Part time mother?

I’ll say it as it is: my children only live with me at weekends and during school holidays.

In real life interactions, this is the point at which I see something pass across people’s faces, especially if they are a woman, particularly if they are a mother. There’s a flicker of surprise, even a glimmer of shock. This is where I brace myself for the inevitable question: “But don’t you miss them?”

Sometimes, if I’m feeling strong, I will tell the truth: “Not all the time; not as much as you might think.” Now the shock will often coalesce into horror and bewilderment. Because what sort of a woman doesn’t miss her own children?

I didn’t say, of course, that I don’t miss them. But that’s what people hear. So I have a little spiel prepared which I trot out when I am called on to explain why my kids don’t live with me full time. This comes up when, say, friends ask me which of the local schools the children go to, or colleagues assume that I have to rush home to spend time with my kids. I say it quickly, slipping in answers before there are painful questions. I explain that my ex-husband and I have had joint custody since we divorced almost 10 years ago. When we lived close by, we had a 50/50 residency arrangement, but even so, it wasn’t long before the school voiced the opinion that it might be beneficial if the children lived consistently with one parent during the working week.

Here’s what I don’t say: when we split up, it was less than a year after my worst ever bipolar episode. I had been unwell since the birth of my daughter in 1999, but things peaked in 2001 when an unrecognised dysphoric high led to me take an overdose. During that period, I was literally  incapable of caring for my own children. So in the back of mind there was always the possibility that in future I might once again struggle to be a consistent and functional parent. I was never willing to get into a custody battle over my children anyway. I didn’t think that was good for them, and it would’ve been incredibly unfair on my ex-husband, who so often had to do all of the parenting because I could do none. I don’t usually tell people that I was the one who really wanted to have children, that I convinced myself  that if I had babies to look after I wouldn’t be able to be mentally unwell, because I would “have” to pull myself together for their sake. I don’t disclose how ashamed I continue to be that I was so dreadfully wrong about that.

So I say brightly that their dad was always very hands on, and I knew when we separated it was never going to be a case of him or me. I was going to have to share. I had the opportunity to live and work in London, but the children were settled and happy in their school 50 miles away, and had extended family support from grandparents, aunt and cousins living close by. I didn’t want to take them away from these foundations.

I don’t say: Moving was one of the hardest decisions I have ever made. Leaving the area gave me a chance for a new beginning, with a new job, and a new partner. It was an opportunity to start again, to see whether being stable on medication would allow me to live a normal life under different circumstances. But I lay awake in bed at night agonising over my choices, worrying that I would damage my children for ever by reducing our contact, yet equally worried I would damage them anyway if I fell sick again when they were in my care. I told myself over and over that a happy and consistent mum would be beneficial for them, but I still felt that I was a terrible mother, a dreadful person.

I describe how things work. How we’ve been doing this now for over six years and have a very predictable routine that the children like. Until recently I went back to our hometown every Friday and brought them to London on the train. Now they are teenagers, they come into London by themselves, and I meet them at the station so we can take the tube home together. I still bring a little picnic for us to share as they tell me about their week. We have a structured pattern of weekend activities they enjoy, and they have London friends they look forward to seeing on Saturdays and Sundays. They call both my flat and their dad’s house “home.” My son is considering applying to sixth forms in my London borough.

I didn’t say, of course, that I don’t miss them. The truth is that sometimes I see a child a similar age to my daughter and I feel a sharp pang of longing, or I run across something my son would get a kick out of, and my heart aches. But if I let myself miss them all the time, I could not cope. I have to compartmentalise, a kind of extension of the way I would try not to worry about them at nursery while I was at the office. Now they are older, I feel their absence less keenly anyway; emails, texts and Facebook all keep us much more connected. The hardest times are when they’ve been with me 24/7 for weeks, over the Christmas or Easter holidays, or away on a blended family holiday with my partner’s children (two girls, now young adults away at university). When it’s time to give my children back I find it incredibly painful, but try never to let it show. I cheerfully kiss them goodbye as I drop them off at their dad’s house, and I wait until I am back in the car before I cry. I may not have my children physically with me every day, but there is no such thing as being a “part time mother”.

For a long time I was the only woman I knew who was the “weekend parent” to her children. For me, one of the benefits of social media is that it has put me in touch with a number of other mothers who have serious mental health problems – and who don’t have their children with them all the time. This has been tremendously comforting. I have always believed my decision to be the weekend parent was not the act of a monster who doesn’t love her children, but a very rational, practical decision that was in the children’s best interests. But sometime other people’s judgmental reactions have sometimes made it very hard to keep the faith.

I do appreciate than during the years I was in remission, it seemed like there was nothing at all wrong with me. Obviously this will have made my family set-up harder for people to understand. But there have been long periods in this current episode when I would have been completely unable to manage the business of the school week. I cannot ensure children are up, dressed, breakfasted and out the door with packed lunch and clean school uniform while taking antipsychotics that make me sleep until 11am. Even now I am moving towards recovery, I continue to struggle enough just getting us all to our weekend activities. And with the children away for 70% of the time, I have managed to avoid them being present for the vast majority of the really bad days I’ve had over the past two years. When I have been in crisis, talking wildly of ending my own life, lost in the panic and terror of dysphoric mania or unable to move from my bed in deep depression, my babies were somewhere else. And I make no apology for that.

Struggling with my body, struggling with my mind

In January, I wrote about my feelings about my weight, and my history of unhealthy relationships with food and dieting. I concluded the post by saying that I was going to focus not on weighing myself, or dieting, but on choosing real (i.e. not junk, or empty calorie) foods and picking exercise activities that I genuinely enjoyed. That approach worked really well – for about 4 weeks. Then somehow I lost the ability to think kindly towards myself or sensibly about my food choices. I ended up buying a whole new set of clothes for my holiday in a bigger size, and returned from the trip towards the end of March with a renewed Coca-Cola habit and “f*ck it” attitude towards what I ate and drank. Fast forward eight weeks. Now many of the clothes I bought in March no longer fit either. Even my partner, who is usually the soul of tact when it comes to my weight, has made cautious mention of the fact that he’s been looking at photos from previous holidays and can really notice the difference in me. I keep thinking of a cliff-top walk I took with my family at Easter, and how for the first time in my life walking up hills had me puffing and panting, to a degree that I could barely enjoy the view. I also keep thinking of how I try very hard not to see myself naked in the mirror these days, or let my partner see me unclothed. Those are new developments, and not welcome ones.

And so I decided that before yesterday’s visit to the psychiatrist, an appointment that would mark one whole year of treatment, I would have to bite the bullet and weigh myself. Before commencing meds, I had been required to get a range of physical health checks done, including basic bloods, blood pressure, and weight/BMI. So my BMI for May 2011 would be in my clinical notes, ready for comparison. I found myself dithering about, talking about all kinds of other topics before I raised the issue of weight; when you’ve been skirting it for months, it’s hard to address head on. At my request, my psychiatrist called up last year’s BMI. There it was: I have gone up 3 BMI points in 12 months, and am heading towards the borderline of overweight and obese. I know that BMI is not uncontroversial and has flaws, but that’s how the NHS took a baseline last year, so that’s how it got measured this year too.

We talked about the causes. Obviously I know it’s not all about the meds, but there’s no escaping that lithium and quetiapine both have known side effects of weight gain. There’s also the fact that I still feel yanked about by my moods. Feel low/tired/brain fogged? Have some chocolate, have a Coke! Feeling high, tunnel vision about a project? Who wants to stop to eat? Boring! Both of these approaches to eating lead to “focus on the now, worry about the consequences later” approach. The low/tired me will do anything for a quick fix and moment’s pleasure, while the high me will leave eating until my body is desperate for fuel, then eat the first thing comes to hand.

What about exercise? My psychiatrist acknowledged how difficult it can be to physically active when you are feeling heavy, sleepy and demotivated. I am still undergoing a constant upwards creep of the quetiapine dosage, something that’s been going on for about six months now. My symptoms, which are general signs of hypomania such as elation and poor sleep, break through. The dose is then increased, and my symptoms are held in check for a while. The downside of this is that I sleep much longer and feel sedated during the day. Then my symptoms arise again, and the does goes up another 50mg. And so on.

I made it clear that I do know what to do to lose weight. I am not stupid. I understand calories in, calories out. About eight years ago, I lost four stones in weight by following the WeightWatchers online programme. But that was under very different conditions. My mood was completely stable on meds of a kind that did not encourage weight gain. I was single, so did not have to struggle as I do now with a partner who gains little weight and continually brings crisps, chocolate, wine and biscuits into the house. I’m at home all day now; back then walked to and from work and went up and down the office stairs all day. It feels like everything is stacked against me now, and I need help.

So what could the NHS offer? Basically, nothing beyond suggestions I have already considered. Yes, it would help me to make a meal plan for the week and stick to it; but if I feel low or very sleepy, constructing a meal plan will be beyond me; if I feel high, I will consider it a boring annoyance. It’s true, I could ask a friend to exercise with me, however most of my day-time friends are elderly and/or physically disabled, and fitting around my working friends means being at home alone all day, then going in the evening just as my partner comes in. Yes, I could rejoin WeightWatchers. £10.95 per month is not an insignificant sum when on benefits, but is at least nowhere near options such as LighterLife, whose weekly charges would wipe out my entire Employment and Support Allowance payment in one fell swoop. And yes, I suppose I could hang on until I’m more stable, and worry about it later.

So it seems that I have two options. I can try and fight against all these competing drug effects and mood fluctuations and see if I can lose weight now. Or I can wait until the drug effects and mood fluctuations have lessened, although nobody knows how long that will take or how much additional weight I will gain while I’m waiting. Either way, any costs incurred from exercise classes, gym membership, or weight loss programmes will be borne by me. Given my ever increasing risk of conditions such as heart disease, diabetes and hypertension, and the fact that my prescribed medications are a significant factor in why I weigh as much as I do, it would make a lot of sense if the NHS could offer a little more support. I know I am not alone. There are thousands of mental health service users out there who feel that they are struggling with their bodies, as well as their minds.

I don’t look crazy, I don’t look sad

Seeing me at the family party, you probably think I am fine. I arrive on time with my partner and children, bearing the promised contributions to the refreshments. You see me doing the rounds of hugging, kissing, asking questions, quickly catching up with relatives not seen for months, admiring the prodigious growth of children. I remember to ask about what’s been happening with a cousin’s business, check on the progress an in-law’s university course. I offer to wash up (but get waved away), top up others’ drinks as I top up my own.

So I don’t look crazy. I don’t look sad. Perhaps I am even a little more sociable and ebullient than you expected of me. I tell a funny story. I make the younger children laugh. I remind my teenagers to tell their great uncle and aunt what we did on holiday, to say please and thank you. I seem fine. A least fine, maybe more than fine, better than fine. I’m really chatty, which could just be that I’m having fun, or it could be that second glass of wine. Even if I’ve just told you I’m still sick, that I’m not yet ready to go back to work, you probably can’t see it.

You watch me returning again and again to the buffet. It is, after all, astoundingly good and eye-wateringly ample. There are salads of all kinds: salads made with potatoes, with green leaves, with hard-boiled egg, with pine nuts. Immense platters hold all kinds of meats, and another bears an entire cold trout. Pork pie, bread, quiche, and Coronation chicken compete for our attention. Later, cut-glass bowls of fruit salad, jelly, and your carefully made trifle, are brought out to take over the table. A Victoria sponge involving cream and fresh strawberries is displayed on a cake stand. Everything is as satisfying to the eye as the stomach, from the sea-glass green of the jelly to the blush of the gammon slices. You might be thinking I just have a healthy appetite, or that I am making a deliberate show of appreciation for the work involved in the meal, or perhaps, that I am just giving in to naked greed. In fact, it’s the drugs in my system urging me back for more. The antipsychotics, or the lithium, or maybe both, are well known to drive users to consume calories. It was easy to think when they were first prescribed that I wouldn’t get fat, oh no, not me! Other people may have ballooned, but I was going to watch what I ate, I would start running again and make sure I trained regularly. I would not succumb. And yet somehow I am two dress sizes larger that when I saw you this time last year.

As I leave, everyone makes sure to say that it’s been wonderful to see me. We should do this more often! There is a tentative suggestion that we meet when the weather has improved, aim for a barbecue. Getting into the car we wave and wave, until we turn the corner. I’m not even home before the anxiety kicks in. I start to think back over everything I’ve said and done at the party, worrying about what kind of an impression I’ve made. I start to believe that I did seem sick, that now I’ve gone everyone else is saying things like, “Oh, dear! She’s really not very well, is she?” I get the idea from somewhere that when people say how nice it’s been to see me, they’re just being polite, and actually couldn’t wait to be rid of me.

Two days later and the same slight high that had me bubbling over at the party has made a complete switch into dysphoria. I am continually out of sorts, ill at ease with myself, unhappy in my own skin. My energy level is elevated, but my mood keeps flipping back and forth between elation and despair, irritation and paranoia. I am managing social interaction very badly. I am already in emotional discomfort, yet feel compelled to do things which can only make it worse. I find myself in vehement disagreement with almost everything I hear on the radio or read online, and am driven to tell people why they are wrong. I am unable to ignore a Twitter argument or a blog comment thread, or to allow others to hold what I consider to be muddled or poorly though through opinions. I cannot agree to disagree and mean it, and so risk alienating my online support networks. Feeling cut off and alone drives me into deeper and deeper psychological anguish. I feel desperate, unable to bear what’s going on in my own head, dismayed by the realisation that I have been going round and round in these same loops for over 25 years, and terrified that I can’t see an end to the cycles. I spend an afternoon employing every distraction technique I can think of to stave off the desire to take a small overdose, just to knock myself out for a bit.

It would make sense if I were better at ease with real life friends, among whom there is so much less risk of the misinterpretation which occurs so easily online. But in fact it turns out I cannot do people at all. The next morning I get myself out of bed early, with considerable difficulty, as the antipsychotics are still lying heavy in my system central nervous system. I manage to get to choir for 9am and fulfil my first soprano duties. Afterwards is a chance to meet up with some of good, supportive friends I’ve made and talk as we flick through the Saturday papers. But on this occasion, when someone tries to attract my attention, to my shame that I pretend I haven’t seen. I run away, because the thought of being asked how I am, of having to make conversation, terrifies me.

If my social skills are very much off, in this slight high I seem to have acquired extra prowess in other areas. I am really happy with some of the writing I’ve been doing. My vocal range, the quality of my voice, and my sight-reading ability (which is usually pretty dire) all appear to have mysteriously, dramatically improved with no effort on my part. Except… have they? Am I simply displaying typical bipolar grandiosity? Do I really think I’m better than ever, or are the altos making faces at me behind me back? Does anybody really like me? Because I don’t very much like myself.

Even if I don’t look crazy.

No Magic Fixes: the do’s and don’t of mental health drugs

Think back, if you can, to 1995. I’m 20 years old, and so far I’ve spent much of university life acutely depressed. I’ve somehow just about kept myself alive into my second year, and even managed to submit my essays on time, but there’s been little joy in my student experience. I don’t socialise much. I’ve spent most of my time at home, consciously squandering it on video games, trying not to feel. Eventually, I pluck up the courage to see the practice nurse at Student Health Centre; I really have no idea where else to go for help. She is all breeze and bustle, whisking me from reception with the words, “Right then! What are we suicidal about today?” I freeze. How can she tell? It is only when I manage to mumble, “I don’t know, I just am,” and see her face change, that I realise it was a line, an ooh, you students with your personal dramas! throwaway opener she uses with everyone who looks upset. I am quickly passed on to the GP, who listens for a bit and informs me that in her opinion, I ought to see a psychiatrist. She hesitates, however, adding that I needed to consider that if I do, a Psychiatric File will be opened up on me. I have no idea what she means by that, and whether it’s as grave an issue as her tone suggests, but frankly I don’t care. All I want is to see the person who will give me the pill to make me well. I want someone to fix me.

A few weeks later, I am sitting with psychiatrist. Only, he’s not fixing me. He’s asking me loads of questions I don’t want to answer, about my past and about my present (and writing down who knows what, presumably to go into the File). I really don’t want to answer his questions. I’m not interested in rehashing my childhood, I just want to be given the right drug, so that I can go away and take it, and feel better.

18 years on, I’ve taken plenty of drugs. I’ve tried every class of antidepressant; antipsychotics, old and new; beta blockers; hypnotics (sleeping tablets); benzodiazapines; mood stabilisers; anti-epileptics. I’ve taken one at a time, combinations of several, big doses, small doses, and I’ve swallowed some sort of psychoactive drug every day since the year 2000. And guess what – in all that time, I still haven’t found my magic pharma sticking plaster. Instead, I’ve learned why my attitude in 1995 was so misguided; what the different types of drugs do; how to talk about them with doctors; and where they fit within an overall treatment package. If you are newly diagnosed and about to take psychoactive drugs for the first time, or even if you’re an old hand but have a medication change in the offing, here are some hard-learned dos and don’ts of mental health medication.

Don’t expect your medication to be a magic bullet/wand. While it’s true that some people are lucky enough to achieve complete symptom relief from their medication alone, they are probably in the minority. Most people still have to actively work at keeping at least some of their troublesome symptoms at bay. For example, they might seek to avoid stress or other triggers; keep to daily routines; exercise or involve themselves in the creative arts; make use of cognitive, mindfulness or distress tolerance techniques; and so on. Good drug therapy will hopefully reduce or relieve your worst symptoms, but is likely to be just one component of your overall treatment or recovery plan.  Maybe you’re not taking medication as longer term strategy, but have been prescribed “as required” drugs (for example, hyponotics, benzodiazapines or antipsychotics) for crisis situations. They can be a wonderful help, but remember that you are still going to have to manage your distress in the window between swallowing your med, and your digestive system processing it, and getting that drug into your blood stream.

Do ask questions if you’re not sure about anything. It’s easy think you’ve got all the information you need in the consulting room, only to find some major gap in your knowledge once you’re walking down the corridor with a prescription in your hand. Do you have any outstanding worries about side effects? Are you sure what time of day you should be taking your medicine, and whether you should take it with food or water? Do you know what to do if you accidently miss a dose? If you have any nagging questions about your meds, contact your doctor or ask a pharmacist, to get them addressed.

Do expect things to take time. Lots of time. Prescribing drugs for mental health is in many ways a trial and error process. Most GPs and psychiatrists will take the approach of starting with a “frontline treatment” – a frequently used drug which is known to have a good track record in treating your particular diagnosis. This could well be a drug recommended in your NHS Trust’s clinical guideline, and/or the national NICE guideline, for your condition. You may initially be started on a relatively small amount of the drug (especially if it has a lot of side effects, or might make you very sedated) and be given a series of increasing amounts, so that the dose can be gradually and incrementally adjusted (“titrated”) up to the intended therapeutic dose. Once at the desired level in your system, it can still take 3-4 weeks to be able to tell whether the drug is working as your doctor hopes. It can be difficult to cope with this period of waiting for relief, especially if your symptoms remain severe, and/or the medication gives you side effects before you see any improvements. If after a few weeks you are not experiencing much benefit from your medicine, your doctor may consider increasing the dose to see whether this increases effectiveness, which means another wait. All in all, getting established on a new drug can feel like a very slow process.

Some people will respond very well to the first choice of drug; others may find that even after being patient and increasing the dose, it still doesn’t target their symptoms well enough, or has side effects which are just unacceptable. At this point, you and your doctor may wish to consider a different drug. Sometimes you can stop one drug immediately and start a new one right away, but some medicines are dangerous to suddenly stop, while others can’t be started while you have another drug in your system. This means you can find that you have to gradually come off Drug 1 before you can start Drug 2. Sometimes they can be “cross-tapered”, which means you can gradually increase Drug 2 at the same time as gradually reducing Drug 1. Each medication change will again take weeks, first to switch the meds and then to see if the new drugs are an improvement. Family members and employers can find it hard to understand how lengthy the whole process is; I often say that it’s so slow, I feel it’s a bit like turning a tanker ship around. It’s probably more useful for them to think in terms of a few months to achieve stabilisation, rather than days or weeks.

Don’t take risks with drug interactions. Certain drugs mixed together can have nasty, even life-threatening, interactions. Your doctor will know what you are taking and will make sure any meds s/he prescribes are compatible, but medicines sold OTC (over the counter) at chemists or supermarkets are also drugs, and it’s surprising how many commonplace household medicines can be a problem. For example, I’ve taken antidepressants which couldn’t be mixed with decongestants, so I couldn’t take any cold or flu remedy for years. I currently take lithium, which is unsafe when combined with non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen, which I used to take regularly for back pain. To be safe, it’s always advisable to check with a pharmacist whether your OTC med can be taken alongside your prescribed drugs.

Do expect side effects. Psychoactive drugs may be prescribed for their benefits to the mind, but the side effects (also referred to as unwanted effects) are often very much felt in the body. When a doctor offers you a particular medication, they should be clear with you about what the main side effects are. Known side effects are often expressed in terms of how many people taking the drug would be expected to experience them. For example, a side effect experienced by more than one user in ten would be considered a common side effect. Side effects occurring in fewer that 1:10 users are considered uncommon, while rarer side effects may affect only 1: 100, 1:1000 or even 1:10,000 people taking that drug. Of course, there is no way of knowing which of the known side effects you will experience – you could experience several, or none at all.

Ideally, you should be given a PIL (Patient Information Leaflet) which explains the benefits of the drug, as well as its more common side effects, before you have to make up your mind whether this particular medicine is right for you. Many NHS Mental Health Trusts also subscribe to Choice and Medication, an excellent online resource which should answer most of the questions you might have about a particular drugs. In addition, some Trusts have a telephone helpline you can call with any questions or concerns about your medicines. Drug company information leaflets (which should always be enclosed when you pick up your drugs from your pharmacy) will also provide information on the full range of side effects, including the much rarer ones. Drug prescribing is a balancing act; you and your doctor should be aiming to get the maximum beneficial effect with the minimum possible side effects. Sometimes people find that the side effects plainly outweigh any possible benefit, but mostly the reality of life on medication is a that it’s a trade off. For example, at the moment, I feel the control of my highs, the improved sleep and the decreased nightmares that my meds bring are just worth the discomfort and stress caused by the muscle twitches, hair loss, digestive problems, extreme thirst and sedation. But only just. If one more side effect were to be added into the mix, I might have to re-evaluate and consider whether I still felt the same way. Hence…

Don’t be a hero. Some side effects are to be expected, but there’s no need to put up with more than you can handle. Nausea and even vomiting is one thing; not being able to keep anything down is another. Feeling somewhat sedated might be manageable; being unable to cross the road safely is something else entirely. Online networks can be a great place to find tips and tricks from people who’ve been through similar difficulties (would I have persisted with lithium, without Twitter advice to alleviate the nausea by swallowing it with starchy foods? I’m not sure), but if nothing’s working, it’s time to seek medical advice. PILs often suggest that if you experience any of the rarer side effects, or there is no easing of more common side effects a few weeks into treatment, you contact your doctor as soon as possible (preferably whoever described the drug) to talk through whether that medication is right for you. Giving medications a chance to start working should never be confused with trying to tough it out with something very difficult or frightening.

Don’t compare yourself with others. The same drug will affect different people differently – and not just mental health drugs, but prescribed drugs in general. You’re on 50mg of your antipsychotic and feeling totally zonked, while your friend’s on 1000mg and complains they still can’t sleep? Irrelevant. There’s no such thing as a “lightweight” where prescribed medicines are concerned. You’ve read of people with horrible side effects, but you feel physically normal? Doesn’t mean it’s not working, and there’s no definitely no need for “side effect survival guilt”. For every drug you can think of, there will be someone out there who thinks it’s saved their life, someone who thinks it’s ruining theirs, and someone else who feels ambivalent about it. As with childbirth, it’s probably best not listen to the horror stories of battle scarred veterans, if you can possibly help it, but to keep an open mind, and approach each new drug in a spirit of optimism.

Don’t fiddle around with the dose unless agreed with your doctor. Most people prescribed drugs for physical conditions probably keep taking them despite the side effects or restrictions on their lives (such as not being able to drink alcohol, drive, or stay up late). People with mental health difficulties, however, have a bit of a track record of tinkering with their doses and even just stopping their meds all together. One problem is the “Oh, I Feel Better Now!” Factor. Common in people with depression who start on a prescription for antidepressants, OIFBN! kicks in about the same time the drugs do. Rather than recognising that it’s the drug causing their mood to lift, people often tend to assume they have got better by themselves, and didn’t need the drugs in this place. I freely admit that I fell into the OIFBN! trap last year, when I failed to recognise that I had become hypomanic, and that if I felt wonderful it was because of mood fluctuations, not because I was “better”. Because I felt so great, I started reducing my medication, knocking me further off course, and the episode spiralled.

The opposite problem is the “They’re Not Working, So There’s No Point” trap. TNWSTNP also tends to occur in the early stages of treatment, at a point before many therapeutic benefits could even be expected. It’s always hard to wait several weeks for those benefits to kick in, especially if you’re in a lot of emotional pain. It’s also tough if you’re experiencing side effects, many of which are worst at the start of treatment. Couple that with the fact that we know depression skews people’s thinking, making us more likely to see treatment plan as hopeless and ineffective, and it’s no wonder then that so many people ditch the meds after only a few days or weeks, but – don’t! Hang on in there.

Do keep track of your prescriptions. There’s nothing more horrible that realising it’s a Bank Holiday weekend, or you’re away from home, and you don’t have enough meds. I’ve done my share of running round my local area looking for a pharmacy that’s open late at night, or on Boxing Day, in the desperate hope that they will give me a few days’ emergency meds until I can get to my doctor and obtain that Holy Grail: the repeat prescription. I don’t want that stress anymore. If you’ve a holiday planned, or there’s a Bank Holiday weekend coming up, check and check again if you’ve got enough meds to tide you over. One huge benefit of always taking your prescriptions to the same pharmacy, is that if you are caught short without a repeat prescription, they are much more likely to issue an emergency supply based on their records of your drug history.

Don’t stockpile meds if there’s a chance you might overdose. Not taking a particular drug anymore? Drop all those unwanted pills back to the pharmacy to be destroyed. If you’re worried about the overdose issue, mention it to your care team, and consider getting the minimum you can practically work around dispensed to you (a week? a fortnight?), rather than the standard 28 days or 3 months. If you’re still concerned, find someone you trust who can take anything more than a few days’ worth into protective custody, and give you more as and when needed.

Installing Bipolar v1.5

When I was (re)diagnosed as bipolar last May, initially, that was quite big enough for me to digest. But as the months went by, and I talked to more and more bipolar people online, one further question kept recurring: was I a bipolar I or a bipolar II? Many people I met strongly identified as one or the other, and some asked me outright which category I fell into. I couldn’t answer, because it was something my psychiatrist had never addressed. I looked up some first person accounts and some clinical definitions online, but found myself not much the wiser. Some of the descriptions of bipolar II sounded much less severe that the symptoms I’d had for decades; sufferers wrote about hypomanias characterised by “productivity” or “useful energy” which bore little resemblance my own sleepless, euphoric, reckless, or panciky highs. Many people with bipolar I, however, talked of psychosis and frequent hospitalisations which were also outside my experience.

Maybe, I began to think, I didn’t fit into either category? Maybe I was a kind of bipolar v1.5?

The American DSM-IV psychiatric diagnostic manual states that if you have ever had a manic or mixed episode (and perhaps, but not necessarily, a depressive episode), you have bipolar I; whereas if you have depression and your highs involve hypomania rather than true mania, you have bipolar II. Its European equivalent, the ICD-10, states that bipolar is diagnosed when a person displays at least two episodes of significantly disturbed mood/activity, sometimes showing elevation (mania or hypomania) and at others showing decreased mood and activity (depression). It does not distinguish between bipolar I and bipolar II at all. The Royal College of Psychiatrists’ booklet on bipolar defines bipolar I as involving at least one “high or manic episode” lasting longer than a week, and if untreated around 3-6 months, and depressive episodes lasting 6-12 months without treatment (although it agrees that some people with bipolar I will not have depressions at all). The RCP states that the key factor in diagnosis of bipolar II is that the patient will experience hypomania and not  “true” mania.

So if hypomania versus mania is the boundary between bipolar I and bipolar II, where is the boundary between hypomania and true mania? A much-referenced article by Guy Goodman, “Hypomania: what’s in a name?” appeared in the British Journal of Psychiatry in 2002 and explores this very issue. Goodman suggests that in the UK, bipolars more often get diagnosed with hypomania than mania, almost out of politeness; mania, after all, can have a pejorative ring to it (historical use of terms such as “maniac” certainly don’t make the diagnosis particularly palatable). He notes that in the DSM-IV, the term mania covers all elevated mood with functional impairment but specifies that mania can then be subdivided into mild, moderate or severe. So the kind of elevated mood that gets you admitted to hospital, or involves hallucinations or delusions, is definitely mania, and probably severe. But by this definition, other elevated moods which impair your functioning – your ability to go to work or hold down a job, fulfil your social or family obligations, care for yourself and keep yourself safe – are also manic, though possibly moderate or mild forms of mania. A burst of reduced sleep, however, with improved mood and increased productivity/creativity which allows you to get more, rather than less, done at home or at work, would definitely constitute hypomania. “The upper boundary,” suggests Goodman, “between hypomania and mania hinges on a definition of functional.” The ICD-10 also states that hypomania involves persistent mild elevation of mood and feelings of increased energy and mental efficiency; increased sociability and libido, and a decreased need for sleep, “but not to the extent that they lead to severe disruption of work or result in social rejection.”

Eventually I plucked up the courage to ask my psychiatrist about the issue. His view was that the distinction was really not very important in a clinical sense. After all, supposing he saw me as bipolar I? Well, he would probably start me on an antipsychotic or lithium, and consider referring me for talking therapies. And if I were diagnosed with bipolar II? Then he would probably start me on an antipsychotic or lithium, and consider referring me for talking therapies. He had a point. Yet the issue continued to come up, because I mixed with so many other bipolar people online. My perception of the bipolar community is that there is a hierarchy according to where on the “bipolar spectrum” (from cyclothymia, through bipolar II, to bipolar I) you sit. It shouldn’t be that way, but that’s how it feels.

The question arose again a couple of weeks ago when I headed to the University of Oxford’s Department of Psychiatry to participate in a large cohort study on bipolar disorder. This involved me giving blood and saliva samples and completing some computer tests, but first of all I was interviewed by a researcher and a psychiatrist about my experiences of living with bipolar. I had been asked to bring along a letter from my own consultant confirming my diagnosis, but still had to answer a number of questions to ensure I met the study’s criteria for inclusion. I was asked about the onset of my illness, when I was first diagnosed, whether I used any illegal substances, and whether I worked (I explained that I was in the process of losing my job due to my poor mental health). The next set of questions were along the lines of, “can you tell me about a time when…?”, starting with being asked to describe a time when my mood was very low. I tried to explain how my last serious depression, which occurred this time last year, had affected me. I told the researchers that once I began my period of sick leave I had struggled to get out of bed and that when I did so, I rarely managed to move from the sofa, staring out of the window all day clad in pyjamas and dressing gown. I described how I began to sleep more and more, until I was in bed for at least 12 hours a night and napping for 1-2 hours a day. How if I did go out, I was terrified of having to interact with people, so I stopped going into shops because “please” and “thank you” were too scary. I outlined the horrible intrusive visions of bizarre and violent means of self-harm I saw, and how they fed into my frequent thoughts of death and suicide.

Next, I was asked to describe a time when I had been high and not slept much. I decided to tell them about one of the most painful times in my life, an episode from around 10 years ago. Following a period of depression and hypersomnia, something had switched inside me so that I was not sleeping very much at all. I didn’t even bother to go to bed, but lay on the sofa while my husband and preschool children slept upstairs, tossing and turning and growing more and more irritable about my inability to sleep. During the day, I was completely preoccupied with being on the internet and, in particular, with being in chat rooms. I had friends in the chat rooms, but was also continually flirting and developing online relationships with strangers. This was all I wanted to do; I left my husband to get the children dressed and out to nursery and before they had even left, I was on the computer. I would often chat for 12 hours at a stretch, barely moving to visit the bathroom. Whatever I ate or drank, I ate in front of the computer, and there wasn’t much of it; one time when I did go out with friends (just to the supermarket), I almost fainted due to lack of sleep and food. Sometimes I gave the strangers from the chat rooms my phone number, and continued the flirtation over the phone. I even started calling men in other countries, without thought of the phone bill; all I cared about was feeling attractive and sought after, and when my husband challenged me, I grew angry and defensive. This went on for several weeks, over which I grew more and more agitated and slept less and less. Eventually something snapped, and I took an overdose, landing me with several days’ inpatient treatment to try to reverse any damage to my abused liver.

As I was telling the team about these particular episodes, it was if I were listening to a stranger talk about their lives. Part of me was thinking as I talked: wow, Charlotte, that stuff sounds crazy. Really crazy. You have been through some crazy stuff. The research psychiatrist looked at me. “I see you’ve brought  this letter from your consultant, thank you; and that it confirms you have a diagnosis of bipolar disorder. Did your consultant ever give you a more precise diagnosis?” Ah. I explained my consultant’s feeling on the bipolar I/bipolar II issue. “Hmm,” said the research psychiatrist, “the definition of someone with bipolar I is anyone experiencing marked impairment in social or occupational functioning. And-“ he looked down at my notes “-yes, well there you are.”

Only a dream?

“…And it had all been a dream.” I wonder how many primary school creative writing tasks I concluded with that tremendously original denouement?

Over the past few days, I have been dreaming depression. Just before I woke this morning I was dreaming vividly, experiencing the emotional and physical sensations of acute depression and trying to seek out ways to alleviate the pain. Only when I woke, it wasn’t “only a dream”. Those awful sensations were still there, and I immediately remembered that depression has been stealing upon me over the last few weeks. It started when I returned from my holiday; despite my many misgivings, I had ended up enjoying myself very much. There had been so much to see and do that was completely new to me, and at times I was a little over-stimulated by the unfamiliar sights, sounds and flavours. On a couple of nights I had to take a little extra quetiapine to ensure that I slept enough and did not get too “fast”. Once I was back in London I very quickly began to feel that now my holiday was over, I had nothing to do and nothing to look forward to. Days at home alone which I had filled quite satisfactorily before going away now seemed to stretch ahead of me, long and empty.

Before I could regain a sense of perspective, I met with my employer and it was agreed that it was unrealistic to expect me back at work any time soon. The organisation I work for has been generous and patient in holding my job open this long, but that can’t go on and, inevitably, my contract will be ending. So now it’s official: I’m economically inactive and not in a position to look for work until I’m well into recovery. Now there is no visible end to those empty, lonely days. I’ve been trying hard to counter this sense of emptiness, signing up for adult education classes and planning projects, but I am failing to convince myself. And as my mood gets lower, the depression and anxiety works its way into my dreams.

There’s plenty of evidence that people with mood disorders suffer disrupted sleep, including distressing dreams. One theory has it that people with mood disturbance “over dream”, spending too much time in REM dream sleep, and too little in the deep, restorative phase. This means that rather than night-time creating a break from the emotional arousal involved in states of distress, anxiety, irritation or elation during the day, our dreams continue to keep us in a state of emotional arousal. This makes perfect sense to me, as this is far from the first time that my mood states have stolen into my dreams. When I am predominantly anxious, I have nightmares, from which I wake gasping and flailing like a fish tossed onto the quay. The content of my dreams can also indicate an approaching high. It’s not just that I begin to sleep less; it’s that my dreams are so rich and vivid that when I do sleep I feel stimulated, rather than refreshed. They are usually delightful, sometimes outright humorous (I have woken up laughing aloud at a hypomanic dream before now), and sometimes X-rated, reflecting the increase in libido that is common in a bipolar high.

Dreaming depression means that the minute I wake, I feel very low. This morning I was in tears pretty much straight away. For the last few days, my mood has improved somewhat during the middle of the day, before dipping again in the evenings. It’s getting harder to get out of bed in the morning, but later I am reluctant to go to bed at night. I cried myself to sleep last night. Often in previous episodes of depression I have escaped into sleep, giving in to the seductive urge to sleep longer and longer to stop me feeling the pain of depression. This time it seems that sleep is no refuge at all.

 

The uncomfortable truth

Today I went into work for the first time in six months. 1st April will mark a year since the first day of my sick leave, and my employer needed to discuss my most recent Occupational Health report. The report suggested that it had taken some time for me to become reconciled to the fact that I was experiencing a very lengthy, serious episode of bipolar disorder, and that I would be quite disabled by this. At the assessment appointment the Occupational Health specialist had helped me to see that all the times I had planned a return to work – sometimes even fixing a date and agreeing the structure for a phased return – showed creditable motivation to remain in employment, but were actually indicative of denial about how bad things really were. Given my circumstances, the OH doctor suggested that while I would most likely be able to work again in the future, no-one could predict whether this would be in 3 months, 6 months, a year’s time, or even longer. Today’s meeting was to discuss how go forward from that position.

I started off being quite composed, but as soon as I saw my manager I began to feel very tearful. She and I have a long history of working together; she was my practice assessor during my professional training, and cheered me on as I completed the vocational component ahead of my peers and achieved the best degree mark of my cohort. She interviewed me for my first specialist post a year after qualifying, and made sure to provide me with developmental opportunities on a regular basis. A year later, she encouraged me to apply for an acting manager post, and continued to offer me great support from within the management team. She knew me as a person who had an active social life outside of work, who often stayed late to go on to one of the three choirs I sang with, or who went from work into central London to meet a friend for dinner. Neither of us understood at the time that this was remission, that it wouldn’t always be like this.

This morning, feelings of shock (maybe even horror), alongside compassion and sympathy, were evident on her face as I described what life is like for me now. How I have come to recognise that I have two choices, and I don’t like either of them. I can refuse the drugs and live with the symptoms, which will include broken sleep if partially medicated, or complete sleeplessness if not medicated at all. I still have not had a single night where I have been able to sleep without the help of antipsychotics since late April 2011. Unmedicated, my mind will move from busy, to racing, to something with the uncontrollable quality of a runaway train. This train can bring hallucinations and unbearable loops of music that play over and over again in my head, quickly leaving me feeling exhausted and frightened. Then I will want to kill myself. Or I can take the drugs, and tweak the dose ever upwards until I get to a level which will just about control my symptoms (I thought I was there, but actually maybe I’m still not). To achieve this control, the drug acts on my central nervous system, so I feel sleepy, get confused, forget words, forget names, lose things. I explained how I managed with difficulty to take my children to an activity at the weekend, but forgot to bring with me a critical item, and was informed by my partner on my return that I had left the iron plugged in. My manager has known me for years as an enthusiastic and dedicated caseworker, sorting out clients’ benefits, housing problems, drug treatment packages, employment advice. Today she heard that I am reduced to tears by letters from the DWP and was incapable of filling in a claim form Disability Living Allowance without the services of an advocate. I have to use my mobile phone and my partner to remind me to take the drugs, pick up prescriptions and request medical certificates. I explained that the drugs also have unpleasant physical side effects; how right now my Consultant is searching for explanations for involuntary muscles spasms (which can be a twitch in a tiny muscle somewhere in my finger, or a huge surprising jerk of an entire limb) and sudden hair loss.

Overall, the choice between bipolar disorder symptoms and bipolar med side effects just about falls on the side of the meds. I choose the cognitive impairment and the ridiculously long hours in bed and the handfuls of lost hair over the awfulness that is a dysphoric high and the urge to end my life. But either way, I am disabled; disabled by the illness, or disabled by the treatment. My priority used to be getting back to work, but now it is simply to prevent situations which increase my risk of suicide and/or might lead to hospitalisation. Often that feels like a full time job in itself. Most of the time I am used to the bargain, but seeing the realisation of my situation dawn across my manager’s face, I was hit hard by disparity between how I used to be and how I am now. I cried through the rest of the meeting. When other people were speaking, I looked down at my hands and watched them shake under the table. Not because anyone was nasty to me. Far from it, I felt that all participants were incredibly sympathetic to my situation. But we all understood that with the best will in the world, I am not going to be going back to work any time soon. The organisation is just going to have to decide what to do with that. Despite the tears, I felt a sense of relief. At least I can stop pretending everything’s going to work out fine and I will pick up my life right where I left off. I can stop feeling guilty each time I send in another medical certificate. There will be no more dates to return that I fail to keep. My recovery feels like a full time job, and maybe now it can be.