Scream if you want to go higher

It is often said that people with severe mental health problems exhibit poor compliance with drug regimens. I loathe that word, compliance. The only time I ever felt really annoyed at my CMHT consultant in London was when he said that it was “nice to have such a compliant patient.” It irked me because it made it sound like it was pleasant experience for him to give out orders and have them followed. I didn’t take my meds to make him happy; I took them because I wanted to try and be well.

There are many reasons why people start on psychotropic medication and then discontinue (with or without medical supervision). It’s not a particularly nice feeling to have your life ruled by meds, which you must take at different times of day, some with food, some without food, some of which might be sedating, others of which may in contrast be “alerting” and make you agitated. Most drugs have side effects which can range from nausea and constipation, through insomnia and sedation, to life-threatening skin rashes, exponential weight gain and unwanted breastmilk production. It’s no wonder that many people reach saturation point with how many side effects they feel they can cope with. It’s particularly depressing to be told that you may need to be on one or more psychiatric drugs for the rest of your life.

A common complaint I have heard from people on mood stabilisers is that it makes them feel “flat”, that in reducing the highs and lows of bipolar they somehow lose something, become diminished. I never really understood this. I took lithium and the lamotrigine and I didn’t feel flattened out, which I suppose is unsurprising as they failed to control my mood swings. Then I started on lurasidone and my moods really evened out. I didn’t feel flat, though, I felt more like me, that although my anxiety was still very debilitating, I was less disabled by actual mood states than I had been in a long time.

But things have changed.

I am now experiencing an active episode of rapid cycling mood instability. I think it was triggered by the process of reassessment for Personal Independence Payment (PIP), which resulted in my enhanced PIP payment being stripped from me because the assessor, who I saw for all of 40 minutes, decided I had no difficulties in life and awarded me zero points across all domains. That hit me hard, and came around the same time as going on holiday, which is often destabilising for me. I found myself waking up despairing and tearful several days in a row. Then, quite suddenly and inexplicably, my mood switched and I found myself first elated, then battling mixed mood. For almost a month I have been rapid cycling, the mood graph I have been keeping for my Community Psychiatric Nurse (CPN) wildly spiky. The amount I sleep varies from 14 hours to 3 hours, depending on where my mood is at. My anxiety score when my mood is elevated is almost nil, virtually unheard of for me.

It had been so long since I had been hypomanic that I had forgotten what it was like. I had actually forgotten. On down days I cried not just because I felt low, but because I was mourning my hypomania. I had a great thing, and it had been taken away from me. It didn’t matter how many people pointed out that the low might only last a day or two, that tomorrow I might feel good again. I was bereft.

Then I had another bout of high mood. It was the highest high I have had in several years, and it was wonderful, yet I felt frustrated, because I knew it wasn’t as wonderful as my highs used to be before I started taking lurasidone a few years ago. Yes, I got up at 3am to start work on blogs for other people without feeling a shred of tiredness later, but I didn’t have the grand, “genius”, creative ideas I used to get. Noises were extra loud, and some tastes were overwhelmingly lovely, but colours were not as bright as I would have liked. I didn’t feel fully at one with the universe.

This coincided with Tom being away for three days. I partied hard, thrilling to the music I played at ultra-high volume, singing along, my voice sounding better that usual, and I danced and danced, but I didn’t quite attain previous levels of ecstasy. I drank a lot of alcohol and a lot of caffeine and lived off junk food, eating at strange times of the day and I felt wild, but not as out of control as I wanted to be. And the thought came to me: I feel really great, but I could feel so much more. It’s the meds that are holding me back.

All at once I did not want to take the meds anymore, especially the lurasidone, which I credit with having kept the highs in check for so long. I suddenly knew what people meant when they said they were “flattened” and I felt resentful that I was being denied the full richness that bipolarity has to offer. I felt that it was unlikely that I would go low if I stopped, and that even if I did, it was a risk I was willing to take to pursue a more significant hypomania.

I floated this idea on Twitter and received unanimous feedback: “DO NOT STOP YOUR MEDS!” Despite this good advice I felt a strong resistance, almost a revulsion, when I considered swallowing my nightly doses. I texted Tom: “I feel like stopping my meds but you would be sad and angry if I did that, wouldn’t you?” That, apparently, wouldn’t be the half of it.

Then yesterday I was low again. I spend most of my time hiding from my lovely relatives who are here as houseguests. I cried long and hard, more than I have done in months. I clung to the idea of my meds, knowing that they stopped things from being worse. I had some obsessive thoughts of overdoses, particularly after uncovering a small stash of lithium I had forgotten about. I told Tom my feelings and he took away any drugs other than those which were strictly necessary. I began to feel scared that I would go into crisis with lots of visitors around and that this would be absolutely awful.

I woke up briefly at 5.30 this morning and knew without a shadow of a doubt that my mood had lifted. When I plot today’s feelings on my mood graph I will be somewhere on the cusp of normal/positive and elevated. I certainly don’t feel quite normal. But that’s not enough for me. I want more. I want to go higher, be faster, reach a more exalted plane. I feel dissatisfied with my mundane life and long for the peaks of a really intense hypomania. Once again I am feeling mutinous about taking my meds.

There are risks to hypomania, people keep reminding me. I could crash into a horrendous depression when I come out of it. I could very, very easily enter a serious mixed mood, that could put me in hospital. I could have what would be only the second true manic episode of my life and do things, say things, buy things with irreversible consequences. But I am finding it so very hard to care about these possibilities, which feel very theoretical.

So I guess I will go on forcing myself to take the drugs, with an ill grace such as I have never experienced. Tom is keeping an eye on me, but there is a tremendous temptation to simply take the pills out of the dosette box so it looks like I have taken them, and throw them away. The thing that stops me doing this is not fear of what my mood might do, or psychosis returning, or withdrawal effects, but a terror that Tom might finally lose patience with me. He puts up with so much, does so much for me, and does it willingly because it is not my fault that I have bipolar. If, however, I had severe symptoms because I had chosen to be non-compliant, he might feel very differently. It might rock our marriage, and there is no way in the world I want to do that.

So I will take the lurasidone and the lamotrigine (I would’ve kept taking the levothryroxine and the duloxetine anyway, as if anything they would push me upwards). I will let Tom supervise the doses if needs be. But I don’t want to. I baulk at it, like a horse refusing a jump, just a big sense of NOPE. Somehow I will have to coax myself over the jump, but the thought remains: not wanting to feel hypomanic, now that’s really mental.

 

 

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Posted in Bipolar, Drugs, Hypomania, Mania, Medication, Uncategorized | Tagged , , , , , , , , , , ,

Have you tried mindfulness?

I was sitting at my dining table with Tom and two members of the Crisis Team. They were there because I was experiencing overwhelming intrusive thoughts of running away and killing myself. My mind was totally out of control; I didn’t feel like “me” anymore. I was beyond self-help strategies, and that is why we were considering another hospital admission. I had thought we were all clear on these points, but then the healthcare assistant leaned in and said, “Have you tried mindfulness?” This was not the first time a member of a Crisis Team had asked me this very question.

Well, crisis lady, as a matter of fact I have tried mindfulness. When I was working I paid a lot of money to undertake private Mindfulness Based Cognitive Therapy, and over the years I have dipped in and out of a formal “insight” meditation practice. I learned a lot from MBCT about what mindfulness is – and what it isn’t.

The first thing I learned is that mindfulness is unsuitable for people who are poorly. My MBCT teacher phoned each prospective group member individually to warn them that if they were actively unwell, now was not the time for them to undertake the course.

The next thing I came to understand is that mindfulness is a skill. It has to be taught. You can learn from books, but it’s probably a lot easier to learn from a teacher. It is both a philosophy (loosely drawn from Buddhism) and a technique. It has to be practised. One cannot “try mindfulness” as a one off event requiring no prior knowledge or experience, the way one can try a cup of chamomile tea to see it helps them sleep.

My main takeaway from MBCT was that in practising mindfulness we don’t seek to do or change anything. Whatever thoughts, feelings, bodily sensations arise are to be observed, but not consciously changed. It’s about noticing, not about trying to make things different. Most often in mindfulness meditation your breath is used as an anchor point; when you feel your mind starting to wander away from noticing what is (which it inevitably will), you pull your mind back to you breath. Again, you are not trying to change anything, so you don’t breathe in a certain way to try and make yourself more relaxed. You just watch.

My latest brush with “mindfulness” – and I put that in quotes for a reason – has been on an NHS Emotional Coping Skills group work programme I recently completed. It was pretty much an abridged version of Dialectical Behavioural Therapy (DBT), which tries in improve people’s ability to tolerate painful feelings, increase their ability to soothe themselves when in distress, and have more effective interpersonal interactions. A central tenet of DBT is that mindfulness is a key skill in learning to deal with and regulate strong emotions.

This NHS brand of mindfulness left me confused. Some of it did seem like mindfulness as I understood it – for example, we undertook a meditation where we just observed the sounds around us, trying not to attach to any of them or make any judgements about them. We also did the dreaded “raisin meditation”, which has become rather a joke in the online mental health community because it is so ubiquitous (I had already experienced it in MBCT) and so… silly. The idea is that you choose or are given a raisin (one man in my group work programme was allergic to raisins, so he was allowed to have a Rich Tea biscuit), which you then interact with. You look at the raisin, concentrating minutely on its appearance, on its uniqueness, on how its wrinkles are like no other raisin. You sniff it to see how it smells. You bring it to your ear (yes, really) to see if it emits any sound. You roll it between your fingers, feeling its texture. Eventually you are allowed to pop the raisin into your mouth, but you have to hold it there, noticing if your salivary glands are activated, noting if you have the urge to chew. Finally, you are allowed to bite into it. I admit that by this point I find the raisin tastes better than anything I have ever eaten, almost too sweet to bear. And that is the point of the exercise – to slow things down so we can really notice what’s going on. If we cram handfuls of raisins into our mouths, as I am won’t to do, we are missing out on the authentic experience. But it does feel pretty embarrassing as an exercise.

Anyway. So some of it was proper mindfulness stuff, but then there was “distraction as mindfulness” or perhaps “mindfulness as distraction”. This confused me, because it involved completely turning our attention away from what we were thinking or feeling and engaging in some other task. Word searches, for some reason, seemed very popular. We did one about breeds of dogs and another one about healthy eating. The meditation bell was rung at the end of the allotted time period, to make it seem more… mindful. But if the goal of mindfulness is to notice but not change things, how can deliberately doing something different to change your mind state be mindfulness? Surely mindfulness and distraction are two very different things?

And here’s the key thing for me. I think they are different things, and I think that for crisis situations, distraction is an excellent tool to use, as long as you are distracting yourself with something safe. I use colouring books. I know I’m probably the only person in the world still surfing the adult colouring wave). I do jigsaw puzzles, I read (when I can concentrate on it), I have a bath or shower, I try eating something, whatever, to distract myself from suicidal thoughts. I believe that sitting with them and noticing them gives them houseroom and is dangerous. This BBC article notes that mindfulness can be damaging in that it can make you aware of difficulties, without giving any tools to deal with them. Some people find meditation, especially watching the breath, makes them feel panicky, particularly people with breathing problems like asthma.

I could move onto more political objections to mindfulness, that it puts the onus on the self to observe reactions to structural inequality, austerity, racism etc without putting any energy into fighting social ills that generate mental health problems. From that perspective, it is an ideal neoliberal therapy. But that could be a whole blog post in itself.

There is no real standard against which mindfulness teachers are judged. You can have decades of formal meditation practice, or you can do a brief course and set yourself up in business. It’s pretty obvious that most NHS mental health professionals – particularly nurses and healthcare assistants – will have done very little training in mindfulness, if any. “Mindfulness” is a buzzword. Most people suggesting it have no idea what they are suggesting, let alone that it is a skill that takes potentially a lifetime of practise, never mind the fact that it can be dangerous in active episodes of mental illness.

Yet still it gets recommended by Crisis Team members over and over again. By rights I should wait until tomorrow to finish this post, because my Twitter poll doesn’t close until then, but what the hell: as of this moment, 81% of 302 people say that they have been asked the question, “Have you tried mindfulness?” when they believed that they were at imminent risk of harm.

Why are we allowing this to happen? Why are Crisis Team staff encouraged to recommend something they know nothing about? Why are so few people talking about the fact that mindfulness can be dangerous if practised at the wrong time or without the necessary grounding? How is this OK, and how have we come to this point?

And now we’re at this point, how do we change things?

Posted in Crisis care, Mindfulness, Psychological therapies, Uncategorized | Tagged , , , , , , , ,

Running up that hill

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.

Yet I am desperate to run.

 

Image shows a pair of running shoes. Sourced from Flickr, commercial use and modifications allowed, credit https://www.flickr.com/photos/tenisama/

Posted in Bipolar, Crisis care, GP, Mental health, Mental health services, Mood disorder, Suicidal thought, Suicide, Treatment planning, Uncategorized | Tagged , , , , , , , , ,

Hospital at home

Trigger warning: suicidal thoughts and planning

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

Posted in Bipolar, Crisis care, GP, Hospital, Inpatient care, Mental health, Mental health services, Mixed mood, Mood disorder, NHS services, Rapid cycling, Suicidal thought, Suicide, Uncategorized | Tagged , , , , , , , , , , , , , ,

On having a “carer”

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:

  1. How I can or cannot cope on a depressed day
  2. How I can or cannot cope when hypomanic
  3. How I can or cannot cope in a mixed mood state
  4. 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_

 

Posted in Anxiety, Bipolar, Crisis care, Depression, Employment and benefits, GP, Medication, Mental health, Mental health services, Mood disorder, NHS services, Rapid cycling, Suicidal thought, Treatment planning, Uncategorized | Tagged , , , , , , , , , , ,

These are not the little things: unsanitary conditions on mental health wards

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

Posted in Hospital, Inpatient care, Mental health, Mental health services, NHS services, Psychiatry, Social media, Uncategorized | Tagged , , , , , , ,

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.

 

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 , , , , , , , , , , , , , , , , , ,