purplepersuasion | Mental health blog by a service user with bipolar disorder.
Charlotte Walker’s Purple Persuasion is a mental health blog by a writer who has been dealing with bipolar disorder for more than 25 years. She writes, “While I want this blog to have a wide reach in order to connect with other people in similar situations, it remains my space for exploring what it is like to have a serious mental illness.”
Trigger warning: this post contains descriptions of suicidal thoughts, including methods. Please don’t read on if you are feeling at all vulnerable.
I want to run. I am desperate to run. When I wrote my last post my idea was to run from Smalltown to Biggertown or Bigtown, and from there on to The City, at least. Cardiff, better. Maybe even Bristol. I knew I would have to be on the run for several days to amass enough over the counter meds to successfully OD on. I thought about the need to keep my phone off so I couldn’t be tracked, the need to use hotel computers and printers to obtain maps. I thought about returning to the same pharmacy several times in one day, changing my appearance so that I had a different noticeable feature the same time. I was that woman in the bright red lipstick. I was that woman in sunglasses. I was that woman with the fringe, with the chignon, with the hat. I thought about dying my hair in a hotel room. I have watched too many Jason Bourne films. I have watched too many episodes of The Americans.
Now there is nowhere really I can run to. I cracked and confessed to my Community Psychiatric Nurse that I had secretly withdrawn £300 in cash and moved all of my student loan money into my current account for easier access. I let her know that I had booked a hotel room for the first part of my plan, but that I had been thwarted because Tom hadn’t let me out of his sight around the time I had thought I would be able to bolt. She said that I would have to tell Tom, and that she wanted me to do it myself. because we had reached the stage where risk outweighed confidentiality. She made it clear that she was very concerned about my risk level. I sensed I had two choices: cooperate, or find myself going down the Mental Health Act assessment route.
So I went and got the cash and I handed my debit card and my credit cards and my bus pass and I gave it all to Tom. Knowing that I had been using my phone to book hotel rooms, check train times and taxi numbers and minimum lethal doses, I was forced to surrender my phone and my laptop. I negotiated a quick trip to Twitter to let people know what was happening; I had been talking in a pretty worrying way and I feared that sudden silence would lead people to suspect the worst. We agreed that I would be able to check for texts and emails twice a day, under supervision.
Unsurprisingly, this is the point that the Crisis Team got involved.
So now I can’t run to a city. I can’t even run to Biggertown. I can’t call for a taxi and even if I could, I couldn’t pay the driver. I feel infantilised. I had to ask Tom for money to buy his own birthday card. But it’s warranted, it’s all warranted, because even as I entered the gift shop I was wondering if there was a back door I could escape through. Because even though there is nowhere to run to, I am still desperate to run. I look for every opportunity to get away, but there are precious few. I am obsessed with the idea of running away at night while Tom is sleeping. In my desperate panic to escape, my brain is starting to play with methods I have never before considered. I keep thinking about ligaturing. If I could get to the coast (which is ten miles away), I could fill my backpack with stones and walk into the sea. I know that sounds an unlikely method, but I knew someone who took her life that way.
Last night I went to bed so, so miserable because I couldn’t stop the desire to run up the hill into town and then away. Suppose I did get away during the night, where would I go, in the dark, unable to leave Smalltown without walking for hours? As a Crisis Team nurse pointed out yesterday, I would be vulnerable, a woman alone at night, bringing up yet more issues for them to be concerned about. To compound things, I have thought about hitch-hiking. I seem to be obsessed with placing myself at risk. And what would happen? The police would be called and there would be a hunt for me. Once found – and there are only so many directions I could walk out of a town so small – I would be detained under s136 of the Mental Health Act, which would give the police the power to take me away to a “place of safety” until I could be further assessed. I would probably end up sectioned, and as my CPN warned me the other day, it might not be the local ward in Biggertown, because there might not be a bed. It might be a ward I do not know, in Bigtown, or The City, or failing that “anywhere along the M4 corridor”.
Do I want any of that? Of course not. And anyway, what would I be running from? A fantastically loving husband, a beautiful house with a garden we are putting a lot of work into, a welcoming community. Would I, were in my right mind, want to abscond from that? Again, of course not. Therefore I am not in my right mind, and I know it.
A depressing side effect of being a seasoned blogger with a fluctuating condition is that the archive makes it very clear that I go around and around, having better times, then having groundhog day times when it’s clear that I lived though similar crises to the one I find myself in now. I remember that almost exactly two years ago I was in a situation of extremely rapid cycling, moving from anxiety, emotional pain with a desperate desire to be in hospital, hypomania and a calm sense that there was nothing at all wrong with me, all in the space of a day. I’m in a very similar situation now, although the shifts are not quite as quick. I seem to be alternating between anxious/depressed and “normal”/elated.
Yesterday I refused the offer of a Crisis Team referral from a concerned Community Psychiatric Nurse (CPN). Tom was confident that he could manage me at home over the weekend and we would see how things were on Monday. In the night, when I could not sleep and I could not calm my brain despite diazepam and reading and a relaxation app, I regretted my decision not to involve the CT, because as long as I remain in the community, I feel at risk.
The current state of play is that part of my brain wants to kill me. Its first order of business is to find a way for me to abscond from Tom’s care and make my way to the nearest big city where I can disappear. Its second priority is to visit enough pharmacies to stockpile enough over the counter meds to poison myself to death. Its third priority is to take those meds in an anonymous hotel room. Always with the hotel room! I bet if you put that in as a search term on this blog you would get a lot of hits.
Tom’s plan is to keep me on 1:1 observation. 1:1 or arm’s length obs means, in a hospital context, that you are never left alone. You can’t shut yourself away in your bedroom because someone is always in your open doorway, even when you are on the toilet (assuming you are lucky enough to have en suite, otherwise they follow you to the shower room or the loo). You don’t even get to shut your door while you are trying to sleep; someone watches over you the whole night – although I know I am not the only one who has seen nurses asleep in their chairs while on duty in the middle of the night. Tom is also right beside me all day and all night and, as on a ward, he is making sure I take my meds.
I am allowed to bath and go to the toilet in peace, but Tom’s not going to stand for me leaving the house alone, nor is he going to leave me at home alone, unless there is absolutely no way I can run away from Smalltown and catch a train to The City. This morning I negotiated a walk into Smalltown by myself but to do that I left my bus pass, bank card, cash, phone and Apple Watch, taking only a £1 coin to buy a can of Coke. There was nowhere I could do and nothing more nefarious I could do with a quid.
Because I am not trustworthy. Where there is cash, there could be taxis. Where there is a bus pass there is the means to access a station with more regular trains to The City. Where there is a debit card, there could be train tickets, hotel rooms, pharmacy payments and things to make the pills go down easier. I simply cannot stop thinking this way. Tom offered to take me to the local rugby match this afternoon, but I know that I couldn’t be trusted. One trip to the ladies, coordinated with the bus timetable, would mean an opportunity to slip off.
Of course, here in rural Wales I have to be a bit more creative than in London, where there are night buses and multiple suburban back roads to the station. Much less chance of being discovered. Unless I timed things really well or took a taxi it would be very easy for Tom to drive to the station, or the next station, or the next bus stop and simply bring me home. Presumably if he didn’t find me, he would call the police, and if I hadn’t made it to The City I would be at high risk of being detained under s136 of the Mental Health Act and taken to a “place of safety” God knows where. Maybe a police station. Maybe a hospital miles from home.
There is a lot to risk in trying to sneak off and yet part of my brain insists on playing out every scenario, virtually all the time. I have to be incredibly focussed on something else not to be working out new angles, new opportunities. I have my colouring book out (what a good, mindful girl) and I’m working on a design that’s so complicated I can only do so for about ten minutes before my concentration reaches its limit. But still, that’s 10 minutes. I’m OK while I’m reading in the bath (and I am taking a LOT of baths) but I struggle to read just on the sofa. I might get a jigsaw puzzle out. The only time I ever do them is when I’m poorly.
So if that’s part of my brain, what’s the other part doing? Well, it’s trying to keep me alive. It’s encouraging me to be honest with Tom about my thinking, even though I know it must be hurting him. It encouraged me to get in contact with my CPN to say that I actually needed to see her more quickly than 16 days away, which was when we had originally agreed to meet each other – our first four week gap! Because I was doing so well! Haha. She came to see me on Wednesday, and again yesterday (Friday), will ring me on Monday, and is coming again on Tuesday. If I feel the need for the CT before then, my only option is to go to A&E, because here in this part of Wales you can’t self refer like I used to be able to do in London. That is not something I am keen on.
What will I say on Monday? It depends how the next 48 hours go. Will “hospital at home” be enough? Part of me already wants to go into proper hospital, because based on past experience, being locked in and not allowed leave from the ward knocks the stuffing out my plans to abscond and without absconding, I can’t follow through on my overdose plan. I know that Tom doesn’t think that’s necessary, but it really depends on how exhausted I become by the war between the sneaky and the rational parts of my brain. Just in case, I am already thinking about what I might take. I bought an enormously long book that has been recommended to me by a couple of people. If I went in this time I think I would risk it and take in my laptop too. I know from previous experience that the ward here is the most boring place in the world; no activities or groups, and with a very high patient turnover, little chance to build meaningful friendships. I can’t help comparing it with my first admission, where I formed real bonds with people. I was in text contact with one of my ex ward buddies only this week, over three years on, and we still agree that in many ways that admission was a really positive experience for us.
It will all come down to whether I think “hospital at home” is safe enough, and whether I get so exhausted by my own thoughts that I no longer care that the ward will be a crappy place to be. A complicating factor is that my mum is due to come and stay for a few nights this Tuesday. This could be a helpful thing. It would give Tom a break from having to care for me 24/7. We would go and do touristy things around the area which would be a good distraction. But I worry that I might put her through the kind of pain I am already putting Tom through. I worry about being visibly bonkers in front of her, as she has never seen me in full on crisis mode. I don’t know what to do for the best. I don’t know whether to tell her not to come, I don’t know whether to go onto the CT books. I don’t know what to do.
Image shows a red card with the word CRISIS written in black in the centre. It was sourced from Flickr, commercial use and modifications allowed, and was uploaded by Ron Mader
By now I am a veteran at completing application/review forms for Employment and Support Allowance (ESA) and Personal Independence Payment (PIP). ESA is for people who are too sick to work, while PIP is to cover extra expenses associated with being disabled and can be claimed whether working or not. The standard suggestion by advice agencies is to explain your condition in terms of your worst day. A “mustn’t grumble” traditional British attitude, or answering questions on a good day while pushing the horrible times to the back of your mind, will make you look like there is nothing much wrong with you, and means you are unlikely to get the money that you deserve.
Because my condition is very complex, for each question about daily living I have to answer in four ways:
How I can or cannot cope on a depressed day
How I can or cannot cope when hypomanic
How I can or cannot cope in a mixed mood state
How acute anxiety affects my ability to cope.
I always have to stress in every question that I am a rapid cycler, so that in addition to perpetual anxiety I could wake up any day depressed, hypomanic or mixed. That is the most disabling aspect of my condition, and the one that makes me unable to take on a job.
For each activity, I have to say whether I need supervision or “prompting” to manage daily living on a given day. For example, when I am hypomanic I may need prompting to stop and eat, and I may need supervision to cook because I am so distractible I do things like leave the gas on. When I am mixed and suicidal I need prompting to take diazepam, undertake distracting activities and tell professionals what is really going on, and I need supervision around meds and going out alone for my own safety.
Who does the prompting and supervising? Tom, of course. One of the most depressing things about filling in the forms is that it highlights just how often my husband becomes my carer. Neither of us want that. I don’t think he actually sees himself as my carer, and when I thank him for looking after me, he looks a bit baffled and says, “You’re my wife!” But right I do feel like he is my carer, because I need so much prompting to do daily things and protection from myself. I’ve been depressed for days now and fighting urges to overdose, so now Tom is holding onto any meds that could harm me. Today I woke up again feeling low from the get-go and within a few minutes, I was crying. I really needed to wash my hair, but I just couldn’t. Right now a bath feels comforting but washing my body is difficult, and washing my hair feels like a step beyond what I cam capable of. When Tom offered to wash my hair for me, I cried harder, because of his kindness.
In the end I was able to wash my hair with the “prompting” of him being in the room as encouragement, but drying it was just impossible. So he blow dried it for me, something he has never done before. It was kind of relaxing, but also kind of depressing because he had had to step in like that. I cried all the way through. Next, he helped me pick out some clean clothes to wear. I managed fresh knickers myself but he helped me find a clean vest top and a jumper, so that I will be warm and comfortable today. This gave me the courage to find some clean socks (I had been wearing the same one for god knows how many days).
This afternoon I have a podiatry appointment. It’s at the general hospital, where I have never been before, and I have to find the right department. Although on a good day I could take the bus to the hospital by myself, right now that feels like too much, and the actual hospital part would probably be beyond what my anxiety would allow on any day. So he’s taking me there. He’s already taken me to physio this week and is taking me to Emotional Coping Skills group tomorrow. All of these are things that I should be able to access on my own by public transport, but right now I just can’t. Left to my own devices I would’ve ditched physio and certainly not shown up for podiatry, which seems like the least important of all the things I need to do this week. I would, of course, regret that decision later.
I need help cooking and avoiding a diet which is just crisps and Coke. We have just received a Tesco order full of things that are easy to make – pizzas, tortilla wraps, jacket potatoes – but lately I have found myself grinding to a halt during simple tasks like chopping vegetables for salad. Anyone who follows me on Twitter will know that normally I love to cook, so eating oven chips feels like a defeat, let alone having to hand over food prep to Tom. It also engenders guilt. He looks after me in so many ways and one of the key ways I look after him is meal planning and preparation. When I can’t produce nice, nutrious food I feel like a failure.
So today he is my carer and I hate it. I’m getting good support from the Community Mental Health Team – my Community Psychiatric Nurse came yesterday and is coming again tomorrow, mainly to flag me up with the Crisis Team in case I need to access them over the weekend. I’m being encouraged to make good use of diazepam, something Tom mostly has to prompt me to do, and today I need him to drop me off at the GP surgery so I can put in a request for more (I’m getting through it at a rate of 2-3 x 5mg a day, rather than one or two a week). Whether the request will be granted is, of course, another thing for me to feel anxious about, although I know my CPN and consultant will get involved if the GPs are funny about it.
I hate this. I hate having to be prompted, I hate having to be supervised, I hate needing a carer. I hate being the person I have to describe in my ESA and PIP forms. I want to be strong and independent and able to look after myself. But I can’t and I’m not, and yet again the suddenness and severity of this episode has taken me completely by surprise, just as I describe in the forms. It’s nice to be cared for, but it’s not nice to need a carer. There’s a big distinction there. I feel very disempowered and very pessimistic. What if I didn’t have Tom? What if he wasn’t around to be my “carer”? These worries feed into my suicidal thinking, which of course makes me need to depend on me more. What a catch-22 the depressive mindset is.
Image shows a person with unwashed hair covering their face with their hands and is taken from Flickr. Commercial use and modifications are allowed. Image by viviandnguyen_
Today I got angry after reading a tweet. Just a regular day then, you might think, except this one made me so angry I have had to blog for the first time in months. I was reading a thread about a conference on “rapid tranquillisation”. For those who don’t know, on a psychiatric ward this means administering a drug, generally by injection, which knocks the patient out. Patients usually have to be restrained by staff for this to take place. I am very, very fortunate that I have never been restrained or injected, but I can assure you it is difficult to watch, and I have read enough accounts by those who have been subjected to it to know that it can be utterly traumatising (if you want to know more, @Sectioned_ has blogged about her experiences extensively). I had to back away from the thread pretty quickly, because I found reading about RT being discussed in a very theoretical, dispassionate way – what combination of drugs works best? Oral or injectable? – distasteful and disturbing.
The anger part came in though when I read this tweet about minimising distress for people who have been rapidly tranquillised:
Environment is so crucial in helping people manage distress. Little things ie. flashing lights, dirty conditions don’t help mental health. Keeping things simple is very important.
Little things? Excuse me, but – little things? Having to live in squalid conditions when you are not permitted to leave, for weeks or maybe months, is a “little thing”? I don’t think so.
Earlier this week I read this blog from Recovery In The Bin, a critical theorist and activist collective that challenges dominant mental health narratives (I urge you to follow them at @RITB_). I was saddened but unsurprised to learn that on top of staff indifference and medication errors on the ward, the blogger had had to put up with a dirty, unpleasant environment:
The bathroom was filthy and not cleaned for two weeks, with a blocked drain that meant it flooded every time I took a shower. When I reported these things, the message never seemed to get to the right people. They were unable to find curtains for my room for the first week, and the floodlight outside the window meant I was unable to sleep properly.
I have been on three different psychiatric wards and without a doubt the worst environmentally was the inner London unit that I was admitted to in spring 2017. The shared shower room smelled so awful that I washed my body and hair in my bedroom sink for the 17 days I was there. I shaved my legs there too, foot up on the side of the rather high basin like a ballerina at a barre. When I used the toilet in that shower room I looked at the perpetually wet floor where the water never drained away and decided that, quite apart from not wanting to stick around in the foetid air, I didn’t want to put my bare feet in a perpetual puddle of bacteria. There was a separate toilet on the corridor that was about the size of an aircraft loo (why, I don’t know – the corridor was wide). It smelled like a train station toilet that never gets cleaned, so I had to hold my breath as I peed. The small size and the stench made me feel both claustrophobic and nauseous.
Someone who was not very well smeared poo all over the sink and toilet in the shower room. I don’t bear them any ill will. But it took over 36 hours for the room to be cleaned, so in the interim all the woman on the ward had to use one shower room and we were a toilet down. There didn’t seem to be much of a sense of urgency.
I was, as was the author of the RITB blog, “de facto detained” – I wasn’t under section, but I wasn’t allowed to go off the ward either, not even with a nurse. Even though I go into hospital voluntarily, I always feel a bit like I am in prison while I am not permitted any leave. On this ward, the view from my window of a blank, grey concrete wall and some razor wire didn’t exactly dispel that sensation. The unit was on the same site as a general hospital and I thought of going over there to see if the toilets in the public areas were any better. I would happily have walked for a few minutes to avoid the pervasive smell of damp and shit. But of course I couldn’t.
That ward had mice on it; we saw them scampering about near the telly. They came up through a large hole around a pillar. Pest control experts had been brought in, but they said that there was nothing they could do, it was down to the Trust’s estates department to come and fill in the hole. By the time of my admission, the job had been on a waiting list for months.
Would you put up with this situation if you were on a general ward? If your relative avoided washing because the facilities stank so badly, would you think that was good enough? Is it acceptable to have to hold back vomit when you use the toilet on NHS premises? Are you content to watch mice scamper where patients have to sit to eat the toast they force down with their night meds?
These are not the little things.
Image shows a blue and white sign with the words “Now wash your hands”. This image was found on Flickr and may be used for commercial purposes and/or modified. It was produced by Peter O’Connor
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 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 specular 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.
“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.
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?
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.
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.
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)
Time at the gym (which was actually pretty decent)
Music appreciation group
Breakfast group (where we cooked bacon and eggs for ourselves)
“Giant” games (Jenga, Connect 4, etc)
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.