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.

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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

Discharge

TW: suicidal thoughts

I was tempted to call this post “home”, but I’m not, I haven’t even set off yet. I’ve been seen by two nurses from Home Treatment Team (one of whom I know quite well) and officially taken off the hospital’s books and on to HTT’s, but as yet I am waiting for my TTOs (drugs to take away). All these bloody abbreviations! Once Tom gets here HTT want to speak to him as well, so who know how long that will take.

So I feel like I’m in a kind of limbo. I’ve been given all the things from my box in the nurses’ room – things I hadn’t been trusted with for so long I had almost forgotten they existed, such as dressing gown belts and my own purse and the diazepam a nurse took from a long ago cache in my handbag. I’ve stripped the bed except for one sheet as I don’t want to sit on the nasty wipe-clean plastic while I type this. I’ve taken down my Wall of Awesomeness where I Blu Tacked every card and photo I was sent along with every colouring picture I completed. I couldn’t begin to count the things people sent into me. Most senders are people I know from Twitter but have never met in real life, responding with the knowledge of their own inpatient stays, which certainly gave the nurses something to think about. I received poetry books, novels, cuddly toys, chocolate and other food, body lotion, shower creme, socks, lip balm, foot cream, mittens, multiple colouring books… The list goes on.

Between this and the stuff I asked Tom to bring in, along with a rather hypomanic Amazon spending spree, I’m probably leaving with more than twice as many things as I arrived with. I’m typing this on a Bluetooth wireless keyboard while looking at my phone which is in the clutches of a holder clipped to my bedside table, Amazon purchases in conjunction with the DVD box sets and craft materials I bought for the ward and much-needed silicone putty earplugs. I’ve asked Tom to bring the big holdalls and have given various things (including the Prison Break box set!) to various friends.

 

How did I come to this point after almost five weeks as an inpatient? There were a few things that made be begin to feel I should consider discharge. A biggie was sleep. The idea had been for me to spend this week and the next monitoring how I tolerated the first 100mg decrease of quetiapine (from an admission dose of 700mg) and in particular how this was affecting my sleep. Given that last time I forgot to take my Q I was up for 37 hours straight without feeling remotely tired, this was my main concern and it was agreed that I should try sleep aids such a promethazine (an antihistamine) under the controlled conditions of the ward. But then the conditions span out of control and there was nothing pseudo scientific about them at all. Living next to a woman who repeated the same four bars of a religious chant for hours, only to be replaced by a woman who screamed during the night in such an aggressive way I was afraid to come out of my room, on a corridor where a sleepless woman walked up and down talking on her phone and staff had private chats, I have no idea at all what my sleep pattern is like and whether taking different meds at different times has had any effect at all. All the disrupted sleep has also meant that I have often fallen asleep again in the mornings, missing my favourite ward activities.

Then there is the way I have begun to respond to other patients. After years in the helping professions I’ve found myself almost slipping into counselling mode with ward friends, whilst having less and less tolerance for other patients’ drama. The last few days have seen a LOT of drama, even for a triage ward – people throwing things and trying to kick the door open, staff and patients being verbally abused, sudden unexpected ward moves and escape attempts and self-discharges, manic people wearing everyone else out (yes, I know I am in no position to judge, but whatever). It’s all very tiring and the more well I become, the less I can empathise on the grounds that “we’re all poorly”.

The biggest thing I felt I had to do was to use public transport again, eventually building up to going back to That Station. So I was allowed my Freedom Pass again and did bus journeys with Tom and later a staff member, then the following weekend a short tube trip with Tom. On Wednesday two members offered to escort me to the station. The nurse who came along was very sensitive, asking me beforehand what I would like from her. Did I want her to walk ahead of me? Would it be more helpful for her to walk behind, just observing, or would I even like her to physically hold my hand? We settled on just talking on the tube and then seeing how I was doing as we neared our destination. I wasn’t sure what to expect. I thought I might feel anxious, have a panic attack even, that maybe suicidal thoughts would once again intrude – or that being so very close to home yet not being able to go there and stay there might make me very upset (I have refused the offer of home leave on these grouds).

What did I feel? None of the above. What I felt was sudden understanding of just how very unwell I had been passing through that station so often on the way to HTT or yoga in the week before my admission, how full my head had been of suicide planning and how I was constantly squeezing in one or two more ideas about the time that the fast trains passed through or about what I could take with the pills to make the overdose more effective. My God, I was ill. I genuinely don’t know what would have happened to me if I hadn’t come into hospital when I did.

During my near 5 week stay I have gone through so many feelings about the ward. Initially there was a sense of lightness and relief at no longer having to take care of myself. Next came frustration with the pace of ward life, followed more by frustration and a hefty dose of resentment at feeling that informal admission just amounted to not having been sectioned – yet. I formed such strong bonds with fellow patients and grieved when they were moved onto longer stay wards, yet celebrated other people’s discharges as they left for home with a spring in their step. I have learned to appreciate staff I wrote off when I first arrived and I am crying now at the thought of the level of kindness I have been shown, and the reflections staff have offered me in terms of how far I have come since I was first admitted.

I feel that the experience is kind of etched into my brain. Sometimes it’s been too much and I have done a lot of stuff alone in my room; coloured pictures, written, journalled, read poems and novels, practiced yoga, worked out, Skyped friends, chatted to my parents and other friends and relatives, taken a million lovely hot showers… A number of staff commented on how homely my room looked with all the cards and presents on display, and that was really important to me. If I had to be here, I wanted my surroundings to feel friendly.

So I’m going. The ward manager just came in to say goodbye, collect what I think/hope was constructive feedback on what could be improved, and give me hug and say what a lovely patient I’d been. Since I started writing this the TTOs have arrived; Tom is on his way, and after he’s spoken to the HTT nurse… that’s it. More goodbyes to patients and staff and no doubt more tears, and then home. I am expecting it to feel weird; I always feel a bit dissociated when I come back from holiday, and this has been a looooonnng holiday. I’m particularly looking forward to being reunited with my bathroom (an actual bath! Actual razors to shave my actual legs! An actual door you can close when you have a wee that no one can unlock from the outside!) and my bed. Heated under blanket, memory foam mattress, Egyptian cotton linen and a duvet. No more static crackle sheets or lumpy plastic-encased pillows.

Overall, this admission was 100% the right thing to have done. But now it’s time to start thinking about the future. The stay has given me time to think about my life, about my passions and my dreams and what kind of a life I can build from now, even within the limits of my condition. There’s a lot I want to do.

Time to move on.

Posted in Bipolar, Crisis care, Depression, exercise, Hospital, Hypomania, Inpatient care, Medication, Mental health services, Mood disorder, NHS services, Psychiatry, Rapid cycling, Social media, Suicidal thought, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , | 7 Comments

Ward and world

This isn’t going to be the most fascinating post ever, but I need to just bring the blog up to speed – especially as the last two posts may have probably seemed pretty alarming.

I’m OK. Is the bottom line. My mood has been much more steady, albeit slightly high (it’s been hard not to write, write, write all night, night, night and I’ve been a little physically agitated). No thoughts of suicide or absconding or anything horrible or sneaky at all, really.

And I have a pencilled-in date for my discharge: two weeks today.

My CPA meeting (care plan review) was this morning and went as well as I could have hoped. All the points I’ve been making to staff had been taken into consideration: my need to travel around London safely by myself; my total terror (justified or not) at the plan to move wards, something it is agreed can be shelved if I am only here for another couple of weeks; my desire to begin implementing ideas about meds developed with the pharmacist.

It was in that pharmacy 1:1 that I finally realised I wanted quick fixes to my medication problems, but there are none. I’m on a lot of quetiapine and it will take a long time the come off it. I also realised that I was looking to switch to the perfect drug, but there is none. I tried therefore to open my mind exceptionally wide and actually consider all the options, even ones I have previously  rejected. And so I’m going to try the one drug I’ve always said an outright “no” to, aripiprozole. I need something that doesn’t elevate prolactin levels – I’ve already had the whole leaky boobs thing when starting/increasing quetiapine which has been demonstrated NOT to elevate prolactin levels, so forget about ones that do. And whatever I take must, must, must be weight neutral. The pharmacist did make a case for olanzapine but as it’s worse than Q for weight gain my answer was, if you’ll pardon the expression, a big fat no.

I’ve heard/read a lot of negative stuff about aripiprozole. Like I said, the idea scared me for a long time but I can’t carry on with drugs that give me physical problems related to metabolism/weight whilst not even controlling symptoms. I have to do something really different. This doesn’t mean I’m not anxious; I know aripiprozole makes many people agitated and I am really worried about that. So we can take it as read I know a lot of people will be thinking that I’ve made a bad choice, but I’d ask that you respect that choice and not bombard me with more scare stories.

But that’s all weeks away. We’re starting today with an immediate reduction of quetiapine. It’ll take weeks to come down to even half dose, at which point the aripiprozole can be slowly commenced so that the two cross taper. I have a lot worries. Will I get withdrawal symptoms as the Q is slowly reduced? Will I be able to sleep? Last time I forgot a dose I was awake for 37 hours without a glimmer of fatigue. Phasing Q out may well may mean phasing in hypnotics or antihistamines in, at least at the beginning. Will I feel physically unwell? Will I totally lose my shit and become psychotic?

So some decisions have been made but now we’re just onto the next layer of complexity and there’s a lot to take on board. As you’ve probably read, when I was first admitted I felt very ambivalent. I was very reluctant to take myself out of the community, out of my life, even though I knew that was what was needed to be safe. For most of the time I’ve dealt with homesickness by pretty much pretending home doesn’t exist, other than a place from which Tom can magic yoga blocks and thicker socks and my spare pair of glasses. Holding ward and world in my head has felt impossible and I have told staff that I don’t think I can handle home leave. I think going home then having to come back would break me.

I’ve been making sure to go out more, trying to bridge the gap, mostly with Tom and once, yesterday, with a staff member. Sometimes being out feels quite normal but I often become overwhelmed. My brain’s just not used to all the visual and audible “chatter” and I find I need quiet time alone afterwards. Today we went for brunch after the CPA meeting but I really struggled when I returned to the ward, aware of the shifting ward/world tensions and that I don’t know how the hold them.

I’m due tomorrow go out again with Tom as I don’t really have many clothes that fit properly, something that will matter more the more I go out, or any money to buy them myself. The idea is we take a little tube trip, two birds, one stone kind of thing.

To be honest, I don’t really want a gradual change from ward to community. I’m already finding the transition stressful. I want to be all in, or all out.

Posted in Crisis care, Hospital, Inpatient care, Medication, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, Psychosis, Treatment planning | Tagged , , , , , , , , , | 14 Comments

Hotel California

Am I ill?

This question is so much on my mind. I came into hospital because I was having detailed suicidal thoughts and almost took my own life, but at my core I still don’t believe that in the face of what I have lived through that is so unreasonable. Some part of me didn’t want to die though, or I wouldn’t have called for help that Friday. Or maybe as I’ve said before, I simply decided voluntary admission was preferable to involvement of the emergency services and detention under the Mental Health Act.

When you arrive as an informal patient you’re told that you can leave at any time, but as the wife of someone with detailed knowledge of the MHA I’ve always known that’s not strictly true. If the risk levels are high, staff aren’t going to just let you waltz out of the door with all your possessions. I doubt most informal patients are aware of the limited powers of nurses to detain a person at risk until they can be formally “sectioned”. Last time I discussed my informal status with the doctors I was deemed not sectionable but I’ve always been very aware of how quickly that can change.

My distress has eased over the past few days. This morning I had a hefty dose of bog standard depression, but this is something I at least know how to deal with (if hiding in bed all morning missing breakfast and gym equates to “dealing”). I think the fluctuations are much smaller and less frequent now; I also think I’m kind of bottoming out into low mood. I guess that makes sense since another blood test has show my levels of lamotrigine are lower than they should be. We can go ahead with the increase starting tomorrow morning.

A few days ago that was the treatment holy grail. Now I feel pretty meh about it. I just don’t feel ill. Well, a little bit maybe, but nothing I haven’t weathered a million times before. I know I am having a lot of very dangerous thoughts, although I conceive of them as dangerous only in that they would have mega repercussions if I was found out/located. All that escapology stuff for example. I have the chance to get the big med change I’ve wanted for a very long time, yet I seem to seek self-sabotage.

As ever when I get a case of The Sneakies, part of me wants to stop but the planning escalates and becomes ever more devious. I managed to say a bit of this to a nice nurse, a kind of warning that they think I am a pleasant lady and therefore a compliant patient, but I’m not. I am devious and always looking to exploit any cracks in the system. Nice Nurse was there when I was called to speak to the doctors they had been given an idea of my mindset. I told them I have been thinking that maybe there is nothing in here that I need, that I could discharge myself and just go home and sleep off the depression and forget about the whole med change crapola.

Except… You know what’ll happen if you try to leave, right? Asked Beardy Doc. Yup. As my friend Bunny put it: Hotel California. As an informal I can check out any time I like. With ideas like these I can never leave.

Such stupidity, all this self-sabotage; why? Why am I compelled to behave in ways that have increased the likelihood of being sectioned and stuck on 1:1 obs (observations) with a nurse tailing me everywhere and sitting in my doorway as I sleep? Abscond and I could end up on a different ward with tighter security after being pulled out the back of a police van.

Sectioned, even on a 28 day s2, I miss chances to spend time with my children. I just spoke to my daughter, who is a treasure and a delight as ever. Why would I want to spend even less time with her than I can as an informal? I’d be away from Tom and home for a whole month on top of the 2.5 weeks I’ve been in. I’d lose out on brilliant work opportunities. I risk not being in the community for our much-anticipated holiday to Germany.

So why the fuck would I want to do anything that could lead to all that? Why can’t I stop? I’m crossing little lines here and there, but little lines add up. I can’t stop. But I don’t feel ill. Except sometimes I know these thoughts are the thoughts of a crazy person. And I’m now more unwell in the eyes of staff.

I don’t know what to think/believe anymore.

 

 

Posted in Bipolar, Crisis care, Depression, Family issues, Hospital, Inpatient care, Medication, Mental health services, Mood disorder, NHS services, Psychiatry, Suicidal thought, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , | 14 Comments