As Ever, thanks to Purple Queen over at Finding Clarity.
Minds are a wonderful thing. This past month I’ve had one album on repeat. Frank Turner’s “Love, Ire and Song”There are one or two songs in there that I love. “Long Live the Queen” especially. A song he wrote for his friend. The first time I really listened to the lyrics I cried.
…now we have to dance for one more of us..
But tonight the song in my head is not one of Frank’s but someone I was introduced to nearly 15 years ago by my dad who told me to sit down and really listen. The singer was Harvey Andrews, a protest singer/songwriter. The song was one that my dad considered an anthem from his time in the army. That song was “Soldier” and it brought me to tears as well. A song about life, about following a path that leads to places you don’t intend, with consequences you don’t don’t expect. It’s a song about loneliness. About questions. About death, set during the Troubles in Ireland. A couple of other songs from the album “Writer of Songs” also stand out to me. “Hey! Sandy” about a university protester and “Anna my Love”
The days that we’ve had, they’ve passed into years
The shadows we’ve had have been shadows of tears.
Don’t let them see that we too have our fears
No don’t let them see Anna cry.
Anna my love, now I can stand
Now I can face them with love in my Hand,
Now I can speak for the ones of my land
They have taken, shaken from sleep.
Words about a war, I don’t know which, or where. I want to say I’ve been told it’s Europe, in the 1940s, Or Russia. information is hard to come by at 1AM to a sleep addled brain. But these lyrics speak to me at the moment.
I always – fight – argue against saying I’m waging war against my mental illness. It is terminology I have come to hate. I’m not fighting against my mental ill health. I’m trying to live with it, but sometimes it does feel more like a fight. The bad nights when I can’t sleep and I sit on the sofa too exhausted to cry. The bad days when the thought of going out and facing the world is enough to send me trembling back to bed. Those are the times when I believe in the terminology I hate and life itself becomes the thing I am struggling for.
How do you bring those two opposing view together? How can I face my brain with love in my hand as it tears itself, and me, apart?
The day I know the answer to that will be the day I can live again. Until then I exist. Not fighting, but surviving.
Should I choose the smoothest courseSteady as the beating drum?Should I marry Kocoum?Is all my dreaming at an end?Or do you still wait for me, Dream GiverJust around the riverbend?— Pocahontas
Most of you know I’m training to become a mental health nurse. And that it’s taken me a long time to get towards the end of my course. For the past five years I have stubbornly, stubbornly clung to the idea that graduation is just around the riverbend.
And now it may not be.
So much of what I am, of who I am, was tied up in my identity of student nurse. Its something I am tremendously, incredibly proud of down to the deepest level of my soul. Nursing, and my being a nurse, has given me the drive to get up in the morning, to study, to want to go to work. Even when I don’t really know the staff and all the anxieties that brought, even through change after change after change of medication as each antidepressant, singularly and in combination stopped, or never started to work. Nursing is something I wanted, and needed to do. It was my vocation.
I’ll never forget the first patient who thanked me for being there and apologised for being a nuisance as I helped her clean herself after an accident. The patient who cried when she realised my placement was over and I wouldn’t be returning to the ward. The patient who, when asked why she had taken up smoking at 87 and given up at 95, grinned at me and said: “You know how it is love. I fell in with the wrong crowd.” I remember seeing patients come in at the height of a manic episode or nearly catatonic with depression and watching, walking with them as their personality starts to emerge again from the depth of their illness. That’s why I did it. That’s what made it all worthwhile.
Last February, I became an inpatient myself. In April, I was discharged from hospital. Stable, if not well – no-one leaves hospital well – and then September seemed so, so far away. Which was good, because I wasn’t ready to come back to my studies. I wasn’t ready to pour myself back into everything that entailed. In August, I still had my doubts, but it was there, only next month. and the first term were lectures I’d already done. And then September came, and I went with it. After all, if i didn’t try, I’d never know, right?
And for the first time I couldn’t ignore the otherness that has been with me longer than I can remember. Lectures with my third cohort who I wouldn’t recognise if I passed them in the street. Watching my (second) old cohort graduate without me and start their jobs, doing the thing that I had been pushing towards and dreaming of for all those years. Christmas came, and I still wasn’t well, still wasn’t in the position to start placement, so it was rearranged, pushed back by 8 weeks. And here we are.
Last week, occupational health said (rightly, however much I try to pretend otherwise) that in their opinion I am not fit for placement. My mood was too low, my medication once again doing nothing to help. I could barely drag on my clothes to go to the appointment. How was I supposed to help look after others?
Right now, I’m in a place where my anxiety is as high as my mood is low. And boy, is my mood low. I’m getting daily visits from IHBTT (Intensive Home Based Treatment Team) who are assessing daily whether I need to go to hospital again. Today, the nurse who came out to visit me suggested that maybe nursing wasn’t the career for me if I was reacting like this to being a student. She said “Maybe you can redo the degree in a few years when you’re in a better place.” She mentioned this a few times.
Turns out, she’s not alone. My mates who have just graduated who think I’d make “a bloody great nurse” and that that it would be a shame if I quit, but if I do carry on, to make sure I do it for “the feckin right reasons” That my health comes first. My husband agrees. Maybe, if I quit I can go right back to basics. With a routine that is added into slowly slowly,and that I choose what to do with the rest of my life when I feel I have a rest of my life to live. All of them, all of them are amazing and will back me 100% no matter what I choose to do. I’ve got some pretty amazing people in my life.
But what happens if I do leave the course? What happens if I realise that I was meant to be a nurse, but it’s too late? How do I reconcile people telling me that I can’t choose my future when I’m in the dark, dank hole I am with the fact that I am having to choose. And that terrifies me. The course is a huge stress. Of course it is. How could it be otherwise? I am training to help save people’s lives. But that stress has been pushing me forward all these years and I can’t see what could ever fill it’s place. All I can see on the other side of is a cold and empty void.
What should I do? Should I chose the smoothest course and quit, and never know what might-have-been? Or should I journey around my river bend and see what waits? Either way, I’m at a crossroads. How do I decide the rest of my life while I’m stuck between my potential and my illness? If I were advising someone in my position, I would remind me that there is potential in my illness. In the experiences that brings.
But what is potential if there is no hope?
I was very lucky yesterday to be able to attend the future mental health nurses’ conference. It’s an amazing event, now in it’s third year run by student mental health nurses for student mental health nurses. For some reason, they asked me to speak about my experience of mental ill health and recovery. So I did. The fabulous Rachel filmed the talk for me and I thought I’d share it with you all. It’s about half an hour, so you might want to go make a cuppa before you sit down. I’ve just watched part of it back, and I wasn’t aware how many faces I pulled.
I’m still exhausted, and it’s starting to slip into the realm of the unreal, so I’m glad I’ve got proof for myself that I did it. The feedback I got at the end made it all worth it. I was thanked, and hugged and had my hand shaked but I think the highest honour of all was that people told me their stories. Stories of worrying about having to step out for a year because of their mental health, stories about not being a mental health nurse but feeling like they needed more information about mental health to become a better student paediatric nurse, stories of finding people they knew when they were out on placement and feeling better about how they handled it after my talk. I told my story to 100 people yesterday, funny faces and all, and I got some back in return.
I was in some great company, With talks by people like Norman Lamb, Andy Brogan, State of Mind (Malcom Rae and Danny Sculthorpe) and Jake Mills. I can’t claim to remember much that happened before I spoke just before lunch but there were some sentences that stayed in my mind. Especially Danny Sculthorpe’s talk about his depression and recovery.
“…I now realize that if you can ask for help and admit you have a problem you’re more of a man than if you don’t.”
“…you don’t have to be a a specialist in mental health to ask if they’re OK.”
Jake Mills had me in tears of recognition when he spoke at the end of the day about his depression, suicide attempt and recovery. He talked about his charity Chasing the Stigma and his stunning resource the Hub of Hope. (If you’re from the UK and you click on one link in this post, make it this one. It’s fairly new, but I’m tremendously excited about it, and I want to tell everyone).
So, as far as I could work out I had to pay to host video on the blog, and I am far too infrequent a blogger to do that, so here is a link to the video on YouTube. Let me know what you think.
And it was a good run because only four people hurled abuse at me.
Only FOUR people.
This was my first solo run. Me, my headphones, the pounding of my feet on the pavement and my somewhat strenuous breathing. Of those four people, the first just honked his horn and gave me the finger when I looked up. The second laughed to his mate.
Look at that fat bitch pretending to run.
The third looked me up and down, his lip curling with distain that had a physical weight similar to that of my obese self. How dare a fat person wear exercise clothes and use them as intended in public. The fourth yelled out of the window of his speeding car as I was bent over talking to my friend in her car.
Oi! Fat arse!
I’ve resisted going running alone even though I wanted to because I had a feeling something like this was going to happen. I wasn’t wrong.
This isn’t restricted to me exercising though. I can’t remember a period of more than two weeks for most of my life without some stranger, never the same one twice, has felt the need to tell me I’m fat or to chant rhymes at me like:
“Who ate all the pies?
Who ate all the pies?
You fat bastard, you fat bastard.
YOU ate all the pies.”
“Hey fatty boom boom”
Or to follow me down the street yelling “BOOM!” with every footfall and pretending there’s been an earthquake. Do I make the earth move for your barely pubescent self? Because you don’t do it for me. I’ve started ranking comments out of 10 for originality and cleverness. I vary rarely get anywhere near 10.
It’s ok to scream abuse at me. Because I did it to myself. I’m fat. Therefore I’m lazy. I’m a slob. I’m dirty. I’m other.
I live in a world of shame.
I’m shamed for being obese.
I’m shamed for not doing something about it every second of every day. No pause. No break. 24/7. Until I break.
I’m shamed for doing something about my weigh. I should be body positive, yo!
I’m shamed for having an unhealthy relationship with food. That includes dieting.
I’m shamed for exercising, because “no-one wants to see that.”
I’m shamed for not exercising more because I’m clearly “not trying hard enough.”
I’m shamed for existing.
I can’t even go to the doctors without my body getting in the way. They see the way I look and no matter what my complaint is, the answer is to lose weight.
Pain in my shoulder for 3 months? Lose weight. UTI? lose weight. Ear infection? Lose weight. Take an overdose in an attempt to end my life? Have I maybe considered losing weight?
I have had times when I’ve had a chest infection so bad and for so long that I can’t even breathe and I haven’t dared go to the doctors because I know I’ll just be told it’s because of my weight. Doesn’t matter that I am usually coping fine. Nope. It’s all about my weight. If my head fell off, they’d only tell me to lose weight and it would reattach itself.
And people think I deserve it. After all, I’ve done it to myself. Is it any surprise that over the years I’ve internalised all those comments? That part of me, the part that has learnt that distainful, hate-filled outraged voice only too well starts to whisper that… Maybe they’re right? After all, that many people can’t be wrong. Can they? It is all my fault. I am a disgusting creature – no, a thing – and I deserve everything I get. I have no right to complain. Because it is my fault. And well, it’s just the world I live in.
I live in a world where it is ok to deny my passage on a plane because I am a “person of size”. Seriously. Most airlines have a policy that they can insist that I buy an extra seat ON THE DAY I FLY or just refuse to let me board or make me disembark IN FRONT OF EVERYONE if the person sat next to me complains.
I live in a world where people put their bags on the seat next to them on busses so I can’t sit there. They don’t want to be squashed, and it will help me out if I have to stand, right? Right!
I live in a world where if I eat anything – anything – in public I will be judged for it. An apple. A cone of chips. Last night’s leftovers. Am I sure I should be eating that? I can’t order the thing I want off the menu without tuts from nearby tables. If I order a single scoop of icecream and a (thinner) friend orders a giant sundae, I am the one who is judged for getting a pudding.
I live in a world where I have to look for chairs without arms, just make sure that I don’t get stuck in them.
I live in a world where I have to judge how badly I want something. If there are gates or turnstyles, is it worth potentially not fitting through the gate? Will the shop have isles too narrow so people can’t pass me?
I live in a world where, despite being female I know that I won’t face catcalling or sexual comments or assalt because I am an object of disgust. The only time I do face comments like these is when someone is trying to shame their friend, by implying that they could possibly be attracted to something as gross as me.
I live in a world where I am fair game. To strangers. To ‘concerned’ friends and family. To healthcare professionals. To teachers. To colleges. To everyone.
I live in a world I don’t fit in. A world that isn’t made for the likes of me.
And I can’t ever see it changing.
Almost 7 whole weeks since I was discharged. 1128 hours. 47 nights in my own bed, still waiting.
Waiting for that magical moment. The ‘cure’. the point at which I can look back and say “yep. I’m recovered. I was ill. I am no longer.”
Waiting for a moment that may never happen. Not completely.
Mental ill health isn’t like a bacterial infection to be cleared up with a course of antibiotics. There isn’t a marker in my blood that can be tested for it’s absence or presence.
On that sliding scale that is mental health, between those two poles, where do I place my self? What are the values? ‘Healthy’ and ‘unhealthy’? ‘Manic’ and ‘depressed’? ‘Whole’ and ‘broken’?
Am I a little bit broken/unhealthy/depressed? A lot? Who decides? And how? How reliable is that decision? How close to the ‘good’ end of the scale is close enough? What is the good end of the scale? How do I get there?
How do I recover if I don’t know what recovery is? Although I long for it I know it isn’t a switch. On or off. Fixed or not. This gossamer-like concept that tears as soon as it is looked at, elusive in it’s fragility, does not lend itself to that black-and-white, all-or-nothing thinking.
Depression does though. ‘I’m totally useless’ ‘no redeeming qualities’ It extends into the past and pollutes the future too. ‘I’ve never done anything worthwhile and I never shall.’ That’s as far as you can see. There is nothing else. The doctors appointment tomorrow is a million years away, recovery – thinking about it only to humor your healthcare professionals because it can never really happen – is so far away it might as well be after the heat death of the universe.
A year ago, two years, five years, ten, if you pressed me to think what good mental health was – is – part of the muddled answer you’d receive would be about being able to cope. Being resilient. Being able to react to what life throws you appropriately and being able to move on. But what’s appropriately? How do I get there? How do I get back there?
I’ve had a lot of time to stand and think, and sit and think, and lay and think. these past 7 weeks. And ruminate, and regret. Among other things I’ve realised that I’ve been trying to recover to where I was this time last year. But that isn’t recovered. That isn’t mentally healthy. Not for me. Problem is, I don’t know what ‘mentally healthy’ feels like any more. I was first diagnosed with low mood in 2012. I’ve been on antidepressants continually – except for a 4 month gap in 2013 – ever since. And at no point since, and possibly before, have I not felt that dragging weight of low mood, fatigue, that feeling that my mind and myself has been bruised at the deepest level. It has become my normal now. And if I work to recover to this point, am I just letting myself down? Am I being like the foolish man building his house upon the sand, never thinking about the rain and floods and what they might mean to me?
I don’t know. I don’t know the answer to a lot of things at the moment. September feels as far off as my 70th birthday, which is nearer than it was but still oh so far away. Uni is this vague amorphous glittering haze on the horizon. There’s nothing tangible there to grasp. There probably won’t be until I pitch up on the day, and maybe not even then. I’m doing shit because I know it is The Right Thing To Do™. Everything I’ve learnt in four (!) years of this degree tells me its The Right Thing To Do™. Every time I’ve had patients doing something positive, I’ve been pleased, because it’s The Right Thing To Do™. All that theoretical knowledge, that it’s hard, but the patient must be the driver of their own recovery…
I don’t feel like I’m driving my recovery. I feel like a hamster in a wheel, running and running and never getting anywhere. Everyone tells me I’m doing so well, and at the moment that is all I have to go on. Maybe I am. Maybe I’ve just managed to wrestle the coping persona back in front of me. It’s a lot thinner than it used to be.
Maybe that’s a good thing?
I don’t know. I wish I knew who I used to be. I miss her, even if I don’t remember her. All I know is that she isn’t me.
This is me.
Confident, friendly, principled, driven.
On the outside.
This is me.
Laughing and joking, sarcastic and goofy.
That’s my humour.
This is me.
Watching and waiting, pretending I’m fine.
It will happen soon.
This is me.
Anxiety rising, depression is deeper.
Leave me alone.
This is me.
Try to enjoy yourself, pretend to fit in.
Hope that you fool them.
This is me.
Watching and waiting. They can’t really like me.
They’re just being polite.
This is me.
Withdraw, retreat. It’s safer alone.
No-one will miss me.
This is me.
Alone and now lonely, afraid to engage.
What is wrong with me?
This is me.
Ill and recovering, relapsing again.
Lost in my mind.
This is me.
Creative, compassionate, principled, driven.
This is me.
As of 7PM this evening I will have been an inpatient on a mental health ward for an entire month.
I don’t really remember my first week. I spent a lot of time staring at the wall and pretending to be asleep when people came to the door, only coming out for medication. I didn’t eat, I didn’t drink, and I didn’t move. I didn’t care. They fiddled with my meds, reducing this, changing that, adding the other.
Pregabalin had an effect, giving me enough energy to mask my mood and pretend to function. I started interacting with the staff, slowly getting to know them, getting to know some of my fellow patients, finding friendship and acceptance in them. A lot of the care I have recieved is exemplary. I have had HCAs sitting with me for an hour, talking about cats and scrabble, when my mood was so low that I just wanted to hurt myself. I’ve had staff sit down with me and play scrabble, even though there are a million other things that needed doing, a million things that I know only too well. There have been staff who have asked when doing the checks, ‘are you OK, is everything all right?’ instead of just glancing into my room and walking away. The housekeepers coming to my room because I haven’t been out to breakfast and lunch to ask if they can make me a sandwich because they’ve noticed I haven’t eaten. These moments I cherish, they stand out way beyond their apparent importance to the staff. They made me feel safer, secure, accepted.
There has been bad care too. Days when the people doing the checks haven’t noticed the bloody tissues on the bedside table, there as a mute plea for someone to come and talk to me on the days I couldn’t approach them. There were nurses who were cold and brusk and and dismissive. Charitably I can only assume that they have burnt out, vindictively, that they never should have been a nurse in the first place. There have been miscommunication and outright lies, and condensending doctors who have changed my medication after a month at my insistence but do so grudgingly and make it clear that it is only because I am insisting. All of this, and more.
I’ve struggled while in here. Never has the devide between staff and patient been clearer to me. In lectures we talk about the power differential that having a set of keys gives you. Watching people walk on and off the ward without a thought, while I have to ask for paracetamol for a headache, or for the garden door to be unlocked so I can sit outside and watch the daffodils nodding in the breeze. Seeing staff – qualified nurses who I’ve studied with as students, stood on the other side of the stable door in the clinic, in control of my medication really brought it home. I cried for hours after that, and then to overhear ‘oh, I went to uni with Hanna, and she seems a bit upset about it.’ it’s nothing to her, after all, she ‘barely knew me’ and she has that power. She is standing where I could have been if everything hadn’t happened as it did. But I’m not. I’m stood there in my pyjamas and socks waiting for you to pot up my evening meds oblivious to the fact that I can barely speak because I’m holding back tears. I bolt, as soon as I can, back to my room, the only place I can call mine on this constantly changing and rolling environment. But then, I’m ‘Hindering my recovery’ and ‘not utilising my leave appropriately for an informal patient’ I need to ‘come out of my room more and allow staff to assess me’ but I wouldn’t do that at home, or in student halls. I’m a solitary creature, with solitary hobbies and solitary needs. Noise, movement and chaos drive me spare, and raise my anxiety through the roof.
It’s like I’m lost in here. I’m not Hanna the student, or Hanna the crafter, or Hanna the musician or Hanna the friend. I’m Hanna the patient and I know as little about her as the staff looking in from the outside. Care plans I’ve written for the safety and recovery of others have been written about me. ‘Hanna is overweight, promote a healthy diet’ ‘Hanna is a sharps risk, all shaves must be supervised.’ ‘Hanna is care cluster 7. Enduring non-psychotic disorders (high disability) and needs to be supported to a timely discharge and recovery’
What is recovery? Not spending all day in bed and pretending you’re all right? Forcing yourself to act like you wouldn’t at home, socialising with people when you heart is crying out to just go, be alone to stop, regroup, recover your strength? Maybe it’s being seen to accept all input and not dissenting, be that from the OTs, the physio, the dietitian, the consultant. Don’t make them frown, you’re backsliding, you’re ‘hindering your recovery’.
All being well, I’m due to be discharged in a week. Next Thursday. Now that I’m eating and sleeping and dressing and drinking and interacting. Clearly I’m outwardly recovered. The question is, what about the rest of me?
And recovered back to what?