Arrested adjustment

They always say the period after a hospital admission is a difficult one, but I didn’t expect it to go on and on being difficult. My mood was good in the first three weeks or so, which I at least partly attribute to the high (as in beyond normal recommendations high) dose of lamotrigine I was on. For a while, lamotrigine tends to feel like a wonder drug, but sadly for me that never lasts and the good bit tapers off.

Since then I’ve been a Home Treatment Team case for a second time and now I’m back to consultant care, trying to figure out how to cope with the side effects of aripiprazole. Ironically, I refused to even consider the drug for years because I has seen it cause horrendous agitation in others and knew I couldn’t cope with that.

Instead I have found it very sedating, confusing, making me even more uncoordinated than usual, giving me brain fog. It’s all very difficult. I’m going to have to be signed off work for longer than I thought. I’ve tried one work task (well, I say work, it’s not even paid) and it’s taking me about four times longer than normal. My concentration span is fleeting and I tire very easily. I can’t read, which is a major problem for my job.

I’m typing this surfing a wave of increased alertness that I can grab as the aripiprazole starts to wear off and before I have to take the quetiapine. It’s an unpredictable wave. It didn’t even happen yesterday.

I agreed with my consultant today that I would a) take the aripiprazole in the evening instead of the morning to see if that helps and b) come of the remaining 300mg quetiapine to see whether having both drugs in the mix is causing the sedation. We need a clearer picture of what the aripiprazole is actually doing to/for me. How fast I drop the remaining quetiapine is largely down to me.

One thing that’s remained kind of constant despite mood changes and med changes is something I’m quite ashamed of – and that’s wishing I was still in hospital.

I can’t shake it. I know it would never be the same as it was, that I would have to go into to the very treatment wards I resisted, that only two of my friends remain in hospital. But there’s been a recent period where every time I thought about my time in hospital I cried because I missed the.

My therapist has picked up on this and would like us to explore what’s going on. I think some of it is obvious. Going into suicidal crisis again a month after discharge. Feeling that between symptoms and side effects the basics are too much.

The basics include finding something to make for dinner and then making it feels like too much. Working out which meds I have to add to the community pharmacy dossette box feels like too much, although Tom does oversee this. Deciding whether to nap or not feels like too much, and so does trying to decide what to do with myself while I’m incapacitated by sedation. I can manage a bit of frivolity, a bit of distraction (Twitter followers will know I am slowly putting together a Dolly Parton costume for a party), but I struggle with anything that matters.

So a part of me doesn’t want to have to make any of these decisions or calculations. Apparently amid the frustration and boredom and infantilisation that characterises a psych ward I enjoyed feeling safe and feeling that most responsibilities had been lifted from me. I didn’t need to handle meds and I didn’t need to handle money and I didn’t need to manage meals.

I know I’ve got to a point where I am romanticising my stay and shoving the crap bits aside. I know it’d be far worse to be sedated on a hospital bed than on my own sofa with my laptop and my blanket. And I know I hated not being able to sleep in my own bed next to my husband, or indeed be able to sleep at all due to the… vocalisations of my neighbours.

I went to outpatients today and I cried in the hospital garden because I was right by the inpatient unit. I feel sad about this, and actually quite ungrateful for not being happy to be out in the community when people I know on the wards are desperate for discharge.

My longing makes a kind of sense. And yet it makes no sense.

And I remain ashamed.

 

 

 

 

 

 

 

Posted in Bipolar, Crisis care, Depression, Hospital, Inpatient care, Medication, Mental health services, Mood disorder, NHS services, Psychiatry, Self-management, Therapy, Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 6 Comments

Unpacking

Today I unpacked a little wheelie suitcase. To the casual observer it would probably have looked as if I were off to a weekend in Barcelona or Prague or somewhere, trying to get by with just a carry-on bag.

It was actually the bag I packed because, for the second weekend running, we thought I might well need to go into hospital. I’d packed clothes and toiletries and a novel and a colouring book and pens and earplugs and a sleep mask and my spare phone cable. I had three days’ worth of everything; enough to get by until Tom could bring other stuff.

At some points that full suitcase was a comfort because I knew I could go in if I needed. At others, it generated a feeling of practical relief, that we had been so sensible, so prudent. One night I lay awake because it terrified me, the thought of going back.

As I sobbed and sobbed to the Home Treatment nurse on Monday she expressed her concern that I was quite obviously not coping in the community. I was having more and more paranoid thoughts around technology and the same old banana skin thing. I was very low; I wasn’t suicidal but I knew that every day I felt that weariness would grind me down, that every piece of “evidence” that I was being persecuted would eat away at me until I didn’t want to be alive.

On a scale of asking (rather than being told) to go into hospital I was at 99% that day. I was desperate the relief of not having to looking after myself. I decided to give it one more day.

Things have turned around. I am maybe a little high, but my God is that preferable. I am on week three of aripiprozole and now at therapeutic dose, waiting to see what it will do for me. I have just put the T-shirts back in the drawer and the bag of travel toiletries in the bathroom cupboard.

Yet part of me still hankers after hospital. Even now. Even now my friends have gone, even now I would be on one of the treatment wards I fought hard not to be moved to, even though I am not at risk to myself or anyone else.

I’m getting into the swing of therapy with psychologist Ellie now. In this coming week’s session we’re going to try and unpack why it was that my hospital stay meant to much to me and why I am drawn to going back. There’s a lot of stuff there about boundaries, about how I both crave and kick against rules, both loved and loathed the ward.

I guess we’ve reached the point in therapy where things are going to get messy.

I hope I’m strong enough.

 

 

 

 

 

 

 

Posted in Hospital, Inpatient care, Mental health, psychology, Therapy, Uncategorized | Tagged , , , , , , , , , | 13 Comments

Autobiogramophone: six songs of a bipolar life

Here are six songs.

I’m not making a story from this list; there is no beginning and certainly no end, just some songs, songs that represent a feeling, a mood state, a moment in my bipolar-filled life.

I haven’t gone the full Desert Island Discs eight because I waffle on too much. (What, me? Surely not?)

 

Play Dead

Björk – Debut (1993)

No other song encapsulates for me the pain of the depressions I went through during my university years.

I didn’t really go away to uni. In 1992 I chucked away a place at Cambridge and enrolled in the local, bottom of the league university to be with my 18 year old fiancé. I was just desperately afraid that I couldn’t manage without him so we moved in together.

Turned out I couldn’t manage with him, either. He was out of the flat 9-5 while I had just a few hours of classes a week, giving me little chance to make friends, and anyway everyone else seemed to know each other from living in halls or shared houses. Our flat was cold and mouldy.

By the end of the first term I was so crushed by depression I was on the verge of dropping out and thinking seriously of suicide. The GP at the student practice agreed that I needed specialist input, so I was referred to a psychiatrist for the first time – and that is a whole other story. A long story.

 

Break and Enter

The Prodigy – Music for the Jilted Generation (1994)

But of course between the uni lows there were the uni highs. I’d already worked out that there was something different about my “happiness” – I stopped drinking, not feeling the need for booze, let alone pills, because my brain chemistry did it all.

Lots of the good times involved, in the absence of uni buddies, a tight set of friends from school . I was the only girl in our little gang of four, which included my husband (we married at the end of our first year) and I milked it. I milked it in a way I remain guilty about, as there so were many boundary issues and so much inappropriate behaviour when I was hypomanic. Meanwhile clubs or parties just increased my opportunities to flirt and enhanced my grandiosity.

I have a very vivid memory of this track. I am standing with the three boys, wearing skin tight leggings and nothing above the waist but a plunge bra and a couple of necklaces, posing with my friend’s pellet gun (a replica Heckler and Koch which I’m sure would have him instantly nabbed by counter-terrorism police these days).

There’s the whole gamut of hypomania there: the focused energy; the heightened sexuality; the sense of power and invulnerability; the edge of aggression; the delight at being the centre of attention.

 

Don’t You Worry ‘Bout A Thing

Stevie Wonder – Innervisions

This song represents all the wellbeing and stability I can sometimes be lucky enough to experience. While I was pregnant with my first child I entered a surprising period of… happiness. I felt good. I felt calm. I felt serene. I was not high.

It was a gift of a period, one of the best in my life. The pregnancy was “textbook”. I worked part time in the university library, something I enjoyed, and had plenty of time for yoga and planning my hippie birth.

for usI had a tape of Innervisions, supplied probably by my ex-father in law, someone who introduced me to a lot of music. In other words, he recorded stuff  from vinyl (for anyone under 35, that was our equivalent of illegal file sharing). I loved the whole album, but this song with its repeated refrain about not worrying, about allowing someone to step out and try something new while being supported from the wings, seemed both a great message for me as I moved into motherhood, and a great message for my unborn child.

 

Turn

Travis – The Man Who (1999)

My daughter was born in the last month on the 20th century. I remember this song was playing on MTV while I was spreading out old blankets and sheets on the living room floor in readiness for my home birth.

My waters had already broken and I was having very mild contractions. I was crawling all over the house because she was in a somewhat unnatural position known to make labour harder. I had been advised that being belly downward might help her to quite literally turn in time for labour proper, but she didn’t, and the labour was infinitely worse than expected. But I don’t hold it against her. Anymore.

But the lyrics also seemed to speak to the antenatal depression I’d been silently experiencing for the previous couple of months. Postnatal depression I knew about – it was a bullet I felt I had dodged after my son was born –  but who could admit to feeling suicidal with new life within? I felt like a monster. We’d recently moved and I felt trapped and lonely without a social network of other mums. The lyrics speak of wanting to feel like I felt before, about wanting to live in a world where I could belong, about wanting to survive – but could I? Could I live in a world where I could be strong?

Not for a long while. No.

 

Insomnia

Faithless – Reverance (1993)

I feel like I’m sort of cheating here, because this song wasn’t as important to me at the time of its release. In fact I wasn’t that keen on Faithless in general. To say that it has grown on me though is a huge understatement; in fact it is now, and has been for a good while, my Mania Anthem.

I recently suggested to someone that the narrator was manic, she said that was “an interesting way of looking at it.” I felt like, come on! The guy can’t sleep for weeks despite taking sleepers. He feels under the control of some energy inside him (“the beast in his nature”) and he’s in a sexual frenzy, tearing off his girlfriend’s tights with his teeth in an open space. Hello???

Anyway. That little keyboard riff after “I can’t get no sleep” will forever make the hairs on the back of my neck ripple and come hypomania, you’ll find it on a loop with the volume up.

 

Move in the Right Direction

Gossip – A Joyful Noise (2012)

Anyone who knows me also knows I’m not big on the recovery model – but this song kind of gives me hope. The narrator (could be Beth Ditto, but I’m assuming a character) doesn’t talk about a specific state, just about continual forward motion towards a point that is closer (rather than close to or at) to an unspecified form of perfection.

It represents to me my stronger days or weeks, times when I can hold back the tears, days when I can have motivation to push forwards in my life, ruminating a little less. Of course I have reached this point a million times in my life only to lose that sense of baby steps forward and be hopeless and helpless again, but I still find this song meaningful (and I love to belt it out).

Posted in Bipolar, Mental health, Mood disorder, Recovery, Suicidal thought, The arts, Uncategorized | Tagged , , , , , , , , , , , | 4 Comments

The Shame

I have never been ashamed of being bipolar, of having a mental health condition of any kind. I’m not responsible for my genes, my childhood, it’s nothing anyone would choose. I am so unashamed that the recent hashtag #imnotashamed caught me be surprised. Why would I need to assert that? How sad it is that anyone would have to assert that.

Yet here I am consumed with so much guilt, so much shame.

I should’ve noticed I was sliding downwards when I sat on a plane bound for Germany, looking out at the clouds below. Rather than excitement or joy, I felt guilt. I was remembering a time when I was 13 and my family took me to southern Spain to experience a very different sort of Christmas. It was fab, as I remember; seafood stew for our festive dinner, the buzz of the Christmas Eve markets under intricate designs of pure white lights. At the exact same point on that flight a girl in the next row, perhaps a couple of years older than me, was clutching breathlessly at her mother’s arm. “Oh, Mum!” she kept saying. “Oh, Mum!”

Blasé having been on an aeroplane all of six times (two of which I was too young to even remember), I felt a lofty superiority towards this air travel novice. Later I shared my patronising scorn with my mother, who quite rightly told me not to be mean.

It’s almost thirty years since this incident occurred. An incident that wasn’t even an incident, a bitchy thought that I never even shared with its object. No harm was ever done to that sweet, naive girl looking down at the clouds. And yet I dwelt on it during the flight. I felt shame.

Since coming out of hospital I have been in (for me) super femme mode, wearing more makeup than usual, taking more care with my outfits, my hair, my nails. It was a reaction to how I knew I’d looked on the ward. It was a source of embarrassment that I’d had close friends who had never seen me without a two-inch band of silver roots, never seen me out of jeans or pyjamas, never seen me with makeup on, never seen me with shaped eyebrows or painted nails. I felt proud that whenever I bumped into a ward buddy on my way to Home Treatment Team they would exclaim over my appearance. Even the receptionists kept saying how well I looked.

During our brief, beautiful break in the Alps this month it became clear to me that the driver behind this concern for my appearance was shame and that a month in the community and a two hour flight across Europe had not been enough to outrun it. Over the five days we were away my sense of disgust about myself swelled. I felt fat. I felt old. I felt unattractive. I felt that the nail polish and the foundation were literally painting over the cracks. We were away for Tom’s Big Birthday treat and I felt that I was a letdown as a companion.

This was compounded by the fact that I had no money. I haven’t worked since January. I claimed ESA (Employment and Support Allowance, the UK’s sickness benefit) in early February but the money didn’t come and it didn’t come as evidence apparently got lost and had to be resent. The money didn’t come through until yesterday, two weeks too late to buy Tom a present. In the the end I made one. I put so much care and love and attention into it but I remained deeply ashamed that this was all I could offer and no matter how much Tom says he loves it, I cringe when I think about it.

By the last couple of the days of the holiday we had been joined by two of Tom’s family members. I find it really, really hard to be away with other people; in fact after a horrendous time in 2012, we’d tried to go away just to the two of us, but it was Tom’s Big Birthday and of course he wanted close family there. I felt guilty that I was afraid of that. On our last night I started to go into meltdown. In the morning we were supposed to be sightseeing, but I couldn’t, I couldn’t be around people, not even close family, and I felt tremendously ashamed of this. I couldn’t even hide as we had to check out, so I had to hang about in the lounge wearing dark glasses and clutching tissues. I was ashamed to be crying on and off on the two hour journey back to the airport and most of the way home on the plane, despite the camp steward’s very best attempts to make me smile (I even feel guilty about my failure to respond).

Since we got back there is is so much more I am ashamed of. I can’t maintain the femme veneer. I’m lucky if I can wash my hair. I am ashamed of my recent detailed suicide plan, of its cold meticulousness. In addition – and I haven’t written about this anywhere else – I recently took a very small, non-accidental overdose. I suppose I didn’t need even to go to A&E but we went anyway just to be safe. I am probably more ashamed of this than anything I have done in years. I actually feel sick writing about it. I put Tom through needless shock and worry, abused just a few few minutes that he left me alone, left him wondering he could cope with me the community and wasted about 6 hours of our time in the ER. Hospital became a very real possibility again. I all but packed my bag.

I hate myself for it. I don’t even know why I did it. I am terrified that it must have looked like attention-seeking behaviour (although thankfully no one at A&E said so) or an attempt to manipulate my husband. It wasn’t. I don’t know what it was. I know I was dissociated; part of me was watching myself from a corner of the ceiling, wondering why I didn’t just… stop. My skin crawls with the shame of it. I am particularly ashamed because we had a tight management plan in place involving Home Treatment nurses and doctors, my own consultant and my new psychologist. There was absolutely no need. Tom didn’t want me to tweet about it but the shame and the self-hatred has been eating away at me every day and I can’t contain it and I need to let it out.

One of the HTT nurses who knows me very well has noticed how much I am self-blaming. “It’s us,” she said, “not you. It’s us that have left you under-medicated without enough support, and here you are on less than half your normal meds, so it’s not surprising at all than you’ve become unwell again.”

Despite her kind words I once again loathe myself for being incapable of adulting. I stopped ESA three weeks ago but in the past seven days I have been too sick to undertake the only work I’ve had in months, several things I’d been particularly looking forward to. And they would have paid, so of course I’m back to zero income and will have to go through the rigmarole of claiming again. I didn’t see my daughter last weekend as planned because I was too ill which pushed all my Bad Mummy buttons. I am ashamed that I have basically stopped going to yoga, usually my lifeline, or indeed doing any exercise.

Yesterday was my birthday. I felt that I really should at least try and do something other than see Home Treatment Team, so I made a plan that I would go to a nice art house cinema and watch a well-reviewd Japanese film (because, yes, I am THAT middle class) then Tom and I would go for cocktails and be joined in a meal by close friend Miss J. I left HTT and stood outside the hospital gates, looking up and down the road. Catch the bus going left and I’d get to the overground and the cinema. Right, and I’d catch the bus to the tube home. I went right.

In the evening I couldn’t go out. I didn’t have it in me. Tom went to the Co-op and bought a ready meal and garlic bread and tiramisu. Miss J had already, very thoughtfully, placed a bottle of prosecco in the fridge. Did I enjoy myself? Not really (although the tiramisu was very good and we mixed the fizz with some elderflower gin my mum gave us and that was actually pretty awesome). And so I felt ashamed, like I had squandered what was supposed to be special day.

I wanted to hide forever. 

Tomorrow I see Dr HTT. I hope. I really fucking sincerely hope because sometimes he gets called away on emergencies. And I also really fucking sincerely hope that I will start the new med like, tomorrow. Neither Tom nor I feel that it can wait. Neither of us can cope with me as I’ve been and frankly if it doesn’t happen I’m probably going to end up back in hospital. Something needs to stop these spirals of shame and guilt and suicidality, because I am taking more and more of it on myself in a kind of horrible feedback loop, blaming myself for every single thing that’s happened since 1987.

Why wouldn’t I start it? Well, because I have been down this road before. Every time someone in my Trust switches team, they come under the consultant for that team. So if you have a community consultant, they relinquish responsibility for you to the consultant of the Home Treatment Team while you under their care. Move to a ward, and you come under the ward consultant.

And so I have a plan devised by a ward consultant which was not recorded or communicated to Home Treatment Team. The HTT then felt that I was well enough to be discharged back to my own consultant who reviewed the plan with me (and Tom, and a HTT nurse) on Monday. He seems to be saying that the plan is sound but he will, of course, have to defer to Dr HTT’s view in the matter because he’s handed me back to them. It’s a system of flaws and cracks and holes and I don’t want to fall through them any more. I’m so scared that there will be a delay. In which case I might as well pack my hospital bag again. 

  

 

 

 

 

 

Posted in Bipolar, Crisis care, Depression, Employment and benefits, Hospital, Medication, Mental health, mental health debate, Mental health services, Mood disorder, NHS services, Psychiatry, Suicidal thought, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , , , | 16 Comments

Check in, check out

I thought maybe I wouldn’t be here by this time today.

Because today was the day.

I had a hotel room booked.

I was to leave early and be out all day under the cover of an (actual) psychology appointment and a (actual) work meeting.

I had heels and makeup in my bag because I didn’t want to stand out as scruffy in a business hotel, but didn’t want to look to smart when I left the house.

I chose a hotel in the borough of my psych hospital, just in case I didn’t succeed.

I wrote a Do Not Resuscitate advance directive, although I’m sure they don’t apply in suicide cases. But hey.

I had drafted a list of who to contact, and how, and why.

I had drafted my wishes for my funeral and burial.

I had listed all my passwords to access contacts, email, banking.

I had ranked the meds I was going to OD on by usefulness and toxicity, so I knew which order to take them in.

I was going to take them with alcohol and with other drinks I knew would increase the effect of the prescribed drugs. I would have been quite the mixicologist.

I was going to take them with ice cream, good quality ice cream, rich chocolate ice cream, something to mask the bitterness. And with Coca-cola.

I had packed my daughter’s inheritance jewellery (some items from my great grandmothers and a ring I bought when she was two for her to have when she was 18). I wanted to make sure she got them, that it was clear they were hers.

I didn’t have much to offers my son in material terms. I was going to say that my dad should give him the beautifully preserved stone hand axe that my builder great uncle found when digging foundations.

I was going to take off my wedding ring, leave it to be taken back to Tom; I am not a good wife. He made a bad investment.

I was good to go.

But I told.

I told because I have never gone so far, never made such meticulous plans. I didn’t know in the end if they were what I wanted, or a dream, or a fantasy, but it was all so detailed. I was lonely again. I couldn’t open my mouth to tell Tom. I couldn’t tell friends; they would feel obliged to take action. I have deactivated my Twitter.

Three days ago I sat on the step of a lovely hotel in a lovely part of Germany on a lovely spring day and I thought: I’m done. I’m out. I prayed, again, to a God I don’t believe in to just… take me. Take me while I could feel the sun on my face and hear the birds singing. How much better for me and for my friends and relatives if I did not have to poison or injure myself into oblivion.

I have tried and tried and tried – I was going to write this on good quality paper with my purple fountain pen – but life and I are not cut our for each other. A while back I thought that things were not really worse than in the past, just different. But over recent years it has got worse, needed more input from services. I’m back under Home Treatment and potentially facing hospital again.

I do the same things again and again not because I expect a different result but because I don’t, apparently, know how to do anything different. This is my life now.

I can’t live. But apparently I am too cowardly to die. What does that leave, I wonder?

This life is intermittent hell to the point that I spend a huge amount of time wanting to die. I was shot down on Twitter that saying that saying I would happily swap for the lives of people with ordinary lives. And yes, of course I agree – people with “ordinary lives” have their own demons to battle. But apparently saying that I think the lives of people who don’t constantly despair to the point that they actively plan or try to destroy themselves just might be preferable might be preferable to the lives of us that do was “invalidating” and “minimising” the pain of the people who aren’t… taking active steps to kill themselves.

Still trying to figure out the logic of that one.

Like I said. Go ahead. Trade. See how you like them demons.

(BTW I’m so not prepared to debate the issue on here. Comments about how awful I am in my awful minimisation and awful invalidation will be deleted. It’s my blog. Bite me.)

 

 

 

 

 

Posted in Bipolar, Crisis care, Depression, Hospital, Inpatient care, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, Suicidal thought, Suicide, Uncategorized | Tagged , , , , , , , , , | 60 Comments

Blessed or distressed? Bipolar and creativity

Bipolar people can get fed up with the whole creativity thing. There’s such an expectation that we’re all going to be “tortured geniuses” that if you don’t feel creativity is a part of your make up, you can almost feel that you are doing bipolar wrong – or at the very least that you been grievously short changed. There’s even a theory put forward (which I’ve previously mentioned here) that bipolar is some kind of genetic advantage because our creativity is needed within the gene pool.

I’m deeply suspicious of the whole “touched by fire” thing in general. Does it do us any good to analyse the diaries and works of long dead writers, artists and composers and attempt a kind of retrospective diagnosis in order to “prove” that mental health problems, particularly those like bipolar and schizophrenia, are linked to creativity?

It’s true that I write more a hell of a lot more now and have done during these past five years I’ve been so unwell. But when I was in remission I had a full time job, a social life, hobbies. My children were younger and needed more of me. I didn’t really have the time or the mental space to think about writing, and the urge just wasn’t there the way it had been earlier in my life.

Now the urge is here – and then some. Even before I left hospital I started writing about my experiences without telling anyone. I couldn’t not do it. It didn’t feel like a choice. @DawnStorey68 sent me this notebook and I bought a purple fountain pen (probably contraband for being too pointy, but meh) and starting scribbling notes into the night, unable to sleep for the shouting and religious chanting around me, feeling that I almost couldn’t be bothered to lie down and close my eyes because someone would just come along and shine a light in them anyway.

FullSizeRender

Since discharge from hospital, there has been an… outpouring. I can’t stop writing about the ward. The whole thing was so bizarre, boring, exhilarating, funny, scary, comforting, horrible… I never intended to carry on documenting my experiences, but it just keeps coming. I’ve produced 30,000 words since discharge, and that is with days off and strictly limiting myself. For me, that’s a lot.

Why limit myself? Because it’s taking me over. When I say I can’t stop, I mean it literally. I have to set time aside for writing and stick to it or I just write and write and write. When I’m not writing, ideas or thoughts about the project (and it has become a project, even thought I never intended that) pop into my head constantly. Washing up. In the bath. During yoga. On the tube or bus I’m always pulling my phone out, capturing a little section in Pages, worried I’ll forget and miss something important if I leave it until later.

My brain can’t shake the need to work on my writing. It is, quite literally, the very first thing I think of when I wake up in the morning. It pops into my head as soon as I get up to go to the loo in the night. I am on the alert even without meaning to be; things around me constantly remind me of nuggets I want to include. It’s disturbingly similar to the way my brain was preoccupied with suicide just before I went into hospital – my brain is working on the project even when I’m doing something else.

Last night I ended up going back up 50mg on the quetiapine, something I’d hoped not to do since I am trying to come off it completely. I’ve done very well in terms of symptoms so far considering I’ve dropped from 700mg to 300mg, but I just had to take some action, which I agreed with Home Treatment, because the night before had been horrendous.

I’d taken diazepam a couple of hours before bed as I was aware of being rigid with muscle tension and that I’d felt quite high in the day. I thought sleep could possibly be difficult. Difficult wasn’t the word.

As I lay in bed I felt utterly and totally overwhelmed by my own thoughts – and they were all about the writing. It was no good trying to focus on my breathing or do progressive relaxation or count back from 100 or think of my forthcoming holiday. Those measures were about as useful as putting a paper bag over my head in a monsoon. Because that’s how it felt, I felt deluged, the ideas fell and fell, rushing over me so that they roared in my ears, plastering my clothes to my skin, weighing me down. It was relentless. I was powerless. I was acutely aware of my thoughts but you just can’t let go of hard, hard rain falling on your head, running into your ears, into your eyes, into your mouth.

You can’t detach when you fear you are drowning.

More PRN meds, a candlelit bath, half an hour’s relaxation music, a mug of hot chocolate, aromatherapy, half an hour’s binaural beats… eventually something kicked in and I fell asleep in the early hours of the morning.

I thought of the writing the minute I awoke.

I have no idea how to tackle this. The extra Q helped me sleep more, and more heavily, but I think there will be more nights where my writer’s brain will not let go. I genuinely have no idea what the best course of action is. I’ve tried getting up and briefly jotting down the key notes, but when I lie back down my brain just produces more ideas. The alternative to frustrating attempts at sleep is to get up and just bloody write. But that’s more likely to build my hypomania, and it’s generally the high that comes first, then the low, then maybe mixed mood – and that’s what landed me in hospital in the first place.

Why should I carry on anyway? Is the project important? I think it is. None of what I have to say will be a surprise to anyone who’s been an inpatient, but for those of us who spend a lot of time with other service users it’s easy to forget that we are a small minority. Different studies come up with slightly different answers but the number of people admitted to a psychiatric ward is something like 3.5% per thousand or at the very most 6 per thousand. So for every 6 people who’ve share my (our) experience, there are at least another 994 who haven’t. Obviously I’m not the first to write about life on the psych ward and I know I won’t be the last but I think I can bring some kind of original voice to the table. At least I hope so, and so I feel I should carry on with it anyway.

But I don’t feel like I get any choice. And that’s the scary part.

 

Posted in Bipolar, Crisis care, Hospital, Hypomania, Inpatient care, Mania, Memoir, Mental health, Mental health services, Mindfulness, Mood disorder, NHS services, Psychiatry, Self-management, Social media, Suicidal thought, Suicide, Uncategorized | Tagged , , , , , , , , , | 16 Comments

NHS cogwheels: why should I have to grease them?

There are oodles of definitions of person-centred, or patient-centred, care – sometimes it can feel like people/organisations reinvent what they mean by these terms every time they start a new project or initiative. I’ll tell you what I mean by it:

That the person receiving the care is the main priority of staff and services. That people delivering different elements of that package of care operate as team, even if they work in different locations and for different employers, making sure it all hangs together for the benefit of the patient.

I’ll tell you what I don’t mean by it:

That the person receiving the treatment strives to make themselves the centre of their care package by identifying gaps in communication within that care package and attempting to plug them.

I’m angry today because that’s what I’ve been having to do, not just self-advocate but purely and simply carrying vital information between people/services because it has not been delivered to them in any other way. There is a clear chain of command in making and communicating the clinical decisions affecting me, but that’s completely fallen by the wayside. Yes, it’s happened to me before. Yes, it happens to other people all the time. But I’m angry about it happening here and now, because I’m having to do this during a period research shows is a highly risky time for recent psychiatric inpatients. Failing to provide correct care in the two weeks post-discharge can cost lives.

Let’s roll it back to when I was in hospital. We had a CPA review on 4th March, attended by the ward consultant, junior doctors, the ward pharmacist, and Tom. A clear plan was agreed on.

  • Start reducing the quetiapine from 700mg and eventually come off it, so drop to 600mg as of that evening and keep reducing by 100mg weekly
  • Continue until 300mg, hold there until I’ve been on holiday
  • Continue the reduction when I get back from holiday
  • Introduce aripiprozole at this point and cross taper

There. That wasn’t so hard. It took me about a minute to type. And yet someone (junior doctor who was taking the notes, perhaps) omitted to put that concise little plan on the system. All it says is: “Plan to switch from quetiapine to aripiprozole.” That’s it. No doses. No timescales.

That’s all there is.

I’m going to add a little bit in here to supplement the original post. I’ve had a couple of responses on Twitter that suggest people think what is going on here is that services have used “patient empowerment” to shift responsibility onto me, that I was put on some kind of care pathway and then left to make it work.

Nope.

Nope, nope, nope. This is not about following some badly co-produced system. There was no understanding or expectation that I should take an part in the plan’s delivery. Following the CPA meeting I wasn’t supposed  to be doing anything other than take the meds prescribed to implement the plan. I have simply picked up the pieces after realising that the ball had just been – dropped. Thoroughly dropped. From here it looks like no staff member would apparently have noticed had I not stood up and made a fuss.

I knew something was wrong on the day that I was discharged, exactly a week after the CPA meeting. The dossette boxes I was given to take away contained 600mg of quetiapine, the dose I’d been on for the past week in hospital, and didn’t take into account the agreed dose decrease to 500mg that evening. Over the weekend I ended up taking one of the 300g pills they’d given then chopping a 400mg from in my old community dossette boxes in half to make the agreed 500mg. I know you’re not supposed to do that with film coated extended release tablets but no one had supplied me with the correct dose.

Last week I had one phone conversation and three face to face meetings with Home Treatment Team nurses. Every single one of them confirmed that there was nothing on the system and made a note of what I understood the plan to be, but still no clear instruction appeared. Frustrated, I wondered if my own consultant could help. I sent a long email again explaining my understanding of the plan, stressing that nothing was on the system, and informing him exactly what medication I had left at my disposal. I asked whether he could liaise with the ward consultant to get this sorted as we were now 10 days after the plan should have been recorded. He responded to say he’d kept in touch with the ward consultant and knew of the plan.

So two consultants knew the plan, yet neither of them jotted that brief note. Helpful.

As a result I have been (metaphorically) carrying the plan with me and laying it out to every healthcare professional I’ve seen. There is no reason to disbelieve me; after all, I have been asking for less medication, not more. The HTT nurses have all agreed that it is silly to keep being given drugs that I do not need, yet but the end of last week I had 27 300mg pills. As it happens, I am not suicidal in this risky time period. But pharmacy don’t know that and now I essentially have a stockpile caused by professionals, and had I accepted a further incorrect dossette box last week I would have received a further 14.

This week the dose was supposed to be 400mg. When I pulled everything I had together I actually had a few 400mgs from my old boxes floating around, so all I needed to make up the correct doses for rest of this week was either four more 400mg tablets or four 100gm tablets to combine with 300mg. Nothing more.

That ought not to have been a problem. On the hospital drug chart I was written up for PRN (as required) 50mg and 100mg quetiapine, so the Monday and Tuesday nurses agreed with me that it was sensible to get me those low dose meds.

But hospital pharmacy appears to be very blinkered. No matter how many times the HTT nurses have said, “Please just give us the PRN 100mg tablets she’s already prescribed” the pharmacists are obsessed with what’s on the drug chart from the week before discharge. I would’ve thought that given the number of times nurses have contacted them to ask for something different they just might have called the ward pharmacist to discuss, or at least shown some curiosity about the repeated requests and tried to speak to a doctor.

But apparently not. Yesterday the HTT nurse was pleased to be able to hand over some quetiapine extended release 50mg tablets. I was expecting to be given a short PRN course, 10 tablets maybe, or 14 max. I didn’t really even need that much. Only when we looked at the label there were 84 pills and I was to take 12 at night. And then the penny dropped: in the mind of pharmacy, I must take 600mg, no matter how many pills this requires.

So here we are approaching three weeks since the meeting. The Bank Holidays looming giving me less time to sort things out. I thought I’d better go and see a GP today and find out what, if anything, primary care had been told. I wasn’t particularly hopeful and indeed they had not even been notified of my discharge. They had no record of my drugs, although my copy of the medication summary stated prescribing would now be handed over to the GP. They had no record of the lamotrigine increase. And certainly no record of any change of antipsychotic, the summary – which I took in with me, which they had never been sent – of course stubbornly sticking to a daily 600mg of quetiapine.

The GP seems on it. She took a copy of the summary document, made sure she had the right phone number for HTT, and promised to get all my other drugs ready in a dossette box ready for Thursday. Essentially she is having to trust me completely on the quetiapine front and as she said to me, “It’s lucky that you’re doing well, you simply wouldn’t have been able to do all this if you were still poorly.”

Luck. Yes. And it should never be down to luck. My job is to receive care, not to have attempt to integrate and control it. Quite frankly by this point I feel that I should bill the Trust for the time and energy required to achieve so little and I am considering a formal complaint. I have building rage against the NHS machine, whose cogs don’t fit together properly, because I’m tired of trying to grease the wheels.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Bipolar, Crisis care, GP, Hospital, Inpatient care, Medication, NHS services, Primary care, Psychiatry, Self-management, Treatment planning, Uncategorized | Tagged , , , , , , , , , | 12 Comments