Brain malfunction

Sorry this talks openly about suicidal thoughts. If you don’t want to know don’t read on.

You know you’re not right when you walk past a beautiful place and think ‘I want to die here’. It just seeps into your conscious like damp in an old house. Then thats it, your head fills with mildew and once again your at the bottom of the hole. You claw your way slowly back towards the light. Knees grazed, nails ripped and dirt in you hair you stand up one more time.

Disclaimer: I’m OK today which is why I can write this so no one send any police or ambulances or whats apps. If its any consolation I had to cross a railway track about 5 metres from said beautiful spot. I stopped and took my earphones out, looked both ways before carefully picking my way across the track. This is what mental health feels like, in a heartbeat you take care crossing the railway but want to drown in the stream. I constantly surprise myself. I got asked what stopped me I couldn’t remember at the time but I remember now. I didn’t have any stones to weigh me down, no painkillers to make me sleep and I thought if my phone gets wet I won’t hear music as my last thing. Rational hey?

Today I am thankful for:

  1. Beth who cares so much
  2. Sally and her words and depth
  3. Cherries

Gratitude

resilience-700x300-1After an 8.05am MRI in Euston (45 minutes scan with dye), and full on anxiety attack, a dip into despair , driving 2 hours, and a full on counselling session I’m pooped.

Just enough left to resume gratitude.

Today I’m thankful for:

  1. The kindness of strangers
  2. Portishead
  3. My tiny shred of resilience

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Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

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Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

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In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

Today

The streets itch with discontent,

The map was off centre all day.

Childish tears threaten to break through the adult face.

The stone walls sweat yesterday’s rain,

I pound the concrete with sticky heat between the layers of my clothes.

The lipstick curdles and I wipe it raw with paper.

 

Fingers bandaged from no fight,

I’m neither citizen or tourist just broken knees.

Guts cramping propel us from cafe to cafe.

Food sticks in my throat as I push it round the plate.

My hands tremble as they try to raise the cup,

Thick black coffee drives my blistered feet.

 

Something is not right in the world, I’m not quite here or there.

It’s ugly criminals saunter like they own the roads.

We ask ‘why are people so cruel?’

Then the man stops to pick up some other’s rubbish.

A women tends the silk and velvet with more love than she knows.

The smile of the woman on the bus is the most beautiful thing I’ve ever seen.

 

The flash from no camera, the sky opens and moans.

White then orange makes my heart pound.

‘Don’t walk on the floor with bare feet’ she says.

It makes me want to feel it’s force, to feel alive,

to take off my socks and dance with life on the cold tiles.

I bleed with the sky and prepare to begin all over again.

Sick in the head

So lets have a little chat about mental health… well my mental health.

I actually don’t know where to start. From about 15 I experienced manic and depressive episodes. I’ve also had severe anxiety for a long long time. There have been a plethora of traumatic life events and my physical health is screwed. But the past few years have been relatively stable for me compared to the past. It’s had its ups and downs.

What I didn’t realise was my relationship, which once allowed me to be me, was becoming toxic. I was being suffocated and dimmed until I didn’t believe in my self any more. At home I was walking on eggshells incase I upset the one person that made me so happy and free. Or shouting because I was literally being ignored and he pretended I wasn’t speaking; I thought I was going crazy. In fact I was told repeatedly I was. I’d be ignored for sleeping on the wrong side of the bed, and cry on my own whilst he went out.

I was lured into staying at home whilst he went out because of my illness and I withdrew more and more. I tried to manipulate time together and control this not realising what I was doing and that something was deeply wrong. Anxiety at leaving the house was returning and I never spoke about my life and what I was doing. I’d listen to hours on end to his problems and help him solve them. Coaching the other person to be a better person and neglecting myself.

My physical health was going hand in hand with this silent gagging. I felt permanently guilty for the unexciting, fat, ugly monster I’d become. He always said it would be ok and I was still beautiful, these were lies.

Then there was the courting other people. Horrid toxic people. My intuition has always been good and alarm bells were ringing. But I was forced to let these people into my home and berated for questioning it. Then came the series of public humiliations in front of them. He was no longer fighting for me, or with me, but hurting me.

Alongside this my physical health with auto-immune was slipping and I couldn’t cope with any of it. I was going to appointments on my own now and feeling very frightened. He got angry when I needed an ambulance. In the end he had to be told it was odd that you’d rather be at work (or maybe fucking that girl) whilst I was having a lumbar puncture.

I was fighting a battle with the world to say I really am sick, please believe me, I’m not a fraud. I’d drive to work in so much pain I’d stop and vomit 3 or 4 times along the way. I let people down and got so muddled. It was like daily torture. I earned less and less and he made me feel like a burden. I desperately tried to keep earning and budgeting. Quite often I was covering up his big mistakes and lavish lifestyle. I agreed to put my name on a huge loan so he could get a brand new motorbike we couldn’t afford that was impractical and feeding his image. I was made to feel bad for not being able to ride it.

I heard my friend’s story about domestic abuse and alarm bells rang. I ignored them because I still believed in him but it was there, I was in love with a narcissist:

  • Love Bombing – He made me feel so special, this was it and I was the one. He promised me the absolute world and went above and beyond to win my love.
  • They can’t admit when they’re wrong. – He never ever said sorry even if he was proven wrong. You’d make me beg for forgiveness or tell me I was going mad.
  • Conversations are one-sided. – in the end I was helping him run his business but he didn’t even realise I was directing a play!
  • They’re really, really ridiculously good looking. I was made to listen to hours of how he got girl’s and guy’s numbers over the bar and was the most good looking guy at work. I was always made to feel lucky then ugly.
  • Their brand of empathy is self-motivated. Being the kindest most generous person in public was his forte, and it tricked us all into thinking he was so kind. It wasn’t like this at hime, the brooding moods and hours of silence or being picked apart showed that.
  • Your needs and requests don’t matter. So in the end I got so sick I couldn’t move, I felt terrible that he was my carer. I’d not ask for ages but then not being able to get upstairs for meds or into the kitchen for food. I’d guiltily ask for help or painkillers. He’d then stretch the time out as long as possible till I’d beg like he had some kind of control. It was torture yet always my fault. And the same was happening with our dogs as he neglected them then blamed me.

So towards the end I couldn’t work and was in and out of hospital. The experts were still saying it was OK, I was not OK. I was in pain most of the time and not coping, I was taking a lot of painkillers and 9 different meds everyday. I didn’t go out or forced myself to be exciting then be in bed for a week in agony.

All of this went on relentlessly and I was trapped in a cycle of pain, misery, bullying. Then we had to move house, I was exhausted. I knew he was cheating but made to feel so awful I didn’t have the self worth left to confront it. I was fucking up work and working like a maniac. I suddenly realised I was having suicidal thoughts.

I was very scared by this point and spent hours fantasising and planning. I tried to voice it but he didn’t listen. I got so sick with migraine I needed an ambulance but he wouldn’t ring one and then abandoned me.

Then out of hospital a week later I had another crippling migraine. I left the wedding we were at telling him why I couldn’t stay. I drove myself 45 minutes home then the vomiting came. I text to see where he was. I now know he was cheating. He came home and his only words were ‘its over there’s no talking about it’. Whilst I was at my weakest and most vulnerable he baled.

That was it for me. The switch finally flipped. My first reaction was flight, so I ran, my head full of ways to hurt myself. But I walked it out and bravely returned to the house to ask like an adult to talk about it. I wanted a reason why, to fight through it. To understand the cruelty and to be stripped of all control over my own life. I know now that he chose this moment because I was so sick and he is a coward. I also think he was in a corner and cheating. This is not how you treat someone after 6 years of building a life together. My voice was smaller than ever.

In one moment my life, trust and my home had gone. I already had lost my work and income and then my health was so bad. There was not an area of my life that was OK.

So I decided to end it. Not for attention or a cry for help. I just wanted peace. It’s hard to say I didn’t want to kill myself but it’s true. I really just wanted to sleep and not wake up. In that moment the pain of the world was just too much and I couldn’t go on. I panicked. I still in a way am annoyed that I wasn’t allowed to make my own choice.

It happened again two weeks later when he said the most terrible things to me after I found proof of the cheating. Even I didn’t realise how low he’d go in the moment of my pure brokeness. Telling someone they are mental and need help doesn’t help them but makes them panic. Panic that everyone will agree and say ‘lucky you escaping from that’. Saying ‘its been dead for years’ is the most hurtful thing he could ever ever say to someone who invested so much. There are things that were said that I cannot even write now as they are too painful. They make me want to vomit they were so degrading and bad. I flipped, went through anger and crazy. I shouted as loud as I could for help to those around me and I was saying I’m not OK. The next thing I knew were the police were climbing through my window and threatening to section me. I had tried to sleep again.

See there’s always a story behind the mental health and mines supposed to be down to my physical health and nervous system damage on top of all of this trauma. I’m not ashamed of my actions at all. I only worry that I still am a burden to others and let them down or scared them silly.

I didn’t actually mean to write this post at all. It was going to be something more generalised about mental health. But it kind of all fell out onto the page. One of the hardest things I’ll ever write and this is so paired back.

I’m also not a victim, I don’t want you to see me as that, I am always trying to fix things. This time my energy and life force ran out. My buttons were pressed. My control taken away. I really did choose flight but now I know I am full of fight. Bring it on. I survived this and now I want to do it my way.

 

Bird. Moon. Mirror. Lighthouse. Wolf

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There’s a caged songbird in my chest,

It’s meant for the sky and riding the air.

It forgot how to fly.

It flutters and bleats and can see the other side,

but my ribs hold it captive.

 

There’s a moon in my head,

Its meant for the ocean and to follow the sun.

It forgot how to shine.

It waxes and wanes and can see a path,

but my skull holds it prisoner.

 

There’s a broken mirror in my eye

It is meant to reflect beauty,

It forgot to be present.

Now it only see’s a painful past,
my gaze holds it there.

 

Theres a lighthouse in my soul

It’s meant steer the ship through the storm.

It’s light is buffered by the wind.

It looks to the future and brighter days,

but it’s light is dull against the fog

 

There’s a wolf in my body, 

It’s meant to be brave and care for it’s own.

It lost it’s pack.

It licks it’s wounds and takes time to heal. 

It will bear these scars with pride.

 

Never


Part of me wishes we’d never met.

That we’d always been lone wolves and never a pack. 
Never swam and chased underwater or danced and laughed at our four left feet.
Never caught trains on adventures and driven for miles whilst playing silly games to make it pass by.
Never stood so proud of each other whilst watching girls on roller skates collide. 
Never hunted the magical potions created in bars. Two maraschinos please oh and an espresso martini.

Never created delights to feed each other and had kitchen meltdowns to match.

Never hidden from the world under duvets whilst eating mountains of pizza and ice cream just to be together.

Never thrown pizza off cliffs and shouted from balconies into the London night sky.

Never had ignored each other whilst drawn to screens or watched series upon series back to back whilst I asked too many questions.

Never have had mad making projects in which I had the idea and you made it happen. 

Never put dusty records on the record player and sat in our pants.
Never been humiliated by our daft dogs, taught them to swim or snuggled as four.
Never have enjoyed making fires inside and out. Never have foraged for food and dragged home tree limbs with guilty faces.

Never have made lemon meringue pie with all my heart but it’ll never be your mums.

Never have spent hours making and finding the perfect gift to make each other just to know how wanted we were.

Never have barbecued in the rain.

Never have put the world to rights with a shared intensity. Anger in our words for peace and a better place.

I’d never have thrown your shoes over the wall or teased you about your new clothes.

Never have held hands in the cinema and felt our hearts race at being side by side in the dark. 

Never have invented the film rule or searched endlessly for the tiny remote.

Never have shared Sunday mornings in bed as the closest time together.

If only we’d never met…

I wouldn’t have given you that hug at the gate thinking you still cared. 

Or woken up from the pills to hold your hand and look into your eyes for an answer to the pain I’d tried to take away.

In that moment I trusted you still and believed you cared and we connected. 

But all of the nevers were lies.

I broke my rules for you…

On an adventure that took us from cliff tops to forests, we ran free and hid amongst the shadows, sick with being found out, wasting away like a panicked songbird wanting to be set free.

I broke all the rules for you.

We lost a key in the forest, we swam in the dark water. All the danger was there and you made it safe. We flew away to a house that crumbled by the sea,We lived in ruins under the weight of guilt, we pieced together a home.

 I broke all the rules for you.

Given a crown to wear  I let myself believe, this was a fairytale and I could be queen. I dared to dream of adventures that would last a lifetime. To always say your name and be ok.

I broke all the rules for you.

You wore my name and I walked by your side, my every moment was to grow us, to nurture what little we had, I loved you so fiercely that I forgot to love myself,  I broke us somehow when I broke all the rules for you.

I broke all my rules for you and now I’m alone in a dark forest, lost amongst the shadows. 

I walk the cliffs alone, pulled towards the dark waters below. 

The house is an ugly broken shell and I don’t even have the key. 

The adventures won’t happen and the crown is made of broken glass.

 But still I break all the rules for you.