Enough of us both

TW: suicidal thoughts and planning

On Monday afternoon I sat in a glass-walled consulting room with my Consultant psychiatrist. Out in the waiting room I had felt so weary, sick to the back teeth of coming to this building over and over again; in about three months’ time I will have been attending that same clinic for four years. I thought back to my first appointment. I remembered how confident Dr X had seemed about stabilising me on the right drug and getting me back to my job as quickly as possible. I wondered how many more months or years I would carry on coming here in the hopes of that elusive stability

I started to cry as soon as Dr X asked how I was doing. The last time we met I’d been so well, better in fact that in years, all thanks to the cocktail of meds we’d arrived at with the help of the National Affective Disorders Service. I knew it was ridiculous, but I felt that by going into a tailspin I had somehow let him down. As I explained how I had lost my cherished equilibrium and had a sudden, very deep mood drop I sobbed, covering my face or my eyes with my hands. I couldn’t look at him. I said that I felt I had got sucked into yet another bipolar loop and I simply couldn’t cope with that. I sobbed from behind my hands that not only had I reanimated my suicide plan from the autumn – which had turned out to be dormant, and not at all extinct – I had gone further, writing lists and calculating budgets to try to make things to pan out the way I wanted to.

Dr X, as he always does, said he was very sorry to hear that (can you tell that even though I think he’s great and by far the best psychiatrist I’ve ever had, I have appointment fatigue?).  He told me, as of course I knew he would, that he was confident we could get me out of this blip and back to better functioning. I thought, but could not say, that this repeated dance of ours was part of the problem. Dr X asked what I wanted to do. Did I need more support? He could make a referral to the Home Treatment Team. I groaned and pressed my palms into my eyes. No. I did not want to be referred to HTT. Although I had come to know the team well and found them hugely supportive, after spending half of 2014 under their care I just couldn’t face going back. I was beginning to feel like a HTT revolving door case, with no hope of ever getting out of services. So we compromised. We would up the lamotrigine and I would come back in two weeks to report on progress. I would ask Tom to manage my meds again. If within that time I decided I wanted HTT, or if Tom was concerned, we should contact Dr X immediately. If at the end of the fortnight I was no better I should reevaluate my options.

Since then I have felt confused, anxious, miserable, detached, terrified, exhausted, guilty (sometimes all at once) and above all despondent about my life and its limitations. I am back in a place where I can see into my future of relapse after relapse, no matter how well I do in between, and as before I feel I do not want this life. It is not tenable going forward. I often tell people that I wouldn’t want my bipolar taken away, because it and I grew up together, and it is true; I have no idea who I would be without it. So it’s not simply that I want rid of my bipolar. I have had enough of us both.

Right now I am juggling four quite compartmentalised parts of my brain. There’s the ordinary bit, the bit that thinks according to accepted logic. The bit that can say, well, I was in remission for some years before and it’s true I was doing well lately. Dr X is right, Tom is right, if I’m patient with the dose increase it could lead to me catching another break. The good times are worth the difficult times.

The anxious part works to a differently logic. It reacts to a drop in mood with sheer panic, with desperation, with a belief that it always, always comes down to this and there is no hope, that I am a terrified hamster running round and round in the same wheel. So of course there is only one answer to that, and that is to exit the wheel.. The anxious part would kind of like HTT involvement, because they are familiar, because I want an NHS comfort blanket, but fears that nothing will help and that referral back to them emphasises the fact that things will never get better.

Then there’s the sneaky suicidal part, which I’ve written about here. I’ve been experiencing a lot of dissociation this week. Not just feeling spaced out and floaty, but seeming to lose chunks of time, finding I have done things I don’t really remember. The dissociation is closely connected to the sneakiness. My guess is that this is the only way my poorly brain can cope with my situation – by opting out. This part of me is almost like sleepwalking or autopilot, more like an app running in the background that a series of conscious thoughts. In the supermarket buying soup, that part of me clocks helpful items and squirrels the prices of them away for later use. It begins to attach tremendous importance to certain, potentially useful, objects around the house. It notes that although Tom has taken away almost all of my drugs, I have ways of getting others. But it does all this well behind the logic and the panic.

The last section is simultaneously critical and fearful. It worries that there is nothing wrong me, that I am a fool and a fraud to even be thinking of Home Treatment, that all this suicide planning is not a response to distress or history but some form of attention seeking (even though I am extremely resistant to telling and never ever disclose the details to anyone who could help). It thinks that despite a Consultant psychiatrist being worried at me people might laugh at my minuscule problems.

I don’t really know how to re-integrate my mind. I suppose I’m waiting for conventional logic, perhaps helped by the med increase, to take over. A good friend said to me recently that she was worried the dissociation puts me at risk of sleepwalking into harming myself. Part of me doesn’t want that, wants to live, only I am so weary of everything that I can’t be bothered to nurture that desire. I literally don’t know what to do with myself.

Posted in Bipolar, Mental health services, Suicidal thought, Suicide | Tagged , , , , , , , , , , | 13 Comments

It’s my movie, and I’ll watch where I want to

I often like to go to the cinema.

Because I live in a big city, I am fortunate that I have more than one model of cinema experience to choose from. As in most places there is, however, a dominant model: Big Cinema. Your Vue, your Cineworld. Multiplexes showing brand new blockbusters that change every Friday and extra kids’ films at half term. You get to sit in a vast auditorium with surround sound that vibrates through your very being. There’s not just popcorn for sale any more at the multiplexes. These days it’s de rigueur to provide punters with nachos and hot dogs and Ben and Jerry’s and alarmingly coloured slushies. Oh, and pick and mix.

But there is an alternative. In cities and, more rarely, in rural areas (I’m thinking of things like the Zeffirellis project I came across in the Lake District) there are independent cinemas. They do show some mainstream films, especially if for children’s screenings or to showcase Oscar winners, but mostly they screen arthouse, foreign and indy films which would never get a look in at a multiplex. You know, quirky films that pull in smaller audiences. Maybe there’s a popcorn machine but as it’s accepted that we’re mostly grown ups here there’s often no problem with taking alcohol into the screening. I like all that. I like the quirkiness. I like the ambience. So every so often we’ll go and watch a film from red velvet seats on a screen surrounded by a proscenium arch. It’s better if I want to feel like I get a personal service and it’s better if I want it to feel like “date night” with Tom.

Neither of the models is right. Neither is wrong.

Some people might disagree, might think that there’s a moral case against Big Cinema. They may dislike the homogeneity of the big chains, the fact that you could be in pretty much town in the country and the décor, merchandise, staff uniforms and choice of films would be the same. They may well point out that the staff at the screen door or behind the counter are mostly young people on poor pay, that maybe some actions of the big chains oppress people. It could be that they resent the Big Cinema’s influence on shaping people’s expectations of the cinema experience and their views on what makes for a “good” film. I know that some people feel that they are making a statement by not going to a Vue or a Cineworld, by giving their ticket money to the restored Edwardian cinema ten miles away.

Now I am a person who can handle complex information. So guess what: I have already considered each model’s strengths and deficits and their relevance to me. And I still choose Big Cinema nine times out of ten. I do not need moral crusaders from the anti-multiplex team to point out that it is problematic in a number of ways. I do not need to be on the end of someone’s belief that I should make different choices, that I make the choice I do because I am under-informed or incapable of understanding their objections, that I am seeking to crush the independent cinema scene.

Because the multiplex works better, for more of the time – for me. It is close by. It is easily accessible by public transport. It has so many showings and that makes it easier to fit around getting up times, doses of medication, sedation, dinner. It has an app which means I can book at any time, anywhere. And having six showings of those crossover Oscar-winning films means that I’m more likely to get a seat at the multiplex at the weekend than at a cinema with only two showings.

And within the Big Cinema model there is still choice. I can choose times, dates, screen sizes. I can choose to be right up near the screen or right at the back of the auditorium. I can choose to buy any of the foodstuffs on sale, or none (although I find it very hard to resist a scoop of Cherry Garcia). There are Kids’ Clubs that my two are now far too venerable to attend, but we used them in the past. There are parent and baby screenings – I don’t need those, but it’s nice to know services are provided for new parents. I can even choose screenings where everyone is over 18 so I know I won’t get pelted with popcorn.

By exercising my choice to use Big Cinema 90% of the time I am not:

  • Foolish or naïve because I haven’t yet had a bad experience with Big Cinema. On the contrary I have had a number of really poor experiences. They just don’t, on balance, outweigh the usefulness of Big Cinema to me.
  • Making an uninformed choice.
  • Denying the value of independents – to me, to others.
  • Committing myself to a single, monolithic cinema experience and denying myself choice of model, or choice within models.
  • Making any comment whatsoever on anyone else’s choices.
  • Indoctrinating my kids into the Big Cinema model (in fact if you ask them they’d probably say their best cinema experiences have been at the Barbican).
  • Letting myself be a tool, a dupe, a guinea pig of the bosses at Cineworld.
  • Inviting or giving license, simply by sharing my preference, to members of the anti-multiplex guard to have a go at me in my comments section or on Twitter.

It’s important to realise that when someone makes one or more of the above assumptions really does not endear independent cinema to me. It does not cause me to have a arts epiphany that I have been wrong all along. Do you know what it does? It makes me increasingly unlikely to go indy, or to recommend the benefits of indy cinema to others. It has exactly the opposite effect of that which the anti-multiplex lobby purport to hope for. Who would be attracted to a school of cinema whose most vociferous proponents persistently insist that you must be foolish, thoughtless, naïve, ill-informed, lacking in intellectual ability? If that’s my other option, give me Channing Tatum in screen 17.

Now you must excuse me. Cherry Garcia is calling my name.

(For the baffled, scroll down.)

Key substitute “the medical model” for big cinema. Substitute “psychiatry” for multiplexes. Substitute “clinical psychology” for independent cinema. And substitute “antipsychiatry” for anti-multiplex.

Posted in Activism, antipsychiatry, Mental health services, psychology | Tagged , , , , | 5 Comments

Polly Pharmacy? Who’s she?

Today I’m reflecting on a comment. A few days ago a relative asked if I wanted a glass of wine with dinner; I declined, explaining it didn’t mix well with my meds. Someone else, overhearing this, expressed irritation that my partner Tom and I “go on” about our meds. I keep pondering this. Do I (we?) talk about meds too much? And are others right to be annoyed? I know I mention them a lot, especially around mealtimes – some have to be taken with food, others before meals, and if I mistime a does it’s a challenge not to fall asleep with my face in my plate. I guess the simple fact is that I do talk about them a lot, because that reflects their massive impact on my life. Trying to manage them takes up almost as much mental space as managing the bipolar itself.

My meds have long affected whether I can go out – to choir, say, or an evening class – and get myself safely home again. They have impacted for years on my ability to get up early for work or travel. They affect whether and when I can drink alcohol; whether I can stay awake until the end of favourite programme; what my energy levels will be like for the day. My life revolves around repeat prescriptions and making sure I don’t run out, particularly around Bank Holidays or trips away from home. I am constantly aware of the need to make sure I’m well hydrated and book in for regular blood tests (lithium), and to take care when it’s hot so I don’t get sunburn or sunstroke (quetiapine). I have for some time now also taken drugs for the side effects of the bipolar medications. I cannot tell you how I resent the fact that I must take unpalatable laxatives daily, without fail, or endure severe bowel problems. Since the summer I have also been on a daily blood pressure drug (both quetiapine again).

But as I say, it’s not just me. Tom takes meds for two conditions, again in different combinations at different times of day. To some extent our daily life is dominated by the drugs we need. Before we leave the house we ask each other, “Have you got your meds?” and at mealtimes, “Have you taken your meds?” If we go out we pop just enough for the evening into my handbag. Perhaps my medication use has become normalised by this, and by association with others who take prescribed drugs. After all, most – not all, but most – people I know with a mental health condition take medication.

In accordance with suggestions from the National Mood Disorder Service, I have recently started thyroid augmentation and I’m also titrating upwards towards a therapeutic dose of lamotrigene. The addition of lamotrigine means I now have to stay vigilant for nasty rashes, although hopefully by this point in treatment I have escaped the one that’s potentially fatal (joy!). I was also recommended pregabilin for anxiety. I am glad of this, as just as my moods have stopped swinging back and forth, acute anxiety has started to rear its head. It’s really quite debilitating and I‘ve become slightly worried about just how much diazepam I am using to cope; it’s just not a viable longer-term option, so as of today, pregabilin is in the mix too.

The idea is that once I am sufficiently stabilised on the lamotrigine, we can begin slowly withdrawing the quetiapine (the lithium will stay). But we’re not at that point yet, and as a result I now take fourteen different pills and one sachet of medication every single day:

  • levothyroxine for mood
  • lamotrigine for mood/rapid cycling
  • quetiapine for mood stabilisation/anti-manic
  • lithium for mood stabilisation
  • pregablin for anxiety
  • losartan to tackle the high blood pressure caused by the quetiapine
  • senna to tackle the bowel problems caused by the quetiapine
  • Movicol, again for the bowel problems

In other words, I am well into the realm of polypharmacy. Health think tank The King’s Fund defines the term as “the concurrent use of multiple medications by one individual” and notes that in the context of an ageing population it is increasingly common. Traditionally, polypharmacy has been seen as something as something rather negative and as something “done to” patients, particularly vulnerable or older adults, without due care for the overall impact of multiple medications. Indeed I am fully expecting this post to generate horror from the anti-psychiatry brigade and concerned comments from friendly clinicians worrying that I’m on far too many drugs. The King’s Fund however notes that it can be beneficial in some contexts, and suggests it may be more appropriate to distinguish between “appropriate” and “problematic” polypharmacy.

Is polypharmcy appropriate in my case? Yes, I think it is. I’ve gone from unmanageable rapid cycling to mood stability in a couple of months, although as I say the anxiety really needs some work. But of course there are downsides. Without pre-payment, all my drugs plus additional diazepam would set me back just over £70 a month. I do worry about the cost to the NHS – although I have to remind myself they are this remains a cheaper option than Home Treatment or inpatient care. The main consequence for me is that I now have to manage a significantly increased number of pills, taken at three different points throughout the day (formerly two), something I would fail woefully at without a huge dossette box and a pill reminder app. I find it harder and harder to remember exactly how much of each drug I am on. Away from home recently and faced with the possibility having to ask a local doctor for an interim prescription, I realised that for the first time in my life I was not entirely sure of all the doses of all my meds.

So maybe I do “go on” about my meds. But that’s because living with polypharmacy is complex, sometimes difficult, and the consequences of getting it wrong could be huge. I guess I feel that saying that a disabled person “goes on” about any form of treatment is essentially saying that they “go on” about their disability – after all, no disability, no meds. Not having to take meds confers a level of freedom and privilege that younger and/or non-disabled people probably don’t even realise they have. When I took one or two pills daily of a single antidepressant, I had no clue. Yes, I fell into the camp of those maligned by pillshamers, but taking my single drug at the same time every night right before I went to sleep had no real negative effect on my life. Right now the ups currently outweigh the downs, and after all, the goal is to reduce the use of some drugs by the introduction of others. So for the moment, Polly is my friend. Even if she makes me rattle.

Posted in Bipolar, Medication, Treatment planning | Tagged , , , , , , , , , | 8 Comments

999: Is your emergency deserving enough?

[Content note: A&E for mental health crisis, poor care experiences, suicidal thoughts, self-harm]

The strain felt by A&E departments as we move into winter has been much in the news. Today the Guardian pronounces the whole A&E system to be “emergency care on wobbly legs” and notes that GP practices and ambulance services are also struggling to keep up with demand. Much of this is due to an ageing population – people living longer develop more long-term illness – but there appears to be a growing impatience with people “misusing” or “clogging up” A&E provision. I have no doubt that this is a genuine problem, having once had a conversation with people who thought it quite normal to go to A&E for a weekend ear infection, apparently genuinely unaware of out of hours GP care or the existence of walk-in treatment centres.

With all of this in mind NHS comms teams have been fighting back, producing handy guides to other services people should consider before making the trip to A&E. The most widely shared of these appears to be the “Think! Why A&E?” campaign which encourages trying self-care, making use of community pharmacists, visiting a walk-in/urgent care treatment centre, or calling the 111 helpline before considering attending A&E. The model offers examples of appropriate conditions for different levels of NHS input (for example, self-care for a cough or a hangover, a walk-in centre for cuts or sprains) but not one mental health condition/issue is mentioned despite the fact the Guardian article goes on to note that “people suffering mental health problems are also adding to the pressures on GPs and A&E units because support is not available in the community.”

When I deliver Mental Health First Aid there is a section in the instructor toolkit with which I feel very uncomfortable, and that is where A&E is recommended as a source of help in a mental health emergency. It’s quite clear why the recommendation is there: unless you are already hooked into services with out of hours provision, making your way to A&E or dialing 999 is probably your only way of accessing any support in a crisis – not to mention that many people who are already in services are told, even by so-called “crisis teams”, to use A&E if they cannot keep themselves safe. The message is as clear as it is bleak: we can’t help you, get yourself to A&E if you can, or call 999 if you can’t. Yet I feel deeply awkward making the recommendation because I am fully aware of the reality of the A&E experience for someone in a mental health crisis.

Ask for anecdotal feedback on A&E from those who go there because they are desperate, are suicidal, have harmed themselves (perhaps slightly more than intended and are doing the responsible thing in seeking treatment), or those who have attempted to take their own lives. I am afraid that you will not find a picture of comfort, kindness and safety. As I scroll through my Twitter timeline I see people treated like a nuisance. I see people left completely alone with their psychiatric emergency, in a busy and sometime intimidating environment. I see services who have psychiatric liaison staff but the staff are unavailable, or take hours to arrive. I note that attempters and self-harmers are still being treated with contempt or rudeness, or being made to feel ashamed and a “waste” of professionals’ time. Very sadly, I continue to hear of people who have self-injured being sutured without anesthetic as some kind of passive-aggressive punishment.

By all means let’s not have people calling out of hours GP services for a hangover or attending A&E for a grazed knee. Nobody is helped by that. But we already had a major problem with A&E staff lacking the training or understanding to recognise a genuine psychiatric emergency. That lack of understanding leads directly to a failure to deliver timely, compassionate care and an inability to recognise what a daunting place A&E can be for someone who is very mentally unwell. Campaigns about A&E that completely elide the presence of severe mental health and give out the message that A&E/999 are really only for “chest pain, choking, blood loss or blacking out” add to the idea that A&E is not for the likes of us.

So in the winter of 2014/15, with the NHS under increasing scrutiny as we head toward the General Election, rhetoric about “inappropriate” A&E attenders is being ratcheted up and is likely to decrease A&E professionals’ tolerance for people they feel are wasting a scarce resource. Do A&E and ambulance service workers know that their care is not only some mental health service users’ sole choice out of hours, but is being directly recommended by secondary care staff who don’t have the resources to offer anything else? I doubt it.

We’re supposed to be moving towards parity with physical health care. How this is supposed to be achieved when mental health conditions are entirely ignored in discussions about urgent and emergency care, I really don’t know. A&E staff may well feel that caring for people experiencing a psychiatric emergency is not their job as they are simply not trained for it. Meanwhile mental health services are making it increasingly clear that they don’t have the resources to support people out of hours or who are not already known to services. Desperate, vulnerable people in an hour of great need should not be batted between services. We are not shuttlecocks and the politics of care isn’t our problem. Our problem is survival, and NHS strategic bodies and local commissioners have a duty to sort out the rest.

Unless the parity agenda is pushed, and pushed with some force, this issue will only get worse. People need to “think mental health” not just in service design, but in comms and information campaigns. Statements on appropriate GP use needs to include people worried they may have a mental health problem, not just people who need flu jabs or statins or antibiotics. If we can give people emergency contraception at a walk-in centre, we ought be able to offer short-term pharmacological help for panic attacks. And A&E must be identified as a suitable place to go if you have badly hurt yourself or are close to attempting suicide. Otherwise policies and campaigns (like the chronic underfunding of mental health services) feed into the idea that we are a “nuisance”, that we are “time-wasters” or “attention-seekers”, that a fractured mind is somehow not as real as a fractured neck of femur. It dishonours the NHS to distinguish between “deserving” and “undeserving” emergencies.

Posted in Crisis care, Mental health, Mental health services, Politics and current affairs, Stigma and discrimination | Tagged , , , , , , , , | 24 Comments

The woman in the crumbling mask

[TW: suicidal thoughts]

As Christmas approached I was cautiously optimistic. I’d been doing so much better since starting lamotrigine, feeling like myself for the first time in who knows when. I saw no reason why that shouldn’t continue. Of course I was a bit concerned that the “festive season” might somewhat destabilise me as it has sometimes done in the past, but that was OK. I had strategies in place, strategies so sensible and helpful that I saw fit to share in them in an article for the BBC.

That article was read by thousands. Countless readers contacting me by tweet, blog comment or the “contact Charlotte” tab, people who wanted me to know that they also struggled at Christmas, who wanted to tell me that what I had written had made them feel less alone, that it had validated the choices they had made about how they would look after their own mental health over the “festive season”.

This left me feeling like a fraud and a hypocrite when Christmas proved harder than I could have imagined. Every day over the past week I have felt myself grow more and more unwell and every day I have had to try harder and harder to hide it. I did not want my children to know how awful I was feeling, so I put on a mask. I began to hate myself for becoming unwell again as Tom is dealing with the fact that his mother is in hospital some distance away, and worrying about the lack of clear information as to whether she in fact has a brain tumour. I have not wanted to be another worry for him. I hate the thought a burden.

But try as I might to hold it back, my mood has dipping and my anxiety rising. This was not helped by receiving a very much unwanted Christmas card from a relative with whom I have made it clear I want absolutely no contact. I spent about a third of Christmas Day crying and trying to disguise it (I cut an awful lot of onions that day). Boxing Day things eased a little, but by the 27th of December I was in such a state of desperation that I was distracting wildly. I feared that if I let myself experience the full level of my despair I would start screaming, just screaming out loud, and not be able to stop. Much as I adore my children the strain of trying not to seem increasingly, screamingly mental was immense. While I cooked or played a board game or watched a Christmas film all the time I was thinking, “How can I do this? How can I possibly do this? This is Hell, how can I carry on living in hell?” When the children left yesterday I told myself that I only had to wear the mask for one more day. One more little day, just so I could accompany Tom and his daughters on the six-hour round trip to see my poor dear mother-in-law.

I got up on time this morning. I ate breakfast. I washed and dressed. I did my hair and indulged in a quick spritz of perfume. And then I realised I could not cope for even one more day. I could not put that mask on again, and if I did it would be liable to crack long before we reached the hospital. And I still have some semblance of pride. I could not stand to become that screaming, howling thing I feared, could not bear to feel less than human in front of my stepdaughters. Tom was anxious about my decision to stay at home, maybe even angry. He did not feel it was safe to leave me alone; I did not feel it was safe to leave (it would hardly have been possible for me to return on my own if I couldn’t cope).

This afternoon I rang Home Treatment Team and bawled down the phone for 20 minutes. I had so much to cry about. How very disappointed I was to be so unwell again when I had felt that I was on an upward trajectory. How disappointed I was at my inability to enjoy most of Christmas. My shame at my inability to just be well, to be normal and supportive, to be the kind of steadfast partner Tom needs and deserves with his mum so unwell. The fear I feel noticing that every day thoughts of suicide creep a little closer. The plan I had before was so detailed, so careful that I find myself easily resurrecting it. I am aware of wondering how I can get hold of medication without anyone noticing, how I can stockpile cash. As I sobbed to the HTT nurse – who was, I have to say, amazingly kind – I don’t want this. I don’t want to be back in that horrendous, lonely place where I am all by myself, cut off from the rest of humanity, out in the cold. The though terrifies me.

I know that it is early days as far as the treatment plan goes. I am only taking a quarter of what the doctors consider a therapeutic dose of lamotrigine and I do understand why the titration has to be slow and careful. But I don’t know how to do the here the and now, let alone move into 2015. Staying at home today was the right choice today, but it’s brought huge guilt. And I don’t know how to stop the encroaching thoughts of it being better if I weren’t here; that I am a useless burden to Tom and the children; that I just cannot live with my bipolar into 2015 and beyond.

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Posted in Bipolar, Crisis care, Depression | Tagged , , , , , , , , , | 22 Comments

So this is Christmas – and what have I learned?

[Content note: discusses suicidal thoughts]

Yesterday I was looking through some photos and came across pictures of Tom and I took in Bavaria last Christmas. Looking at them gave me a strange jolt. It suddenly felt like no time at all since we met St Nicholas (OK, it may have been the hotel manager in a bishop’s mitre) during our Christmas Eve dinner – yet at the same time this year has been so difficult, so gruelling, it seems to have lasted forever. In all of that hard slog, I had almost forgotten our trip.

There is a poignancy to recalling it. I remember that over Christmas I felt happy, that we built some remarkable memories. A torchlit walk in the dark, the burning pine sticks casting flickering shadows on the snow. A visit to King Ludwig’s Neuschwanstein, the inspiration for Disney’s castle. Hearing the group in the next room unexpectedly break into “Stille Nacht, Heilige Nacht”. Yet I was just days away from realising that depression had been creeping up on me, that I was already starting to think about taking my own life before it could really get a grip. It was a depression that would stick around, causing my first crisis of 2014, morphing into rapid cycling that did not lift until mid-April.

There has in fact been no point during this year where I have been fully well. Even during the summer, when I felt sure I was in remission, I now realise that I was simply marking time between crises. I have also had to acknowledge that my excessive energy (walking up to 15,000 steps per day, plus working out five days a week) and massively abnormal sleep (waking up every hour throughout the night for months on end), all while on 650mg of quetiapine, suggest that I was in fact a bit high. This was not at all clear to me at the time. Then came a September wobble that became an October crisis and I remain under the care of the Home Treatment Team to this day.

Not having any true stability is nothing I haven’t experienced in recent years. But the detail of my suicide planning and the incredibly disconcerting experience of rapid cycling have been new in 2014. I don’t believe I have been this bad for perhaps 13 years, when I attempted; Tom certainly feels that he has never known me to be so unwell in the decade we have been together.

If anyone had asked me during this year whether I felt I was “learning” from the experience, I would have been deeply offended. I am emphatically not of the mindset that pain is a teacher, that we emerge from it somehow spiritually more evolved. It would have felt a grotesque misunderstanding of the senselessness of condition. Yet I have learned some things from my experiences – some good, some neutral, some downright scary.

I have learned that as much as I try to pin my bipolar down, build up strategies to deal with my symptoms, it can contort itself into shapes I never would have believed possible. Shapes that I simply do not know how to respond to, that even Consultant psychiatrists have not known how to tackle.

I have learned that without an advocate (and Tom makes a pretty damn good one) it remains impossible into today’s NHS to get much done by yourself, in crisis, particularly when it comes to trickier cross-border referrals or payment authorisations. No one severely unwell could undertake the badgering required.

I have learned that all the times I thought had been really, truly suicidal were as nothing compared to the cold planning and sense of estrangement from myself and from others during the autumn of this year. This scares me; perhaps there is still worse I have not yet imagined. It reminds me of my second experience of childbirth, something I entered confident in the belief that I had done this before and knew how bad it could get. I remember being unable to stop screaming, and a detached part of me marvelling at the previously unknown scale of the pain. I feel like I have been screaming half the year.

I have learned that after being very resistant to the idea of Home Treatment Team I was probably cutting my nose off to spite my face. It felt like a massive to step to let them into my life – I certainly never dreamed I’d need them twice this year. But they have turned out to be the most amazing resource (with the exception of one or two nurses who need to zip their lips and engage their ears more).

I also learned that after twenty years of steadfastly refusing admission, I am capable of getting to a point where I am prepared to beg for a bed. I didn’t, because Tom took two weeks off to care for me and that just bought me enough time to drag myself some way out of the suicidal pit. But I would have. The sort of stubborn pride I once had about only having friends and family care for me is long gone.

I have learned that by standing up for myself calmly (OK, relatively calmly), it is possible to sometimes challenge and change a psychiatrist’s view of you, and yours of them. Earlier in the year I felt all trust between the Home Treatment Team Consultant and I was broken, that we could never have a therapeutic relationship. I’m not condoning his conduct in the spring; I still think it was awful practice. But expressing that, rather than withdrawing from services as I initially wanted to, has lead to us being able to work together.

I have learned that even if I have to take time out or hand back work – and I have loathed doing this, after working hard to build up my professional reputation – anyone really worth working with will continue to offer you opportunities.

I learned that Tom really will stick by me through anything. I am ashamed now by how meticulously I planned to leave him, and my children, and the world behind. I don’t know if he was just trying to appear as if he took it all in his stride but he certainly did a good job of seeming unshockable. I’m not sure I could have coped with being the one to hear such calculated ideation.

Does any positive learning or the interesting things I’ve done make up for the year I’ve had? I don’t think so. Nothing could make the past year feel like it was anything other than horrific, traumatic. I would not wish the experience of the past twelve months on anyone. So there is nothing left for me to do other than what I always do: look forward with hope and optimism to the New Year ahead. And hope for better.

Posted in Bipolar, Crisis care, Depression | Tagged , , , , , , , , , , , | 27 Comments

No desk to call my own: who exactly has “poverty of aspiration” round here?

Another day, another story about the Department of Work and Pensions (DWP) “workfare” schemes, where people are made to work at any old job for their state benefits, rather than being paid a wage. We already knew that forcing people into this kind of programme does not lead to improved levels of employment; today’s story is even more disheartening. A survey carried out by Mind found that for people with mental health issues, workfare actually makes it harder for them to become “work ready”, since 83% of participants stated that using the programme had actually made their mental health worse.

It is clear that as far as the Government’s ideas about “improving employability” are concerned there is an over-reliance on the idea that simple barriers stop people who are disabled by mental health conditions from working. Pretty much all the DWP schemes I’ve read about assume that we don’t have jobs because of a lack of something that can be fairly easily remedied. A lack of knowledge about how to carry out job searches or put together a CV. Lack of resources, such as an interview suit or travel costs. Or a “poverty of aspiration”, an odious assumption that we end up lying around in bed all afternoon or spending our time at a day centre because we just haven’t any goddamn grit and ambition and need to be sent to work in Poundland to develop these traits.

Except of course I know how to write a CV. I have interview suits (although thanks to antipsychotics I may not be able to squeeze into them now). I have all sorts of qualifications, so yeah, I actually have the ambition thing down, thanks. I job search endlessly, even when in crisis, tormenting myself by looking at posts I’d be perfect for – if only…

Here is a list of things that I still, almost four years since I first went off sick, cannot do:

  • Predict what my mood state might be next week
  • Cope on fewer that ten hours’ sleep a night
  • Get up before 9am without adjusting the timing of my antipsychotics so that I have to go to bed as soon as I’ve eaten (and before the optimal time for taking my lithium)
  • Guarantee to show up at a desk somewhere on regular days at regular times, even on a part time basis
  • Guarantee not to cry all day
  • Focus if I have brain fog or hypomanic distractibility
  • Work more than two full days in a row without showing signs of becoming unwell
  • Commute into central London where all the good jobs are.

I cannot make or will myself to get past these issues and force myself to be “work ready”. Disabled people’s organisations have long made the point that many workplaces do not or cannot make themselves sufficiently enabling, supportive and flexible to support disabled workers. And although I can sometimes work, and often want to, realistically I cannot see any organisation managing me around my bipolar. I do not think it possible that I will ever again have a desk to call my own.

Which is why over the past couple of years I have been self-employed. Being my own boss means that I can decide exactly what I am and am not capable of doing. It means that if I put in two hard days of training, I can block out the rest of the week to recover. It means I can balance work outside the home – like training, public speaking, meetings, field research – with things I can do from my sofa, such as writing articles or reports or reviewing documents. And because everything I do is for a mental health or disability organisation, when I’m really not well enough to complete something or attend something, the various people I work for understand. That doesn’t stop me from feeling terrible when I have to hand work back, even when I’m in crisis.

The downside to my current job is pretty huge: I don’t make enough money to live on, but I make way too much to be within the DWP’s “permitted earnings”. People see me tweeting or blogging or on television and often assume I must be making money from those things. I read somewhere that only 2% of people make money from their blog, usually through advertising, and I can assure you I am firmly in the 98%. Nor do I get paid to speak on the television or the radio, or to blog for a mental health charity. These are all things that fall into the category, “Stuff I do for free in the hope it eventually leads to paid work” and indeed much more paid work is coming in than last year. There is no way, however, that I will hit the tax threshold. I won’t even get close.

This means that without a partner who can pay the majority of the bills, I couldn’t afford to keep doing what I am doing. Even with tax credits it wouldn’t be manageable. I would have to give up doing work that I believe makes a difference, stuff like researching into people’s experiences of mental health services, or training people in Mental Health First Aid, or providing a service user voice at professionals’ conferences. I’d be back to a place where my bipolar would be a hindrance, not an advantage. I simply wouldn’t be able to wait and see if my business could grow to a point where I might be self-supporting ad become a taxpayer again. I would have to stop it all and decide whether to claim ESA this time or whether to go onto Jobseekers Allowance. And then I would have wait for the day when I was summoned on a course to teach me how to get a job, which would most likely be so unhelpful it would make my mental health worse (costing the state more in healthcare).

I know exactly who has poverty of aspiration for mental health service users, and for disabled people in general. And it’s not me.

Posted in Activism, Bipolar, Employment and benefits | Tagged , , , , , , , , , , , , , , | 15 Comments