The Battle Plan: The NHS, the DWP and me

Thank you for inspiration! I shall work my way through it.

It’s only just occurred to me that many of you don’t know anything about my situation, or how I got here. I talk about treatment constantly, but have never clarified what treatment actually is. So, allow me to explain, in brief, where I’m from, what a Crisis Team is and what my treatment is at the moment. Some of this I have gone into before, so consider this a summary, a “previously, on Mentally Interesting….” if you will.

It started with hospitalisation. Well, technically, it all started years ago in a land far, far away, across the billowing winds of the Irish Sea, rolling sewerage onto the coasts, the crisp air punctuated by indecipherable Northern Irish swearing and sloping shadows of hand in pocket tracksuits stretching across the grey sand.

Inland, in a council estate in West Belfast, you had me, clinging with arse-white knuckles to disappearing, yet oblivious, sanity.

I think that some people are born with manic depression. I suspect I might be one of those people, as I was an odd, clingy, temperamental child (with emphasis on the “mental”). But I didn’t become “ill” until I was twelve. I developed a pathological fear of being seen and lived in anoraks, refusing to go out until it was dark. I hated the way I looked and made every effort to hide myself. I had started self harming, and then depression came. I was bullied, very badly, until that point, for various “too”s- being too small, too smart, too poor, too fat. My self esteem was non-existent and then, depression and self hatred seemed utterly natural, an expected reaction to events in my life. Nobody, including myself, thought anything of it.

In the years that followed, I was caught in the cycle of classic manic depression; swinging from one pole to another, constantly, without pause. My manic episodes were extreme, blotted into psychosis. I didn’t sleep, I worked feverishly, I talked, and talked, and nobody understood me, I was grandiose, inhabitant of the colour-running world of hallucinations and delusions, I ran riot, I had risky encounters, I was openly and legendarily mad.  I was so far gone, my delusions were deep rooted, I have imagined whole people who didn’t exist, places, events, and couldn’t separate reality from delusion. The months of mania would inevitably be followed by months of depression, and so it continued.

When I was sixteen, I was diagnosed with a mood disorder and given medication to not take. Anyway, from then I knew I had manic depression. Well, knowing is a strong word. Insight, they say, is the beginning of recovery. But insight is not admitting, “I am an alcoholic” or, “I am a manic depressive” and then continuing on the same lines. Then it is a trite excuse, and is not really believed because the implications of both are overwhelming. There’s work involved, medications to be taken, a life to be changed and altered, to be lived differently. I had no insight into what was wrong with me.

About three years ago, my moods started to accelerate, with months becoming weeks, becoming days, and becoming constant. The “euphoric” mania was replaced with dysphoric mania, or mixed episodes and I lost all sense of stability. In 2006, my dad died. I was already fairly ill then, but in the next months, I went to hell. I suffered a severe mixed episode that turned psychotic and ended up with me slashing my throat.

So, we’re back to hospitalisation, and here is where my treatment began.

I was in hospital for a few days. It was in Haringey, a borough of London notorious for its bad mental health services. It certainly lived up to its reputation. The hospital itself was a dreadful, dour shithole, staffed with inattentive nurses who basically let us wander aimlessly around the halls or spend hours in the smoking room. Taking a shower, I couldn’t get a towel so had to wrap my bedsheet around me, then sleep on it later. Medication time was the only time we really saw the nurses; the rest of the time, the office door was locked so the only option was to knock, wait for fifteen minutes, then slink away, disappointed. The medication itself was geared towards killing mania and psychosis, in my case. I took Haloperidol, an antipsychotic, and Lorazepam, which, as far as I know, is a sleeping type medication.

I was diagnosed as suffering from bipolar I disorder (generally seen as the most severe type, however, I think this is up for debate) by the psychiatrist and then discharged into the Crisis Team, who are a group of nurses and doctors that look after you at home, rather than in hospital. I had lost my job prior to my hospitalisation, and they rather stupidly urged me to look for another, even though I was clearly unwell. I was considered to be manic by the time I went home.

The Crisis Team’s main job was to administer Lithium. Lithium is generally the first medication to be prescribed after a diagnosis of Bipolar I. It’s considered effective, but it wasn’t in my case. Mentally, it did nothing, but physically, it made me shake and vomit. By November, I had found a new job, and shamefully I looked like an alcoholic at my desk, my hand tremors were so bad. I had to phone in sick on days that I suffered from lithium toxicity, which is when the levels of Lithium build up in the blood.

In the first few months after my diagnosis, I was in vicious denial that I had manic depression. I had spent my whole life thinking, this is the way I am, and there’s nothing wrong with me. I had refused time and time again to go see a doctor, even when those around me begged me to. To go from that to being a psychiatric patient was humiliating. I had always maintained that if something was wrong with me, it was minor and transient. Manic depression was neither minor nor transient, and I could not accept it.

I asked frequently for second opinions, telling the Crisis Team that the doctors had got it wrong. They did humour me, and I saw another two doctors, who both diagnosed me with the same thing, which was bipolar I rapid cycling. I railed against it, crying, screaming, kicking and scratching, yelling at anyone who mentioned it. It took me a little while to get my head around it, longer still to gain true insight into my illness, which, even now, I sometimes lose. Things are “mild” to me, even when they leave me housebound. I’m still sometimes unwilling to accept being ill at all.

My moods were not improving at all, and at the start of 2007, I had a manic episode and lost my job. My relationship with Rob was suffering, too. The tailend of mania was a trapped feeling, an aggressive teeth-baring type of mood. We had gone from fun couple to doctor and patient. My moods were cycling badly, and the medication made me sleepy, incapable of sex and highly irritable. So I moved out and we split up. I wanted to give him his life back. I felt ashamed of myself because I couldn’t be wild and wonderful anymore, even though he’d deny that I ever was. I hated that I had to live quietly in order to be sane, and I hated myself for the trouble and suffering I was causing him, and for the cold, dull feeling I had in my chest, the almost cruelty of emotions that mania can bring, and leave, even when it slips away. We got back together some months later, but it’s unlikely we’ll be living together again, not for a long time. I still hate myself for that period of time, even though it was necessary for me to move out.

It was also galling to know that things I thought were part of my personality were part of an illness that they wanted to medicate out of existence. I had to slow down, when I’d been running around for years and the energy and quickness I’d been known for had to go, amongst other things. I had to stop drinking because it worsened my mood and fucked with my medication, and I’m from a group of social drinkers, and I feel old and boring. I’m twenty two and should be reckless and irresponsible, getting pissed and falling about, but I’d probably end up back in hospital. Funny how a few years ago I’d never even have thought about that, and now I’m petrified of it.

I was assigned a CPN. I wish I had a good word to say about her, but I don’t. I saw her once a month, sometimes less, and the appointments would be for fifteen minutes, in which she would nod and take notes. It confused me, the whole thing. I didn’t know why I was seeing her because our meetings achieved nothing. She kept advising me to get a job, oblivious to the fact that I kept losing them. From November 2006-September 2007, I was fired from a total of seven jobs, variously due to manic and depressive behaviour. My manic behaviour, in the setting of work, involved me seriously overstepping the mark on many occasions, for example, this. I would talk and talk, confuse people, disclose intimate details and act inappropriately . I worked hard but could not concentrate, so the work suffered. Depressive behaviour meant I could barely get out of bed, and social anxiety would kick in so I was frequently having panic attacks. I was noticeably a wreck which personally and professionally confines you to a doomed straitjacket. People are personally uncomfortable around someone who is clearly sick, and professionally, I couldn’t perform.

I lived in my own place by May. It was in a new borough, Islington, so my care was to be transfered. The whole process took six months, by which time I was on the verge of homelessness because I kept losing jobs.

When I met my new CPN, I had just come out of an episode of psychotic depression. The old CPN had given me antidepressants, but that kicked me into an furious hypomania, for the second time, effectively taking antidepressants off the menu forever. I’d tried to kill myself by overdosing on Lithium and I didn’t tell anyone for a while. When I did, it pissed people off. I guess it’s just a fearful reaction, but I felt very alone. So for that period of time, I relied on the Samaritans.

Islington was different, though. I was on Depakote and Seroquel, which was working, to a degree. My swings were becoming less severe, yet still very frequent. I was still completely unstable and the work situation was making everything worse. I’d get a job only to lose it, and each time, it chipped away at my self esteem. The uncertainty of finance, uncertainty of everything, was driving me mad.

The first time I met with the Islington team, I was introduced to the psychiatrist and my CPN. They explained what their approach would be; weekly appointments with the CPN and periodic reviews by the psychiatrist. They asked me about my living and work situation; a cold bedsit, trying to find a job.

I am on an Enhanced CPA which means I see my CPN frequently. She monitors my mood and steps in when things get bad, like recently, when she was considering admitting me to the Crisis Centre, and she called in the Crisis Team. I see the psychiatrist for medication reviews. Islington has given me one of my Mentalist Commandments: Mentalist: know thy services. The Enhanced CPA also means that technically I’m a risk to myself and others. It’s true! Uncomfortably true. I’ve harassed random passersby in manic times, gone home with total strangers and psychotically believed people were out to get me, therefore lashing out at them. It’s that kind of thing that makes me squirm a little bit, to know what I’m capable of.

One of the first things that the Islington team did was to take me out of work. The psychiatrist advised me to stay off until I was stable enough for work and wrote a sicknote. The previous CPN’s encouragement to get jobs was discarded. The new CPN agreed with the psychiatrist, and set about helping me get benefits.

This was a chore. I applied at the beginning of October and was turned down for Incapacity Benefit due to a lack of National Insurance contributions. They wanted to know everything about me, from my income (nil) to the colour of my knickers. At this point, I was surviving on kindnesses and donations to this blog.

The DWP proceeded to lose all my forms so I had to start again. My CPN helped me with everything, writing letters and applying for DLA for me. It took two months before I saw a penny, and two months or rent I couldn’t pay. That period of time was incredibly stressful.

I am off work for the forseeable future. The opinion of the psychiatrist and CPN is that I should be stable for at least six months before attempting to work. I’ve managed a month at most so far! The problem of going back to work before being well was made abundantly clear in the previous months; I was fired a lot, and it meant I had no money for bills and rent. The instability of my situation reflected the instability of my mood. If I go and work before I’m able, I risk losing my home. If I ever live with Rob again and try to work before I can, then he might be homeless too.

Although I come across as very coherent, my illness is classed as severe because it relapses constantly. I have had very few periods of stable mood, nothing coming to over a month. They’re certainly not as severe as they used to be, but that’s not particularly useful when my moods still fluctuate massively. It might not sound bad to you, but consider the average case of bipolar I disorder. They have nine episodes in their lifetime. I’ve knocked that out in a year. I mention work frequently, because I do feel guilty for being dole scum. I remember how proud of me my dad was when I got my first job. I feel as though he would be ashamed of me now. But my CPN and psychiatrist tell me not to even consider it right now, and that it’s okay that I need to claim benefits. They’ve backed me up a lot, and have written a lot of letters attesting to what’s going on, so that makes me feel less guilty.

It doesn’t mean I am lying on my arse all day, though. I make an effort to write and do odds and sods for other people when I can. It doesn’t translate into disciplined work, though, not right now. This period has been the longest I’ve been off work. I’ve worked almost constantly since I was seventeen.

The other problems are my medication- which is now Lamictal and Seroquel. Seroquel is very sedating, so I can barely function in mornings. I take 100mg of Lamictal and 400mg of Seroquel. Occasionally, others are thrown in during bad times, such as Valium to quell anxiety.

My treatment takes up quite a lot of time and if I had a job, the chances are I’d have to quit being treated for this. I am starting therapy soon. My CPN is ace, and Islington is a world away from Haringey. But because I can’t take medication for depression, the only thing I can do is learn coping mechanisms. The practicalities, the getting dressed, is hard. So therapy will be helpful for that. There are other things in my life, manic depression aside, that I find hard to deal with. My dad’s death and Brendan’s death are things I need help with, things I rarely talk about. It’ll also be helpful for the periodic times that I am overwhelmed totally by the realities of my situation, and I want to flush all the medication down the toilet and burn my medical records. There are times in which I just sit and cry because I didn’t ask for this, and because I have fucked up so much because of it. I expected my life to be totally different than this; I was meant to do so well at school and university, but because I was ill, I scraped seven GCSEs, got kicked out of college and put my family through hell. I have to take medication pretty much forever, and even missing two doses dramatically worsens my mental health. That irritates me. That stuff is sometimes very difficult to face up to, as is the knowing that all I can do with this is manage it and not cure it. That terrifies me. Manic depression is episodic, and I have no idea if these frequent, less extreme mood swings are the best I’ll get, or if, one day soon, as in the past, I will be blindsighted by a massive episode of depression and mania that will proceed to ruin my life.

So, the plan is:

1) Continue seeing the CPN weekly, who gives me emotional and practical support.

2) Call in the Crisis Team when things get out of hand.

3) Frequent medication reviews and adjustments. I get some input into this because my medication has made me gain an awful lot of weight. I also have problems with self image and eating, so gaining more weight isn’t exactly helpful. It does make me squidgy and comfortable to lean on, though. My hair started to fall out when I was taking Depakote, too, so I had to take vitamin supplements for that. Mentalist medication really makes you sexy, doesn’t it.

4) Not looking for work until I’m stable, but still trying to do stuff to keep my brain from liquidising. Attempting to do stuff to keep my body from liquidising, though that’s difficult because I often become fearful of leaving my flat. I’m working on that, though.

5) Keep Rob informed of “crisis plans”- i.e having the CPN’s number and knowing about the Crisis Centre.

6) Getting therapy to learn how to cope with living with manic depression, amongst other things.

7) Seven was to move out of my bedsit into my own place, but I have done that now, so hurrah!

So, at the moment, that’s kind of what my life revolves around. It’s a lot to me, because I went from someone who even refused to see a GP to someone who has a nurse and a bag of medication. My CPN has hope for me because I have decent insight into my illness. Recovery is an ambiguous word. No one has really defined it for me so far. The general opinion of the people who look after me is that, for now, I need them and that my mood swings are more in control of me than I am of them. When that dynamic swifts, or if it does, then “recovery” might have some meaning. God, it’s going to be a bloody load of work.