As I mentioned in my previous post I am considering taking lithium again. This was not my idea, in fact it comes way down on my list of ideas somewhere after “stick pins in my eyes”, “swim in a crocodile infested pond”, “go to a Miranda Hart gig” “listen to Demi Lovato”, “eat offal”, “take up card making as a hobby”….you get the picture.
Lithium is the idea of my Awesome Psychiatrist, a gentleman I was very lucky to be referred to and even luckier that he found me “interesting” enough for him to continue reviewing my diagnosis (diagnoses?) and treatment. It is not surprising that in light of recent events he thinks it might be time to try and introduce some sort of chemical stability into my chaotic life.
I trust the Awesome Psychiatrists completely, I did instantly, I have no idea why, I usually make mental health professionals work very hard indeed to earn my trust. The Awesome Psychiatrist is very skilled and very experienced he is a “designated national specialist” according to one website, I’m not actually sure what this means but he’s a nice guy, very funny, gives me tea during appointments and laughs at my jokes, all good qualities as far as I’m concerned.
In spite of this I am still in a quandary over taking lithium again, for reasons I will explain, some perfectly rational, some possibly less rational but no less pertinent for me.
I have taken many psychotropic medications in the past, so many I’m not sure if I can remember them all but I will try- bearing in mind I only came to the attention of the psychiatric profession (this time around) in January 2010 this is quite a list-
Various benzodiazepines
Various hypnotics
I took propranolol in an attempt to counter the tremor lithium gave me- it made me almost blind
I was also once prescribed Risperidone for about 20 minutes but never took it
These drugs were in various dosages, in various combinations at various times, I stopped taking anything on the 19th of January 2011. I started taking Agomelatine on the 16th of March and stopped taking it some 8 weeks ago for reasons that will probably soon become clear. I could write a blog post on each one and the reasons I hated it but this post is about lithium.
So I’ll start with the rational reasons I don’t want to take lithium again.
Lithium has many nasty physical side-effects; in my experience it causes agonising leg cramps, nausea, dizziness, constant fatigue, headaches, disabling whole body tremor, constant thirst, an insatiable hunger and accompanying rapid, uncontrollable weight gain. I don’t cope well with physical ailments, I tend to ignore most physical symptoms, preferring to ignore the fact I actually have a body at all. Feeling ill all the time forces me to acknowledge I have a body that is more than just somewhere to apply pyjamas. It makes me very uncomfortable. When I look back at diaries or blog posts I am reminded of just how dreadful I felt whilst taking medication. I accept I was over medicated, poorly medicated and poorly monitored but I have no confidence this won’t happen again. I would be mad to volunteer to make myself physically ill again.
Drug-induced weight-gain is tortuous, for anybody, for someone who likes to be in control of food as much as I do it’s even worse. I have managed to crawl to quite a sound footing in terms of eating disorder recovery, most days I eat three proper meals a day, snacks in between and have managed to make it through a whole month without any self-induced vomiting. No mean feat for someone who appeared hell-bent on starving herself to death a short time ago. I remember the incredible lithium hunger so well, I would be drop-down-dead starving almost all day, it never went away. I can’t help but think introducing a drug that messes with my metabolism would be self-sabotage at this stage.
Lithium is a mood-stabiliser, yes it helps prevent extremes of mood but it also has a tendency to cancel out all the ones in between as well. I functioned on lithium but I was without thoughts, ideas, feelings or reactions. I was empty; I am in danger of straying into the less rational reasons for not taking lithium so I will direct you to this post written by a much loved friend on the subject, she explains it better than I ever could.
So those are my experience-based, rational, understandable reasons for being reluctant to take lithium again. If I have the words and the courage I will try and explain the other reasons. I would appreciate anyone reading to let me know that they nodded and said “uh-huh” throughout this next bit as opposed to laughing aloud or further questioning my sanity, I have awareness that my beliefs are a little skew-whiff but this does not stop me believing them.
I often joke about being “poisoned by the medical profession” in fact during my first consultation with the Awesome Psychiatrist I made him promise not to poison me, I make it sound funny- I am deadly serious. I believe the medical profession want to poison me and make me something/somebody I am not. This belief has some basis in fact, after my diagnosis there was a tendency to attach pathological labels to all my past behaviour. All the things I did, all the things I achieved were painted with bipolar, taken away from me, turned in to symptoms as opposed to qualities. I believe that the psychiatric profession do not like me being who I am (or perhaps rather who I can be when not hooped-up on mentalism?) I am tempted to self-censor here as I know that what I’m about to say merely supports my diagnosis but I will go ahead. The psychiatric profession want me to be the same as everyone else, they want me to conform, be normal, be boring. I haven’t quite made up my mind if “they” (ie- everyone else other than me in the whole world) feel envious, threatened or just don’t like me, either way I know they want to drug the Zoë out of me.
The way I feel about this is paradoxical to my general feelings of self-loathing and I can’t really explain that other than perhaps by referring to that shameful symptom of bipolar- grandiosity. It is my understanding that grandiosity is a symptom of a manic state though and high or low I feel exactly the same way about lithium and exactly the same way about what “they” want to do to me. Even when I am crushingly low I would rather be dead than take lithium.
Simply thinking about taking lithium again makes me panic, it gives me the fear I shake and sweat, my heart races and I start scurrying around inside my own head. I have got as far as allowing the Awesome Psychiatrist to start the process, I am still in control, at this stage I have no intention of taking it.
I believe that in voluntarily taking those tablets I would essentially be killing a part of me. This sounds like a standard case of “missing the highs” and maybe it is, it feels much scarier and final than that though.
Lithium mutes the Zoë in me, it leaves behind a fat, trembling body inhabited by functioning parts, things get done but we don’t “do stuff” (“stuff” being a handy catch-all word to describe the stuff Zoë does). Having re-read that (very long) sentence I am aware I am possibly making little sense, except perhaps to myself. It’s 3am I should probably stop and have a milky drink.
I don’t know what to do about this situation, I clearly cannot continue the way I am, I am just not safe- in either mood state and I accept that I am unwell (though I am willing to argue as to just how unwell I am). However I know that if I take lithium, the author of this blog will die and I suspect she’ll take the twitter account holder with her, I will still exist in some form but I won’t be living.
Dont take lithium if it makes you hurt. It is horrible what kind of adverse effects it has on person.
Hi
thanks for your comment, it is horrible but then so is rapid-cycling, I need to do something.
Zoe
Xxx
Hey Zoe,
Just wanted to say that I really get what you’re saying – I remember when I felt that way very strongly. I think part of the poisining you thing is easy to understand in that the meds affect so much of your life that when the side effects are bad it *feels* like you’re being poisoned. It also kinda meets with the difficulty trusting MH people too.
The deeper thing there though is that the meds can feel like they actually remove your personality – they take away all the things you think of as you.
At the same time though, I do worry about some stuff, like how things spiral without meds for me at least. I think part of it is not letting them push the dose too high, and taking time to let each dose change kick in, but that is easier said than done.
Anyway, I’m rambling now when all I wanted to say was that I read, didn’t laugh, and got what you meant!
Lorna x
Hi Lorna
I’m glad you understand and didn’t laugh. There is so much wrapped up in what is apparently a straightforward decision, I am spiralling out of control- it’s all here in black and white (or is it green and white? I can never remember my blog theme) but for the moment I can comfort myself with the knowledge that I am in control of being out of control- a statement which possibly makes no sense at all but I know what I mean!
Thanks for taking the time to comment, welcome to the blog and twitter stream, it’s nice to meet you.
Zoe
Xxx
that was hard to read. not because it wasnt well written. it is. as always.i think i understand what you are saying, having seen you on the various meds at various times. but (there was always going to be one), i think it would be tragic to see the zoe in you disappear but i think that will happen as well if you dont take lithium. i think we (those of us who care about you and I am still one of them) will lose you permanently if you dont. i am not,NOT, trying to tell you what to do.just dont want to see one of these road trips end in us not having you at all.
Hi
I hear what you are saying and I can see that my behaviour of late has given great cause for concern but (there was always going to be one!) you remember what it was like, you remember what they did to me, you remember how nobody cared about the wreck I was? I can’t go back to that and I don’t trust dickhead psychiatrist (aka Dr Disnaecarey- thanks Joe) one bit, the guy is an idiot I wouldn’t trust him to do my laundry let alone take care of my brain. I am also aware that my concerns about side-effects have been all too easily dismissed before and I have been given no reason to believe they won’t be again. I know I need to do something, I’m just not sure I can do it. I’m sorry for all the hassle I’ve caused recently…………….it’s still all your fault.
Send more, better music suggestions.
Zoe
Xxx
Wow. This has really helped me to understand what my wife goes through. When someone has mental health problems it’s not at all easy to understand what they going through. I’ve had problems and my wife really has but its the drug side of things that help but also complicate matters. Thanks for opening my eyes.
Hi Mark
nice to meet you. I’m glad I’ve helped you understand a bit more about what that wonderful woman you’re married to has to endure, if I have helped you even half as much as she has helped me then you’re a very lucky man indeed, she’s a keeper…..and a bit of a hard-nosed bitch. But we still love her huh?
Zoe
Xxx
The joys of meds. Oh so fucking joyous. But then I’m headed back towards that exciting time myself so what the hell. Why? Because I’m not stable, not even remotely, although I think I’m now in that dive down into the depths of immense self pity and inability to function that happens after a high.
Doesn’t matter. Rambling.
You feel meds dull you beyond compare. Yup, you’re right there, that’s what meds do, that is their intended purpose. Kinda validating what you’re thinking but then at times we need dulling. We need the spikes of our egos blunting because whilst we see, usually in hindsight, what we’re doing and we hate its effect, we feel powerless to stop it on our own.
Meds aren’t here to cure us, they’re here to help make things managable. If only we could find the right one, the right dosage, to allow us to be… normal.
Ha! Normal. Not something usually applied to me.
I liked Seroquel XL because the times where I was awake I didn’t experience the highs. Ok, I had my epic lows, but then I’m a control freak in so much as I hate being drunk and I hate being high because I lack control over myself.
I didn’t like the meds because I went from 15st to 16.5st very very quickly. No I dont have the same body issues as yourself, nowhere near, but I don’t like my body. And such a thing becomes a reminder of how weak I am, how much of a failure I am. Also the difficulty in waking up was a nightmare, then a few hours of automaton functioning before I actually became myself.
Not fun. But then I took the meds for a reason. To help me to cope as mixed episodes really aren’t fun at all. However, I understood at the time, and tried to make the CMHT etc understand, that meds were a stopgap, a temporary thing. I needed other help. Needless to say I haven’t had that help because they couldn’t/wouldn’t provide it. But I’m going back into the system, and I have a plan to get the help I need to be a safe bipolar. So that when the highs kick in, when the impulsive nature fires like a 21,000 gun salute, I’m not the complete fucking dickhead I can be. That I can retain a degree of self control.
Never have and never will be normal. I accept that. I’ve been weird all my life. Joys of bipolar. But I don’t begrudge it. I begrudge that I have never been taught the skills to cope with the times I’m out of control. I begrudge that my personality is so fucked up by it because I had no choice but to become messed up in order to bridge the gap between what I was and what everyone else considered normal.
Bollocks. This is a long reply and I’m pretty sure I’ve strayed from the point. Sorry.
It’s up to you in the end Zoe, but take the meds, get the therapy to help deal with the issues that taking meds masks. Maybe then you can actually be you again, the person you actually want to be, the person we can see even if you can’t. No promises tho.
Null
Hi S
nice to see you, I know things are hard for you at the moment so I’m honoured you’ve taken time to comment. I’ll be honest, I’m reading in chunks so my reply might not be as comprehensive as your comment. Everything you say rings true and again I am inclined to say “well this is shit” again it’s the “choice” between drug-induced coma and spilling your guts at therapy or complete chaos- having being in the system for a while you’d think I’d be used to these kind of “choices” but I’m not. It’s just not fair. See- rubbish response to a great comment. Thanks for hanging around (very unintentional pun there) thanks for your thoughts, I am thinking about them.
Zoe
Xxx
I recently got a psych I trust. His interest is bipolar so he does seem to have a clue. I quit Lithium in January – he predicted a rebound into mania. Didn’t happen (as much as I wanted it to). He got round to prescribing Fluoxetine and predicted mania (also did not happen). And the last one was Olanzapine.
This time though I asked for a time, I asked for when he would agree it was not working if I said it wasn’t. It meant I knew he was thinking ahead and I knew if I felt like crap when it would stop. Good to his word he did let it stop last week. So maybe you need to try and nail the doc down to a time – after all you’ll be promising to give it a fair whack and he’ll be promising to listen. Fair deal it seems.
Not that I’m well on Lamotrigine and Fluoxetine – I’m in that not up, not down weird state all the time – but I trust him (so far) to give me a go on something else. What I don’t trust are his predictions for a spot of mania. Which is a shame.
Hi
I’m glad you have someone you trust, it helps. I have a real problem trusting people, history tells me I am right. I have discussed a time limit with the Awesome Psychiatrist but it is long, I appreciate that in order to try something properly I have to give it time but it’s so daunting. Sorry you miss the mania, I miss the colouring in book writing kind but I don’t think I’d miss the road-trip psych ward kind or the impulsive suicide attempt kind.
Thanks for taking the time to comment.
Zoe
Xxx
I don’t think your “irrational” reasons for not wanting to take lithium are all that irrational.
Don’t know how you feel about going back to the past – I think that you hate it -but I would put money on your family of origin being keen on suppressing your individuality because this is a huge thing for you now, given the circumstances you find yourself in.
I hope you and the professionals can find a way towards you being completely Zoë AND functioning. I’m cheering you on.
Hi Anne
very perceptive comment, I must give a lot away in those 140 character or fewer streams of conciousness! I’ll leave it at that for now, thanks for your support and knitting updates.
Zoe
Xxx
Bleugh. I’ve never been on lithium and thank myself fortunate for that.
If you’ve tried lithium in the past and found it so untolerable I’m amazed they are suggesting it again, but I guess it is the most effective stabiliser and as you’re clearly not stable I can see the reasoning.
Your quality of life at the moment is hardly brilliant and I’m not sure you’re really “Zoe” at the moment either. Ending up in various hospitals is a pretty good indicator that you’re not well.
If you could stabilise your moods you may be able to get other parts of your life back that will eventually give you “Zoe” back too. You probably will feel flat and boring for a while, but if you can rebuild your life enough to get back to work, re-engage with politics and take on the bits of your life that gave you an identity and fuelled your interest, you may find that you start to feel less flat eventually.
I have had a similar collection of meds in the past and I always thought I’d never find anything that worked. Each drug seemed to just make things worse and came with its own collection of problems.
Somehow I/we eventually found a combination that didn’t make me feel too awful and that has got me somewhere near sane. Unfortunately it’s not a perfect combo (constant hunger, chronic physical exhaustion/fatigue, IBS symptoms, chronic insomnia being the physical issues), but I don’t think there is one. One thing it has given me though is my life back. I feel like I have part of my identity again now that I am able to work again. Now things aren’t by any means perfect, but I am managing and that is a vast improvement.
You may (hopefully will!) find that combo eventually. I’m not sure Lithium will be the answer, but there may be something else out there that is.
Anyway, not sure how useful this is to you, but keep trying and don’t give up on the idea of meds completely. xx
I don’t know, you wait ages for an Intothesystem comment and ………!
I have no confidence at all that drugs will help me, sure they’ll stop the extremes but I will be lost and probably physically suffering too. You’re right that my quality of life is hardly brilliant at the moment but I honestly can’t see how meds will help that- it’s just a different shade of shit. I honestly don’t know where to start but I know I don’t want to start with walking coma and the sparse hope that I can grasp back some things that make me feel I’m living. I’m getting whingey now! It’s so unfair, so unfair!
Thanks for commenting and being sensible, sorry I’m being so difficult.
Zoe
Xxx
I am not bi-polar but was briefly on Lithium anyway (I was just doing what I was told) and I agree, the side effects were brutal. Then again I don’t need it. It’s a tough call if your doc thinks you do. Just don’t give up on all of it.
Hi Sheila
thanks for your comment, lithium is rotten, they all are, I hate them all. I must be a nightmare patient! I’m still undecided and terrified.
Zoe
Xxx
I have nothing wise to add to all the other comments but didn’t want to read & run. I’ve been on & off lithium since my first MH diagnosis. The side effects are rotten. Personally, I prefer it when i’m not taking it, at least I feel then (albeit by rapid cycling but hey, that’s another bridge!)
All i’m going to say is that the decision is yours. Its your body, & your mind. Don’t ever let them bully you into doing something you will regret. But on the flipside, don’t be stubborn to a point you’re no longer here
Much love,
Ellie xxx
Hi Ellie
rapid cycling is horrible (now in the reflective phase *blushes, feels shame*) I know it’s my decision and I’m lucky that noone is trying to force me into anything, I am just aware now, looking back that I have done things I never thought I would do and worry a bit that I’ll allow myself to get to a stage where the decisions are no longer mine to make. I won’t even tell you what I had to fight with myself not to do last night, I am scraping the bottom to the mentalism barrel at the moment!
I’ve thought a lot about this tonight and I still would rather be no longer here.
Take care, nice to see you back, hope it’s not too brief this time.
Zoe
Xxx
Hi Z,
Comment redux (self censor asleep at 3:30AM). I’m not sure about the wilful poisoning, but I do follow the thought of being shaped in to the person the medics want you to be; a perverse Pygmalion. Make you all nice and safe and compliant and normal. There are bits of bipolar that are intrinsic to me, and I don’t like them being damped down. Wild joy for example. Eccentricity. But for all that, although I have no emotions any more, I am still alive, I haven’t (successfully) done what I’ve tried and failed at before. Nor have I spent as much as I might have done, or given away the house to charity.
I won’t presume to give you advice. But you’re very not well. Meh. Shrug.
Love, Jane xxx
Hi you
again, what a fucking crazy world we exist in, I’d argue “very not well” if I had the strength and cognition. Existing, that’s my choice, Hobsons choice if ever there was one.
Thanks for sticking around, keep hold of that husband of yours.
Zoe
Xxx
Just discovered your blog.
I like it!
Gavin
Hi Gavin
welcome to one of the best blogs on the internet, you’ve waited a while, I discovered yours ages ago. I think you are the first one of my political connections to come here and comment (the rest read and run, occasionally comment on twitter!) thank you for taking the time to read and comment, glad you like it.
Zoe
Xxx
Hi Zoe. Sorry to hear you’ve been/ are going through so much. I also can’t comment on lithium as I have (so far) managed to avoid needing it (thank God by the sound of it.) But do you find you have awful side effects with all these drugs that you have tried? Risperidone numbed my emotions completely, to the extent that I went to my godmother’s funeral, then gave away my dog, all without shedding a tear or coming close. Now I’m on quetiapine, I feel almost myself again- just a bit less mentally sharp, notice myself forgetting words, things like that. I cried at my mum’s wedding on Saturday- sounds weird but it felt good! Just saying I guess that sometimes it’s a case of finding the RIGHT medicine.
Hi Katy
the problem is I feel the same way about them all, I hate them all and they all kill something in me. I stopped taking the lithium after 4 days, I’m not really sure what to do now. I’m glad you’ve found somethinng that works for you.
Zoe
Xxx
Zoe, you don’t know me but I do follow you on Twitter. I’ve read your blog, and all the comments. I get what you are saying. Your need to be *you* is something I relate to, though you are much braver than me.
Meds? I’ve had a few. I had a theory, similar to yours, which at the time was going to change the world. It changed my world.
You need to stay alive to be you, and that’s the bottom line. Do what you have to, to retain that sense of self, even if for a while it’s just your physical self. Things change, and a period of stability being Zoe may well be just around the corner, as long as you give yourself the bridge to get there. That bridge might be lithium, just for a while. Good luck.
Hi
thanks for your comment and also thanks for consistently using the same avatar as it gives me some point of reference for who you are! It’s now Saturday (4.08am) and I haven’t had any lithium since Sunday, I only managed to take it for 4 days before I talked myself out of it. I’m not brave at all, more scared than brave. I think I am just eternally hopeful that I will wake up one day and find the magic, mental-curing unicorn at the foot of my bed.
Zoe
Xxx
[...] READ Mental Political Patient, discusses whether or not she should take lithium to control her mental [...]
Hi Zoe.
I’ve never mentioned on twitter, but my girlfriend is rapid-cycling bipolar. I recognise a lot of her thought processes in what you’ve written above.
She was taken off lithium after going “toxic” on it twice. The docs reckoned her body just wasn’t getting rid of it effectively (she has other health issues) and on the second occasion she was days away from kidney failure. Not helped by the fact that her medical practice decided to save money by dropping her blood tests from once a month to once every six months!
She’s been on all sorts since then, but has never found anything as effective as lithium. In fact, she’s begged to be allowed to go back on it but her doc & psych keep refusing. Funnily enough, for her the lithium was an appetite-suppressant, whereas her current meds have seen her balloon from Size 12 to Size 20 in a year!
As for the feeling that it’s “not you” when on the meds, she says the same thing. I counter that the manic person isn’t her either. Nor is the depressed, take-to-the-couch-and-don’t-move person her.
I don’t know what she’s on at the moment, but it’s nowhere near effective enough. Whatever they eventually prescribe for you, I hope it works for you.
Take care x
Hi John
thanks for taking the time to comment, it’s interesting to hear a “loved-ones” perspective, I suspect I am a nightmare to live with.
I stopped taking the lithium after 4 tortuous days which just saw me getting into a worse state every night at 10pm as drug time drew near, you comment makes me think.
Thanks
Zoe
Xxx