Christmas approaches

It’s been a long time since I posted. I just don’t feel the urge as much these days; I’ve become habituated to things like hospitalisation and crisis care, therapy and medication changes, so although these things continue to play a prominent role in my life, I no longer feel the need to process them through the medium of blogging. But now it’s almost the end of 2018, and time to review where I’m at. Overall, things have been no worse than any other year, and better than some.

I had expected to be more ill than I have been, given the enormity of the move from London to rural Wales. I’ve definitely had more downs than ups although at times my my mood graph has been very “spiky”. A few weeks ago I started on a low dose of duloxetine, in addition to the antipsychotic, mood stabiliser and thyroid augmentation, and I am now less depressed than I have been. I’ve had one episode of mixed mood which resulted in my first contact with the local Crisis Team and a brief (four night) stay in hospital for my own safety.

In terms of the difference in care between London and Wales, I’ve no complaints about community care at all. I see my consultant less often here, but then I get a lot more care co-ordination. It took me years to even get a care co-ordinator at all in London, and when I had them they weren’t very proactive. Here, I can see my CC once a week if needed, less frequently if I am doing OK. Care planning (largely absent in London) has been very thorough and our appointments are always at least an hour. I feel I talk about almost anything with her, and that I am taken seriously. The crisis team were very good, although I wish I had not had occasion to meet them. I wasn’t overly impressed with the inpatient unit; the staff were nice enough but the lack of any therapeutic activity made the stay miserable.

Last week I had yet another assessment for yet more psychological therapies. The aim is to find something that impacts on my high levels of anxiety, which continue to affect my sleep, my ability to try new things and go to new places, and my ability to enjoy life. I’m waiting to hear exactly what will be offered to me, but it’s likely to involve a group work programme aimed at teaching emotional management skills (I’m not sure how I feel about this, but I’m a bit desperate to try anything that isn’t just diazepam) followed by some individual CBT aimed specifically at tackling the anxiety.

Because I’m really tired of it. It’s exhausting to live in constant fear and with highly intrusive thoughts. It was anxiety, not depression or hypomania, that did for me when I tried to work back in the spring. I don’t want to have thoughts of harming others. I want to be able to have a nice cuddle with Tom without thinking that he might die. I would like to be able to go swimming. It seems a small thing to achieve, but the thought of even finding the entrance to the building fills me with panic. It’s ridiculous.

With the festive season approaching, my CC’s current goal is for me to have as good as Christmas as possible. Traditionally, Christmas has been a time of emotional instability for me; the pattern has often been that I get very overexcited in early-mid December, throwing myself into a whirl of shopping and socialising until I am properly hypomanic, then come crashing down before the day itself (sometimes going up again at New Year). For 2018, I am keen to avoid this pattern,

So once again I am having to be sensible, ugh. Tom’s helping with this, pointing out to me when I might be taking on too much – for example, we have been invited to a concert next Saturday night but in the day I am at my little voluntary job, and doing two things in a day is a bad idea for me at the best of times. I had had half an idea to go to London for four nights in early December to try and catch up with as many people there as possible, but I came to the realisation that this is exactly the kind of thing that leads to hypomania.

I’m swinging between hugely looking forward to our big family Christmas and feeling very apprehensive about it. It’s going to be lovely to have our first Christmas in our new house with its wood burning stove and kitchen range. There’s a space in the living room that I’ve earmarked for a bigger tree than we could have had in London. But I live in fear that the anxiety will take over, or I will end up depressed, hiding away upstairs or sitting at the dining table struggling to keep up the mask. I wish it had been possible for me to have had some therapeutic input this year, but the waiting list for assessment was eight months so 2019 it will have to be.

I don’t have any goals or aspirations for the coming year other than keeping things on as even a keel as possible. I want to carry on with my little voluntary job, supporting the arts locally. I’ve met some great people through that. I want to keep working at Master’s degree, which I started eight weeks ago. Right now I am waiting for the results of my first assignment (obviously, being a total perfectionist, I will have to try not to go into a complete decline if I get anything other than an A-). I really want to get back into exercising, something that brought me a lot of pleasure when I lived in London. Going to the swimming pool would help, of course, as would actually turning up to the Zumba class I went to just the once. I need to go back to yoga; it used to do me so much good. So one goal is to have a little routine through the week with swimming (or maybe an aquacise class), Zumba and yoga built in. With choir practice on a Monday that would really give some structure to my week. And lord knows people are always saying how helpful structure and routine are people with bipolar.

I’m trying not to reach for anything big like getting back to work. A small, quiet life needs to do for me. Even when relatively well, I constantly have to live with the threat of spectacular relapse. Any new day could bring instability of one kind or another. My crises, when they come, seem to do so almost out of nowhere. The idea of living within limits used to chafe, but it doesn’t really any more. There’s a gentler pace of life here in the country, and I’m content to drift along with it. Whether that contentment will last, I don’t know. There’s a risk I will get bored, start looking for work, make myself ill, and go through that particular cycle yet again.

Overall, I am happy. I’m still ill, but I am happier being ill and living here and living with Tom than I would be well and living with anyone else. I don’t know if that makes any kind of sense. If not for the bipolar, I would have a great life, and for that I’m profoundly grateful.

Oh, there is just one thing I really want from 2019 – a cat.

 

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Posted in Bipolar, Christmas, Crisis care, Depression, Employment and benefits, exercise, Hospital, Hypomania, Inpatient care, Medication, Mental health, Mental health services, Mixed mood, Mood disorder, NHS services, psychology, Self-management, Therapy, Uncategorized | Tagged , , , , , , , , , , , , , , , , , ,

The pam fam: the demonisation of benzodiazepines

“Diazepam.” A single word tweet. Regular readers or Twitter followers will know what that meant: I had hit an intolerable level of anxiety which I was managing with a prescribed benzodiazepine. One which I am not only authorised but encouraged to take; my new consultant is very pro-benzo, and thinks that I don’t make enough of the diazepam that he recommends. He’s a bit cavalier, even for me, because I know a lot about benzos, I’ve done a lot of reading and a lot of thinking. “Don’t worry about addiction, or anything like that!” he says. “You should be using them before your anxiety gets out of hand.” This is something I am working on with my Community Psychiatric Nurse.

Not longer after I posted that tweet, a complete stranger replied to me: “One of the pam drugs. Be careful.”

I actually didn’t need to have it splained to me that diaz is one of a family of pams. I’ve had a date with a few of them. Back in my student days I was prescribed temazepam but didn’t think I needed it, so my friends and I took it recreationally, just to see what would happen (what happened was that we all fell asleep. Wild times). Once I was given lorazepam in hospital. I was quite excited by this, because all the reports I’d heard from other people who find benzos helpful is that loraz is the really effective pam. I was rather disappointed that it appeared to me to do nothing at all. Years ago I tried alprazolam (Xanax) once when it was given to me by a friend. It did nothing for my anxiety, but it did make my legs feel like they were not longer attached to my body.

The only pam that is really my friend is diazepam.

Now, I am not arguing that benzos are an ideal solution to my problems. All the guidance out there (see this Royal College of Psychiatrists easy read version) suggests that they shouldn’t be used daily, or if they are they should not be used for more than a few weeks at a time. But diazepam really helps me. After half an hour or so, the panicky feelings and racing, anxious thoughts subside, I can think, breathe, sleep and I no longer feel desperately overwhelmed and agitated. Anxiety, you may say, meh. No one ever died of anxiety, right? Except my most risky mood state is what has traditionally been termed mixed mood (or “mixed affective state”). Mixed moods combine elements of both low and high mood, so are difficult to manage. The DSM V diagnostic manual changed things up a bit by recommending identification of predominant mood, then noting features from the opposite pole. So I guess you could say I have depressive episodes (low mood and especially anxiety) with features of hypomania (agitation, racing thoughts, goal directed activity [obsessive researching of suicide methods] and sleeplessness). However you define it, it’s risky. While the very low energy levels associated with a classic depressive episode can have a protective factor because I lack the mental and physical energy to carry out plans, when my mood is mixed I have all the suicidal ideas plus the energy levels to do the job. It’s then that I end up in hospital.

I recently read a 2018 review of benzodiazepine use in bipolar that looked at alternatives. It considers antidepressants, but recognises that they can cause mood switching (from depression/anxiety to hypomania/mania) or increase the rapidity of cycling. It’s been recently suggested to me that I start duloxetine to improve my mood and diminish anxiety, but as a rapid cycler who has mood-switched on commencing ADs in the past, I am nervous and don’t know that I can go down that road. Moreover, the AD recommended in the article is fluoxetine, one of my past mood-switch culprits.

A couple of antipsychotics were recommended by some studies, but I was on quetiapine, one of the two recommended, for years without it improving my anxiety. I refuse to take the other suggestion, olanzapine, because of its reputation for even worse gain than that I sustained on quetiapine. If I’m going to try to stay alive, I’d like a functioning metabolism, thanks. The review doesn’t mention pregabalin, a common drug used to treat anxiety, but it’s twice been prescribed for me by consultant psychiatrists with no effect. According to the review, evidence appears to be equivocal as to the effectiveness of CBT for anxiety in bipolar and anyway, I’m on at least an eight month waiting list just to be assessed for psychological therapies, with no guarantee that I will be offered anything.

So what is to be done with my anxiety? Here are my choices. I can use diazepam on a PRN (pro re nata – as and when) basis to manage day to day anxiety and try to stop it building to crisis levels, increasing the dose to 3x 5mg a day when actually in crisis; I can try an AD and risk mania; or I can use – nothing. That’s all there is left to me. Diazepam has in the past been all that’s standing between me and a suicide attempt, while rapid cycling mood switching after starting an AD led to a suicide attempt. So the risks of diazepam use are that if I don’t use it carefully I could be come addicted. The risks of non-use of diazepam are that I could kill myself.

Apparently that’s not enough of a deal-breaker for some people. I understand that there are a lot of people out there who feel that they have been harmed by benzos, that they were not properly informed of the risks, but in some people those negative experiences get turned into a kind of crusade to prevent people like me from using any pams. “It’s my job,” (to give unsolicited anti-benzo advice) another Twitter user informed me today. It’s not their actual job, because they’re not a doctor or an addiction counsellor. They’re a crusader. Benzo use is made into a moral issue in a way that use of other classes of psychotropic drugs is not.

Some healthcare professionals reinforce the view that Benzos are Bad; this can be especially difficult for the service user when not everyone involved in their care is singing from the same hymn sheet. I was once told by a nurse on a generally pro-benzo Home Treatment Team that I shouldn’t use them as a crutch. Historically and currently I have faced a battle with GPs to try and get an actual prescription for meds recommended by a highly trained and qualified specialist psychiatrist. There is a sense that benzos are to be withheld because they will be “misused”, and that following consultant advice would be giving them out like Smarties. While I admit I misused the temaz when I was about 20, and OK I shouldn’t have taken that one Xanax, that was all years ago and I am a responsible, careful user of diazepam. I don’t take it every day. I try not to take it at the same time of day when I do, so I don’t develop habitual usage. I never, ever exceed the maximum dose of 3x 5mg/day, not even when it may be the only thing between me and throwing myself in front of a train because there is no hospital bed available for me.

Every time I try to obtain the diazepam my consultant has recommended it’s made difficult for me. I am made to feel like a “drug seeker”. There is an implication that I should be able to manage without them, and a lack of acceptance that nobody can teach me the skills to do that right now. Complete strangers feel they have they have a “job” to tell me to “be careful”. Yet since the issue blew up on Twitter, my timeline is full of people saying how useful they find these drugs, how they too feel like benzos are the last line of defence between them and disaster. If we’re not to use them, then give us some meaningful alternatives. In the absence of any better solution, don’t demonise our choices.

Posted in Bipolar, CBT, Cognitive Behavioural Therapy, Depression, Hypomania, Mental health, Mental health services, Mixed mood, Mood disorder, NHS services, Pillshaming, Primary care, Psychiatry, Rapid cycling, Self-management, Social media, Stigma and discrimination, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , ,

Roll with it

This morning I managed to shave my legs. It’s the closest to achieving anything that I have reached in days.

Because here am I, depressed again. I’m kind of waiting for my CPN (Community Psychiatric Nurse) to say “I told you so” about the lithium when she comes round tomorrow. Only it’s not the lack of lithium in my system, because it’s exactly what I have lived through who knows how many times, maybe a hundred  given what a rapid cycler I am. On lithium and off lithium, on antidepressants and off them, on one antipsychotic or another, I get depressed. Obviously I also get hypomanic, but right now that seems like a dream. I’m beginning to wonder if any of the meds actually do anything and whether I am wasting my time dutifully downing them morning, evening and night.

I’m very much in a place of not having hope about anything or being able to care about anything. I have a place reserved on a Master’s degree course for October and I had really felt that it was the right time to step back into academic life. Because studying is something I’m good at, something I find rewarding which might have made me feel OK about myself, and doing it by distance learning over three years ought to have meant that I could pace myself and allow for episodes. Only now I don’t care, I can’t make myself take the step and register and pay, and I can’t see how I could possibly manage it around my bipolar anyway given that I have basically abandoned the free preparation for postgraduate study course I was, up until recently, enjoying. And now I’m worried about the money, because if I am not awarded a postgrad student loan I will have wiped out all my savings. I think I meet the criteria, but who knows what reasons the Student Loans Company might find to disagree.

I was also looking into how I might be able to help things along financially by returning on a very part time basis to the kind of self-employment (mental health training, consultancy, freelance writing, research etc) I used to enjoy, and I gave considerable thought to how I could market myself, what I would need in terms of a website, what my CV should showcase and so forth. I even got some professional pictures taken to go on said website. Only now, guess what, I can’t make myself care and these preparations, like those for the Master’s, lie abandoned. I feel stuck, yet I don’t have the energy or the interest to do anything to move myself forward or have anything purposeful in my life. I’ve had a couple of good days in the last two weeks, but mostly I have eaten, slept, cried and felt guilty, over and over in a loop. When I am able to do anything it’s mostly something passive like watching TV, although I am also tweeting too much to alleviate the boredom. Because God, apathy is boring.

I have never really “got” the #sicknotweak hashtag because I have never felt or been told that I am weak. I have frequently, however, felt lazy and that is how I feel now. I lie on the sofa, half waking, half sleeping, not even thinking about much except how awful I feel, and I’m aware of Tom bustling about doing what is needed to keep the house and the garden running. He seems to be able to put laundry out on the line and do the washing up and manage the household accounts and make bread simultaneously, while I feel like a huge waste of space, my body lumpen on the sofa, contributing nothing.

One of Tom’s favourite phrases is that I need to learn to “roll with the punches”. He has said this to me repeatedly during every depressive episode, and I am still not sure I fully understand what it means. It’s a bit like the offside rule, I’m willing to learn and I think I’ve almost got it but then no, I still don’t know what he’s on about. Apparently it’s a boxing metaphor, and means something like: the more you resist, the harder the punches will feel. You’re supposed to roll or turn your head or something to let them glance off you.

But how? What does this mean for me, for me right now? I ask every time, and every time he patiently explains. It means, he told me again today, accepting that I am not well. It means not beating myself up about the fact that I can’t do things, it means rolling with the fact that this is how I am today, this week. It sounds almost Buddhist in its focus on acceptance. In terms of being a rapid cycler I guess it means accepting the fact that my mood fluctuate very frequently, that having one or two brighter days doesn’t mean that I won’t be back in the grip of depression the next. The flip side of this is supposed to be consoling; conversely just because I have been depressed most of the last fortnight, this doesn’t mean that I won’t regain equilibrium, or even be hypomanic, next week. Or tomorrow.

Even when I kind of grasp what he means, though, I don’t know how to do it. I don’t know how to not feel guilty about the fact that he is doing almost everything, and I am doing almost nothing (I say almost, because I did manage to make an easy dinner last night). I don’t know how not to feel shitty about my unwashed hair and my blanket nest on the sofa and my near zero progress on my Apple Watch movement tracking and my poor food choices. I don’t know how not to feel like a failure about essentially dropping out of my Master’s degree before it has even started.

I thought blogging about depression might be cathartic, but now I don’t know. Maybe analysing it like this is resisting the punches?

 

 

Image shows two men boxing. Image by Chris Feser (https://www.flickr.com/photos/feserc/) sourced from Flickr, commercial use and modifications permitted.

 

 

 

 

Posted in Bipolar, Depression, Mental health, Mood disorder, Rapid cycling, Uncategorized | Tagged , , , , , ,

So long, lithium

I can tell you pretty accurately when I started taking lithium, because I blogged about it (wow, I have been blogging for a long time). In fact, that post tells me that it’s very nearly seven years to the day. If you checkout out you’ll see that I was very apprehensive about lithium, although I was amused to discover that it once provided the “up” in 7 Up. I was worried about all sorts of things, the blood tests, potential renal or thyroid function damage, the risk of toxicity. What I never worried about was the possibility of it… not working.

There has been no time in the intervening seven years that I have thought for one minute, “I think the lithium at least does something.” It seemed relatively easy to get my blood serum level to a therapeutic one, although it took quite a high dose (1.2g) to achieve this, but considering it remains the “gold standard” treatment for stabilising mood I have been consistently disappointed in lithium’s failure to have any effect. I have, at times, felt the lamotrigine improve my functioning. Lurasidone has been a game changer. But lithium? Nope. I don’t even really have any side effects. I felt very nauseous after taking it when I first started, but that was quickly solved by learning to swallow it with a starchy snack. So overall, I don’t feel any good effects, and I don’t feel any bad effects. What I feel is… nothing. And in recent years I have been wondering why I am still taking a drug that I feel does nothing, yet could be secretively eroding my kidney or thyroid function.

It’s been a relatively low-maintenance affair really, considering all my worries about the blood tests. These quickly settled down to every three months. It wasn’t a faff or a hassle – until my recent stay in hospital. My bloods came back with a serum level of 1.0mmol/L (against a usual 0.8) and suddenly everyone was in a flap, the hospital doctors, my Community Psychiatric Nurse and, especially, the Crisis Team. A Royal College of Psychiatrists summary of various guidance documents suggests that 1.0 is at the very top of the target range, but not into toxicity territory. I felt fine. I had no worrying symptoms. But the Great Toxicity Flap of 2018 was on.

I was immediately advised to skip a dose, and from then on drop the dose by 1/3 (I had been taking 3x 400mg, so that meant a drop from 1.2g to 800mg). I had a long talk with Tom about where to go from there. It seemed like the time might actually have come to stop taking it all together, because the Flap had reminded me that there were potentially serious costs against (from my perspective) zero benefits. Tom was all for me just stopping then and there, but I did some research and was a little worried about rebound mania. His view was that I have had endless crises and four hospitalisations on it, so if I had another crisis we would never know whether it was caused by stopping the lithium anyway. But I remained cautious, so I’ve been tapering off over several weeks, and tonight – tonight! – will be the final time I take the final dose of 400mg.

I wouldn’t say I was actively doing this against medical advice. Nobody has said, “Charlotte, I strongly urge you to keep taking it,” but my team would prefer for me to do it collaboratively with the psychiatrists. I might have been more inclined to do so had the psychiatrist actually turned up to my last scheduled appointment, but he didn’t, so I left telling the nurse that although I too would’ve liked a shared plan, in the absence of any input I was going to go ahead anyway. My CPN is twitchy and has booked me an appointment with the Consultant, but I can’t get in to see him for another month. In the interim she is trying to get me in to see the no-show guy (I assume he’s a registrar, although I don’t think I have actually been told his grade) but no appointment has been forthcoming as yet.

My blood serum whilst on 800mg came back as 0.5, at the lowest end of the therapeutic window, and I didn’t feel any different. I haven’t felt any different during these last couple of weeks on 1/3 of the original dose. I did say to my CPN at one point that I don’t rule out going back on it if I begin to get ill, but then as Tom says, why bother? I got ill all the time on it anyway.

So. The end of my decidedly lack-lustre relationship with lithium. I know it’s great for some people, I know it saves lives, but it won’t save mine and I’m not a big believer in putting heavy duty drugs in my system for no positive outcome. The only thing that has held me back from dropping it years ago has been fear (mine and clinicians’) that things would get worse without it, but there is no worse to go than the bad times I have had on it. I’ll down the last pill tonight – with  my starchy snack, of course – then it’s so long.

 

Image shows a supermarket shelf full of two litre bottles of 7 Up fizzy drink. Image by Mike Mozart, located on Flickr and free for commercial use.

Posted in Bipolar, Medication, Mood disorder, Side effects, Uncategorized | Tagged , , , , ,

Zero hours

So next week I have to go to the GP to ask for an extension to my sick note. After initially signing me off for six weeks they gave me another certificate for four weeks, but this time I have to have a face to face before they will extend it. This means that it’s been ten weeks since my disastrous attempt at working, and in that interval I have been under the Crisis Team, hospitalised, under the Crisis Team again and am undertaking a medication change. I hope that’s enough to persuade the doctor to officially sign me off for at least another four weeks, but if it isn’t, I’ve been thinking about how I can possibly explain to him why I cannot do a job.

The thing is, I already have a job. It’s called “Having a Severe Mental Illness”. It’s not a catchy job title, and it’s not glamorous, but there it is. I wasn’t interviewed for this job but now I’m in it, no one will let me resign.

This job is pretty much a zero-hour contract. I have to be available for its demands 24/7, 52 weeks of the year. I do not know when I will be called up for “duty” as an actively sick person, but when I am, I have no choice but to go into the office. While I’m at the office, I won’t be able to do anything else but work. I could be at work for a few hours, or every day for a couple of months. This makes it very hard to plan any alternative career. Really, I would love to get a proper job, but last time I tried my old work came calling after a few days, pissed off that I had tried to seek alternative employment. I would love even more to be able to do some study, a higher degree maybe, but would work let me, even if I did it part time and flexibly?

Zero hour contracts don’t make for a good social life. I can never fully enjoy myself for fear that work will get in the way. I am scared to have houseguests – what’s the point in them coming if I can’t spend time with them because I am called in? Is it worth getting expensive concert tickets, knowing that on the night of the gig I might have to be in the office? Booking a holiday is a particular gamble. I might try and schedule time off but this is always a fragile arrangement and on numerous holidays the call has come and I’ve had to clock in.

I am exceptionally lucky that my husband has a stable income which allows me to even contemplate these things. My financial reward for being constantly on call is Personal Independence Payment (PIP) and Employment and Support Allowance (ESA), but I don’t just automatically get paid for showing up at the coal face; I have to prove over and over again that I am forced to do the job. You could resign, people tell me, if only you dd the right thing. Do more yoga. Eat the right foods. Stop taking the zombie meds they are feeding you. Whatever there is out there, I have tried it (except the Ancient Art of Molten Russian Healing Metals Performed in a Cave in Australia, which was once proposed to me, probably my own fault I can’t get out of this contract now for not taking the person up on that one).

So here I am. Blocked from career progression.  I have been in the job since school days, it stopped me doing that higher degree when I was a young graduate and may stop me again now. Any chance at fun is overshadowed by the fact that I might never get to see the band, take the flight, eat the lunch. The job has taken many precious hours away from my time with my children. I am constantly at its beck and call. And every month I have to prove that it exists.

Posted in Bipolar, Crisis care, Employment and benefits, Mood disorder, NHS services, Primary care, Self-management, Uncategorized | Tagged , , , , , , , , , , , , ,

Warehousing

During my first admission, I was bored. Really bored. Most of the time I sat around talking to other patients. In the absence of communal seating areas not dominated by a blaring TV, we sat on the floor in the corridor. We talked about anything and nothing, watching the micro dramas that played out as ward colleagues vented their frustrations at being refused a smoke or a pair of earbuds, at finding that their phone had not been on charge after all, at being asked to provide a urine sample. I quickly learned that the only way of alleviating the boredom for even a short time was to participate in any and all activities on offer, no matter how much I might usually scorn them.

I went to music group and experimented with percussion instruments I had never seen before. I went to craft sessions, which was like primary school except we weren’t allowed scissors. On Mondays I went to a gentle cardio class, and on Fridays I went to yoga. Once I was allowed to go to another ward for Tai Chi. I swallowed my hatred of the term and went to “recovery group” (I say group, no one else turned up). When it ran, I went to “healthy snacks” which had somehow, much to everyone’s delight, morphed into decorating cookies and making milkshakes. I did try to go to creative writing but it only happened once. All of these activities were organised by the tireless Activities Coordinator because the ward was “between” Occupational Therapists.

I didn’t know much about OT as a profession before I first went to hospital. Occupation in this sense has nothing to do with paid work, but with occupying time in a purposeful, meaningful way. According to the Royal College of Occupational Therapists, OT “provides practical support to empower people to facilitate recovery and overcome barriers preventing them from doing the activities (or occupations) that matter to them. This support increases people’s independence and satisfaction in all aspects of life.”

I appreciated that there was an effort to give us some purpose, but still I was bored. I did not feel that there was enough happening to occupy us to the degree that we would be helped to recover. Mostly there was only one activity for perhaps an hour a day, although if we were super lucky there might be two; sometimes, especially’ at the weekends, there was nothing. In my view, in order to be “occupationally theraped” we needed structure and purpose of something each morning and something each afternoon. For two weeks out of the five that I was there we had almost no activities because the Coordinator was on leave. I moaned about it to Tom and at the ward forum meeting attended by the Consultant and Ward Manager.

When I was in my next unit, I felt vindicated because there I found the structure I was looking for. During my couple of weeks as an inpatient I took part in more, and more imaginative, activities:

  • Singing group (twice a week)
  • Spirituality group
  • Art
  • Card making
  • Time at the gym (which was actually pretty decent)
  • “Nail bar”
  • Music appreciation group
  • Breakfast group (where we cooked bacon and eggs for ourselves)
  • Baking group
  • “Giant” games (Jenga, Connect 4, etc)
  • Relaxation group

I was still bored a lot of the time, but overall I felt both more occupied and more “theraped”. I went out of my way at ward forum meeting to let the OT and his assistant know how much I appreciated the range of the activities. He seemed really gratified.

When I was admitted to my current unit a week and a half ago one of the few things I was cogent enough to ask was, “What sort of activities do you have here?” “Oh, all sorts!” said the nurse checking me in. “Anything you like.” I was really pleased to hear this; I didn’t know how long I’d be in, and I knew how important it was to my recovery from a crisis to have that structure and purpose. The next day, there was no announcement or sign about activities, so I asked a nurse and was told that an OT would let patients know what was happening.

It was a short and easy message to convey. What was happening was: next to nothing. There was an OT room which was not always staffed, and I made sure that I got in there as soon as it was open. I met the OT and her assistant, and asked what there was to do. I was invited to contribute to a mosaic started by prior patients, although the OT explained apologetically that they didn’t have many mosaic tiles any more, so I might want to do some grouting (um, not really) or use some beads. It was hard to get the beads to stick in the adhesive; mosaic tiles are specially designed to adhere. I just about managed to use some alphabet beads to spell out “Quirky is cool”, which was the only vaguely meaningful thing I could think to make out of the letters I had.

I asked what else there was to do, and there were a lot of art materials, but everything was self-directed. There was no organising expertise or suggested theme to motivate the user. I grabbed some brightly coloured strips of Plasticine thinking to model some animals, but despite trying to moisten it, it was too old and too prone to cracking to be useable. I drifted away.

I did appreciate that the OTs were doing rehabilitative activities with individual patients, helping people shower, cook, etc, acquire or reacquire important living skills. They did assessments at people’s homes to see how those skills would be used in practice. A friend of mine could not wear her shoes because her feet were too swollen, and the OT assistant kindly went to her house to find her slippers for her. They were doing good work, but all with individuals.

So what did the rest of us do? Those that could, read – one good thing about the ward was the range of books. There was a surprising amount of classic Russian literature. I can’t help wondering who left that behind when they were discharged. Some people watched telly, but mostly it talked to itself, it was too difficult to find something that everybody wanted to watch. I did watch Love Island a few times, because that won the most number of votes.

In general, people were talking to each other. Yes, that’s a good thing, but it was very inconsequential because people’s stays were short and meaningful relationships were hard to achieve. The activity most commonly engaged in to alleviate the dullness was smoking. Two patients told me that they had been non-smokers when they were admitted but had taken up smoking because of the boredom. I’m pretty sure this isn’t the kind of physical health outcome the Health Board are looking for.

Without meaningful activity designed to produce a therapeutic environment, what is the purpose of a ward? It becomes nothing but a warehouse, a place to contain people until they are no longer a risk to themselves or others. That’s it. Beds instead of shelves, but otherwise just a storage facility. By day three of my admission I was desperate to leave. Not because it was nasty, the staff were lovely, with very few exceptions the patients were nice to be around, there was a lovely garden (for smoking, of course). The food was bad, but it wasn’t dire, and you got a choice. But it was so boring. I didn’t want to be warehoused. I wanted to be occupied at a time when I found it hard to occupy myself until the danger had fully passed.

I know now that when I was complaining on the first unit, I had no idea that I was actually lucky. Since tweeting about the total lack of structure on my last ward, quite a few people have come back to me along the lines of, “Sounds like the ward I was on.” This is a widespread problem. I’m going to write to the Health Board expressing my concerns that any ward should be used as a warehouse and giving my perspective on what it is like to be in a non-therapeutic ward environment. I announced this plan to my Community Psychiatric Nurse, who I think was slightly amused, but I’m very serious about sharing my views. We’re vulnerable people, we’re not boxes, and we deserve better.

Posted in Crisis care, Hospital, Inpatient care, Mental health, Mental health services, Mood disorder, NHS services, Recovery, The arts, Therapy, Uncategorized | Tagged , , , , , , , , , , , ,

Revolving door

TW: references to suicide methods

I remember the first time I was in hospital I was sitting on the floor chatting with my friend Phil, when he spotted somebody he recalled from a previous admission. “There’s Paul!” he said, looking really pleased to see him. “Great guy. Lives with his mum. Voice hearer. Whenever the voices start telling him to kill his mum, his CPN (Community Psychiatric Nurse) gets him in here for a few days, they have a little look at his meds, three days later, job done and he’s home.”

I felt sad for Paul. It didn’t seem like much of a life, an existence punctuated by admissions, although I admired his relationship with his CPN and his ability to spot when things were getting risky.

Today, as I was discharged from hospital for the fourth time in two and a half years, I reflected that I was becoming something like Paul. I have to accept now that when I get into a mixed mood state with intrusive, “loud”, relentless thoughts of ending my life, hospital is the best way to make it all stop and give me my head back. A week ago I couldn’t rest, couldn’t enjoy myself, couldn’t focus on anything other than how to run away from Tom and take my life. Now I feel completely normal.

I tried to manage things in the community. I was brave, and confessed to the overdose plan. Tom took charge of my medication boxes. I was brave, and confessed that I had extra boxes he had forgotten about. Then, as I always do, I kicked myself for giving up my means to my end. My CPN was involved in the decision to have Tom hide my meds, but told me that she would be on annual leave the following week.

An overdose now less possible, my whirring brain went on to the next thing. Having thought so much in the past about the train tracks, my mind went there next, especially as around last week I had been, ironically, very triggered by this Samaritans video on preventing railway suicide. I rang my CPN on the last working day before she went away and told her that things were “rough and rocky” (those were the words I believe I used). I don’t think I told her the half of what was in my head, but she was concerned enough to refer me to the Crisis Team.

The Crisis Team were a pleasant surprise. When we moved to Wales we were pretty much told that there was no home treatment as such, and that if I got into a real crisis situation I would have to go to A&E. Yet there they were, within hours of the referral, travelling in pairs and ready to visit twice a day if needed. I wasn’t 100% honest with them at first. My mind had moved on again. I lived in London when I had these kinds of plans before, but now we are in the country where the trains are slow and infrequent and it would have been easy for Tom or the Crisis Team to call the police and track me down. So my next plan was to take a very circuitous rail route to a big city and do the job there. I spent a lot of time thinking about how I could keep changing up my route to evade the police.

By this point I was also into the practicalities. Tom and I went for a lovely country walk but in the back of my mind I was thinking about how to leave him my bank and life insurance details, the contents of the notes I would leave for my children, my social media passwords so that he could notify my family and friends. I couldn’t focus on anything. Being with those thoughts was like standing behind a waterfall; the noise of them drowned everything else out, yet I remained curiously emotionally untouched.

If it wasn’t upsetting, though, it was tiring. Boy, was it tiring. The constant plotting and planning and evaluating was absolutely exhausting and in the end it was the exhaustion that drove me to full disclosure. The Crisis Team and I had been having the “Do you think you should be in hospital?” conversation for a couple of days, but on Sunday morning I had come to a point of such utter weariness that I decided that if they offered me admission, I would say yes. I would even tell them the full extent of my planning. I loaded up a couple of books onto my Kindle and charged my wireless headphones. Just in case.

Once everyone knew exactly what I was thinking, things moved very fast. One Crisis Team nurse called ahead to the ward, who said that they didn’t have a bed for me but would accommodate me in a visitors room until someone else was discharged. I packed as quickly as I could, desperately trying to remember my own advice in this BBC video. Everything felt very unreal. We got in the car and set off, following the Crisis Team to the hospital, and I was suddenly very anxious that I might be doing the wrong thing.

When we arrived, I was convinced that I had made a mistake and told everyone that I had changed my mind. Tom and the staff tried to convince me to at least stay one night; it was implied that now I was there, I would not be allowed to go again. “The Crisis Team are as worried about you as I’ve seen them in a long time,” said the nurse in charge. I cried and cried because it seemed there was no going back. When I saw that there was no actual bed in the visitors room, just a mattress on the floor, I cried harder.

But do you know what? It fixed me. Like all three of my previous admissions, being in hospital took the obsessive thoughts of absconding and/or killing myself and chucked them out of the window. Once in an environment where I can’t carry out my plans, they wither and die. Yes, tragically, people can and do take their own lives while in hospital, but it is much, much harder and only certain methods push my obsessive buttons. Again, I could try to abscond, but if being picked up the police was one of my main concerns, that wouldn’t be the smartest of moves.

On Monday, I felt so much better. I could think again, breathe again. I got my own room. On Tuesday I cried a lot, which I take to be a massive release of pent up tension. On Wednesday (yesterday) I was a tiny bit hypomanic, and woke up desperate to go for a run in the garden. This too, I have learned, is my usual pattern. By the afternoon I felt like… me. Again. I felt so well that the boredom of the ward really began to chafe. I have been on the three mental health units now, and without a doubt this one had the very least to offer in terms of ward activities. Two people told me that they had gone in non-smokers and taken up smoking just to counteract the boredom. I’m pretty sure that’s not the health outcomes the NHS is looking for. I began agitating for discharge and it was agreed that if I went out with Tom yesterday and felt OK, I could go home today.

I did feel OK. I felt supremely normal. “I feel,” I said to Tom, “that I have come back to myself.” He kissed me. I had come back to him too.

Tom, the ward psychiatrist and my favourite Crisis Team nurse were at my discharge meeting today and we discussed what it was about admission that had been beneficial. As a group, we drew the conclusion that in crisis, short admissions are, for me, the way to go. That perhaps I should even be asking for a hospital bed earlier, once I know things have become really risky. I never would have thought of myself as a person needing multiple admissions, but here I am, four under my belt, and all four did the job. Maybe I am Paul, and maybe Paul is an OK person to be?

 

 

 

 

 

Posted in Bipolar, Crisis care, Inpatient care, Mental health, Mental health services, Mixed mood, Mood disorder, NHS services, Psychiatry, Suicidal thought, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , ,