LOONYBLOG.GULKEFAMILY.COM

A book review of sorts

Gem — Sun, 14 Feb 2010 21:18:00 GMT

So i just finished reading Kay Redfield Jamison's "An Unquiet Mind". Since day one of my diagnosis, various doctors, people in support communities and my old psychologist (Dr W) have told me You Must Read This. I almost felt like in reading this book i was completing some stage in my "mental initiation" or something, from the amount of pressure to Read It people put on me. Like i wasnt properly bipolar until i'd read it, but whatever. So i finally decided to have a read, and i really cant say i was impressed. It's well-written, sure, but her flowery descriptions of her (obviously pretty horrendous) manias and depressions felt almost romanticized to me. If i were reading that as someone who had never experienced either mania or depression, i think a part of me would almost be caught up in her wistful, romantic descriptions and would think on some level what a vivid experience manic-depression must be! It IS vivid, but not in a wistful, romantic "bugger off to St Andrews for a year" kind of way, at least not for most people.

I cant help but think (with barely-veiled jealousy, im sure), that her experience would have been quite different had she not come from an obviously privileged background. I found myself trying to "translate" her life of mania and depression onto a regular Joe from an average (middle or working) class family. Somehow, i cant help but think, her experiences would have been a lot different. Maybe that's just jealousy on my part, but i think you have to be of a certain level of privilege before you can romanticize an illness like manic-depression. She does raise a lot of good points, though, about awareness of mental health issues, and how people would feel much more comfortable being open and honest about mental illness if they werent so scared they would lose their job or their credibility over it. So the book wasnt awful, just a bit sickly for my taste.

I was also advised to read another of her works, "Touched with fire", but i read the synopses of it online, and to be honest i dont think its worth my time. See, i dont hold with the belief that having bipolar disorder "makes you more creative", or more productive or whatever. When i was packing for our move over here i found countless creative projects started and never finished, when i clean out my hard drive i delete a series of "chapter 1"s from novels i swore were going to be best-sellers. The point is, however many creative ideas are thundering about in your head, when you're manic not one of those ever comes to fruition. They cant, because in order to actually realize any one of them actually means sitting down and doing them. And that's something i just cannot do. I can pace about and tell anyone who is listening (even if that is just the cat!) about the plan, and how great its going to be, and talking about how things are going to go (im great at "seeing" how something is going to happen, even if it never actually does happen), and writing lists, sketching plans on napkins etc etc etc, but actually carrying the project out? Nada.

Not to mention the distractability. I'll spend hours getting everything "just so", so that i can work properly, keep getting distracted by little things that "need doing" etc, then once i sit down im off on something else. I started making my Mum a scrapbook of family photos when i was manic and became obsessed with scrapbooking (to the point of going out and spending 100quid on scrapbooking supplies in one hit), and after the initial mania ended, it took me 18 months (and considerable pushing from Josh) to actually finish it. Yeah- touched with fire, my arse! Touched with a dust devil more like! (A dust devil is a miniature whirlwind strong enough to whip dust and leaves and litter into the air, very powerful and very fleeting)

So anyway... ranty book review over! In other news: Trileptal did NOT work. That's an understatement. I was depressed when i started it (but not hugely so), within days i was having "suicidal ideations" (i hate that term..) so i went back to Tegretol, but now im weaning off it, which makes me happier. Dr S told me to take Saphris (the antipsychotic mentioned in an earlier post) as well as Seroquel, but that was also not good. A couple of days on it and my hands and feet were burning, and i couldnt stand up straight, walk properly or form coherent sentences. Marvellous. Oh and it was sublingual and tasted like the worst thing i could possibly imagine. So that's out the window now. Im seeing Dr S tomorrow, so i wonder what's the plan now? I guess i'll find out tomorrow.

Well, here goes...

Gem — Fri, 05 Feb 2010 03:45:00 GMT

Started the 100mg Seroquel two nights ago and WOW... It knocked me on my arse, seriously. All i can say is THE ZOMBIE IS LOOSE lol. Im sure once my body gets used to it, it'll be fine.

Took my first dose of Trileptal tonight, so Josh and i are on Side Effect Watch, although its supposed to be so similar to Tegretol that i can straight-swap it without the body even noticing anything's changed. Makes me wonder if my brain and body are going to turn out to be so different. Anyway, enough bitching about that, only time will tell.

So, here goes. The first day of the rest of my life, or just another spin on the medi-go-round?

Snake Oil...

Gem — Wed, 03 Feb 2010 02:13:00 GMT

Ok, i just looked up Trileptal, so get an idea of what im to be taking... here's some excerpts from an article titled "Trileptal in Bipolar Disorder", taken from www.psycheducation.org:

"Trileptal is not really a "new" medication. It's just an old one, carbamazepine (Tegretol) with an oxygen stuck on it. But fortunately this oxygen solves the biggest problem that kept carbamazepine a very distant third choice compared to lithium and Depakote -- the tendency to decrease white blood cells, which are your infection-fighting cells. Since people don't "feel" their white blood cells, these could get dangerously low and leave a person vulnerable to infection. Tegretol is still a reasonable choice. It's still around as a choice because as generic carbamazepine it's quite a bit cheaper than Trileptal."

"But does it work?! Yes; it seems to be very similar to Tegretol in that respect. It does not work for everyone, which is of course the same story as for any of these mood stabilizers -- for any given person, sometimes one will work and another not at all. Tegretol has not been as well studied as Depakote, and particularly lithium, for which we have the best research. But most studies show Tegretol in the same general league as Depakote in terms of effectiveness, which has certainly been my experience with it as well. And so far, Trileptal has been about as good as Tegretol, perhaps just a bit less so. I don't have many patients who've done well on Trileptal alone, compared to a few folks who have, on Tegretol alone. "

So, hang on a tick... Tegretol DOESNT work for me. And Trileptal is "a bit less" effective than Tegretol. And i told the doctor that the main thing was i wanted OFF Tegretol because not only does it not work, it makes me have these crazy, aggressive mixed episides, depression and all that. So he gave me what is basically Tegretol, just without the blood cell damage? Granted, my white blood cells are grateful and all that, but im NOT happy. Im struggling to see the logic here, im struggling to understand why im still taking Tegretol, albeit with another name. Manure is still shit, no matter what you chose to call it. It still smells like shit, looks like shit and (if you were stupid enough to try) tastes like shit. If you bond an oxygen molecule to manure, IT IS STILL SHIT. Just, well, oxygenated shit.

Im going to give it a week, take the drugs like i was told to and talk to Dr S. next week. But, i so badly want off Tegretol i want to cry. I feel like i've been deceived here, and its not a feeling i like...

The New Shrink

Gem — Wed, 03 Feb 2010 01:49:00 GMT

So this afternoon i headed out with Josh to my appointment with my new shrink. The appointment was for 2:15, and i'd been warned that a ton of paperwork was likely to need filling out, so i went in a few minutes early just in case. Josh made sure i was in ok, then went off to get gas and get the car washed.

So, i get in and im handed the obligatory slew of paperwork. After filling out the bits i knew, and worrying about the bits i didnt, i gave the paperwork back to be countersigned. At this point, i should say that this was the SCARIEST waiting room i have ever sat in. It smelt faintly of wee, there were about a million fishtanks and the walls were that "tacky swedish sauna" kind of fake wood. So, nervy and scared i sat back down. There were 3 other patients in the waiting room at this point. There was a really old guy who looked a bit like Leo from That 70's Show, and had an awful-sounding cough, there was a woman who was talking loudly about bras all the time to anyone who'd listen (and at one point, when someone's car alarm went off outside she shouted "well the car's horny, what about the driver?!") and there was a guy about my age with really red eyes who stared unblinkingly and quite hostile-ey at everyone. I didnt want to feel judgemental and "omg crazy people are scary" but when i get anxious i get PARANOID so it was pretty hard for me not to be scared. I went to sit in the corner and await my appointment. About 30 minutes after my appointment time i was called to the front desk; my doctor had seen an emergency patient earlier, as a result she was running late, was it ok if a different doctor saw me? At this point, just wanting to be seen and go, i agreed. So i sat. Starey-eyed guy left, then Loud Lady was seen, then Leo. Others came and went, i stopped looking and stared at the fishtank nearest me. By now it was over an hour past my appointment time, and i was getting antsy. I looked at my fingers and saw they (and my arm) were covered in blood. Apparently i'd been idly picking scabs off some healing SI scars and now they were all bloody, so i did my best to clean them up. I was literally twitching with anxiety by now, convinced i wasnt going to get seen at all that day. Well, finally i was called back to see the shrink, Dr S. He was a nice guy, had a very abrupt, distractable nature that i liked well enough but i know on an irritable day that guy would annoy the piss out of me. He asked me what i was taking, and when i told him carbamazepine he actually blinked in shock. He asked me to repeat for him, i was taking CARBAMAZEPINE? Uh-huh, i said. He blinked again, exhaled and then told me he hadnt written a script for carbamazepine since before the millennium. He went on to tell me that it is such an unpredictable drug most doctors dont even bother with it anymore, favouring newer anti-epileptics instead. I told him how it hasnt worked for me, all its done is taken away my euphoric manias and replaced them with dysphoric hypomania, mixed episodes and depression. Not my idea of a cup of tea. He asked me what i wanted to do, and i said i wanted OFF that drug, but i didnt mind staying on Seroquel, as i like being able to sleep.

So, we have a new game plan now. He's taking me off carbamazepine and replacing it, straight-swap stylee with Trileptal, which i've never heard of. And i'll be taking a higher dose of the Trileptal than i was of the carbamazepine. We may, or may not be also adding in Lamictal, he gave me the titration kit but said give it a week or so before i start it. He's upping my Seroquel to 100mg at night, and given me a sample of Saphris (another antipsychotic) to try in the instance of intrusive thoughts/ psychotic epidsodes. Im unsure as to whether or not he wants to eventually replace Seroquel with Saprhis or not, he wasnt exactly clear. Oh, and just like every new psych he wants about a million blood tests etc done.

So, there we go... my first visit to an American psychiatrist. I'll keep you posted on the new game plan, and how it works/ doesnt work etc.

Pleased to meet you, by the way i'm insane...

Gem — Sat, 16 Jan 2010 07:38:00 GMT

First i'd like to acknowledge just how hypocritical this entry is going to sound, given that im writing it on a blog that i choose to write, specifically about my issues with my mental health. Yes, im a hypocrite sometimes. It's my blog anyway, so nuh.

Second i'd like to apologise. I havent had an awful lot of sleep the past couple of days, and i took trazodone a few hours ago, all of which means that im writing this in a strange video game-like haze (and a blanket that smells like old farts, come to mention it...).

So Josh started with his new squadron last week, and amongst other things he had a meeting with his supervisor. I knew it was coming, and i resigned myself just to cringe in embarrassment. You see, after last year's events (the whole psych ward thing, how much time Josh had to take off just to make sure i didnt kill myself/ get me to appointments on time etc etc) we discovered that being open and honest with those both of us work with (eventually when i get a job again, or even for school etc) is much more beneficial than covering things up. For one, you dont look like a serial slacker, or worse an outright liar. Another reason is that sometimes help and support is available that you might not have known was there otherwise.

Truth be told, Josh and i got through last year because we know some amazing people. Close friends of ours who helped out ferrying me around when Josh wasnt able to, and offered moral support and help during difficult times, people he worked for and with being lenient about the time he had to take off (including him being granted emergency leave without even asking for it the day after i discharged myself from hospital!), the whole works. Without all those people (they know exactly who they are, and i dont have their permission to use their names here, which is why i havent named names!) it would have been a different story entirely.

So now i go back to Josh's meeting with his new supervisor. We had talked about it, and agreed that the best possible course of action was for Josh to be open, and tell his supervisor about my illness. He may, at some point, need to leave work early to take me to appointments, i may end up in hospital again, anything could happen and as such we decided that it was just better to be upfront. But still, it made me cringe. Despite this blog, i dont exactly introduce myself as "My name's Gemma, and im a manic depressive". My close friends know, and occasionally it will come up in conversation, but for the most part i dont talk about my illness in general company. Which is why, although i understand why it was necessary to make this new supervisor aware of mine and subsequently Josh's personal circumstances, i find it so embarrasing that i dont know this guy from Adam and yet he knows about me. I could bump into him on the street and would not know it was him, and yet he knows about me. Not that he'd know it *was* me, but you get my drift. Hence the hypocrisy, because there are plenty (maybe) who read this blog who know nothing about me BUT my illness, and yet that doesnt bother me. I suppose because my husband doesnt have to work with those people. He doesnt have to be judged potentially by those people, because of my illness and my actions.

I think that's the crux of it, really... whether it's me or him telling a supervisor in a new workplace, its the instant judgement. Will they now think he's likely to be trouble, always wanting time off, because he's warned them that sometimes he may have to ask for time off because of me? Would an otherwise innocent leave request now be regarded suspiciously, wondering why he needs the time off etc etc. And for me, because my diagnosis is official i legally have to tell a potential employer that im ill. And from there, where can they go? Will they look at me and wonder if im worth the trouble, try to guage my current level of "madness", to see if im up to the job.

Sitting here tonight, at 02:00, unable to sleep and trying to avoid other invasive thoughts (too embarrasing to post here, sorry!), i think back to my last "serious" job, working for a contract company as a secretary. I had one more job after that, which only lasted 3 weeks, so i dont count that as "serious". When i started at the contract company i had previously been "let go" from a job selling water coolers. The managers had been as lenient as they could be, but my nonexistent sales figures coupled with my appalling sick record meant that they finally had to terminate my job. I was desperate, depressed and frightened. I took the first job i could find, which happened to be the secretarial job. If im honest, i lied from day 1 to get that job. I made myself sound peppy and upbeat, when my mood was pretty low and getting lower. At the beginning of the job i actually felt a bit better, learning new stuff took the edge off my symptoms. But the paranoia was intense, i believed the girl training me hated me (she may well have, i'll never know) and that everyone there was talking behind my back. As the weeks crawled on, my depression deepened and soon i was taking time off left, right and centre again. I didnt realise how much until it all fell apart and i found myself on the recieving end of a face-melting rant from my then boss, who informed me that in almost 4 months i had yet to work a full week. I broke down in his office and, sobbing so hard he had to strain to understand me, showed him the cuts on my arms. Told him how every day i walked to work crying and some days just didnt have the strength to do it at all. Told him how i often sat awake at 5 am contemplating suicide. Stunned he sent me home to think, but told me then and there that if i didnt think i was up to the job, he would give me the option to quit rather than be fired, on the condition that i did not try to seek employment for a while. I was to "sort my head out" first. The next day i returned, and gave him my notice. I was lucky. This guy was a bastard sometimes, but he was good enough to give me that final thing, allowing me to leave on my own terms, rather than be fired from another job.

I wonder, if i had known about my diagnosis, and told him about it would things have been different? Would he have hired me? Would i, assuming i was medicated, have been able to handle the job after all? Now im contemplating returning to work this year, these are the things that are in my mind. And having to tell your potential employer that you went crazy and havent worked for 2 years is only the tip of the iceberg...

Kids on Risperdal?!

Gem — Thu, 07 Jan 2010 18:57:00 GMT

I have another entry im trying to write, about moving overseas, but it is proving harder to write than i thought. In the meantime, i wanted to write about this article:

http://www.furiousseasons.com/archives/2010/01/antipsychotic_use_doubles_in_americas_toddlers.html

"The most commonly-prescribed antipsychotic for toddlers is Risperdal"

RISPERDAL?! Are you fucking serious?! Maybe this scares me because Risperdal fucked me up so badly i wound up in a psych ward, but even without that, it is an extremely potent drug. It slows you down, messes with your moods and memory, makes you feel like your brain is dying. And they're giving this to TODDLERS?!

I was prescribed this for psychotic mania, so its hard for me to imagine what on Earth could be so very wrong with a TWO YEAR OLD that they would need such an extreme drug in their systems. I wonder what is wrong with parents today that they would rather allow their child to be drugged up than allow them to be a child.

Psychotic symptoms in an adult, potentially requiring an antipsychotic to treat them, include:

Hallucinations (seeing things that arent there)- NORMAL for a child

Auditory hallucinations (hearing things that arent there)- NORMAL for a child

Delusions- believing something or some situation to be true when it is not- NORMAL for a child

So basically giving a child this kind of medication is to not allow them to be a child. That literally makes no sense to me. I understand that in some cases there are children who may be extremely poorly and might need to be medicated, but one would think that these cases would be extremely rare, few and far between and not something that would be increasing. It makes me wonder if people these days are so brainwashed by the current culture of "if your kid acts even remotely like a kid they might be mentally ill/ have adhd etc" that they dont even realize that having an imagination is a normal thing for a kid. Its terrifying to think where this kind of thing is going to lead...

Dysphoric mania, paranoia and psychosis, oh my!

Gem — Fri, 11 Dec 2009 16:51:00 GMT

Im not having the best time right now. Im going to be blunt, im shitting razor blades. After a few weeks of high-normal mixed with hypomania, then a week of solid hypomania, this week it seems to be the one where my control is slipping. Mania is coming up on me and its starting to scare me.

Its not the nice kind of mania, the happy-go-lucky, everythings awesome and i have a million good ideas kind of mania. Its what's known as dysphoric mania, literally the opposite of the stereotypical euphoric mania. I dont have these very often, but when i do its hell. Its either that or im slipping into some kind of crazy mixed episode (please, please, NO!).

Dysphoric mania is unpleasant, to put it mildly. Imagine feeling like shit about yourself, your life and everything, thinking everyone is out to get you, having paranoid thoughts and delusions, but having all the crazy energy that comes with mania. Im super irritable, snapping at Josh over the slightest thing and the paranoia is starting to get out of control. Two nights ago i lay awake for hours (even with the seroquel) because i could hear someone (wearing heavy boots, no less!) pacing around outside our bedroom door. I couldnt even move to alert Josh because i knew beyond a shadow of a doubt that if i made a sound he/ she/ it was going to come into our bedroom and kill us. Last night i took a double dose of seroquel just because i wanted to sleep, and not have the insane paranoia again. So today im fuzzy and out of it, and really not feeling good at all.

Poor Josh copped it earlier because he was messing about, dancing about whenever i turned to my laptop (so i could just see out of my peripheral vision), then stopping every time i turned back to him. I asked him what he was doing and he said "nothing", so i went back to my laptop, and he started dancing. I asked him if he was dancing and he smiled and said no. He was mildly surprised when i started to cry and loudly reminded him he was messing with a woman who sees things that sometimes arent there. I then yelled at him to tell me once and for all, WHAT WAS HE DOING?! He apologised and said yes, he was dancing, but now he feels like a jerk because of what i said.

We are not easy people to live with, thats for sure.

Anyway, i wanted this to be a real account of bipolar disorder, and it doesnt get any more real than this, folks.

Hypomania redux

Gem — Tue, 08 Dec 2009 09:40:32 GMT

The last few days i've been pretty hyper. At the risk of sounding weird, i can literally *feel * the mania churning about underneath all the medication, desperate to get out. And i can feel the medication holding back what at times feels like a wave of "crazy", like a dam just waiting to break. And the worst thing is, how often i would like it to break, to let go and let it all out, just to get it out of my system!

In addition to this, my skin has gone haywire, which might not sound like much but only a few weeks ago i was thinking to myself "i may be overweight, and my hair may be falling out from the medications, but at least i have clear skin". I guess i spoke too soon. Which means that the old demons are chattering paranoically into my ear again, making it harder to see, hear or think straight. I dont feel i have many redeeming features right now lol. I dont know if its caused by my medications or not, but its very easy to put the blame there right now! In reality, though, its more likely to be the PCOS causing it. Either way, grrrrrrr! Not something i need!

Mostly, though, im just talking too much, thinking too much and all the usual fun times that come along with this diagnosis. And im a little irritable, coming up with ideas for stuff that doesnt really matter given that we're moving house in less than a month and all that good shit.

Still, seeing Dr M next week, so that might help or he might just tell me to take more drugs. Not that it really matters because its the last time i will ever see him again... im happy about that because he is almost impossible to get an appointment with, never returns phone calls (great considering sometimes you actually NEED to talk to your psychiatrist on the same day, not in 3 weeks time, after calling his office 4 times every day!!), never does things he promises to do and works at a hospital that's miles away. Not his fault, he's the only psychiatrist in East Anglia that currently accepts Tricare.

Im also not so happy about finishing with him because he is a very nice guy, he and i work well because he doesnt sugar-coat things, or try to baffle me with bullshit, he just tells me like it is. Without him i would not have an accurate diagnosis or any medication and i would probably be dead by now. Or sectioned.

Plus, im scared of the unknown. What happens in Omaha? Do i get a new shrink, and if so will they be as cool as him? Or will they try to re-diagnose me/ mess with my meds etc etc. Who knows....

Im about to Get Real... Apologies...

Gem — Sat, 21 Nov 2009 21:21:00 GMT

Tonight i spent the evening with a friend and her baby daughter... i had a great evening, but something hit me hard. Seeing her with her child, they have such a lovely close relationship. So much love between them, and i realised this is a relationship i will likely never have. Between carbamazepine and its propensity for birth defects, the fact that coming off meds for the duration of conception and pregnancy would likely result in me going crazy and ending up hospitalized and the fact that i would likely pass the bipolar on to my child... having kids isnt looking like an option for me.

Adoption is something we have talked about, but still there are things to think about. What if Josh is deployed and i go crazy again, and end up in hospital? What happens to that poor kid? Plus, would adoption agencies consider a couple where the husband is in the forces and the wife is mentally ill?

Im ok about it most of the time... just nights like tonight when i see how happy and fulfilled others are by having kids that part of me aches again, almost like a phantom limb.

I dunno... i think im just having one of those nights where i want to have a family so bad it almost hurts.

An Ode to Seroquel

Gem — Wed, 18 Nov 2009 14:42:00 GMT

Seroquel (quetiapine) is an antipsychotic/ psychotropic agent used in the treatment of both Bipolar Disorder and Schizophrenia. Im sure it's used off-label for other stuff too. But anyway. I have a true, bona fide love/ hate relationship with this drug.

When Dr M first handed me the prescription, i was wary. I knew he was eager to replace my old antipsychotic (risperidone), which had been responsible for me ending up on a psychiatric ward for 4 days, but i was not so eager. My terrifying experiences on risperidone had kinda turned me off antipsychotic medication and i was quite happy the way i was (well, i *was* manic!). Dr M, however, had other plans. He didnt like running me as high as i was, and he was determined to bring my manias back down to normality again, so he upped my carbamazepine and put me on quetiapine at night.

I took the recommended 50mg dose, one in the morning and one in the evening, the next day. I was on my ass by 8:30pm, barely able to hold my eyes open. For the first time in, well EVER, that night i actually slept. I had managed sleep before, by taking Ambien or Lunesta, or by drinking vast amounts of alcohol, and during depressive episodes i slept pretty well, but erratically and usually during the day. Going to bed at a normal hour, going to sleep on time and being able to get up during the night to pee or whatever, and actually GO BACK TO SLEEP, well that was huge. Bigger than huge. I nearly cried with relief the next day.

I was soon to learn, however, that Seroquel has its dark side. It builds up in the system so that those first, refreshing, few days were soon a thing of the past. During my next depressive episode i learned that i couldnt take Seroquel in the mornings any more lest i spent the whole day staring at a wall. Despite being a little manic now, i still havent been able to go back to taking it in the mornings, because it leaves me feeling drugged and sleepy when i get up. Give me a couple of hours, about a gallon of coffee or diet coke and a bath or shower and im usually functioning pretty well, and the thought of adding to that drugged feeling just makes me feel ill. I do take it if i feel im going too high (or lets be honest here, if Josh thinks im going too high and tells me!), but not often. And that's just 25mg a day! I shudder to think what it does to people who take like 400mg a day!

You cant drink on Seroquel because it can do some nasty shit to your body, your liver in particular. Not even one glass of wine. So, if i have a drink, i cant take that evening's dose. Sadly this means i'd better not have just had one glass, i'd better be paralytic, because otherwise i wont sleep at all!

So, rather like Bipolar Disorder itself, Seroquel has its up's and downs... overall, though, i like it. It's not a sleeping pill, so all it does is make me drowsy enough to sleep, and it almost simulates for me what it would be like to go to sleep normally, and that's got to be a blessing. Even if i am bumping into walls the next day...

Introducing the person behind the keyboard

Gem — Tue, 10 Nov 2009 17:11:00 GMT

I got to thinking the other day about how although most people who read this blog already know me in real life, there are a few who dont. Those who dont know me in person actually know more about my experiences with bipolar disorder than they do about me, so i decided to take the time to remedy that today...

So, here goes: a collection of random facts about the Girl Behind the Blog!

My name is Gemma, im 27 years old. I spent the first 20 years of my life in a small town called Orpington, which is in the South-East of England. Although i spent the longest portion of my life there, i dont consider it to be my "home town" as such, because a few years after moving away from Orpington i moved to the Isle of Thanet and fell in geographical love. The Isle of Thanet, and Westgate-on-Sea in particular, will always be my "home town".

By nature im a very stubborn person. I love cats and photography, i have an irrational phobia of moths and butterflies and i'll probably die of exposure before i admit its cold and put on a coat. Im a certified chocoholic and i find it hard to settle on anything. I like most kinds of music, and i tend to prefer songs to bands. Two of my favourite books are "The Handmaid's Tale" by Margaret Atwood, and "Girlfriend in a Coma" by Douglas Coupland. I like books that get me thinking, even though there are some that frighten me just a little!

On the subject of frightening myself, im good at that! I love watching scary videos or TV shows and then spending the whole night awake with the lights on, although i dont think Josh is particularly fond of that particular hobby... I love Dr Who and House, and up until they released Universe i was a huge Stargate fan. I still am, but i refuse point blank to watch Universe!

I used to be a qualified Holistic Therapist, and once believed that this was where i wanted my life to go... i learned fairly quickly that im not cut out for a life spent massaging people! It was fun to learn, and the experiences i had during my studies are still among some of my best memories but ultimately, although im glad i did it, i dont think its the career for me.

I change my career plans on a regular basis, usually in accordance with any mood changes, so right now i have no idea what i'd like to do with my life. Im considering psychology or psychiatry (for obvious reasons) but im trying to really think it out, something i have never really done before!

Anyway, thats enough about me for now... Just wanted to write an entry that wasnt solely about the bipolar for once.

Who Needs Sleep?

Gem — Fri, 23 Oct 2009 05:25:00 GMT

I chose the title for this entry from the song "Who Needs Sleep?" by the Barenaked Ladies. The first time i heard this song i just about died from laughing, just because who ever wrote that song Gets It. Whoever wrote that song has suffered from some kind of insomnia or sleep issues and perfectly described what it's like to lie awake night after night trying to sleep.

Of course i barely count as the "career insomniac" i used to be, thanks to the wonders of Seroquel, but last night was something of an interesting exception. I found myself completely awake at 3.30 am, so as i write this i have already been up for 3 hours!

The thing about insomnia is, its only cool if you actually have something to do. When Josh was in Afghanistan and i was alone in the house, i would frequently find myself awake, with the radio on, doing laundry or making something for a craft project at some ungodly hour of the night. I remember experimenting with papier mache at 4 am once or, another favourite, doing sit-ups on an exercise ball while watching episode after episode of the West Wing. The point here being, actually being able to move around and make some noises without disturbing the whole household.

Where we currently live, things are slightly more difficult. Our house is no longer detached, so i have to bear in mind that our neighbours may not appreciate me using the washer or dryer, having the radio on, or generally making a lot of noise during the small hours. And now that Josh is home, i have to remember that there is someone living here who actually has to get up for work in the morning.

Cue many nights of sitting quietly in the dim light of my laptop, trying not to make a sound.

Insomnia can be great creatively, too. I've written some of my best papers, done some amazing craft work and generally had my "creative hour" as the late hours of the night. Something about the lateness, the dark and the perpetual quiet is almost soothing. Personally , i love working at night because i find things flow more, i have more thoughts and ideas. Maybe its because the ingrained feeling of "its night, i should be sleeping" acts as a balm to my constant flow of thoughts, slows me down a little or something. Who knows, but i've always found it helpful.

Still, this is very rambly and im not 100% sure where im going with it, so i might stop here.

"Dont mind me, its just her bipolar..."

Gem — Sun, 11 Oct 2009 23:28:00 GMT

I wanted to write an entry about support systems, but this one has been clawing at my brain all afternoon, so i figured i would write about it.

I think when it comes to mental illness sometimes there is a little temptation on the part of others to use it as a "get out of jail free" card in certain situations. Its easy to forget that just because we're ill, doesnt mean we arent still human. We still have regular emotions, we still get mad/ happy/ sad etc. And it isnt always a direct result of the bipolar or any other illness.

I guess its can just be frustrating to genuinely be happy about something and be asked if im manic, or be upset by something and have someone excusing my behaviour as being caused by my bipolar. Yes, i have bipolar disorder. Yes, it factors into my life more than i'd like because it is not yet fully managed, but it isnt all there is to me! I am still allowed to enjoy something, or get angry or feel sadness, it wont always be a symptom.

I think its just the easier thing to do sometimes... when your experience of a person has always been that they can be a little "unstable", and that they do experience extremes in mood, it is very tempting, and very easy to just automatically assume that any new behaviour is just an extension of that. Usually it can be pretty easy for the sufferer to explain the situation, to explain that in actual fact they genuinely are NOT symptoms, just regular emotions.

The problem starts when you are not believed.

If im asked if im feeling manic and i say no, it would be nice to be believed. I know that due to the very nature of my illness makes me hard to trust at times, but i like to think that i've done a lot to earn back some trust. I take the medications (albeit grudgingly lol), im compliant with just about everything my shrink asks me to do, so then to not be trusted when i say im not manic is a little frustrating. Likewise if i lose my temper or get upset... its frustrating when people think that automatically they are in the right because im probably just "being unstable and bipolar" and that im probably just blowing everything out of proportion, and therefore refuse to accept that maybe they really were out of order or in the wrong.

I think its just worthwhile remembering that not everything is an illness. Sometimes a bad day is just a bad day. Sometimes i really am just happy because im happy. Not everything is because i have bipolar disorder.

Mental Illness Awareness Week

Gem — Wed, 07 Oct 2009 15:20:00 GMT

I had a plan... i planned to post one entry per day for the entire duration of Mental Illness Awareness Week, which runs from October 4th to October 11th. In an act of pure irony, it was actually my mental illness that got in the way of that. I have been pretty depressed for the last 6 weeks or so, wavering up and down between fleeting moments of normality, then back down into the pit again. Exhaustion and lethargy have been my constant companions, which isnt exactly helpful for blogging. This past week has been particularly bad, with a lot of symptoms i havent seen for a while creeping up on me again.

Today, as it happens, is National Depression Screening Day, and honestly i feel this is a wonderful resource that should be used. So many people go through their lives without being even diagnosed, let alone being treated. So i wanted to include a link here in case anyone reading here has concerns, or is just interested in knowing more:

http://www.mentalhealthamerica.net/go/depression-screening-day

So, onto Mental Illness Awareness Week. As is probably very evident from this blog, awareness is something i am very passionate about. I think its important for 2 reasons; first, if more people are aware of the issues surrounding mental illnesses, there is more room for understanding and from there, it also means that if the stigma is removed, more people will feel able to get access to any diagnoses or treatments they may need.

The second reason is actually a personal bugbear of mine: Ignorance. So many people have no idea about mental illnesses, and at the worst case treat the sufferers as jokes, as objects of ridicule. Sometimes, though, the ignorance is not intended to be malicious but the result is the same. Someone hears a "fact" about an illness, tells other people under the guise of knowing a lot about it and before you know it there are a lot of people who know nothing real about the illness in question but still perpetuate ridiculous stories that can actually be very hurtful to the sufferer. Some of the things i've been told are "facts" about bipolar disorder actually make me laugh, although really they arent funny... I'll share some here just because i want to show how ridiculous some of them can be:

I've been asked "which personality are you today?" by people who have explained that they thought bipolar disorder meant two personalities. This is actually a very common misconception, that sufferers of bipolar disorder have multiple personalities. I always make the effort to explain that this is not the case.

Another common misconception is that a person with bipolar will be all smiles one minute, then freaking out and throwing plates the next. Now, there are some people who do have incredibly rapid cycles, but this is rare, it is not the norm. And while everyone's case is different, it is more common for someone with bipolar disorder to have the mood changes over a much slower period, building through mania, then down into depression. Sometimes lasting months at a time. But still this image lingers, the one of someone laughing like mad, then turning on a sixpence and sobbing or screaming. It's a frightening image, both for the very rare cases for whom it is very much like this on a day to day basis, and for those of us who are not like this, but who are all lumped into the same category, and not trusted or understood as a result.

This last example i included just because of the ridiculousness of it, and for a much-needed laugh:

I have been told as a "fact" that "all bipolar girls like to take it up the ass". This one actually shocked me, but also made me burst out laughing because i couldnt possibly understand where that conclusion could have come from. I assume that the person figured that since people with bipolar tend to be more risky, and often can be hyper-sexual, then from there it had to mean that someone with bipolar would do anything in bed.

I've talked to a lot of people with regards mental illness, and one thing that astounds me is the number of people who claim to be suffering from various illnesses, and yet it turns out they have actually self-diagnosed. Although this is not a something that has come about as a result of the internet, it is certainly something that has increased since the internet became widely available. In the days before so much information became available at the click of a mouse, a person would usually suspect something was wrong and either visit a doctor or their local library. Depending on the circumstances, they might decide to get help, or read books on abnormal psychology and try to figure out for themselves what was wrong. And although there would always be people who would read these books and decide they had the condition they were reading about, for the most part going to the library consisted of just as much energy as going to the doctor, and wouldnt be pursued by as many people as an option.

Nowadays, you only have to have access to a computer. And the internet quizzes i have previously ranted about in this journal dont help because they plant ideas in people's minds, and now it is so easy to research that condition and convince yourself you have it.

I was talking to one guy who told me that he had bipolar, so i got chatting to him and asked him which type he has. Not all people know, but online especially its a good question to ask. It usually can help weed out people who are piss-taking, people who have self-diagnosed etc. Anyway, i asked this guy which type he had and he said he didnt know, so we carried on chatting. He asked me what drugs i took, and i told him. He told me that he managed his condition without drugs, and felt that bipolar was not a condition that needed to be treated with drugs at all. He said he just brings himself down from the highs, and up from the lows. I told him how i wished i could do that, but i cant. He told me how he thinks psychiatrists are useless etc, and it came out that he was not diagnosed at all, that he had self-diagnosed. I told him how i feel about people who are self-diagnosed, that i feel that if there are people like him going about making it look like such a trivial condition, something like the common cold that anyone can diagnose themselves with, then it makes people who definitely, really do have the condition less credible. Less believable, harder to take seriously.

To me, its very simple. You wouldnt self-diagnose cancer, would you? And if someone were going about claiming to have cancer, but then saying that no doctor had diagnosed it, you just knew from your symptoms that you had it, you'd be angry at them, wouldnt you? You'd tell them to see a doctor before they went about saying stuff like that. So why is it ok for people to self-diagnose mental illnesses, when those very illnesses are just as serious, and just as deadly as things like cancer? Awareness, to me, means that mental illness would finally be able to achieve the same status and credibility as physical illness.

Well, there's another blog that went ranty... Brief update on my own illness front, my depression is lifting. FINALLY. I'd been down for over 6 weeks, saw Dr M on monday and he gave me a short-term dose of Trazodone, just for 2 weeks to see if it lifts me. Im only allowed to take it every other night, because he fears that it'll send me manic, and i can see why! I took it tuesday night, and wednesday i was pretty bouncy. Today, i am still feeling very bouncy and i take it again tonight, so im pretty excited. Its nice not to be sitting around in a funk all the time.

So, stay strong and i will try to update a bit more in future!

Dare i believe...?

Gem — Tue, 29 Sep 2009 21:25:00 GMT

For the last few days i have been... i almost dont dare say it: Normal. I was depressed for over 2 weeks, still enjoying the much shorter mood cycles that the medication gives me. Then i bounced up to a very strange day when i was unbelievably hypomanic, accosting my husband at the door with a thousand ideas, talking a mile a minute, all the usual.

Then it happened. I woke up the next day and felt NOTHING. Well, not nothing. I wasnt flat and emotionless as feared. I had a normal day. I felt cheerful but not euphoric. I listened to music without feeling like it spoke to me and me only, without that need to dance crazily around the house singing. Something upset me in the afternoon and i felt sad. But later, i felt better.

I've had normal periods before, so its not like i've never felt it before, but some part of me is clinging to the hope that this is OVER. Like the end of a storm when you're watching the rain and wind slowing, trying to gauge whether or not they're slowing down. Hoping and praying they are, sticking a hand out the window to feel how big the drops are. Realistically, i know this is not over. I know this is the rest of my life, but i want the medication to slow it right down. Take it to the point where i just take the drugs to control it, but i never see it. My psychologist keeps reminding me that this will probably never happen, but oh how i wish it would!

So, for now, im enjoying this tenuous moment of normality, embracing for however long i am granted it, the feeling of being just like everyone else. Im not a genuis, or some chosen spiritual being. Im not a piece of crap that should die just to liberate her loved ones from the strain of dealing with her. Im an ordinary person today, and i absolutely love it!

Strange musings about Borderline Personality Disorder

Gem — Tue, 29 Sep 2009 21:24:00 GMT

Lately i've been very "protective" for want of a better word, of my bipolar diagnosis. The main reason for this is that for the first time in my life, i am being treated with a medication regimen that WORKS, that isnt just another antidepressant regimen that pitches me into a manic episode.

When the consultant at the psychiatric hospital in London tried to diagnose me with Borderline PD, i freaked out. BPD is usually treated primarily with psychotherapy, and medications given for it are usually a last resort and consist of very low dose mood-stabilizers and antidepressants. Knowing how i've reacted to the "therapy and antidepressant" route in the past, i really, really did NOT want to go there again.

As a result, i've become quite adamant to express the differences between these two disorders, often being quite scornful of BPD, which really isnt fair. It is a horrible thing to have, and i want to be sure people understand that im not saying it isnt a real condition or anything like that. I just dont want anyone thinking *i* have it.

A close friend of mine is a classic borderline. Like, from everything she's told me, you can pretty much read down the list of borderline symptoms going "yup, yup, yup, oh definitely she has that!". Im proud of her because she is seeking help, and trying to get a diagnosis, because no amount of guesswork on our part can replace a psychiatrist's analysis.

For a while, though, this friend thought she was bipolar. And this actually made me angry! I could see how very borderline her behaviour was, and her saying she thought she was bipolar blurred the lines more than i was comfortable with. If she was actually so very borderline, but got diagnosed bipolar, then could that mean that i was mis-diagnosed? Or that some opportunistic psychiatrist in my future could do like that consultant did and change up my diagnosis again? Send me back into the hell of cycling moods and all that?

I took to reading up on it on the internet, trying to reassure myself that these conditions were different enough from eachother that my diagnosis would be "safe". I read that nobody really knows. Some psychiatrists think that BPD is another variant of bipolar disorder, like cyclothymia et al. Others think that they often get confused together, but are very different conditions. They also said that there are clear "identifiers" for borderline, such as profound fear of abandonment, just like there are clear "identifiers" for bipolar such as mania etc. So i breathed a sigh of relief, as i have never feared abandonment, and i definitely suffer with manias.

It makes me sound like such a hypochondriac to write this, but you have to understand the change in my life that has occurred post-diagnosis. I can almost function in the real world again, with a bit more adjustment etc i will have my life back. I take 6 little pills a day, and as a result i've been released from a Hell created by my own brain chemistry. I dont fight daily with my husband any more. I dont have anxiety attacks about leaving the house. I dont see and hear things that arent really there any more (well, not as much... still working on that lol!). I dont tell people im a genius or on a mission from God any more. Yes, im still having manic and depressive episodes but they are much milder than before. Im starting to see a light at the end of this tunnel, and the thought of having that taken away is unbearable. I never thought i'd say that, but i am.

So i hope that explains why i get funny about borderline personality disorder. If anything, it felt good to write this!

Depressive episodes and why they scare me and my husband more than mania

Gem — Tue, 29 Sep 2009 21:23:00 GMT

So i've been pretty depressed these last few days. My manic streak finally came to an end in the middle of last week and i steadily dropped down. Yesterday was particularly bad, i spent all day laying on the sofa completely unable to move myself off the couch, couldnt wash myself or do anything. A triumph for me yesterday was making a sandwich for lunch and then later on taking a shower, which says a lot!

Depression is always harder for both of us to deal with than mania. Mania always feels more like the "golden" option for us, because although im loud and i can get into trouble, im euphoric and bouncy and optimistic almost to a fault. Im not sitting around wishing i was dead, which is always a risk with depression.

Depression always carries a fear for us, it brings back the memories of my hospitalization, which occurred over the 4th July weekend. I was actually reacting to Risperidone, but at the time we didnt know that. I was just so terrifyingly depressed, wandering around in my pajamas, threatening to kill myself and actually planning to do it. My mind was consumed with thoughts of death, there was no light at all. Just death. I couldnt stop crying, and in the end my psychologist, Dr W, decided that i would be better off going into hospital. I was admitted on the thursday night, about 2 am. The hospital was in London, but for the sake of privacy etc i will not name it. The admitting doctor finished talking to me at 4 am, and i went to sleep in an observation room where they checked on me every 10 minutes. Before i was left alone, two nurses came in and silently went through my things, taking away any pills, razors etc. I was terrified and couldnt stop crying, but nobody even came to comfort me. For a private hospital, the standard of care from the nursing/ medical staff was shocking!

In the morning, a nursing assistant came to see me and tried to get me to have some breakfast, the room was baking hot (like to the point where you broke a sweat just walking in there!) and i was drenched in sweat. She convinced me to shower, although the shower room set aside for the people in the observation rooms was pretty gnarly and had water all over the floor. I did the best i could to wash, then went back to my room to try and dry off, dress etc. The door had this weird glass observation panel which meant that everyone could see me getting dressed, i ended up hiding behind a chair in the corner to dress. Then i went to get some breakfast, then came back upstairs. The room was still boiling but i didnt know where i was allowed to go, i had to be escorted to breakfast and back, so i didnt know if they would take me moving as an attempt to abscond or not! I sat and looked out of the window until a nurse came to see me. She and i talked for a while, and she told me i would go to the ward proper in the afternoon, if my consultant said yes.

Eventually my consultant came to see me. He was not a nice man, had very rude body language (slouched in a chair, no eye contact etc) and disregarded anything i said about having bipolar. He was convinced that i didnt have it (after 30 mins of talking to me!) and told me he felt i had borderline personality disorder instead. He took me off risperidone (the one good thing he did! although he did it because he was "concerned about my weight", not because he suspected a reaction) and told me that he might take me off carbamazepine too, then left. A nurse came to take me down to the ward proper.

The ward was really very nice, more like a hotel than a hospital! My room had its own bathroom (!) and was very pretty, with a nice view (although you could only open a tiny portion of the window!). She showed me around the ward and explained that because i was on 10 minute obs (they checked on me every 10 minutes because i was a suicide risk) i couldnt leave the ward.

My darling husband called every day, and came to visit on the saturday. He was so wonderful, without him i would have gone to pieces. By then i was up to 30 minute obs, so i could walk outside but not leave the premises. Sometimes they even checked on me by just looking out the window to see where i was! I started to go to therapy groups etc and felt tons better. On the Sunday my sister and brother-in-law came to visit, and we had a long chat. I was manic again now that the risperidone had left my system and all i wanted to do was LEAVE! On the monday i was very manic, and very anxious, especially when my consultant did not see me as planned, i found out that they wanted to keep me in longer than the few days agreed on, and that he was taking me off carbamazepine, to replace it with another drug that i had not heard of, but was going to be given at a much lower dose. I freaked out, and discharged myself against my doctor's advice. On the monday night i came home with my hubby, having decided to keep myself on the carbamazepine until i saw Dr M again. Dr M was horrified at what the hospital did, and said he definitely would NOT want me coming off the carbamazepine!

So this is why depression is so scary to us. Because we're always afraid of how bad it might get, afraid of the hospital again, and what all that entails. Here's hoping it never gets that bad again, but you never know, and thats why its so scary.

The problem with titration

Gem — Tue, 29 Sep 2009 21:21:00 GMT

When talking in terms of drug doses, titration basically means that your doctor has given you a modicum of control over the dosage of a certain drug. In my case, i have 6 25mg Quetiapine pills i can take in one day. 2 of them im supposed to take morning and evening, then the other 4 are PRN (as needed for us mere mortals!). If i really feel like hell on the 2, i can cut that down to just 1 pill a day.

This process is known as titration, and is a sign that your psychiatrist actually trusts you enough to let you be the judge of your own feelings. In my case, if i start to feel too manic, i pop a Quetiapine in and Bob's yer uncle... or something. Except i've just found a fatal flaw here: I freaking LOVE being manic! So, either my poor husband has to judge whether or not im acting manic, then coerce me into taking a pill (dangerous because of the possibility of festering resentment or downright argument) or i have to do as the poet did and kill the very thing i love. Right now im absorbed in beautiful music, my spirit is soaring and i can feel anything is possible. I am euphoric, i want to go outside and howl at the moon (quite literally, actually!) and there is no way on this Earth or Fuller's that im going to take a pill to even dull this down, let alone end it.

So, this might be the problem with titration. Well, everything's a learning curve, i guess...

Quetiapine 1, Lunesta 0

Gem — Tue, 29 Sep 2009 21:20:00 GMT

I FREAKING SLEPT LAST NIGHT.

Not crashed out in a depressive or drugged stupor for 14 hours, or lightly dozed and stayed up half the night; we're talking real, honest to goodness SLEEP.

Up until now if i couldnt sleep i would take Lunesta, which left me with a rancid taste in my mouth and a feeling not unlike a hangover the next morning. I would be groggy and disjointed all morning, and usually would end up sleeping for at least 10 hours.

Quetiapine makes me dozy enough to sleep, but because it isnt really a sleeping pill, once i go to sleep i can wake up normally. So far, i havent woken up at silly o'clock in the morning, long may it last!

Ok, THIS feels like a breakthrough for me

I feel i should say this..

Gem — Tue, 29 Sep 2009 21:20:00 GMT

Im afraid. A couple of people i know have read this and are now worried that they, too, have bipolar disorder. Please, please DONT use my journal to diagnose yourselves. If you have a genuine concern, talk it over with your doctor. And one thing to remember: EVERYBODY has mood changes/ mood swings. Nobody is on a completely flat, even keel their entire life. Everybody has ups and downs. Just because you have ups and downs doesnt automatically mean you have bipolar. Im not saying this because i dont want to "share" my illness or anything petty like that. Im scared because there are doctors out there that if you were to go to them and say "i think i have bipolar" they would just hand you a prescription without any further ado. And that scares the life out of me, being even partially responsible for someone being potentially mis-diagnosed and given drugs that, being blunt, fuck you up.

Wikipedia actually have a good description of bipolar disorder, which describes it better than i ever could:

http://en.wikipedia.org/wiki/Bipolar_disorder

Im not posting this so people can self-diagnose from it, the main reason im posting this is to put people's minds at rest. Being "up" isnt just having a good day, its being euphoric, thinking you'll never get caught, acting irrationally etc. I wanted people to see there is a huge difference between being "up" and being manic, and likewise being "down" and being depressed.

Im just really scared. I never started this blog to cause everyone i know to think they have bipolar. I started it so that i could have a place to write about what its really like. How i feel, and how i cope with daily life. I dont want to be responsible for potentially messing anyones life up..

Im sorry if this sounds accusatory, its not meant to. Im not accusing anyone of faking it, or not having a problem, im just concerned is all...