible town. His smile was genuine and I lent into it with relief, escaping the horror of my surroundings. I’ve loved that box, and its traveled with me, a piece of home, an emblem of my continent. And each time I feel the slide of the stone and it reveals its secrets, I am 16, alone at a market, and my heart is easing as the lock smooths open.

As the detective in the TV show Death in Paradise said, “There’s little enough happiness in the world. When it comes your way, you got to grab it with both hands.”

Note: I’m listening to Adele while writing this blog post because I like thematic consistency.

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Sanctuary

When is the worst of it?

There’s a day that I remember. I don’t know why. It wasn’t that much worse than the day before or after it. But, it shines in my memory.

I caught a bus, and then a train, and then another train, and halfway through the second train station, it happened. This is the difference between an anxiety disorder and a panic disorder (or so I’ve been informed.) In an anxiety disorder, there’s usually a trigger for a panic attack. And so, slowly but surely, you figure out what your triggers are and work around or even with them. Post-hospitalisation, I started to view my anxiety as a stern friend – she pulls that knowing face that I associate with my best friend when I am putting myself in a situation that isn’t good for me, and then when I ignore her, she presses that small dingy white emergency button so that I can’t ignore her any more.

This was different. This was ‘I’m happily walking to class’ one second, and then ‘That car is about to hit you, flee,’ the next. Nothing changed between the first and the second, except by the end of the second I’m chemically on the landing strip, ready for take-off.

It happened. I got onto the second train, somehow, after hanging up on my partner mid-attack. By the time I called him back, I was dripping with sweat and wandering through a mall that wasn’t on my route home, refusing (loudly) to go straight to the flat, and telling him not to leave work to come and find me. People use the phrase “The world is spinning,” but I’ve never really found it helpful. It’s more like each unique fragment of the sensory world is politely and jovially waiting its turn to stab into the forehead area where yogis draw the third eye (does it count as your third when you can’t see out of the two you already had?) I insisted I’d find a place to wait for him to finish work, and went to a pub I remembered as having a friendly atmosphere. The first problem in this plan (apart from…crossing roads mid-panic attack) was that it was late on a Friday. So, the pub was heaving with men. Once I got past this and found my way, disheveled and damp, to a quiet corner…I sank into the couch, stripped off my layers, and realised…I’d come to a pub.

At pubs, you have to order at the counter. Which is fine, except when you can’t stand up. Having maxed out on adrenalin, my legs went on vacation. It was a long time before I could stand. By then, the pulsing masculinity of a London pub late Friday combined with my desperate humiliation at forgetting how to walk had me headed straight out the door.

And then, finally, I stumbled into Carluccios {https://www.carluccios.com/}, in takkies and jeans, draped in the wet clothes I had shed, dragging luggage (literally and figuratively), struggling to see. And was welcomed.

Could I sit down? Of course!

Where was the bathroom? Downstairs, but why didn’t I use the staff one so I didn’t have to leave my bags too long…let’s put them there where she could watch them for me…could she get me anything in the meantime?

I experienced the kindness as oxygen.

And so, I returned. Friday after Friday, after the trauma of public transport mid-panic attack, as I waited for my partner to finish work.

It’s a business, a restaurant, the hospitality industry. It’s no big deal.

Yes. But that day, for me, it was.

It’s safe…it’s sanctuary.

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Decor of the Interior World

Today, it’s the fatigue that is overwhelming.

I can’t quite sleep nor can I keep my eyes open, unlike our new cat whose eyes are like the reverse of CDs (remember those?) in her hiding place beneath the couch.

I managed a brisk walk around the park this morning, and have been horizontal since. I could have done it in jeans and a T-shirt, like my companion did. But clothing has always been inextricable from context, for me. Since it is the most exercise of which I have been capable in a while, I needed to wear exercise clothes to feel like it ‘counted’ as progress.

I couldn’t wear the block heel boots that normally give me confidence to the emergency doctor’s appointment last week. I tried to put them on, but some days my balance is off and I need to move carefully down the eight peeling white steps that lead up to our building.

Since opportunities to dress up are significantly reduced by a panic disorder, I’ve renewed an old tradition – using fashion as decor.

Source: South African textile company African Baroque https://africanbaroque.co.za/

This necklace was a farewell gift from an aunt last time I left home. With so few outings possible, it has a place of honour on the bathroom wall, where it brings colour, variety, and a sense of home to a space that otherwise has limited options for decor, as we’re renting.

Source: British brand New Look https://www.newlook.com/uk (via a local charity shop)

These beautiful red court shoes are made of a lovely red suede. Wearing them immediately reminds me of the shoes and accessories section of the sell-out Victoria&Albert featured exhibition Dior: Designer of Dreams. Their sublime silhouette makes me feel as though I should be twirling in a piece from his New Look collection, with its luxurious layers of skirt. Unfortunately, walking in them is a different matter entirely as they are a size too small! But the sight of them brings me such joy; so, they are paying their way as bookends. Having one of a pair on each end of the shelf makes for a tidy and elegant sight.

This is only two examples of an old practice of mine based on the belief that the best pieces of style can evoke joy beyond when they are, or can be, worn. They reach for you, offering memory, imaginings, and emotion.

So, why should they be boxed away?

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Colour in your Cheeks

The image of mental illness I have in my head (unintentional mental illness pun) is an old postcard, internalised somewhere along the way. A white woman in a sepia-tinted black and white photograph with hair she definitely didn’t do herself; an Erdem-style dress (frills, ruffles, florals, excess fabric); the tips of pinching black boots showing. You almost can’t imagine her having skin. She’s…wan.

Perhaps this is why I clawed my way back to life in a psychiatric ward via colour. I started colouring in and it spilled out of me. The nurses started coming in to see the new one that I stuck up on the wall each day. When I was discharged, they came with me, and went up on my wall at home. And were soon joined by new ones, until there was more colour than wall.  

With a colouring of a Thomas Kinkade, known as the Painter of Light, the wall in my tenth home since I was 18 has just begun.

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Rosacea

These five immaculate pink roses are finally surviving on the bathroom windowsill.  I’ve placed them in an olive jar, which still has its labels. I like the contrast – something so pristine as a pale pink rose that hasn’t shed a single petal, displayed in something practically clunky with a list of ingredients on the side.

Want to settle into a new place? Be forced to remain there 23 hours a day, seven days a week for weeks in a row. It’s not the scenario in which I imagined ‘moving in together’ would happen when I saw it on television.

I like the sound of the birds that reaches me from the communal garden; the slightly off angle of the front left leg of the desk we found in a charity shop; the only light in our bedroom being fairy lights; the throw I made in hospital draped over the stiff blue couch too little for lounging.

I don’t like that I still wait for my partner to get home so he can take the rubbish out, for fear of leaving the flat alone; I don’t have the strength to do the dishes in one standing; I can’t lift the laundry rack or open the window properly; Geoffrey the Fly is thrilled to test the patience of the Patient.

These five roses are alive today.

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Illness of Iron

cropped-img_1677-6.jpgTraveling as a South African, there are a lot of assumptions made about animals. My cat thinks he is a lion but he’s the wrong size and he lands on his tummy when he is dropped. I try not to mention my uncle who is an animal wrangler and as such has lions, cheetahs, giraffes, and hyenas on his farm. People don’t need encouragement to do the whole exotify Africa thing – they do it all on their own.

London has to be the most exotic city I’ve ever lived in. Accra has…goats, which is common. And even if it wasn’t, no-one who has ever met a goat thinks it’s “foreign, tropical, unnaturalized, alien” or any of the other weird, xenophobia-embedded, coded words the dictionary provides in its bid to define “exotic.”

Foxes on the other hand…every time I see the fox who beds down in our garden, I hold my breath. It slinks over our neighbour’s wall, and under our picnic table to disappear into the crisp green foliage. I am eight, reading Roald Dahl for the first time, and clutching at my laugh as he describes George’s grandmother as having a “mouth like a dog’s bottom.”

Speaking of bottoms, there’s a bumble bee that flies through the window that is too heavy for me to open properly. It’s so dense you wouldn’t imagine it could get off the ground.

Then, there’s Geoffrey the fly…

You see, I can’t move my legs. The phrasing of that sentence is interesting – like I am somehow separate from my legs. They’re unruly. It’s like giving orders to a cat. The Duke of Cambridge, as part of the well-intended and important attempt to tackle mental health stigma, earlier this year described how “If you have a broken leg, then you go and see the doctor. You wouldn’t turn around and say, ‘I can manage this’ with an open fracture.” It’s a common enough comparison, and he’s right, of course. But I worry that this separation creates an illusion about how physical mental health can be. As I told the woman during the fourth of my five medical appointments in two weeks today, I don’t have any long-standing physical health conditions. In that sense, I’m a relatively healthy young woman – although heavier and weaker than I used to be thanks to not being able to walk around the block alone for months. But today, I can’t move my legs.

In today’s appointment, I was asked if I am managing every-day tasks like washing (a friend’s tip is that you can get away with Febreze air freshener for two weeks at a time.) Washing requires standing, which I can do, but only most of the time. Exercise is encouraged too. I started swimming. It helped with the anxiety by regulating my breathing. But then it happened in the water. And I almost sank.

When I’m asked to list my symptoms for what must be the 459 672nd time, I don’t talk about feelings, (not that I’m short on those.) It goes like this: fatigue, shaking, sweating, hot flushes, immobility, difficulty speaking. Oh, that’s my favourite. Speech was my last line of defence – even when you have to go down on your knees in an elevator full of strangers, or crawl up the stairs, you can still be wry or sly, make ‘em laugh. As Paolo Nutini sings in Iron Sky, “We are proud individuals living on the city but the flames couldn’t go much higher…”

Now that is slipping. So, here I am, with Geoffrey, Big-Assed Bumblebee, and the Fox for companions. Nutini’s next line is, “We find gods and religions to paint us with salvation.” But the local church is locked, and requires walking. So, here I am, turning to the page again, instead.