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 Tom speculates that I have been replaced by aliens.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

Look Mum, no antipsychotics!

On (re)diagnosis in 2011 I was recommended quetiapine, but also asked to consider lamotrigene. I was given the chance to go away and read the leaflets and come back the following week, but I wanted to get started. Also my considerable experience of Patient Information Leaflets suggested that most drugs have crappy side effects and that as a patient it is almost impossible to tell which would drug would be crappiest for you as an individual. So I just went with the first line suggestion.

I hope that makes it clear than at no point have I ever felt that at my psychiatrist and I made a bad decision. Lamotrigine has turned out to be a really good drug for me, but there was no way of knowing that and choosing it over quetiapine at the time. As with so much mental health prescribing, it was pretty much a matter of guesswork.

Since then, if I am counting right, I have mentioned quetiapine in 44 blog posts, which probably says something about its impact on my life. In February this year while I was in hospital it was decided that I would come of quetiapine and change to aripiprazole, a decision I haven’t really much written about before.

Quetiapine is a new generation/atypical antipsychotic, often better known by its initial brand name Seroquel, although it went “generic” (the patent expired so any company could produce it) in 2012. This means that NHS pharmacies can shop around for the best price and will purchase whichever brand is most cost-effective. Brands I’ve taken include Accord, Atralak, Quettor and probably others that I have forgotten.

Aripipazole, best known as Ability, is another atypical antipsychotic but is not thought to cause many of the side effects which make other antipsychotics intolerable to some people.

The experiential bit

The most obvious and immediate side effect of quetiapine was sedation. I had hoped that quetiapine would be a quick fix, that if I took if for maybe a month or two my symptoms would subside and I could return to work. It didn’t take long for me to realise that the sedation was as disabling as the symptoms. Sleep had become my number one preoccupation and I felt I had little quality of life. Over time, I adjusted. I felt less sedated at 700mg that I had at 300mg but a level of sedation remained and I continued to sleep for about nine and a half hours every night.

About three hours after taking it, it was if a shutter came down. Tom could see it in my face. It didn’t matter what I was doing, reading, watching, I had to go to sleep. If we were out, we had to get home, quick. Once in bed I would fall instantly asleep. Getting up was always a struggle; in fact waking up at all was hard. My conscious mind would want to wake, but the drug would prevent it. It was like trying to swim to the surface, only to find my ankle was grasped by an octopus.

Early starts were really hard. People I have worked with have seen how out of it I looked at the start of a meeting or training session, how I only really became lively mid morning. Working two days in a row required taking the quetiapine at so early that I barely had time to eat dinner before heading off to bed again.

The other really, really difficult issue was weight gain. I was warned of the potential for this when it was first prescribed, but I just thought, “Oh, that won’t happen to me, because I’ll control my eating and work out more.” Except when you do nothing but lie on the sofa all day because you are so sedated, you really can’t exercise. Except quetiapine disrupts your appetite and the feedback loop that tells you when you are full, so you are always hungry and rarely feel satisfied. Except quetiapine disrupts your metabolism so that you gain and retain more fat that usual.

So over time I gained about 3st – which is nothing compared to many people I know, but has still seriously affected my body image and self-confidence. I tried to lose it, but strict dieting for a couple of months plus tons of exercise produced precisely no weight loss and I became discouraged. I also developed the characteristic pot belly that has lead to numerous embarrassing conversation about when my baby is due and whether I would like a seat on the tube. I found these really humiliating.

Quetiapine also slowed down my bowel function. Don’t worry, I won’t go into too much detail, but the problems became really quite serious despite daily doses of laxatives, and I had to be referred to a gastroenterologist.

Other, weirder, side effects included a stuffy nose soon after swallowing the pill, which caused me to snore, something I also found very embarrassing. And it caused me to have occasional engorged and leaky boobs, something it’s not “supposed” to do as it’s not one of the new generation antipsychotics which like, say, risperidone elevates the body’s level prolactin, the hormone responsible for the production of breastmilk.

Was it ever helpful? At times. The sleep bit was often useful – although when I was really high I would break through even 700mg. When I was having mild psychotic symptoms  an increase really helped down the frightening experiences I was having.

But overall I had had enough. When I was given the chance to switch to another antipsychotic, I jumped at the chance, although initially I baulked at aripiprazole as I had heard bad reports of agitation and insomnia. Looking at the comparison chart of antipsychotics however it was clear that almost all the other options either caused weight gain that was actually worse than quetiapine, or elevated prolactin levels. So I decided to give it a go.

It was an unmitigated disaster. During my slow reduction of quetiapine (100mg/week) I’d been quite wobbly, and ended up under Home Treatment Team. But the last couple of weeks of the quetiapine, when the aripirazole was being added in, I was starting to feel OK. Then I dropped the last 100mg of quetiapine and a kind of aripiprazole hell broke loose. I was barely sleeping. I was so anxious and agitated I didn’t know what to do with myself. I am an anxious person who takes anti-anxiety meds, but on a scale of 1-10, this was about a 12. I have never known anything like it.

It didn’t take me long to be desperate, exhausted, suicidal. I ended back under Home Treatment, who encouraged me to go into hospital. I said I would stay in the community as long as I had an urgent medical review. I needed someone to tell me that either I should hang on in there because the beneficial effects would soon be kicking in or that I should stop the drug there and then. If I did have to carry on, then I would have to go into hospital, because I couldn’t cope at all in the community.

I saw Dr HTT who said that what I was experiencing was clearly iatrogenic (medically  induced) and clearly intolerable, so I should just stop taking it. My God, I was relieved. I waited then to hear what his suggestion would be about the next antipsychotic to try but he suggested… nothing. No new drug. Just to see how I was on lithium, lamotrigine and pregabilin.

I was stunned.

What… no antipsychotic? At all?

I was so habituated to the idea of taking an antipsychotic every day that I didn’t know how to feel. The idea was scary, but it was also liberating. He knows me well, and knows that I have been frustrated at being on so many different drugs; he saw the moment as a chance to address that.

So here I am on no antipsychotics. How do I feel? Well, firstly, and most importantly, I would best describe my current state not in terms of up and down, but in terms of having clarity. I didn’t think the quetiapine was sedating me anymore but now I realise it must have been because to borrow a cliched analogy, it’s like putting on glasses for the first time.

My digestive function is better – no more laxatives. I am eating less, noticing when I am feeling full, feeling truly hungry. I haven’t really worked on losing weight but I’ve dropped a little anyway and I look a little less pregnant. I can breathe at night, so I don’t snore.

I had some really problematic insomnia going on for a while when the aripirazole was still in my system and the quetipaine wasn’t, but that’s settled. I’ve had to relearn how to just go to sleep though. Without the shutter coming down I’ve had to teach myself to drift gradually off, something that made me really anxious a couple of weeks ago but is feeling more natural each night.

I’ve still got lots of problems. I keep trying out work tasks and finding that I am either too delicate/emotional/anxious or that my brain simply won’t work (blogging is nowhere near the level of cognitive function required to write professionally). I told my therapist the other day that I feel like an egg – I may look smooth and strong and solid but actually I’m really, really fragile. But in terms of how I feel off antipsychotics compared to being on them, there is not contest.

I’m not knocking them. I know they help a lot of people. And I most certainly am not ruling out taking them again at some point in the future. But at the moment I am excited to be riding with no hands.

Posted in anxiety, Bipolar, Crisis care, Medication, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, Recovery, Side effects, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , | 18 Comments

The green zone: how “recovered” do I want to be?

I’ve been reflecting on and discussing the concept of recovery a lot lately. I meant to write quite a political post about the recovery model, about which I’ve been openly critical both on here and on social media, about how I dislike the fact that the system imposes a notion of being improved or “fixed” according to its own criteria.

But then yesterday a Home Treatment Team nurse asked me what I wanted my life to be like and suddenly I felt like I didn’t really care a damn about the term recovery, that there was no point at which I could ever say I was “recovered”. After all, don’t we all “recover” on an almost constant basis? Recover from a crisis, a panic attack, a wave of anxiety, a few bad days, a few bad months, a bout of insomnia, an unexpected trigger, side effects of medication, a period of hospitalisation?

It comes and goes in waves. There is no fixed point.

But wants and desires. That’s a different matter. What do I want?

And having thought about this more I have made you a handy infographic, which you probably can’t even see because I’ve drawn it in my lovely coloured pencils.

IMG_2563

The outside lines represent my highest functioning zone, the blue zone, the eight (eight!) miraculous years when I was largely, although now with the benefit of hindsight I see not totally, symptom free.

During that time I had such strength. I was brave. I dragged myself out of an economically and emotionally abusive relationship (not my kids’ dad) and out of the poverty and debt their actions and inactions had created.  I paid off all the creditors. I dipped my toe into the world of dating for the first time and met Tom after a number of hilariously awful encounters.

I applied to become a trainee probation officer and was offered places in two regions. I qualified top of my group with a first class degree and was first in a specialist probation officer role and then a middle manager in short spaces of time. I loved living in London and had a great time. I sang in three choirs every week and took my kids to music school every Saturday morning and I socialised a lot. Critically, I didn’t just go out for drinks and meals and going on holiday, I was able to take the initiate and plan them, and then keep to the plans.

As I have said before, I was so well then that I totally stopped thinking of myself as someone with a mental health problem. I often uncomfortably wondered why I’d decided the kids were best off with their dad during the week when there was no need for it – because I was functioning so well.

I have no hope or expectation of ever my life pushing back to those wide blue parameters.

Take another look at the zones. In the middle – red – is complete non-functionality. This is me sitting on the floor of a psych ward, crying. This is me sobbing to Home Treatment Team that I am being monitored through the light fitting. This is me coldly and calculatingly collecting everything I need for a serious overdose and hiding it in plain view in a suitcase in our bedroom. This is me, down by the tracks.

Clearly, in that level of crisis, I cannot work. 2.5 days has been the extent of my employment for the whole2016 so far and that was in January. I’m self-employed for flexibility, but that doesn’t help if I can’t get to the meetings or the phone conferences or the training events or the research interviews. Even the from home stuff becomes impossible; when very unwell I can neither read (at all) nor write professionally so document reviews and freelance articles are a no-go.

 

Between about July and the end of November last year I was in the orange zone. It wasn’t brilliant, I wasn’t “well”, but I managed to keep out of crisis care. Work built up a little bit and I was involved in interviews for one active research study and preparation for a brand new one with a different team. I had service user input on a series of other research proposals. I had a couple of well-received articles on the BBC Ouch! website and The Lancet Psychiatry and a brief TV interview. I went to some big health-related events on behalf of the Coalition for Collaborative Care.

I wasn’t earning big bucks and as a freelancer in the field I don’t expect I ever will, but hey, I was earning something. I was even able to contribute to the household in some way while meeting my own needs. Everything I did was interesting, everything felt like I was making a difference. I was reasonably happy. I was ticking along. TBH simply getting back there would feel like a miracle right now.

But what do I want? I suppose I want a greater level of security than that. I don’t know if I would ever actually do this, but sometimes I see half time service user researcher jobs advertised and I hanker, oh boy do I hanker, after them. I say I don’t know because although research is one thing I love, I love all he other things I do, and I love the flexibility. But the point is this: i would like to be able to apply for a job if I wanted to. I would like to be able to say, absolutely, I can be at work Mondays, Wednesdays and Fridays, or every day between two and five.

In truth, I would probably prefer to grow the business instead. Either way, I would like to be able to work three days instead of one. I would like to be able to commit to attending an event without having to add the caveats, “I hope” and/or, “if I’m well enough.” As previously stated, I want to be able to go back to choir and to yoga and to be able to fund those things myself. I want to be able to at the very least chip into the household finances.

I supposed what means is that for me, “recovery” – the green zone – means having choices. It means a reasonable level of wellness, albeit one for which I expect to have to continue to have to take meds, maybe continue in counselling (my NHS therapy will have long run out), be vigilant and monitor my own feelings and behaviour to try to stay as well as possible. “Self-maintaining” is how a participant described it in one research study I took part in.

This might mean services gently bowing out. I know it’s silly to to say that when I’ve only just got a CPN coming into the picture, but I don’t want to have to have one forever. I don’t mind periodic monitoring visits to my consultant although part of my dream does remain being discharged from secondary care.

But choices, choices, I want some choices about what care I receive, what work I do, what I do outside of my work life. And these are choices which those of us within the mental health community sometimes forget that blue zone people get to take for granted. I’d certainly forgotten about them. Don’t like your job? Get another one, go back to your old career, brush up your CV and off you go. Bored with your social activities? Just give something new a try, go somewhere you’ve never been, meet new friends.

I don’t know if/when/how I can get to the green zone. For now I’ve got to concentrate on consolidating my moves back into the orange zone, sorting out the troublesome insomnia, checking out what life is like without an antipsychotic, edging towards paid work (I have a couple of unpaid bits as practice but I’m still on sick leave). So no running before I can walk. But one day I hope to run off into the wide green horizon. I hope that can be a reality.

 

 

 

 

 

 

Posted in Bipolar, Crisis care, Employment and benefits, Medication, Mental health, mental health debate, Mental health services, Mood disorder, NHS services, Recovery, Self-management, Uncategorized | Tagged , , , , , , | 8 Comments