A disappointment

Rome wasn’t built in a day.

Baby steps.

Recovery is never linear.

Two steps forward, one step back.

It’s just a setback

Everyone has wobbles

Yeah. Only up until now entering remission had felt so straightforward that I had genuinely begun to feel that it would stay that way, that for the first time since 2010 I would be actually well.

I started the lurasidone in September; things quickly began to improve. I became established on it and was more stable than in a long, long time. There was still a lot of healing to do and a lot of confidence to be regained, but I believed I could maintain some sort of momentum. By early October I had a plan, an actual written plan, of what I wanted to do in order to gradually widen my circle of activities and people in order to eventually get back to work.

I joined a gym and began to really enjoy exercise more. I started to lose a significant  amount of the quetiapine weight and felt good about that. I cleaned up my diet, cut down on sugar and caffeine and gave up alcohol. I went back to choir to a really warm welcome, and felt dangerously close to actually completing a term and singing in a concert. I started to be able to go out and about locally, although problems with using the tube meant that I couldn’t go any further. But I would tackle that.

And so I took a couple of tube journeys to the CMHT (ten minutes) and it was OK. It was a bit scary waiting on the platform at That Station, but I managed. I went on a longer trip in the suburbs with Tom. After I wrote my last post I really wanted to try going in central London a try, as I knew it was holding me back from becoming work ready, so I arranged to meet a lovely friend in Zone 1. I picked a time outside rush hour. I picked a straightforward journey on a familiar route with only one change. And yet it was awful.

I cried on and off the whole way. Maybe I should’ve just got off, crossed to the other platform and gone home. But my friend was coming from outside London and I hadn’t seen her in a very long time, so I pushed on. I was slightly early and as I waited for her in the ticket hall at Green Park station I went into full meltdown mode. I didn’t care who saw how much I was crying or how badly my hands were shaking, because there was nowhere to go where people wouldn’t see me. I might as well cry in the ticket hall as on the street or in M&S.

Yes, it was lovely to see my friend and I did enjoy spending time with her. But I was dipping in and out of wobbles over lunch and cried all the way back, arriving at home exhausted and wishing that I hadn’t even tried.

It was such a disappointment.

I have no way of knowing whether I coped so badly because I was becoming low, or whether the experience triggered a new burst of low mood. Whatever the order of events, a week later I can’t stop crying. I am unable to resist going back to bed in the day, and once I’m in, I struggle to get out. I’m back to being unable to take the tube without becoming distressed and have to go to appointments via three buses each way. Basic tasks seem to have become incredibly difficult. I am assailed by apathy, doing things not because I want to but because I suppose I should. I am living on sugar because eating healthily seems just too hard.

I feel like such a disappointment.

I was doing so well that I felt like a kind of teacher’s pet at the CMHT, that I had created the expectation of being an ongoing success story. I feel like I am letting my care co-ordinator and consultant down by being unable to maintain progress. I feel that I am letting my psychologist down even though we recently finished therapy, because she put in her report that she had watched me “blossom”, and now I am not. I even feel like I am letting my physiotherapist down because I can’t find it in me to do the exercises I know will help my injured foot.

I have worked so hard to stay well but I am in a vicious cycle where every time I don’t do the things I had put in place to keep well I hate myself, and the self-hatred feeds into the low mood. Every can of Coke, every abandoned physio exercise, every missed Apple Watch target, every skipped choir rehearsal. I can’t understand why I can’t do the things I could do a week ago.

Above all, I was proud of myself for being able to give Tom a break from the relentless grind of having to care for me. I feel so disappointed that he will be exposed to depression yet again. I don’t even know how to tell him exactly how things are; I’l probably have to get his to read this, because I don’t know how I can articulate the shame of it. Of course on the scale of destruction this mood state in relatively minor. But he must think – as do I – here we go again. And both our hearts will sink.

 

 

 

 

 

 

Posted in Bipolar, Depression, Employment and benefits, exercise, Mental health, Mental health services, Mood disorder, Psychiatry, psychology, Self-management, Treatment planning | Tagged , , , , , , , ,

Fitness for work – the real life questions the system never asks

So I filled in an ESA50 last week and was reminded afresh what a terrible form it is.

Yes, we all know it’s terrible, a terrible form for a terrible benefit in a terrible system. It’s not designed to be helpful and it’s not designed to be fair. But I can’t help thinking: imagine if this form were made so that the questions actually focused on what you have to do in order to hold down a job? 

I’m at risk of not passing Work Capability Assessment because I’m not so desperately ill as I was and the bar is very high, so I might be seen as fit for work simply by virtue of not currently being under the wheels of a train. I have a fluctuating condition, so I have to choose the “it varies” option most of the time, and my enduring memory my last WCA is that a verbal “it depends” irritates assessors as it isn’t tidy.

Unfortunately when it comes to deciding when to go back to work it’s just the DWP and me, and they don’t really know what to do with self-employed people. I’m not a “jobseeker”, but I don’t have an employer. I don’t need support to find work, but I don’t have a manager or occupational health department to help me. When I can’t work, I claim. When I can work, I stop claiming. This isn’t tidy either, and seems an unending source of puzzlement to call handlers and Jobcentre staff.

So I have to be my own HR advisor and review the evidence. Am I work ready? Is a return practical? I’m going to take the radical approach of making my questions directly related to work!

 

Can I get up in time for work?
Probably not. Sudden antipsychotic sedation means I forget to set alarms. Sleep-wise, lurasidone is the gift that keeps on giving, because once the sedation wears off a couple of hours later, the relentless insomnia kicks in. Despite zonking out at 10pm I only get into good sleep around 7am, so I don’t trust myself to hear an alarm anyway. Getting to medical appointments for 11am is doable, but 10am’s a massive struggle. To be at a work thing for 8.30am would mean getting up 6.30am, and that simply doesn’t feel possible at the moment.

Can I get to work?

There’s a question on the ESA50 section on going out which is somewhat sensible as far as it goes, since it asks about known and unknown destinations, travelling alone or accompanied. But it doesn’t ask the central question around fitness to work: can someone actually get there?

For me, it depends (sorry). I can’t work from home all the time because I have external commitments like meetings, conferences, training, research interviews, etc. Travelling within a short distance of home feels OK, but almost all my work is central London or outside the capital.

I haven’t taken public transport in rush hour for months so have no idea how I’d cope with the crush. Then there’s the issue of prior suicidal behaviour. Buses are fine but I’ve been avoiding the tube since I was last hospitalised in July. Standing on the platform while fast trains whizz by is distressing and I can’t use national rail at all.

I have no real idea how long it’s been since I was in central London. Four months? Five? It was an ordeal then – too many people, noise, mental stimulation – and lately I have become more reclusive. Tube travel into Zone 1 is the big thing I would have to crack before being able to work, and until I can manage national rail I won’t be able to go to events elsewhere, which really limits opportunities.

Can I attend work promptly and reliably?

I genuinely have dreams where I’m offered an interesting job but remember that I can’t guarantee to be at my desk. It wouldn’t matter how part time it was or whether I picked my own days, I just can’t say that I will be there when I should be. Hell, I don’t even sign up for the choir tea rota, conscious of the possibility that I could be suddenly unable to follow through (true fact).

Just because I don’t have a workplace doesn’t mean I don’t have to be reliable. Freelancers still need to turn up to external events as necessary. Even when at home I still need to be ready and present for calls, teleconferences, Skype meetings, important emails. No show, no payment.

Can I cope with change?

This is the remit of Q14 of the ESA50, but it only deals with “small changes in your daily routine” and many work changes are far from small. Even cancelled or rescheduled meetings throw me, and the projects I work with can be quite fluid and hit an impasse or never pass proposal stage. I struggle hugely with changes in project leader. Even if I could take the tube, route changes because of delays would be scary for me. Maybe some days I could cope with that, but on others I’d be a wreck, because it… depends. I don’t have enough resilience yet.

Can I concentrate at work?

 It’s pretty easy to reel off a list of work tasks that are really hard when you can’t concentrate. I’m struggling with dates and times. I’d have to be able to juggle multiple projects again, sustain focus throughout meetings, remember the names of training participants (and judging by the length of this blog, I would also have trouble meeting word limits).

Mental health conditions are rife with concentration-suckers, from the fog of a sedated or depressed brain, to the flighty mind of hypomania or the intrusive thoughts of anxiety. Even when my moods are quite steady exhaustion from persistent insomnia and anxiety about getting things wrong are leading to an absolutely marvellous Catch-22 whereby I get things wrong and feel tired and anxious. Just this week I managed to lose a spreadsheet vital for my tax return, yay me.

Can I behave in an “appropriate” way at work?

Q17 on social situations is useful to a degree. I have issues around appropriate behaviour, most obviously when hypomanic, but psychotic stuff is a problem too and I can’t engage when I am very depressed. Guess what guys, it depends.

But there’s much more to being seen as “appropriate” at work, a lot of which disadvantages people with mental health issues or ASDs. If I’m out of home (or on a video call) I need to scrub up, put on my unofficial uniform, brush my hair, put on a bit of makeup. I may well need to be social over lunch or at a team meal. I’m often in meetings where we do the “go round the room and share” thing. I might be able to do those things today. Next week, I might not.

Can I make sure I am paid?

Sorry, DWP, but most of us aren’t going to want to work just to get ourselves of your books. We work to get paid and the landscape of work these days involves myriad ways for people to not get what they are due.

Me, I have to bid. This requires confidence, if not downright chutzpah. My current view of my skills and talents is low, so I’m not swimming in chutzpah. Then I have to have the organisational skills and memory to invoice, and know exactly what I am invoicing for and for how much. Since I just lost that spreadsheet I’m not particularly secure on this. If payment doesn’t show, I need to have the assertiveness and communication skills to chase, something I hate even when well.

 

So am I ready to go back to work? 

No… but getting there. I will get back in that saddle, but it’s going to require more time and more patience with myself. At least writing this post has made me more aware of the remaining – and very real – barriers that need to be tackled in order for me to get up, get ready, get to work, do the job and get paid for it.

I’m making a very tentative plan involving looking up previous work contacts, seeing if there could be any projects which are more home-based, taking baby steps on the travel front. As far as sleep goes I have to just hang on in there and hope I adjust, because neither my consultant nor I want to throw more drugs into the mix.

What I really need is a way to gently but steadily push forward with my own phased return, but I have the sinking feeling that I am entering a twilight zone whereby my own assessment based on my knowledge of my condition, treatment and job is that I am not well enough to launch back into employment and earn my own money, but the DWP’s uninformed assessment is that I am not ill enough to deserve theirs.

There’s a lot of talk right now about possible reforms to ESA and the offer of “tailored support”. But until the DWP applies real-world questions in assessing work capability sick and disabled people will be told every day that they are totally fit to do jobs that simply can’t exist, or that because they can do actual jobs one day a month they can do them every day. You’re either in, or you’re out. There is no “it depends”.

 

Posted in Employment and benefits, Mental health, mental health debate, Mood disorder, Politics and current affairs, Stigma and discrimination, Uncategorized | Tagged , , , , , , , , , , , , , , , , , ,

What do you know, I was there all along

*TW: Although this a positive positive post, it makes graphic reference to past experience of overdose*

I am reticent about sharing the good things. I’m more superstitious than I let on, and I constantly worry about jinxing my run of luck by talking about it. But I feel well. In fact I feel not just well, I feel… normal. As in not just relatively well, but actually not experiencing symptoms. I’m still struggling with anxiety, but other than that it feels like something clicked and feel into place and the nightmare is over. That’s probably wrong, I’m probably being completely unrealistic, but all I can tell you is that’s how it feels.

People are asking what I put it down to. I don’t know. I assume it’s a combination of my shiny expensive new antipsychotic (lurasidone), months of therapy and a lot of luck. Some people have pointed out that I am doing a lot of things to keep myself well, but I’ve done all those things before time and time again without this degree of success. Tom speculates that I have been replaced by aliens. What have they done with poorly Charlotte? She would never be up before seven! Poorly Charlotte would never use phrases like, “Off you go, I’m fine”, “I’m running out of things to talk about in therapy” and “nothing is insurmountable”!

The change in mood has given me a radical shift in perspective. Suddenly I am able to look at my suicide plans, so long a source of obsession, even comfort, with a more objective eye. The daughter of a friend of Tom’s recently took her life and suddenly I saw the impact through the eyes of her family. No matter how much I knew that my death would have an devastating impact on those close to me, it wasn’t something I’d been able to really feel in recent years. This uncomfortable reality check made me extremely panicky, but was an important moment.

My lamotrigine pills are large and seem to come in rather ridiculous shapes that are simply not the shape of a human throat (one brand is a diamond, another is a shield) so although I’m a pretty competent pill-swallower, I struggle to get these down. Often they begin to disintegrate as they go. This happened yesterday and the bitter taste gave me something like a flashback, certainly something much more visceral and experiential than a simple memory, of exactly how it felt when I OD’d years ago. Not the taking of the pills, not the days spent on a drip trying to fend off liver damage, but the time in A&E when I there was nothing left to come up yet I stuck my fingers down my throat again and again, scratching the membranes at the back, because of the intolerable nausea. The way I felt like an animal, talked about not spoken to, stuck and prodded, puking on the floor as my parents and ex stood over me.

Oh wow, I thought. Yes. I remember now. That is what it would really be like. Not my cosy, comforting fantasy of an anonymous death in an anonymous hotel room. Why would I want to do that to myself?

I am not thinking like poorly Charlotte any more.

Of course it’s important to remember that I’m probably not as well as I feel. I’m signed off, and that’s because I’m really not work ready, cognitively and because I still can’t face That Station so I can’t feasibly take the tube or train to stuff in London. I’m only 3 weeks into the lurasidone. I’m only a month out hospital. You don’t just get over a year of prodromal symptoms, five years of active symptoms, the loss of your profession, two bouts of therapy, genuinely countless Home Treatment stints for suicidal thoughts and behaviour, assessment by a national specialist team, two hospitalisations, any number of failed care plans, and trials of six major psych meds in a the blink of an eye. But I feel like it’s time to move on.

I’ve written before about how I have tended to identify as being bipolar, rather that having bipolar, of feeling that it and I were indivisible. But the accumulation of all of this – especially this past year, when I have spent just a few weeks not in crisis care or hospital – has changed my perspective. Bipolar has become something was wrapped around me, choking me, like ivy that eventually kills off the tree that’s been hosting it. I’ve kind of backed away from being @BipolarBlogger for now, partially because Twitter’s become a nasty place in recent months, but mainly because I don’t feel like being totally wrapped up in mental health stuff all the time. I don’t know if I’ll go back to that identity, but for now I’m happier just being me.

And the predominant feeling now is now one of being me, of having got myself back. What do you know, underneath all the shit and the pain and the trauma, I was there all along.

Posted in Bipolar, Crisis care, Hospital, Medication, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, psychology, Recovery, Self-management, Social media, Suicidal thought, Suicide, Therapy, Treatment planning, Uncategorized | Tagged , , , , , , , , , | 5 Comments

Not all hypos are equal: when things get nasty

When I was discharged from hospital a couple of weeks ago I thought it would take me a long time to recover from the experience. I was actually quite shocked by the depth of my own pain; I’ve been experiencing low mood since I was 12, but this was above and beyond (or below and beyond). I was prepared to have to look after myself very gently and carefully for several weeks. I saw Dr HTT two days after discharge and he commented in a kind, human way that I seemed “thoroughly miserable” with my life.

The plan had been to start me on a new antipsychotic, but bearing in mind how depressed I had been for so much of the year Dr HTT wondered if it was time to consider something to lift my mood. The next step then was to think about an antidepressant. I had a week to mull it over and get back to him.

And then I went high.

I was totally unprepared for this. It never entered my head for a moment that it might happen. And I really reached the upper reaches of hypomania, about as high as I get – about as high, probably, someone can get without been in true mania.

It wasn’t even a nice high. “The highs must be great!” is something I hear a lot and the answer is, well, mainly. But not all hypomanias are equal. They all involve elevated mood – emotional arousal, agitation, huge surges in energy, insomnia. But not all of them are happy (elated). I’ve had elevated moods that were characterised by sheer panic and fear. Mostly however if I am having an unpleasant high it will be an “irritable” one. I used quotes because that’s how it’s referred to in books, but actually that “irritability” is more like anger or aggression. Rage, even.

I felt bitter about that. After all the distress I’d experienced so far this year, if I was going to have a high I wanted it to be an elated one, thanks. I wanted to feel at one with the universe. I wanted to feel sexy. I wanted to be super productive. I wanted to see beauty in everything. I wanted to love all the people.

Instead, what I mostly did was hate all the people. OK, not all the people. I didn’t hate my nearest and dearest. But the day after I saw Dr HTT my first thought on waking was, “Uh-oh, I’m going high” and within three hours I was verbally abusing a nurse and a social worker from Home Treatment Team. I arrived quite bouncy, but their insistence that I wasn’t hypomanic planted a little seed of irritation that instantly began to grow into something more. It wasn’t long before their earnest little faces began to really annoy me. I told them so, and they took it fairly calmly, but that anger was swelling and swelling and I began to feel like I couldn’t keep my frustration and disdain in check.

Things came to a head when I realised that the SW didn’t even understand what bipolar was (“I do know that people who have bipolar can have other conditions on top, like depression”) and I lost it. I can’t remember what I said at that point but I know I yelled, I know I was talking (shouting) very fast and I know I slammed the door as I left, saying, “You want to know what hypomania is? This is fucking it.”

I walked to the main door. It’s the “push button to exit” kind; you can let yourself out but then you can’t let yourself back in. Hand on the button, I paused. No, I thought. I’m going to go back in and have another fucking round.

I banged the treatment room door open. They were still sitting there, probably waiting until I was well out of the way before passing through reception, undoubtedly discussing me.

There is a real sense of being out of control when I’m in this type of high. There’s a kind of pressure from within. The words come pouring out. It’s unstoppable. Mouth opens and out it comes, way before brain has time think up the horrible things to say. Part of me hovers above myself, looking down, hearing myself say the same things I always say in this state, unable to reel myself back in. Cringing. Mostly, though, I feel totally justified.

What happened at this point was me expanding on my prior diatribe and stopping any response by shouting, “No! Nnnnnnnnnnno! Nu-nu-nu-nu-nu-nu no, I’m talking, DON’T TALK, you don’t get to talk, I’m speaking, I AM SPEAKING, nu-nu-nu-nu-nu-nu no, OK???”

The main focus of my wrath was the social worker. “You!” I shouted, “What’s your name?” As far as I can remember, the rest of it went something like this, but I am paraphrasing. “Right, Bethany, I don’t ever want to see you again. You hear me? Don’t even think about coming down here until you’ve educated yourself. If you don’t know what you’re talking about, don’t fucking bother. You need to EDUCATE yourself. ED-U-CATE YOURSELF. Don’t come back to me until you’ve read a fucking book. You-” (I turned to the nurse) “you’re all right, but you, fucking educate yourself.”

At this point the nurse stood up and blocked the space between me and Bethany, moving me towards the door in a “let’s get this aggressive person out of the treatment room” kind of a way and saying, “Charlotte, I don’t think we shout be shouting at each other.”

“I’m not shouting at you, I’m shouting at her. Now I suppose you’re going to say you won’t see me on Monday.”

“No, Charlotte, we wouldn’t do that. We’ll see you on Monday.” And I was kind of…gently pushed out of the room.

My daughter was arriving to stay for a few nights. She’s 16 now, she’s seen me in aggressive hypo mode a few times, but I really didn’t want to be that way around her again. We went to the cinema and I kept it together really well but on the bus home there was somebody behaving ridiculously – late getting off, blocking the stairs, holding the bus up, laughing about it, then berating some poor guy who was just trying to get up to the top deck.

I squeezed daughter’s hand muttering, “Don’t say anything, don’t say anything, don’t say anything, OH FUCK OFF!” Tom turned round in his seat and shushed me. The woman said something in response and I yelled back, “WELL, WHAT THE FUCK’S HE SUPPOSED TO DO??”

“Shh!” said Tom again. “You’re only saying what everyone’s thinking, but you don’t have to say it!” and I stared out of the window and cried because I was so frustrated.

My hypomanic insomnia at this point pretty much involved lying awake thinking deeply angry thoughts about people I felt had wronged me. It was all tremendously self-righteous. Over the next few nights I directed a lot of mental anger at Bethany (if that was even her name, having made a big thing out of it I had kind of forgotten by then), feeling very sanctimonious. I thought about the aggressive woman who had been on the ward with me. At the time I’d been scared but now I kept thinking stuff like, “If I have to go back and she’s still there, I tell you what, I’m going to fucking knock her out.” I thought about those people on Twitter who had said I lacked compassion for the aggressive lady without even considering that sometimes I might be an aggressive piece of work myself.

That level of intensity lasted for a couple more days, and it did become more positive in that the flavour was one of elation, but it still wasn’t a nice elation. It was being happy in an unpleasant way. Colours were incredibly bright and beautiful, but hurt my eyes. I was preoccupied with sex in a way that was a tiresome even to me. I did love everyone and everything, but kind of desperately, exhaustingly.

Even then I wasn’t feeling the level of remorse that I should (and now do). I believe that in fact I am a compassionate person, but I remained grandiose and felt infallible.

It was in this state that I saw Dr HTT again and we decided that perhaps…

Perhaps my mood didn’t need elevating after all.

 

Posted in Bipolar, Hypomania, Mania, Medication, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, Rapid cycling, Social media, Uncategorized | Tagged , , , , , , , , , , , , , , ,

What she was thinking of

 

I know I want to jump.

I don’t know if I want to die.

I feel compelled.

I think I might need to be in hospital.

I think there might be nothing wrong with me.

I am out of Home Treatment for only 8 days before they are sourcing a bed for me.

The next day I am in hospital. I am in a different room but it looks the same as last time.

I’m not sure if I am all that ill. I think I might be a fraud.

The agitation begins to morph into an intense pain, a childbirth of emotion.

I have made a massive mistake. I beg to home.

No one will let me go home.

Please, nurse, please. Please let me go home. I am howling. I don’t care who hears me. She looks stricken.

It will be OK. You know the first few days are the hardest.

Yes, but I’m lonely. I’m so lonely. There are two men here for every woman. Two of the women will not/cannot speak. The other two are going home in three days. I am so alone.

Please let me go home, doctor.

You know what will happen if you try.

The two women cling on the face of discharge. I grow to care about them deeply. They are suffering greatly not just from mental health problems but from complex mixes of domestic violence, bereavement issues, drug problems, caring responsibilities. I find myself wanting to help them, knowing I am slipping into my historical “helping” role.

The staff warn me against this. Tom warns me against it.

I am supposed to focus on myself.

I try not to call Tom before work every day, although my very worst times are from 5.30am until I can get some diazepam at 8.30am. I it would be selfish, sending him off to work worried sick about me.

I crack. Please, Tom, please come and rescue me.

Darling, I am trying to rescue you, just in a different way.

All I can do is try to take my life in here. I try hoard my lithium. I am so angry that I fail. I hate them all, I hate my favourite nurse, I don’t want to be talked to or touched. I sleep in the shower because I don’t want anyone to look at me through the door.

My mind races.

I tell the nurses that if they don’t let me out I will abscond, that being out in London on my own with only my battery-depleted phone in my flip flops will place me at greater risk than simply just letting me go home.

Now I am not allowed out with nurses.

I watch the door. I try to get away when I’m being escorted back from fitness group on another ward but the escort is too canny. The next day I stand by the nurses’ desk, looking from the open door (it shouldn’t be open, not at all)  to my slightly sprained ankle in its flimsy purple flip flop. I don’t know if I can even make it down the stairs. I hesitate too long.

I throw myself against the frustrations of not being sectioned, yet not being free. Some crazed part of me kind of wishes I actually was sectioned so I would not have to constantly throw myself against uncertain boundaries. If it it’s going to happen, put me out of my fucking misery then. Just do it and get it out of the fucking way.

For this I am accused on Twitter of seeing being sectioned as a badge of honour, of wanting to add sectioning to my “bucket list”. I block people but it hurts, this wilful misunderstanding of a person in such distress.

The childbirth lessens but the afterpains twinge on.

I have one friend. Just one. She sleeps most of the day. The activities are not well organised. I am very alone.

My psychologist comes to visit. It takes every ounce of my will not to beg her to take her with me when she leaves. She cautions me about spending too much of my time and energy trying to help other people. As she leaves she sees me rubbing my friend’s back as she sobs at the nurses’ desk, bent double in her hospital PJs.

I draw up a manifesto in purple fountain pen. I will do anything to go home. Anything. I will take cabs back and forth to Home Treatment Team. I will place a tracker on my phone so it will ping Tom when I arrive at HTT and home again. Tom will manage a my medicines. I will call HTT in the afternoon after seeing them in the morning.

I will do anything, take anything. Anything. I tell the ward consultant and the pharmacist that I would drink a pint of Fairy Liquid at the point if they told me it would ease my pain. A drug is agreed upon.

The drug is too new to prescribe just like that. It is too expensive. It is not licensed for bipolar. The ward pharmacist cannot OK it. His boss cannot OK it. It has to be his boss’s boss. We have to wait.

The pains swells again. The anxiety swells.

I cannot manage the pains because I only know how to do that at home. I cannot utilise baths, aromatherapy, quiet, sleeping undisturbed, feeding myself comforting (and nutritious) foods, making a nest on the sofa, taking meds when it suits me, watching films on wifi, Skyping dear friends.

I know how to manage depression at home because I have been doing it for 30 years. Still no one is willing to let me go. I have to hang on for the new drug, get established. I promise that I will try.

A woman is admitted who is clearly unwell and incredibly aggressive. Every attempt at friendliness or comfort at results in more shouting, more profanity. I am terrified of her behaviour. Other, more timid women, are also terrified of her. We hide around the corner trying to avoid becoming her target as she walks by. It is hard to sleep along the women’s corridor because the yelling and the swearing and the stamping goes on all night.

Other people tell me that it is hard to sleep at the men’s end of the ward as well because she hurls abuse at the staff in the main ward all night. The ward feels dominated by anger and fear. Other women go to the desk and ask for this patient to be moved.

I cannot eat in the dining room under the constant barrage of hostility. My throat closes up. I start eating whatever I have to hand in my room.

For expressing my exhaustion and fear and overwhelming anxiety over the situation I am accused on Twitter of lacking all compassion for this woman. Or perhaps for all other patients. Or maybe for all people, who the fuck know any more.

I am told that hospital is for sick people and that clearly I am not sick and should just go home. It is implied that I am a wannabe, a princess playing at psych wards. It is implied that there is only one way to be sick. I am greatly offended, not just on my own behalf, but on behalf of all the vulnerable patients on the ward who have OCD, selective mutism, PTSD or “only” depression or anxiety, people who are psychotic yet timid. None of us, by the standards of my Twitter attackers, are properly ill. My concern for them does not count.

I shake as I stand at the hatch waiting for drugs. I shake with fear, with distress, with horror at having been so lonely, at having been in agony, at not knowing if and when the new drug will be authorised, and having been de facto detained, and at having been kicked and viciously kicked by Twitter people when I was already so, so down.

There is no news on the new drug.

The staff beg me to stay. They are still worried about the risk I present to myself, about the fact that I am not started on the new med. They believe I am still very sick. They also recognise that I cannot cope on the ward. They try to persuade me to move to another ward to stay safe and get started on the wonder drug but I can’t see how starting the process of loneliness all over again will help, nor indeed adding yet another consultant into the mix.

I come home feeling traumatised by the rapid decline and the pain and the admission. I don’t use the word lightly, and I will not let anyone tell me that I do not have the right to be traumatised by these past two weeks. It is of some comfort that Home Treatment Team seem shocked at how awful the past fortnight has been. I feel that it will take me a long time to recover. I am scared that if I could deteriorate so fast once, it could happen again.

I arrive home still with no word as to whether or when the new drug will be authorised.

I come home and I mothball my Twitter account.

 

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Posted in Anxiety, Bipolar, Crisis care, Depression, Hospital, Inpatient care, Medication, Mental health, Mood disorder, NHS services, Psychiatry, psychology, Social media, Suicidal thought, Suicide, Therapy, Treatment planning, Uncategorized | Tagged , , , , , , , , , ,

Choose your own misadventure

**TW: suicide, including methods**

I’m aware that misadventure isn’t the correct terms here; it means something that happens to befall you. The things that might befall me aren’t happenstance, or bad luck, but what else can I say? Am I choosing my own demise? Not exactly. And I choosing my own life? Definitely not.

Unless you are of a certain age, you probably don’t remember “choose your own adventure” books. It was a simple enough concept. At various points in the narrative, the reader was given choices, and how the story continued from there depended on the choices made. So if you entered the castle, you could choose to open the heavy wooden door in front of you, in which case you would turn to page 61 or whatever. Or you could opt to go up the worn stone staircase, which necessitated turning to page 97.

This week I am constantly aware of choices, of forks in the road.

The hand that, as I described, hovered over the dossette box a couple of days ago. Should I have just taken the lithium? Should I have secreted it? I turned to the page for the option “leave it where it is” but I could easily have flipped to a different page.

Before I left for therapy this morning, I looked at the very long lightening cable I use in the living room and I remembered that it was of course taken away from me in hospital. I had the thought – and I have never had this thought before – that I had a choice as to whether to play with it or not, to see whether it was even feasible to make a usable ligature. I chose not to. Not at this moment.

When I was coming home from seeing the psychologist I got off the Tube at That Station. I felt a pull towards going over the bridge, just to see if the huge bloody fence has really been put up where I think it is, just to check that jumping there really isn’t an option any more. That’s what I did just before I went into hospital, went over that bridge, a bridge I had no business crossing. Near the ticket barriers today I was aware that this was another point at which my fates could diverge. It was very, very difficult.

I left the station.

Outside, I knew I could take a bus, a bus to the next station along, a station where I would be able to stand on the platform edge with no impediment.

I chose not to.

I certainly didn’t make that decision because I “chose life”, because I don’t want this life. I told Tom the other day, in a very small voice, throat constricted because I was crying, “I don’t want to be bipolar anymore.”

The thing about choose your own adventure books is that of course they only have a finite number of endings. Although it doesn’t feel like it at the time, you are being channelled towards one outcome or another.

Whilst it may look like a really positive thing that I’ve chosen not to take the options above, it’s actually more about moving away from the stuff I’m afraid of than towards “choosing life”. As my psychologist said this morning, my “protective factors” are currently the fear of certain outcomes.

There’s the bungled attempt with injury leading to permanent, painful physical harm or organ damage. There’s being picked up by the police because I’m behaving suspiciously, which could lead to be hospitalised somewhere I don’t want or like. Frankly I’m not that keen on going back into hospital full stop, although most roads seem to lead there, but I guess the least bad option would be to be back where I was in the winter. But least bad means they are all bad.

I suppose it’s still in my hands, at least for now.

The alternative is to put up with what I’ve got. Also bad.

A finite number of endings.

 

 

 

 

 

 

Posted in Bipolar, Crisis care, Mental health, Mood disorder, Psychiatry, Suicide, Uncategorized | Tagged , , , , , , , , , , | 5 Comments

Cracked

**TW: suicide, including methods**

“How are you doing?” people have been asking. My husband. My friends. My parents. My therapist. The Home Treatment Team nurses.

“Good!” I’ve been replying. “I’m doing well. I feel much better than I have done in a long time. I feel more like… me.” And I meant every word.

I was exercising, and feeling good about it. I was whipping through books, something I haven’t been able to do for maybe a year, if not longer. I was even thinking about trying to come off benefits and get back into work, although as Tom pointed out trying to do that whilst still under HTT might have been running just a bit before I could walk.

I did keep adding a caveat, however. I felt that I was doing well only as long as I kept to a very strict routine, involving regular bedtimes, plenty of sleep, getting out of the house every day, taking at least half an hour of exercise  – could be walking or an exercise DVD or whatever – plus some yoga.

(The funny thing about all this is that when my diagnosis was first changed back to bipolar I read a lot of self-help books on the topic and they all stressed the importance of routine. I was unimpressed. It sounded very boring. I did not ever want to be like that.)

I was, I explained, like an egg. I looked smooth, together, strong, like things could bounce off me. And that was true, but only up until the forces were great enough, and then I would be proven quite fragile after all. I would crack.

Normally I like to be right; on this occasion, not so much. I was discharged from HTT (again) on Thursday – four days ago – with many big smiles, many expressions of pride in my progress, many genuinely fond wishes for the future (again). And I felt fine, really I did. As long as my shell stayed intact.

But that evening we went to a comedy gig with a friend. It was a great idea of Tom’s. I laughed until my lungs hurt. I couldn’t remember the last time I’d laughed so much (the material greatly bolstered by Brexit – there had even been time to squeeze Boris’ appointment to the Cabinet into the mix). It made me feel good. Only we got back late. I wasn’t asleep until after 1am, so that was the first rule broken.

The idea had been that my friend would come and stay for a couple of days before the gig, but it had been difficult for her to get away from work, so the only time we really had together was Friday and as Tom was working from home we decided we’d better go out. By then I was already feeling physically and mentally under par but went out anyway and I did have fun shopping. But as I was doing it I knew that what I should have been doing was resting up.

On Saturday we kept a longstanding arrangement to have lunch at the house of Tom’s old friend and her husband. I hadn’t met them before and I was very anxious leading up to the date, although Tom had briefed her on my bipolar, which was helpful. Lunch was very nice, out in an amazing garden that leads down to a little river with that lovely river smell, lots of ducks, and people on little boats. But I found it a very draining to be with strangers for over five hours.

On Sunday I didn’t do any of the things I meant to do that would have been good for my mental health. I did not go to Quaker Meeting. I skipped yoga class. I felt that I had had a precipitous drop in mood and I did not think that Tom understood how serious it was because it had been so few days since I’d been doing well.

Yesterday I met with my Community Mental Health Team consultant Dr X and a CMHT senior Social Worker to talk about whether a care co-ordinator or community psychiatric nurse could help me stop bouncing back and forth between Dr X and HTT. Quite why this was even a question I’m not sure, since as far as I know the ward, CMHT and HTT consultants have all agreed this would be a good idea and the HTT nurses have repeatedly been told that allocation of a worker was imminent.

I explained that my shell had cracked. That I was on a downward slope and simply couldn’t face going through yet another round of rapid cycling and/or deep depression, another round of HTT and maybe hospital, that I felt I needed to take drastic action pre-emptively to step in and stop that.

They looked alarmed. Dr X asked if I had any immediate plans. I said no, because I needed to either obtain more means or do some reconnaissance (That Station is now a no-go for jumpers as they have put up a huge fence). I could see that Dr X was just itching to suggest I start on another antipsychotic, but if you get a chance to read my last post you’ll why I didn’t want that – or not at present.

They were clearly anxious, so I left with the plan that I would go to therapy tomorrow, and that as the therapist is part of the CMHT she will alert colleagues if she thinks I am at imminent risk. Part of me is really pissed off that with only 12/24 sessions left we will have to waste another of them exploring my active suicidality, but there it is. Thursday or Friday someone will call me the plan re: CC/CPN but if I am in difficulties in between I should email Dr X or ring the duty worker. In the interim I am using PRN diazepam again.

On the way home, I thought, Oh. I am actually in a lot of difficulties already. I was sliding into “the sneakies“, the zone whereby I don’t lie to people directly, but I lie by omission, making plans, taking steps. I could feel myself ebbing away from Tom, ebbing away from services, retreating into myself and my planning. The obvious things to do to progress my plans were to stop taking my lithium and stockpile it, then… go for it; check out one or two other stations along the line through which the fast trains also pass; check out which buildings might be tall enough to serve my purpose.

And then I remembered the loneliness of that position. That it was the loneliness in the end, more than the fear of death, that has always made me tell. When you can’t tell your husband or your care team or your real life friends, and you can’t tell you Twitter friends because you don’t want to put them in the position of feeling they have to seek help on your behalf, well then you are all alone. Out on a limb. On your own.

Last night, I vacillated and vacillated over whether to take my lithium. In the end I didn’t take it, but I didn’t hide it, either. I just… left it in the box. Kept my options open, knowing that I only need save them for a week and half more then let Tom pick up the new boxes, and then I would have enough.

We were in bed and I realised I had reached a fork in the road. I could speak up, or I could shut up. It’s not true I suppose but I felt like shutting up was a commitment, that there would be no going back. But I also I knew that shutting up could likely lead to hospital again. Maybe police involvement.

Any every time I pull that shit I worry that Tom will leave me.

In the end I skirted around the topic, saying that I had been struggling with some really terrible thoughts. He instantly asked if I’d been taking my lithium. Yup, until tonight. And tonight? Mmm… No. Had I hidden it? No, just… not taken it. OK, go and get it. I’ll go and hide all the other drugs.

Now I want to see you take it.

So I ate the bread at 11.30pm and I ate the cheese and I washed the three chalky pills down with fizzy water.

This morning there is a strip of cardboard dossette box on the table – two days’ worth of pregabilin, lithium and lamotrigine. There are three diazepam. That’s it. It’s humiliating. I’d only just won back enough trust to have the whole box again.

This morning after Tom kissed me goodbye as he left for work I lay in bed with my phone, Googling fatal falls from multi-storey car parks.

 

Posted in Bipolar, Crisis care, Depression, exercise, Hospital, Inpatient care, Medication, Mental health services, Mood disorder, NHS services, Psychiatry, Rapid cycling, Self-management, Social media, Suicidal thought, Suicide, Therapy, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , | 4 Comments