I feel like I have run through what I wanted to say here and I have started over with a new angle over here:
http://thismentalhealthblogisyours.wordpress.com
I know loads of you lovely people have subscribed and I haven’t written much here in ages, but I promise loads of blogging will be had at my new blog gaffe and I very much need you to check it out because it’s you lot that will have the important things to say.
I saw Dr V.
We agree that I am headed for hypomania, maybe mania if I leave it long enough. We talked a little about whether to medicate a symptom or leave it and use coping skills. He agrees that we are treating for bipolar and that mania can be destructive. He has upped my Lamotragine, 25mgs more and we’re considering increasing the Lithium too. I take them at night, with little droppers of Star of Bethlehem and Sweet Chestnut and the little pink tablets with Valerian and Passionflower. I lie down swimming in sedation and I can’t sleep. I’m horizontal in bed and I’m dancing, nervous movement that can’t extinguish itself, the sheets getting more and tangled under my limbs.
I feel alive right now, even the breeze passing over me sets me ablaze with sensation and inspiration. I want to create, to birth my life all over again. This feels like a world with no rules, new and green and ready for me to stomp all over it. I’m trying to tame myself but it’s like trying to douse fire. It doubles in it’s fierceness and so I surrender to it.
I am estranged from my father and my fiance has left me. My brain doesn’t want to do grief right now. I wish I could be sad and respectful of the fact I have lost the men who loved me the most. I wish I wasn’t silly and sparky. This is not the time for humour, yet the jokes keep coming. After a while, it’s so horrible it’s gruesomely funny. To be so rejected. So alone. To have failed as a daughter, a girlfriend, a future wife, to know that I am inadequate in so many ways. No one waiting at the bottom of the aisle and no one to walk me there. I wish I could mourn but my heart seems to be cartwheeling, because there is nothing left. The things that held me fixed in space have gone, and now there really are no rules.
I’m on fire.
The fiance is sleeping. He’s a big familiar huddle of duvet, sleeping as soundly and blissfully as always. I curl myself into his back, run my fingers over the hickman line scars on his chest. He sleeps on, no theatrical sigh or fidget will wake him.
I am awake. I thrum with energy. I’ve been clean of the anti psychotic for four days, which is it’s washout period. So this is the first time in seven years that I have been clean of it. It feels messy. I find that my cognition is worse rather than better, following conversations is hard. I got on the wrong train last night, without buying a ticket, sat alone as the cities rolled past in darkness, feeling dumb and tearful. That’s the sum of it, dumb and tearful.
The insomnia is the worst. Eventually the banging and shouting and music upstairs stops, which is my signal that I really am awake far too late. It gets deathly quiet then, and I wander around the flat trying to find somewhere comfortable. Except everywhere I go is I find myself, trapped in my skull with my synapses firing endlessly, swirls of useless thought and rumination. I try to meditate or use my Reiki but my hands feel dull. I keep telling myself, this is part of it, this is the withdrawal. It will pass. It’s got to, right?
Life feels difficult, because nothing I feel is proportionate anymore. It’s out of place or exaggerated or sometimes not at all, a horrible gap where a normal response would be. I feel horribly self conscious because I am not myself. Everything is bright and spiky, it seems to require something of me that I don’t feel that I have in this un-medicated state. I want to tell people, to explain. It’s outside most peoples life experience to spend years on medication that equates to a blunt instrument to the neurotransmitters. I’ve spent seven years sedated.
My dirty little secret is, I’m tempted to go back. I feel strung out. I have the pills in my drawer, next to my bed. The silver blister packs look shiny and tempting. It’s agony to lie down on my bed within reaching distance of them. I don’t want them but my body does, I know I’m not physiologically addicted but the re adjustment is hard. I long for sleep. I’m anxious and irritable. I am ashamed to miss the protective bubble around me, that numbs out the worst of life. The memories rush in at night, it’s not just scar tissue between my legs in those moments, it’s the sick feeling that it’s happening again. I know how it goes and on it goes, until I put on the light. My teens come back with a vengeance, the violence with it. It’s the horrible sense of futility that makes me angry, no one go out of that situation with any humanity unscathed, it was unjust and stupid and ugly.
I’m not going to give in. I didn’t live through it to medicate it away. They medicated me because I was frightened, I brought all the agony and laid it out in assessment after assessment. I wanted to purge it. Make.it.stop. Something must have been wrong with me back then that those things happened to me and something was still wrong in those assessments. I’ve it spoken it out loud so many times, in so many cold clinical rooms to so many unfamiliar consultants that it’s become sort of impersonal. Beaten and raped. Verbs, past tense. Men whose faces I don’t remember anymore, or care to. And so on with the medication. What more can be done for girls who couldn’t protect themselves and cannot forget?
No more anti psychotic for me.
I’ve not been on for a while. There has been a family issue. Issue is perhaps too vague a term for what has happened, but it will have to do. I’ve had to cut contact with my Dad. It’s been something I have done before, but failed to sustain, for a long while I have known I would have to do it again. It’s for my sanity, and for his, because I suspect that losing his daughter is maybe the only thing that has produced any self reflection in him. I love him dearly but he has a lot to sort out and he won’t get it done while I prop him up in his current delusion.
So there is a lot of grief. My mind scoffs at the Daddy Drama of it all, but it hurts-hurts-hurts. Like a big weeping wound. My family and fiance all support me, but they don’t see the need to grieve someone who caused so much damage. But I can’t just kick the dust off my heels and walk away. So it’s a lot like a break up, crying in the bath, staying in bed, listening to Alanis Morrisette songs, except for this break up is with someone with shares my genetics. Love him or loathe him, there is only one of him.
I’m down to 0.5mg of Risperidone every other night. I’m gonna try for every two nights. At this point I don’t think I getting a therapeutic dose anyway and I am starting to fall asleep naturally on the night I don’t have it in my system. The tricky thing about getting off it thus far has been my reliance on it to sleep. A few nights of not sleeping sends me bonkers, then my psychiatrist says I need to take it, and on the cycle goes. I’m trying to be really dedicated to taking my Lithium and Lamotragine while this is going on. I have a little voice in my head that wonders if I can reduce my Lithium next. I have no grand plans, but I wonder what else I could reduce or get off if I can cope without the anti psychotic I have been reliant on for so long.
I’m doing a lot of energy work, plus I have a mentor who is helping me with some medium work. I don’t want to go be some spiritualist church superstar or read for others. But right now I have a lot of people around me, not in an invasive way, but they keep hovering. I keep trying to listen to what they want to say, but they just stand around mutely. I made contact with my guides this week (the goat was there. Who has a scruffy old goat for a guide?!) which helped me feel more secure. Anyway, I’d like to know who is around and why and whether there is anything I can do to help them on their way to wherever they need to be.
I’ve managed to lose nearly a stone, which is great. I can’t wait to tell my psychiatrist. I feel like now I have seen some of the medication weight melt away, I might get my body back. I was always curvy and I’m not expecting some lean and firm wonder body. But I know I’m under a layer of antipsychotic blubber, which I’d like to take off.
So things are okay.
That’s the million dollar question. It pervades much of the posts I ever see on the online forum I am a part of. There are a thousand ways to ask, tentatively, angrily, desperately, disbelievingly, but the question hovers all the same.
I would say that mental health care is way behind physical health care in a number of ways, but one of them seems to be the sheer lack of knowledge about it’s origin and prognosis. There are no blood tests or brain scans, some brain scans can be done in rare cases for lots of money. But brain scans are not a standard test, they’re a university experiment. We’re in the infancy of picking out related genes and testing for them. The boundaries of what is and isn’t a mental health problem waxes and wanes within diagnostic manuals (being gay was in them as a mental health issue until relatively recently. Internet addiction is making it’s way in. Our society influences what we consider to be ‘sick.’) We treat mental health problems with medications that target neurotransmitter functions in the brain, but there is little in common between what two patients can experience taking the same drug for the same diagnosis.
With so little data and consensus, it’s hard to talk about the future. So most of the professionals that I have met, don’t talk about it. I had one psychiatrist who told me I would never function enough to work, have a partner or a child. I can’t really describe the legacy it had upon my life. Suffice to say it was on a par with the guy who sexually abused me, who, one day, took my face in his hands and told me ‘Some people don’t get to be happy in life, Heather, you are one of them.’ So in one sense maybe the prognosis is something too huge and devastating to put in a fallible psychiatrists hands. Maybe it’s best we don’t know.
However I yearned to know. I had to have something to hold to. I remember being ill and going to support groups. I met people with severe and complex mental problems, people who had their lives stolen by it. People living in residential homes who had their lunches packed for them. These people wrote wonderful poetry and told jokes, they had the same personalities and concerns that I had on a basic level. People loved them and they loved other people. It took me a while to realize that they were just the same as me, minus a few of their faculties. But I’ll be honest, at first, they scared the crap out of me. I didn’t want to be like that.
I wrestle with this question sometimes, other times it’s far from my mind. What I learned is that there has never, ever been a time in my recovery where there wasn’t something positive and empowering I could choose to do. I don’t know for sure if I have bipolar, or a personality disorder, or a mix of the two. Those diagnosis are labels stuck onto my experience, which is unique. I am unique. The future is an unchartered territory, I get to boldly go and find out exactly what fucked up people like me can achieve. I have a sphere of influence over my life. I can control some of what goes on. I control things like diet, exercise, social contact, meaningful activity, medication, therapy techniques, sleep etc. I control the way I choose to think about what happens to me, even if I have little control over what does happen me.
I look back at blogs from previous years or I speak to friends. I can see I can do things now that would have felt impossible to me back then, when I first got sick. My mood patterns have shifted. My personality disorder traits have receded. I suffer less now, maybe I have got a bit better, maybe I slapped enough radical acceptance on it all to find that I have peace of mind where I suffered.
I think about the future. I heard that the divorce rates for first marriages with people with bipolar are twice as high than those of people with other disorders and three times higher than the general population. I think about that. I can’t have children while I am medicated. I think about that. I wonder if I’ll always have unstable moods or if one day I can work full time. Sometimes, when I am really undisciplined, I catch myself thinking about all the things I might lose if I got sick again, really sick. My fiance has not seen me really sick before.
But the brilliant thing about the future is, to some degree, it’s what you make it. The great thing about us not having a clue what mental health prognoses are is that we can forge ahead with self belief and make it up as we go along. Is it better to not know then be told the outlook is bleak? I think so. One day, I’m going to look back at my wedding photos and talk about about my career with my beautiful kids and I’m going to think about that psychiatrist and laugh.
The future belongs to you. It’s your call.
I was walking home in the dark, on my way home from the University Library. From the corner of my eye, a light began to flick on and off. As I turned, I noticed the light was coming from an upstairs window in a darkened house. On. Off. On. On. Off. I watched it for moment. I didn’t really notice the lack of curtains and the to let sign in the garden, not that night. The light was sort of beautiful, I mused to myself. It felt significant. Why was it flicking on and off? It meant something. I was sure of it. After watching it for a few minutes, it went black again, so I went home. My flatmate Zara asked me how I was. I told her about the light.
”The house is empty, isn’t it?’ She frowned, distracted by the cheese toasted sandwich she was making.
‘Weird’ I said, and went to my room.
If you had asked me prior to my breakdown what I thought being delusional would be like, I’d have used to word weird. What was weird was that, being delusional wasn’t weird at all. It started with a light that I’m not sure ever existed, in a house that was unoccupied. The world slowly began to make sense. Things that seemed insignificant and random became pregnant with meaning. I wasn’t always very coherent about what that meaning was. But the ordinary things that other people missed began to be signs for me, that there was a grand purpose, a plan. One which included me in the starring role. It was my time.
I’d had hallucinations for a few months before, and they continued. They were of the scary, nightmarish, dreamscape nature, the sort of thing where my worst fears and insecurities presented themselves before my senses in a way that I couldn’t process. I’ll blog about them when I feel more confident thinking about them. When we were kids in the eighties, other kids used to dare us to say ‘Candyman’ before the mirror five times, even though we knew we were talking about a piece of cinematic fiction, we would still shrink from doing it. That’s kind of how I feel about my hallucinations, as if blogging about them may summon them again, climbing out of a mirror.
The misconception about delusional people is that they are that sort of all out crazypants that they are easy to spot. I was pretty normal for quite a while. The slow creep only made it more horrible. The first symptom I really had was this aching sense that everything was blissful. Everything was so beautiful, it made my teeth hurt. I reeled. I tried to blog about it once, but words failed me at how ecstatic and sublime day to day student life has become. My flat mates were convinced I had met someone and fallen in love. I hadn’t, but I grinned my way through life anyway.
I suspect I was manic too, because aside from the doolally bliss, I had a voracious appetite for my studies. Sleep, eating, I did the bare minimum, and a lot of boozing. I studied all the hours the library would admit students. I had a free pass to the Theology Library at Canterbury Cathedral, a small and heavenly library (literally) full of books I pored over. I loved my Theology, but after a while, I wasn’t reading the lines. It was the negative space around the lines, between the words, edges of pages, that seemed to speak to me. Mysteries and secrets of the universe began to enfold as I sat in the libraries, strung out for more messages. I delivered a presentation on Mysticism that term, which I got a first for. I knew that of which I spoke.
(One of the most frustrating things about recovering from delusions is even though I was convinced I knew the meaning of life and the universe, I can no longer remember at all what they might have been. Which is a real shame…)
Of course, with great knowledge comes government surveillance. Although delusions often vary according to culture, I’ve been on an internet mental health forum enough years to see patterns. The chosen one/special knowledge is one. The ‘I’m being persecuted/am under surveillance/being assassinated’ one is another. I suspect they are very much linked, but I might be talking out of my arse. Anyway, the burden of knowing the truth flipped into being pursued. I became edgy. I lived in a back bedroom on the ground floor of my student house. I had a patio door out onto the garden, through which I would smuggle sex partners I felt my flatmates wouldn’t approve of. The patio door became a great source of anxiety for me. People were watching.
In the end, I confessed to my room mate that people were talking to me through the television. She called my parents in Yorkshire, who then drove overnight to pick me up. I don’t remember any of it. In fact my memories of those few weeks are probably lost forever.
The quality of my university work had become chaotic, my assignments often veered off course. My tutor was very generous when I made a case that the Eucharist meant a kind of spiritual time travel occurred. My tutors were disappointed when I left (much to my surprise) as the quality of my work was very good. I was doing an essay on Jesus’ use of the term ‘son of man’ when my parents picked me up. They peeled countless post its off the wall, my every thought had been recorded and stuck on the wall, rearranged endlessly. It wasn’t creative or brilliant as much as it was scattered and frantic.
It took a while to heal. I went on an anti psychotic, which helped. I had psychotherapy and behavioral therapy, which helped. Therapists sat with me while I ranted about cameras and microphones and hoards of angels following me. e unpicked the truths from the delusions, reality testing each one. The thing about a delusion is it often takes a root of truth and spins it into something huge. Reasoning with a delusional person, you have to admit that yes, government surveillance goes on. It exists. The question is more ‘why you?’ and ‘why now?’ Delusions are tricksy because they play on what is possible and convince you of the impossible.
I had to go through the process of un-sticking myself from the gum that was my delusional state, peeling myself away in a raw and humiliated state. My ego had to re-calibrate while I joined the ranks of everybody else and the real world they inhabited. It’s a hard thing for anyone to admit they were wrong. To be so incredibly wrong, to be so incredibly unreachable, it felt so painful. I questioned my every opinion and experience. I had to learn to trust my own judgement, to guard my thoughts and test them.
I don’t fear it coming back. I have orientated my life around it being low stress, as stress was a big trigger for me. I take my medication and use my therapy tools to manage what does stress me out. I am careful about what I expose myself to, much of my theological reading has gone by the wayside, I have to be very careful with spirituality. I don’t like what my brain can do with it. I’ve found that mindfulness has helped me connect with the mundane aspects of life. They’re not ecstatic anymore, but there is a quiet kind of joy that comes with engaging with what is in front of me in awareness.
Lithium, maybe it’s one of the last frontiers of scary-medications-no-one-wants-to-take. It’s been used for centuries, yet it has taken a back seat to some a newer, sexier anti convulsants that don’t come with all the blood tests and toxicity risks. Whether it’s because it featured in the title of one of Cobain and Co’s eponymous songs or because it’s a natural substance we happened upon, it’s famed for the myths and powers ascribed to it.
I had a mood disorder for years and years before anyone gave me Lithium. Once we figured out that anti depressants made me jittery and eyebally and anti psychotics made me feel like the living dead, there were other directions to go in. Namely Sodium Valproate, an anti convulsant used to treat epilepsy, and later bipolar. When my psychiatrist prescribed it to me, he muttered about weight gain and then said ‘You may have your hair fall out. It happens. The plus side is, if it does fall out, if it does grow back, it will grow back curly. We don’t really know why it does that…’ Like my gorgeous ginger crowning glory was some kind of civilian casualty.
It wasn’t as bad as all that. Some of my hair shed, just bits and bats, not enough to affect how it looked, but enough to have to clean out the shower plug. I gained some weight, but my slow descent into obesity had be going on since the anti psychotic days. Sodium Valproate did little good for me, but it didn’t little harm either. We got stuck in the no mans land of ‘It’s not working, but it’s not creating a crisis, so we’ll just hang on here for while.’
(Raise your hand if you’re there, and take a slug on some gin. It’s an infuriating place to be.)
Eventually, some spectacularly bad life events (I fell in love, unwisely, moving across the country after quitting my job) ended up with me in a ward. This was 2008. I had two admissions in two months, the second one I was nearly sectioned. I’m one of those people who gets quite mental without realizing it, a hospital admission is usually my cue to scrabble for insight. There is nothing like a keypad and locked door to make a person question why they ended up there.
I saw the consultant. I decided to invoke the power of Lithium. I didn’t know much about it, or anyone really who was on it. Well Richard Dreyfuss is on it. Carrie Fisher was on it. But I don’t *know* them. I just sat there, all sad in yesterdays clothes and I pressed for Lithium. I was granted my wish. Because starting Lithium is a royal pain in the arse, being on a ward was ideal to start.
I had an ECG, which I hate having because the pads never stick to my boobs properly and keep pinging off, so the nurse has to keep putting them back on and I feel like we’re in a Carry On film. Trauma of that aside, I had to have a blood test, a blood pressure test, weight taken, someone admonished me for weighing as much as I did when the ward was serving me two hot puddings a day. The dose was titrated (a fancy word for increased) up gradually over a few days.
It felt like being a boat, just all the time. A sort of nauseating, sealegs type of feeling. I didn’t vomit or anything. I spent a week on leave, bobbing back between the hospital and home, sinking myself in baths, all quivery and overcome. I had my blood tested a few times until we arrived at a dose. The blood tests test the concentration of it in my blood, there is a ‘therapeutic range’ people are kept in, between 0.6-1.2 mmol/L, over that and there is a risk of toxicity.
Lithium toxicity is one reason people are so terrified of Lithium. It’s a naturally occurring chemical, kind of like salt. It was first used in the 2nd Century AD, though no one really got the market on it till the 1940′s, when Dr Cade injected a form of it into guinea pigs and found they became lovely calm rodents, which I think is what he hoped his patients would become. There was a lot of work in the 1960′s to further it’s use among patients with manic depression. It used to be sold as a food seasoning, which is odd when you think about how paranoid people are about it now. We don’t know how it works as a medication, just that it often does, very well. It has the longest studied track record of the medications out there, it’s far more effective and tested than any other one available and it was the first ‘medication’ for mental health issues, which helped move away from ECT.
Lithium toxicity is a build up in a persons system of Lithium, from things like dehydration, changes in salt intake, doubling doses or taking them too close together, using NSAIDS (Ibuprofen) and overuse of diuretics like alcohol and caffiene. The symptoms are:
Tremors/uncontrollable eye movements/vomiting/diarrhea/drowsiness/confusion/coma/slurred speech/ringing in the ears/ muscle weakness etc.
All the above looks pretty terrifying. However this can all be avoided by having regular blood tests to monitor levels, taking doses exactly as prescribed and being careful when taking other medications. Plus once you know there is a risk, you get on top of any mysterious symptom as above, pretty much as soon as you get it. My levels can go a bit wonky but I’ve never had any level close to toxicity since I began in 2008, and I’m known for dicking around with my dose and drinking a bottle of wine every now and then.
It’s hard to describe what Lithium does for me without lapsing into hyperbole, but really, it saved my life. Within days I felt this odd sensation, a sort of balanced, calm flavor that I realized over time was what everyone else called ‘normal’. It didn’t sedate me, it just lopped off the heavenly heights and the hellish lows and gave me somewhere to set up camp in, somewhere in reality. I’d been spent year trying to slough off layers and layers of depression, every time finding a new kind of despair. I didn’t need to do that anymore, it was gone. Underneath it was me, it took some time to get acquainted with the non depressed me, but I liked her. I like who I am on Lithium. It feels weird to admit that something on the Periodic Table I learned at school would hold the key to my sanity but it absolutely does. I don’t get the side effects anymore. The worse I get is a dry mouth, which means more dental work, but other than that it’s plain sailing.
There are plenty of sites on the internet with scary horror stories about how Lithium will eat your brain and ruin your life. I’m sorry my experience of it isn’t a little more rock and roll. Lithium gives me back m life, without it having much of an intrusion in my life. Yes I have to pay for it (grr) but £7.60 pr month is a small price to pay for having a life. I have to take it at the same time, every three months I get punctured for my lovely blood, I now have to brush with a fluoride toothpaste and I can’t go wacky with table salt but it’s probably one of the least maintenance medications I have ever been on.
Here are some angsty songs about Lithium though:
Which suggests that, as pharmaceuticals go, you might be able to pen a ditty about this one. Plus, in a way, Princess Leia took it. So that must up the cool points!
