A life in the day of bipolar mixed mood

It would be so nice if being hypomanic and depressed at the same time meant that they cancelled each other out, if the high would make peace with the low so you could find a place in the middle. Instead they antagonise each other, taking it in turns to yell or descending into a muddled bicker.

This is day ninety six million of mixed mood.

Your husband is already up, phone in hand, checking his work emails in his dressing gown. You look at his bare legs where they rest on the foot stool. “I really love your feet,” you tell him. You are completely sincere. How have you not noticed how beautiful they are?

“Okay,” he says. “Feeling chipper this morning, I see.”

Of course you love your husband – you only got married last year – but right now you really, really love him, so much that you can’t stop telling him. Last week in the car you said, “I keep looking at you and thinking that I love you so much I might be sick.” Almost every time you see him it bubbles up out of you – iloveyou. You can see that it’s a bit overwhelming to be told so often, to have random parts become objects of adoration, to be nearly thrown up over, but you can’t stop saying it. You mean it every time.

Despite all the lurve you are kind of keen for him to leave for work. You are desperate to get dressed, get out, go shopping, and you don’t want him to try and stop you. You do not wish to be told sensible things, things like, “Slow down” or “Don’t stay out too long” or “try not to spend too much money”.

You feel fast, agitated, whirling around the bedroom grabbing any old thing to wear because you need to be out. Except when you go to get your bag you suddenly don’t know if you want to go after all. You feel inexplicably exhausted, defeated by life, and you sit down. You stand up again because you still want to go. Or do you? You repeat the sitting down and standing up thing then take your clothes off again and get into bed, needing to hide, needing to shut down.

Half an hour’s dozing and that inner drive, that pressure has returned, so you leave on your mad hypomanic mission. On the bus you are buffeted by anxiety. Why did you rush out so fast? Did you lock the door? Have you even got your keys? You go through your bag, putting everything on the seat next to you: phone (good), travel pass, purse, keys! Everything is all right. You glance around and notice there is now only one other person on the top deck. You are glad that she is there. You, on the top deck alone; that would’ve been… unauspicious. It would have felt dangerous, and not the kind of danger that comes from other passengers. It would’ve felt like a message, and there have been more and more messages for you lately.

Your prime objective is to gather items for what you are calling a “festive branch” – an inexpensive alternative to a Christmas tree. You found the branch itself in the park and now it’s in the kitchen, waiting to be made pretty. There is so much useful stuff in this shop! A vase etched with bare trees, echoing the branch itself. A great base. Glass beads to weigh the vase down – they’re inexpensive, so you throw eight bags into the basket. White LED lights on copper wire, prefect. All kinds of beautiful little silver and white ornaments. You are steadfastly not bothering to add all this up. Who cares if you’ve already spent more than you would have done on an actual Christmas tree?

You wander the rest of the store, picking up a stocking filler here, a joke present there. It’s the middle of the day so your teen daughter’s at college but you text her anyway, laughing aloud in the aisle, to ask if you should buy a piñata. “Um mum? 😂 Why? I meaaaaaan…” You’re not sure. It just seems like an important idea.

You’ve a lot to unload at the checkout. The woman behind you tuts and fusses. “I ain’t waiting around for all this lot,” she says.

“I’m entitled to buy whatever I want,” you snap, and when she continues to grumble, “Oh fuck off.” Instantly you are terrified. Why did you do that? What if the assistant won’t serve you and you lose all your precious stuff? What if someone calls the police? “Some people are so rude,” says the woman the till, but you realise she’s jerking her head at the other customer.

The journey home is hard. Everything is too much, too loud, too busy. You have had enough of other humans. You just want to get home and look over your stuff. It pleases you for a moment, but then you freak out. You cram it all back into the bags and shove them right under the bed. You take the guilt about all the money you have spent and try to shove that right away too.

Dinner happens. Watching TV happens. Nothing out of the ordinary, but you begin to feel sad. You begin to feel beyond sad. Your mood has plummeted with shocking rapidity. “What’s the matter?” your husband asks, seeing you crying, taking your hand.

“I feel awful. It’s happening again, isn’t it? It’s all happening again. This is it, this feeling is my whole life. The drugs aren’t working and I’m going to end up in crisis and I’m going to end up back in hos-”

“Ssh,” your husband says, kissing you on the forehead. “You’re over-thinking things.”

“I’m not. I’m not! I can’t live like this. I feel so terrible, oh God, what am I going to do?”

“But this morning you felt great, remember?”

“I remember what I said and what I did. I don’t remember how I felt. I’m so frightened!”

You take a diazepam to take the edge off the pain. You cuddle up closer to your husband, wrapped in a purple blanket, and try to lose yourself in the TV programme and not think, although you are thinking, you are thinking, “Wow, my teeth are really pointy.”

When you clean them you take a peek but they don’t look weird. You hum a little tune as you swill the mouthwash around. When you’ve finished your husband is already in bed, waiting for you to turn the light off. “Are you sure you want to go to sleep?” you say plaintively. “You don’t want to stay up all night and talk to me, do you?”

“Aren’t you tired?” he asks, opening one eye.

“Not at all.”

“You seem pretty chipper,” he notes. “Oh God.”







Posted in Anxiety, Bipolar, Christmas, Depression, Family issues, Hypomania, Mania, Mental health, Mixed mood, Mood disorder, Psychosis, Rapid cycling, Self-management, Social media, Uncategorized | Tagged , , , , , , , , , , , , , , , ,

An office #TwistmasParty


At the time of writing there are just sixteen days and 15 hours to go until Christmas, well inside the period when the spectre of the Office Party looms. They’re a strange thing at the best of times, a night of enforced jollity with people you might not otherwise socialise with, too much alcohol, inappropriate liaisons, the pressure to dress up. I guess they can be enjoyable when you’re in the right mindset, but when you have a mental health problem it can be really hard to set your mind to “party”.

There are so, so many mental health reasons why an office party might inspire dread. Without even really trying I can generate a whole list. Being too depressed to get dressed up and/or get yourself there. Social anxiety. Issues around eating in front of other people or fear that food may be contaminated. Body image. Needing to discreetly take meds to a schedule. Discomfort about being around copious amounts of alcohol. Worrying about making a fool of yourself because you are hypomanic. Maybe you have non-mental health conditions which cause other hidden issues with parties. Maybe autism makes you hypersensitive to noise, maybe you are uncomfortable with the rigid gender expression these events tend to enforce, maybe you are dyspraxic and worry you’ll be pressured to dance.

And yet the whole thing can stir some longings. Workplace bonding is something we can’t have if we have lost jobs or could never obtain work because of mental health disability. We all know that colleagues can be awful, but some can be a huge source of support and even become lifelong friends and I will freely admit that I am lonely without them. So I’m probably misremembering or over-romanticising office parties, but I kind of wish I had one to go to.

Where do I turn? To my Twitter friends. In a way, they are my colleagues. We all share an interest in the same field. Twitter is the water cooler where I discuss what happened over the weekend. It’s where I debrief after a work event, where I share a research paper or my learning from a conference.

So that’s where I want to have my office party, and I wondered if you’d care to come? It’s a cliché to say that an event is “what you make of it”, but in this case it really is.

You can tweet wearing your PJs or you can dress to the nines in your own living room. You can pick a picture that you like to represent a party version of you, take a pic of yourself at that moment, or keep your appearance private.

There is no pressure to eat or drink, because there isn’t any except what people “bring” (describe) – but I would ask participants to start food-related tweets with a content note (CN) to give people a heads up to skip that tweet if reading about food is difficult for them. It’s like a trigger warning, but less strong. I do it something like this:


You can stay for one minute or the full hour, talk to anybody or nobody, tweet once or tweet as many times as your fingers allow in 60 minutes.

If you’re up for it, I’m happy to host for an hour on Wednesday 21st December at 6.30pm. All you have to do to join is use the hashtag #TwistmasParty within that time slot. I’ll be “DJing” via Spotify so that you can all point and laugh at the cheesiness of my Christmas playlist.

Who’s in?



(Usual caveat: this is all assuming I am well enough. I’d love someone to be a backup person, just in case. Do let me know if you think you could help. Also full credit to @skingers for coming up with the hashtag!)








Posted in Christmas, Employment and benefits, Mental health, Uncategorized | Tagged , , , , , , , , , ,

Mixed mood

I can’t think of a snappier title for this blog, because mixed mood is where I am at and my brain feels scrambled. For four weeks now my functioning has been disturbed, my mood fluctuating but not actually euthymic (normal) at any point.”How are you?” my Care Coordinator asks, and all I can say is that I am “up and down”. When pressed I think harder and say that I am more up than down, but definitely with down bits stirred in. So – mixed?

It’s maddeningly difficult to get anyone to agree what a mixed affective state is and I have of course met different psychiatrists with different views. Is any bipolar mood state that has some features of the other pole necessarily mixed? Is it useful to separate out predominantly depressed mood with hypomanic features from a predominantly high episode with some features of depression? How do you know whether the swirling pool of emotions is a mixed state or in fact “ultradian” (incredibly rapid) cycling?

A “mixed affective state” use to be viewed as one of the four presentations of bipolar: bipolar I, bipolar 2, mixed affective state and rapid cycling (all boxes I have been put in at one point or another). When the DSM-5 came along it switched to the “mixed features” approach, so any major mood episode can be diagnosed as having mixed features as part of its makeup.


It’s all a bit of a mish-mash from a service user point of view, and when you are in the grip of swirling emotions being able to tease out and articulate what you think is going on can be very hard. Just as I have had to learn what hypomania means for me (depression’s pretty easy to identify), I have had to learn what mixed mood entails. It matters that I am able to to identify mixed mood. It matters a lot. I was in mixed mood both times I was hospitalised. I was in mixed mood the only time I took a major overdose. Here’s what I have pieced together in recent years.

If I don’t know what mood state I am in, but I am unwell or distressed, it’s probably mixed mood.

If my moods flutter and flicker rather than snapping smartly back and forth, it’s probably mixed mood rather than incredibly rapid cycling.

In mixed mood my thoughts are very “loud” with competing viewpoints vying for attention. I can be in two or even three minds about something, for example: I need to die; I want treatment because I don’t want to die; there is nothing wrong with me and I don’t need anything. One thought can immediately follow another so that I don’t know what I feel, want or believe any more, sometimes wanting multiple conflicting things in any given moment.

If I am tired, yet raring to go, that’s a sign I may be in a mixed state.

If I experience eight different emotions, ten, maybe even more, in the course of a day then I must be in mixed mood.

Today I have been irritable, angry, lethargic, agitated, sad, tearful, awed, elated, guilty, terrified, ashamed. I got up desperate to go out and shop (hypomania) but returned to bed feeling exhausted before I could go anywhere (depression). I went out in the end and spent too much money (hypomania). I was hypersensitive to noise at the shops and felt hostile towards other people who had the gall to get in my way (hypomania). When I came home I sat on the sofa and cried because a song was so beautiful (hypomania). Then I cried because I couldn’t cope with household tasks and I felt aweful about the money I had spent (depression).

I have given up for the day. The washing will have to stay wet in the machine until Tom gets home to deal with it. I have cancelled the gym class I was really looking forward to because I have no idea whatsoever whether a cardio workout to loud music will be beneficial or detrimental to my wellbeing. I will have a bath. I might take some diazepam. It’s all uncomfortably like implementing a crisis plan.

I am seeing my psychiatrist tomorrow and I am going to ask about a medication increase. The level of mood disturbance has been creeping up and up in the last four weeks and I’ve been having the same old paranoid thoughts about my tech being misused by dark forces and the same old feeling that I am being menaced by banana skins. I can’t take the risk that things will get any worse and anyway I am getting very, very tired of the big bipolar mixing bowl.






Posted in Bipolar, Depression, Hypomania, Medication, Mental health, Mixed mood, Psychiatry, Rapid cycling, Self-management, Uncategorized | Tagged , , , , , , , ,

How not to annoy your patient

Today I saw a rather old Independent article on Twitter. I’m surprised I haven’t come across it before – it’s been out there since 2010 – but now that I’ve seen it, I can’t unsee it. Entitled How not to annoy your doctor, it’s a rather unpleasant little piece detailing groups of patients that GPs find particularly… annoying. Some of these categories are really quite hurtful, especially for people with mental health conditions who are often accused of displaying the kinds of traits this doctor finds irritating such as dependency, manipulation or self-destruction. I will admit that I took this article somewhat personally.

This post is my coping mechanism. You see, doctors may think that dealing with “heartsink” patients is a particular burden for them to bear, but guess what, service users have “heartsink” clinicians that we end up stuck with too. So here are my top five types of psychiatrist guaranteed to annoy a patient.

The File Flicker (now superseded by the Screen Scroller) “Hummty tummty tummm,” murmurs the  Consultant File Flicker, deeply immersed in a cream coloured folder. “So your GP says that you are depressed… and he has put you on 75mg of venlafaxine… How are you finding that?” You are surprised to be asked a question, as so far he has not once looked in your direction. You tell him that it’s early days, and he nods, still glued to the paperwork. “So that seems like a reasonable course of action… I’ll see you again in three months.” He stands. You stand. He looks you briefly in the eye as he shakes your hand and the appointment is over. Next time he should probably just spend some quality time with the file as it’s clearly more enthralling.

The Family Guy “It’s understandable that you’re worried about your son leaving for university,” nods Family Guy. “It’s bound to be a source of anxiety. I remember when my daughter went off to Oxford I found it very stressful.” He listens carefully when you tell him that you had a bad episode when you had your second baby. “New babies are really hard work, aren’t they?” he empathises. “No one quite understands how the lack of sleep grinds you down unless they’ve been there.” By the fourth session you feel like you know FG’s whole household, except his wife, who remains strangely absent.

The DSM Delver No one else’s clinical opinion is good enough for The DSM Delver. Maybe she has trust issues. Maybe she believes that she, and she alone, has all the answers. It’s hard to tell. Whatever label you show up with, she will better it. It doesn’t matter how solid the prior consensus is, she will make her mark, delving into the diagnostic manuals for a new interpretation. “Aha!” she thinks. “Maybe she doesn’t have bipolar after all. I can do better than those three previous consultants! Maybe she has major depressive disorder with clinical anxiety. No, no, wait! Maybe she has MDD with borderline personality traits!” Having exhausted the more obvious explanations the DD goes further, coming up with arcane labels the rest of the team has never even heard of. “Adjustment disorder! That’ll get them all thinking!” Sometimes, for extra fun, the DD will keep their epiphany to themselves, burying it in the notes without sharing it with the patient. Because feeling that you’re right and everyone else is wrong is all that really matters.

The Checklist Slave You wait for the duty doctor all afternoon. When she finally arrives she asks you what is wrong and out pour all the details of the current crisis: the thoughts of self harm, the preoccupation with suicide, the inability to sleep. “OK,” she says. “Now I just need to ask you a few questions. Do you currently have any thoughts of harming yourself?” Um, yes. Did you not just say that? “And do you have any thoughts of taking your own life?” Hello? Yes! “And how is your sleep?” You realise that this psychiatrist is using a list, and she’s checking it twice. After a while you begin to doubt that you said anything at all, maybe anything in your life, before the checklist began. You had thought you were in a bad place before you saw the doctor. Now you really have lost the will to live.

The Internet Denier “So you should take your new antipsychotic in the morning.” You are surprised. The consultant has never prescribed this drug before. Neither of you really know what the side effects will be, so in case it turns out to be sedating you had planned on taking it at night. “Yes, pharmacy suggest you should take it in the morning.” Yes, but in the absence of clinical experience, you have been reading around on the internet and everybody says it makes them sleepy. So you want to take it at bedtime. “Well, I’ve written it up for the morning,” persists the ID. Well… look, the only information either of you has on any sedative effect comes from patients. So given that the only information you have suggests it’s sedating, isn’t it better to start off taking it in the evening? “I suppose it doesn’t really matter as long as you take it at the same time every day,” (this seems like a major concession) “but I think it’s best if you take it in the morning.” You take it in the evening.


Posted in Bipolar, Crisis care, Depression, GP, Medication, Mental health, Mental health services, NHS services, Psychiatry, Social media, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , ,

Who cares?

There is a little note on my phone. Depressed me made it a couple of days ago in an attempt to remind the rest of me – the high, the normal, the mixed bits – that I need things to be different, that I need to be well, that what I do impacts on how I feel and upon others. That my behaviour matters.

It’s a prescription advising me to do all the things I was doing before I started to wobble. Of course it’s far to simplistic to say that my mood is now less secure just because I deviated from my plan to keep well through meds, diet and and exercise, but that’s how it feels. Just before I came unstuck I stopped eating five a day when I had been eating 6-9, and I allowed sugar and caffeine back into my life. I know I can’t have lost my stability just because I didn’t make the effort to meet my Apple Watch fitness goals, there has to be more to it than that. But certainly things began to deteriorate around the time I stopped making the effort.

And so the logical thing, the note reminds me, is to get back to on track. If I don’t want to feel awful – and the low bits have been becoming progressively more awful – I need to take action. If I put that effort in again and it doesn’t work, well, it doesn’t work. But there’s no point in not even trying and them complaining that I feel awful.

And yet… I don’t care. Logically, of course, I do. I don’t want to get any more unstable than I am. I remember the pain, I remember being able to think about nothing other than how much I hurt, how much I wanted to take my own life, and I remember how the despair I felt in hospital was beyond what I could ever put into words. But I can’t really connect with it. It’s like the way I remember Alice’s birth, how much worse it was than Max’s, yet part of me still feels that it can’t have been that bad.

Every bad day is followed by a good day or a hypomanic day and I think about the note, and then I think, “Meh.” Today, I am high so I don’t care about anything much other than running all over the town centre taking up shop assistants’ time chattering away and spending too much money. I don’t have time for self care!

When I am low, I don’t care either. It is too much effort. I have realised that it is almost a relief to sink into mild-moderate depression, because I have spent so much time there over the course of my life. In a bizarre way I have even been a little happy to be depressed, because it is so much easier than doing all the “shoulds” that trying to stay well entails.

But if I don’t care for myself and I get sicker, Tom will end up being my “carer” again. I hate this thought. Being the carer and and the cared for is not a great dynamic for a marriage so I have loved the fact that since I started the lurasidone we have been on more of a even footing again. Partners. I dread becoming ill because I know that earlier this year it was taking a terrible toll on him. So now I worry that the wobble goes beyond that and it all comes tumbling down it could make him sick, and the worry about this is making me even less steady. Yet do I do the things to try and prevent this? Somehow… no.

Despite enjoying greater balance within the relationship, in some ways slipping back into the cared for role would be so easy – just like sinking into the soft bed of depression. Having Tom attend appointments with me and make excuses for me, put me to bed, drive me places because I can’t go on my own, manage my meds – I shouldn’t want any of that, but part of me does. I have become so accustomed to being looked after, and it’s hard to break free from that. I miss the nurses and doctors of the Home Treatment Team. I miss the ward staff. I would like to be cared for my them again. I crave the feeling of having no responsibility. I know that is fucked up.

Before I went to sleep last night I read the note and resolved that today would be different. Today I had cake crumbs for breakfast. By 1.30pm I felt that I should eat something, but I was out and busy and I wasn’t able to think of a single thing I wanted to eat, although I couldn’t stop thinking about having Coke. A contrast to the start of the week, when I was low and constantly wondered what I could eat next, except I wanted a Coke then too. In the end I grabbed a hugely calorific sandwich because it was next to the aforementioned caffeinated beverage. I have eaten no fruit or veg today and hardly any protein and I don’t care. I did go to the gym, and I was restrained enough to make sure I didn’t inure myself, but I can’t be bothered to hit all my fitness goals.

Depression and hypomania make people not care about things. That is part of how they are diagnosed, so my thinking and behaviour make a certain kind of sentence. But I am frustrated because I cannot seem to connect logic with those thoughts and actions.

Don’t care was made to care, and if I don’t get things back to where they should be, I probably will be too.


Posted in Bipolar, Depression, exercise, Hospital, Hypomania, Mental health, Mental health services, Mood disorder, Rapid cycling, Self-management, Uncategorized | Tagged , , , , , , , , , , , , ,

A disappointment

Rome wasn’t built in a day.

Baby steps.

Recovery is never linear.

Two steps forward, one step back.

It’s just a setback

Everyone has wobbles

Yeah. Only up until now entering remission had felt so straightforward that I had genuinely begun to feel that it would stay that way, that for the first time since 2010 I would be actually well.

I started the lurasidone in September; things quickly began to improve. I became established on it and was more stable than in a long, long time. There was still a lot of healing to do and a lot of confidence to be regained, but I believed I could maintain some sort of momentum. By early October I had a plan, an actual written plan, of what I wanted to do in order to gradually widen my circle of activities and people in order to eventually get back to work.

I joined a gym and began to really enjoy exercise more. I started to lose a significant  amount of the quetiapine weight and felt good about that. I cleaned up my diet, cut down on sugar and caffeine and gave up alcohol. I went back to choir to a really warm welcome, and felt dangerously close to actually completing a term and singing in a concert. I started to be able to go out and about locally, although problems with using the tube meant that I couldn’t go any further. But I would tackle that.

And so I took a couple of tube journeys to the CMHT (ten minutes) and it was OK. It was a bit scary waiting on the platform at That Station, but I managed. I went on a longer trip in the suburbs with Tom. After I wrote my last post I really wanted to try going in central London a try, as I knew it was holding me back from becoming work ready, so I arranged to meet a lovely friend in Zone 1. I picked a time outside rush hour. I picked a straightforward journey on a familiar route with only one change. And yet it was awful.

I cried on and off the whole way. Maybe I should’ve just got off, crossed to the other platform and gone home. But my friend was coming from outside London and I hadn’t seen her in a very long time, so I pushed on. I was slightly early and as I waited for her in the ticket hall at Green Park station I went into full meltdown mode. I didn’t care who saw how much I was crying or how badly my hands were shaking, because there was nowhere to go where people wouldn’t see me. I might as well cry in the ticket hall as on the street or in M&S.

Yes, it was lovely to see my friend and I did enjoy spending time with her. But I was dipping in and out of wobbles over lunch and cried all the way back, arriving at home exhausted and wishing that I hadn’t even tried.

It was such a disappointment.

I have no way of knowing whether I coped so badly because I was becoming low, or whether the experience triggered a new burst of low mood. Whatever the order of events, a week later I can’t stop crying. I am unable to resist going back to bed in the day, and once I’m in, I struggle to get out. I’m back to being unable to take the tube without becoming distressed and have to go to appointments via three buses each way. Basic tasks seem to have become incredibly difficult. I am assailed by apathy, doing things not because I want to but because I suppose I should. I am living on sugar because eating healthily seems just too hard.

I feel like such a disappointment.

I was doing so well that I felt like a kind of teacher’s pet at the CMHT, that I had created the expectation of being an ongoing success story. I feel like I am letting my care co-ordinator and consultant down by being unable to maintain progress. I feel that I am letting my psychologist down even though we recently finished therapy, because she put in her report that she had watched me “blossom”, and now I am not. I even feel like I am letting my physiotherapist down because I can’t find it in me to do the exercises I know will help my injured foot.

I have worked so hard to stay well but I am in a vicious cycle where every time I don’t do the things I had put in place to keep well I hate myself, and the self-hatred feeds into the low mood. Every can of Coke, every abandoned physio exercise, every missed Apple Watch target, every skipped choir rehearsal. I can’t understand why I can’t do the things I could do a week ago.

Above all, I was proud of myself for being able to give Tom a break from the relentless grind of having to care for me. I feel so disappointed that he will be exposed to depression yet again. I don’t even know how to tell him exactly how things are; I’l probably have to get his to read this, because I don’t know how I can articulate the shame of it. Of course on the scale of destruction this mood state in relatively minor. But he must think – as do I – here we go again. And both our hearts will sink.







Posted in Bipolar, Depression, Employment and benefits, exercise, Mental health, Mental health services, Mood disorder, Psychiatry, psychology, Self-management, Treatment planning | Tagged , , , , , , , ,

Fitness for work – the real life questions the system never asks

So I filled in an ESA50 last week and was reminded afresh what a terrible form it is.

Yes, we all know it’s terrible, a terrible form for a terrible benefit in a terrible system. It’s not designed to be helpful and it’s not designed to be fair. But I can’t help thinking: imagine if this form were made so that the questions actually focused on what you have to do in order to hold down a job? 

I’m at risk of not passing Work Capability Assessment because I’m not so desperately ill as I was and the bar is very high, so I might be seen as fit for work simply by virtue of not currently being under the wheels of a train. I have a fluctuating condition, so I have to choose the “it varies” option most of the time, and my enduring memory my last WCA is that a verbal “it depends” irritates assessors as it isn’t tidy.

Unfortunately when it comes to deciding when to go back to work it’s just the DWP and me, and they don’t really know what to do with self-employed people. I’m not a “jobseeker”, but I don’t have an employer. I don’t need support to find work, but I don’t have a manager or occupational health department to help me. When I can’t work, I claim. When I can work, I stop claiming. This isn’t tidy either, and seems an unending source of puzzlement to call handlers and Jobcentre staff.

So I have to be my own HR advisor and review the evidence. Am I work ready? Is a return practical? I’m going to take the radical approach of making my questions directly related to work!


Can I get up in time for work?
Probably not. Sudden antipsychotic sedation means I forget to set alarms. Sleep-wise, lurasidone is the gift that keeps on giving, because once the sedation wears off a couple of hours later, the relentless insomnia kicks in. Despite zonking out at 10pm I only get into good sleep around 7am, so I don’t trust myself to hear an alarm anyway. Getting to medical appointments for 11am is doable, but 10am’s a massive struggle. To be at a work thing for 8.30am would mean getting up 6.30am, and that simply doesn’t feel possible at the moment.

Can I get to work?

There’s a question on the ESA50 section on going out which is somewhat sensible as far as it goes, since it asks about known and unknown destinations, travelling alone or accompanied. But it doesn’t ask the central question around fitness to work: can someone actually get there?

For me, it depends (sorry). I can’t work from home all the time because I have external commitments like meetings, conferences, training, research interviews, etc. Travelling within a short distance of home feels OK, but almost all my work is central London or outside the capital.

I haven’t taken public transport in rush hour for months so have no idea how I’d cope with the crush. Then there’s the issue of prior suicidal behaviour. Buses are fine but I’ve been avoiding the tube since I was last hospitalised in July. Standing on the platform while fast trains whizz by is distressing and I can’t use national rail at all.

I have no real idea how long it’s been since I was in central London. Four months? Five? It was an ordeal then – too many people, noise, mental stimulation – and lately I have become more reclusive. Tube travel into Zone 1 is the big thing I would have to crack before being able to work, and until I can manage national rail I won’t be able to go to events elsewhere, which really limits opportunities.

Can I attend work promptly and reliably?

I genuinely have dreams where I’m offered an interesting job but remember that I can’t guarantee to be at my desk. It wouldn’t matter how part time it was or whether I picked my own days, I just can’t say that I will be there when I should be. Hell, I don’t even sign up for the choir tea rota, conscious of the possibility that I could be suddenly unable to follow through (true fact).

Just because I don’t have a workplace doesn’t mean I don’t have to be reliable. Freelancers still need to turn up to external events as necessary. Even when at home I still need to be ready and present for calls, teleconferences, Skype meetings, important emails. No show, no payment.

Can I cope with change?

This is the remit of Q14 of the ESA50, but it only deals with “small changes in your daily routine” and many work changes are far from small. Even cancelled or rescheduled meetings throw me, and the projects I work with can be quite fluid and hit an impasse or never pass proposal stage. I struggle hugely with changes in project leader. Even if I could take the tube, route changes because of delays would be scary for me. Maybe some days I could cope with that, but on others I’d be a wreck, because it… depends. I don’t have enough resilience yet.

Can I concentrate at work?

 It’s pretty easy to reel off a list of work tasks that are really hard when you can’t concentrate. I’m struggling with dates and times. I’d have to be able to juggle multiple projects again, sustain focus throughout meetings, remember the names of training participants (and judging by the length of this blog, I would also have trouble meeting word limits).

Mental health conditions are rife with concentration-suckers, from the fog of a sedated or depressed brain, to the flighty mind of hypomania or the intrusive thoughts of anxiety. Even when my moods are quite steady exhaustion from persistent insomnia and anxiety about getting things wrong are leading to an absolutely marvellous Catch-22 whereby I get things wrong and feel tired and anxious. Just this week I managed to lose a spreadsheet vital for my tax return, yay me.

Can I behave in an “appropriate” way at work?

Q17 on social situations is useful to a degree. I have issues around appropriate behaviour, most obviously when hypomanic, but psychotic stuff is a problem too and I can’t engage when I am very depressed. Guess what guys, it depends.

But there’s much more to being seen as “appropriate” at work, a lot of which disadvantages people with mental health issues or ASDs. If I’m out of home (or on a video call) I need to scrub up, put on my unofficial uniform, brush my hair, put on a bit of makeup. I may well need to be social over lunch or at a team meal. I’m often in meetings where we do the “go round the room and share” thing. I might be able to do those things today. Next week, I might not.

Can I make sure I am paid?

Sorry, DWP, but most of us aren’t going to want to work just to get ourselves of your books. We work to get paid and the landscape of work these days involves myriad ways for people to not get what they are due.

Me, I have to bid. This requires confidence, if not downright chutzpah. My current view of my skills and talents is low, so I’m not swimming in chutzpah. Then I have to have the organisational skills and memory to invoice, and know exactly what I am invoicing for and for how much. Since I just lost that spreadsheet I’m not particularly secure on this. If payment doesn’t show, I need to have the assertiveness and communication skills to chase, something I hate even when well.


So am I ready to go back to work? 

No… but getting there. I will get back in that saddle, but it’s going to require more time and more patience with myself. At least writing this post has made me more aware of the remaining – and very real – barriers that need to be tackled in order for me to get up, get ready, get to work, do the job and get paid for it.

I’m making a very tentative plan involving looking up previous work contacts, seeing if there could be any projects which are more home-based, taking baby steps on the travel front. As far as sleep goes I have to just hang on in there and hope I adjust, because neither my consultant nor I want to throw more drugs into the mix.

What I really need is a way to gently but steadily push forward with my own phased return, but I have the sinking feeling that I am entering a twilight zone whereby my own assessment based on my knowledge of my condition, treatment and job is that I am not well enough to launch back into employment and earn my own money, but the DWP’s uninformed assessment is that I am not ill enough to deserve theirs.

There’s a lot of talk right now about possible reforms to ESA and the offer of “tailored support”. But until the DWP applies real-world questions in assessing work capability sick and disabled people will be told every day that they are totally fit to do jobs that simply can’t exist, or that because they can do actual jobs one day a month they can do them every day. You’re either in, or you’re out. There is no “it depends”.


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