I'm only joking!

My appointment with the new care coordinator began on a very bad note.  She handed me a printout from Alternative Depression Therapy.

It must be said that I wasn't very graceful in my response, which was basically, "WHAT A LOAD OF BOLLOCKS". I used to be very open minded about alternative medicine.  I was more likely to tell you about DIET and EXERCISE than psychiatric medication.

But after eighteen months of running this site, and receiving an e-mail every single day that says, "If you took Omega 3 and did yoga, you'd be cured!", I'm far less accepting.   Why do people think they're being helpful imparting common sense onto me?  The premise of this alternative stuff, at least with some of it, is duh.  Cut down on booze, get your sleep, eat well and exercise.  That's true for everyone, not just your garden variety mentalist.

But some of it is a LOAD OF OLD BOLLOCKS. On a purely personal level, I am not at all "spiritual" and I support treatments that have been proven effective.  This might make me a reactionary sod, but this kind of pseudoscientific guff:

Energy Psychology is a rapidly emerging dimension of therapy that works quickly and deeply by working on an energetic level. Energy Psychology techniques such as EFT balance the body's energy and produce subtle electrochemical changes in the brain and nervous system, producing deep and permanent changes in one's emotional state. In this way, issues that once took weeks, months or years of therapy, can often be eliminated in a fraction of the time.

BOLLOCKS

One hour of direct, mid-day sunlight each day. (Some studies suggest that too much morning sun exposure can cause more rapid cycling, while mid-day sun has a positive effect on circadian rhythms).

BOLLOCKS

Maybe if it was subject to rigourous trials it would be proved to be un-bollocks.  The rest of the print out is here, and it's just common sense.

It's nothing that I wouldn't be willing to try, or haven't already tried.  As far as "lifestyle changes" go, I'm not sitting on my arse alternately crying and shovelling lard down my gob.  I'm sensible in terms of "managing my illness".  I make sure I do things, I make sure I get enough sleep, I don't overeat, I cycle, when I feel able, I record my moods and I don't drink.  And I'm all for taking supplements if I can afford them.

What I don't like about those who espouse alternative therapies (and not in the complementary sense, in the "replacement" sense) is that, although it's all about taking responsibility for your health, it assumes that the medical model is a passive role for the patient.  In my own case, I know that medication is the basis of my treatment.  It doesn't mean I think it's the be-all end-all.  But you don't see me trolling mental health sites and sending e-mails saying, "Hey, I see you're not taking medication.  TAKE MEDICATION! Did that ever occur to you?"

I'm a godless, science based person who supports proven treatments and complementary therapies for those who want them.  But if you ask me, and you didn't, no, I don't think things like reiki should be available on the NHS.  Mental health services are drastically underfunded as it is and the money should be poured into things that are proven to be beneficial.  I understand why the treatments are available, but I just don't like them being so in opposition of medical medicine, which is losing credibility every day and I don't know why.  I do support funded exercise programmes and lifestyle management classes, though (like learning new hobbies and meeting new people).

Some people can get away with not taking medication and being completely fine.  I think that it really depends on the extent of the illness.  Even severe mental illness like manic depression and schizophrenia is on a sliding scale.  Some people will have one or two episodes in their life and not have another.  Medical medicine isn't just cynical drug pushing.  The drugs being pushed are trialed and tested, or have a lot of evidence supporting them.  Alternative medicine pushes things, too.  Alternative therapies, various lifestyle pamphlets, supplements and so on.  It's just another industry.  And neither have all the answers.

Anyway, as I said, I was a little bit rude but she assured me that she wasn't going to be blast me with propaganda so I let it go.  I just did not want the person who's supposed to be on my side as far as treatment goes becoming someone who I felt thought that I didn't do enough to get better.   I am warming to her, though.  She swears liberally, which always endears me to someone.  She is trying to be  helpful, although she mentions Hannah like I was in love with her or something.  We talked about attempting therapy again if I felt better.  I got the report that was written by the therapist at the end of CBT.

Here's a bit of it:

As I wrote yesterday, the therapy, although it had to end early, wasn't a waste of time.  My report said I found it hard to see my problems "holistically", which is true, I over medicalise things, but it's because that's the language I find it easier to speak in, it's succinct.  I don't see my issues in isolation, if that's what she thought.  I think everything will flow, all are related but I do believe that my own manic depressive mentalism is biological, and talking about depression when I'm quite depressed never helps me, not to date, anyway.  But talking about the body image stuff, which I think is way more due to my life experience, is helpful when I'm in the right frame of mind because it's flawed thinking.

The appointment lasted quite a long time in which I struggled to articulate myself and rambled considerably.

We discussed depression, which I'm so sick of talking about.  I am, apparently (and I know this myself), in that kind of emotionless, uncaring, detached depression.  I'm in that kind of frame of mind where I frighten people by talking tonelessly.  We discussed mania as well and the temptation to quit medication to become high.  I told her that I wouldn't do that since my highs tend to be dysphoric and a bad episode of dysphoric mania would definitely finish me off (arf) right now.

She asked me about my last manic episode, which was earlier in the year, and I told her about my longest period of mania, which lasted a solid eight months.  She said that it's easier to bring people down than to pull them up, which was the problem with medicating manic depression.  What's the point at all if you're left with enduring depression?

I told her that I was afraid of Effexor not working and that it seemed to be the last thing I can take for depression.  She said that we could try other combinations of things.  I know this, but it's exhausting.  She also said that there's ECT, but I'm petrified of that.

I say, "But" an awful lot.  I am a contrary little sod.

We also talked about the fact that I haven't self harmed in a long time.  She asked me if I was proud of the fact.  I told her I wasn't, as it wasn't a conscious effort or decision, I just stopped doing it.  I've never really seen self harm as a massive, dramatic problem, either, which is why I treat "triggers" with disdain (although I know that's rather rude of me).  It was always very dull and methodical.  I've messed up my body totally, my scars are pretty bad.  And I regret them.

I got my new CPA (Care Programme Approach) which now seems to focus on depression and suicide rather than mania, and rightly so as 2008 has been the year of depression.  It's always nice to feel included.  I adjusted my glasses and everything.  Nod, nod, this all seems to be in order, thanks.  Passivity be damned.  This is practically a job.

She also said that if I topped myself it would "fuck (her) up" which I thought was an odd comment!  I already have the burden of guilt around my neck.  That's not me blaming anybody but a lot of the reason I'm still around is because I don't want to hurt other people.  It is weighing up the hurt- one massive hurt or a lot of little ones?  I guess she knows that.  She commented that I define myself via manic depression more than she does, with my use of words like "mentalist" but I explained that it was in the context of appointments and that "mentalist" was actually just a term of affection.

I don't define myself by manic depression, hence why I say "have" rather than "am", but it's undeniable that treatment and extreme moods take up an awful lot of my life and disable me totally, and I can't help that right now.  And I would be quite a different person without it.  I did say what always worries me, that somehow I'm doing this to myself and that nothing is wrong.  Her opinion on it is be damned, it's a severe mental illness and if they thought that nothing was wrong I wouldn't be seeing her every week and seeing the doctor so often.  Aaaand we touched on psychosis, and how interesting it is.

Which reminds me of Project Psychosis, which I am still not feeling up to doing.

So, it's getting to know you, getting to know all about you... These appointments are rather strange but I am still going to them as I don't want to flop and give up.  I have a review by the doctor in two weeks and I suspect the dose of Effexor will be upped if I don't feel better by then.  I am feeling a little better, though, I certainly have a little more motivation, even though I can't organise my thoughts for jam.  So I'm ploughing along in the netherworld of living/unliving/tryingtoliving.

Good stuff, good stuff.   Monday is my two year being in hospital anniversary.  Cake?

Well on the upside I feel so much more relaxed. Ok, so sometimes my voice is slurred and I shuffle down the street like I'm drunk, but  so long as I get enough sleep, the rest of the time I feel great. Seroquel has shortened my day, and I really only have 4 or 5 hours of full consciousness. I'm hoping these side effects wear off in a few weeks. If not, then I guess I'll have to re-evaluate the pros and cons of continuing to take it. I still have low moods but it's kind of like they are behind a big plastic bubble. I'm not angry anymore (well not much).

I saw my gp today, just to pick up my script for venlafaxine. I'm aware that he asked me questions, but I couldn't do much more than smile at him. My blood test results are back and my glucose level is borderline (like my brain lol) so I need to go back for a fasting test next week. I've made sure it's an early appointment because I get very narky if I'm not fed regularly.  He was videoing the session for training purposes again, which usually makes me feel a little paranoid, but today I had to stop myself giggling into the camera.

The seroquel doesn't take away all my bad moods though. Yesterday was a downer. Probably overtired after spending the previous day with my Dad. I won't see him again now until he's had his operation. He thinks there's no point in me visiting til he's out of the high dependancy ward, but I want to be there, even if he's not aware that I am. His wife is a die hard catholic and is very positive and talking about prayer a lot. I don't share her beliefs and am generally pessimistic. I keep imagining Dad dying on the operating table. Being with him all day and having to keep up this false positivity wore me out. He's not letting on how he feels at all and I'm not going to push him to talk about it. But all this brings back so many memories of losing mum to cancer when I was 18. Half the time I feel wiped out by worry for him, and the rest of the time I despise myself for using his cancer to get sympathy. I can't believe I'm actually jealous of him for having a bona fide physical illness. One that everyone feels sorry for him about. I'm struggling a lot even with the new meds. Torn between needing to do everything and anything, and being too tired and down to even get dressed. I feel like I'm leeching off my own father. I don't know how to trust my own emotions. When I get upset, is it because I'm scared for him, or am I just acting? I really thought I'd got all this identity stuff sorted out but I feel like two people at the moment. Good and bad. Weak and strong. Cold and Warm. Black and White. Damn bpd.

Some time in the last day or so (time is slippery right now), I took an online version of the Goldberg Depression Inventory. (It's a lot like the Beck, except I don't like Beck. Beck is a jerk.) I figured I was a depressed (the weeping and immobility were my first clues), but I wanted to get some perspective on my subjective sense. (With a self-scoring questionnaire --- what could go wrong?)

I landed in Moderate-to-Severe Depression. It wasn't a surprise, and of course it wasn't a diagnosis, either. It was information, of a sort. I noted it and went on with my business, which just lately is treading treacle.

I was wispy today, rather like a ghost in some senses. Sleep-walking, as I said before. In between treading treacle I've been lying down a lot. I thought there would be more sleeping, back on 600 mg of Seroquel, but no. There's been a great deal of lying down, and rather a lot of blankness.

This afternoon I was coasting like that, thinking of nothing at all, and an upwelling of PLANS began to flow. The plans worked themselves out and then they refined themselves into better plans, and then they began to elaborate upon themselves. It was just a little alarming, so I got up and started to carry out the plans. I cleaned. I organized. I exercised. I went outside and basked in the beautiful weather. On the way back to the apartment I spoke with a neighbour and I realized I was happy.

I'm happy. I'm also not tired, not even a little tired or sleepy or slow, and I should be. (Well, the body is, thank you Myasthenia Gravis.) We are splitting the dose of Seroquel to avoid akathesia, and I should be sedated right now. Actually I must be sedated right now.

*laughs*

I realized this was somewhat odd (not bad, just weird. Happiness is never bad). So I went back to that website and took the Goldberg again. Not because I'm depressed --- because I'm NOT depressed. Or, well, actually according to the test I'm a smitch depressed. Feelings of failure and a bleak future don't just go away, though apparently a lot of things DO just go away.

On the other hand, if they can go away that fast, they can be right back just that fast. That's less amusing.

I am ze quick change artiste! I am ze astounding yo-yo girl! Watch as I plunge from this shining height to the pit of despair and cry myself to sleep! Observe the ease with which I shift from silent stony stillness to dancing down the hallway!

Seroquel is a mood stabilizer?! HA! I scoff in your general direction, AstraZeneca! No cookie for you!

Eight years, nine years, a decade and more of "psychiatric medications." Antidepressants, anxiolytics, Depakote sprinkles, enough spiffy atypical antipsychotics to fell a fleet of flying elephants. We are crazier now than we were when we started.

*laughs* Merde alors - je suis fou!

~ Rosemarie

I wander, dazed. I lie down with my eyes closed and my mind empty. Time is a falling feather; time is slipping mercury. Everything is presently distant except my vivid dreams of the dead. The remorse and unreasoning terror that were burning me alive, burning me out, are dull aches with no attached sense of urgency. Loss is empty spaces that may have always been empty.

This is: no whispered thought of blue butterflies to congregate and shatter into states of pleasure. This is: no round rainbows faintly chiming as they fall. This is: the beauty of the world shifted from a solace to a quiet, persistent hurt.

But I'm a good girl, I am.

This is: medication regimen compliance. We are taking our Seroquel. Society is saved. You can all transition from vague disquiet ---> back to open disgust.

I have.

~ Rosemarie

The annoying this about me is that I think that if I didn't have manic depression that I might be a happy person.  When I think back to the days of rare euphoric mania, I was never fazed by anything, I was fearless, sociable, creative and I think, or thought, that it was just an exaggerated version of what I was really like.  I am clearly naturally optimistic or else I wouldn't be there and wouldn't be putting myself through these fucking medications and appointments.  They take up an astonishing amount of my life. I don't actually believe in "the real you", I think who we are is fluid, not fixed.  But I think that the maybe natural me is not this person.  How I do not want to be this person. 

The psychiatrist, the CPN and the social worker.  It sounds like the title of a low budget film.

While waiting for my appointment today, I noticed a rather strange man having a very animated conversation with himself.  He was dressed in a t-shirt and trousers, held up by braces, with a pink Barbie shoulderbag, an arm covered in jelly bracelets and a baby's bonnet on his head.  He was about fifty years old with a sparse, rubbishy little beard.  I often see strange looking people in reception- it is a mental health centre after all- but he was the most interesting.  He wandered very jovially around explaining to himself, or to whomever he was hearing, how things worked.  He cast grateful clarity upon the light switch and waved his hand in and out of the automatic doors as if to prove that there was no mist or magic present.  I almost wanted to speak to him, but he seemed to not hear, or be ignoring, those who did. 

Today I said goodbye to my wonderful, P.J Harvey loving, cigarette cadging heavily pregnant CPN Hannah.  It was quite a perfunctory farewell and I'm glad it was as I felt like crying.  I wanted to tell her how much she's done for me, but in order to avoid gushing or appearing pathetic I just said, "Thank you for everything" and we had a hug.  I hope she's back next year and hope that in November she gives birth to a baby and not a goblin or portable television or suchlike.

Hannah was a revelation to me after an awful year in Haringey's mental health team.  My previous CPN was crap.  I don't know if she was hampered by Haringey's general shitness for which it is renowned but she was almost entirely useless to me.  We'd meet once a month or so and she'd nod for a little while, scribble stuff down and that would be it.  I lived with Rob and couldn't claim benefits so I was encouraged over and over again to work, and thus kept losing jobs because I was not well enough to be working in the first place.  It messed with my head because I was ill (still am) and it was humiliating and battering to have to leave jobs because of it or be sacked.  It was also excruciating to know that people easily picked up (and do pick up still) on the fact that I had mental illness because of my behaviour. The stress was immense and even just working while taking the medications I was and am was difficult. Even travelling to work was traumatic as I'm not good at travelling alone.  They, and my illness in general, makes it hard for me to concentrate, remember stuff or not trip over, and, most embarrassingly, when I was on Lithium I had terrible hand tremors and slurred and they thought I was drinking.  So, on lots of occasions, I stopped taking my medication so I could function at work.  The result was relapsing over and over into manic episodes.  She didn't offer any advice, didn't really do anything and I would have just walked away entirely had I not moved to Islington.  

When I moved to Islington I had lost another job and was advised not to work.  The cycle was neverending and I was close to homeless.  Hannah helped me with my benefits and the DWP, which was a massive load off my mind (again, you can do a search on this site to see the amazing amount of problems I had getting benefits.  I have no idea how people commit benefit fraud, it's impossible, they want to see your blood and bra size before they will help you.  I get DLA and Income Support amounting, and the forms were filled in by me, Hannah and the psychiatrist, who also wrote supporting evidence.  People under 25 are also very discriminated against by the DWP.  They seem to assume everyone has the same needs and has their parents.  I wouldn't ask my mum for a light let alone help).  It took a while for me to actually get them but I did and now at least I have some sort of security.  

We met weekly, she actually listened, she made me laugh and she took me seriously.  I had a very dim view of mental health services before I met her.  Now I can see how useful they are if they're decent.

I'll miss her.  I told her when my Radio 4 play was on (next year, although I can't tell the world at large when yet) and hopefully she'll listen and laugh at my ridiculousness. 

I met my new care worker, who is not a CPN but a mental health social worker.  My first impressions of her weren't good; she spoke very LOUDLY and slowly, as if I were simple.  If she tries to patronise me there might be fists.  She looks like one of my mother's raucous friends.  But they're first impressions.  Hopefully I will like her.  And hopefully she's as good at her job as Hannah is.

I also saw the psychiatrist.  He is much easier with me than he was before, not as clinical and starched.  He refered to me as "profoundly depressed" which surprised me but which I know is true, I just don't care much, about that, about me, about anything at the moment and haven't done for months.  I used to be terrified of dying but it's deserted me.  It was almost an insurance but now I don't care if I get hit by a car, at least it means an end.  I don't often get "ordinary" depression.  There is usually an aspect of mania to it, which is difficult for them and for me.  I am still having the horrible racing thoughts and I am exhausting myself pouring all my energy into distracting myself from it, which also means I have been doing Stupid Thoughtless Impulsive Things® that have been getting me into trouble.  I am physically fucked at the moment, which isn't helped by the fact I have totally lost my appetite and have no energy, but have still somehow gained weight.  I hate the combination of feeling of tireless mental energy, but when you open your mouth you take about an hour to get one sentence out because you have to interrupt your own hideous spin of thoughts to extract something that makes sense and is relevant to the question.  I am noticably a bit "weird", some would say, but I can't help that.  I put it down to just being a rather "odd" and slightly eccentric- and not in a "Fnar, I'm MAD!" way- person.  

I have zero concentration too so keep losing the thread of what people are saying to me.  Sociability feels like one grand performance but I still do it so I am doing something and I want to be happy.  I let my guard down in my psychiatric appointments.  I don't pretend to feel better or worse than I do.  I don't particularly like writing about this mood, either, because it isn't changing and I don't want to be melodramatic or depressing.  I need a modicum of control here, even for just my benefit.

I got the usual round of questions, some which made me think.  

Are you hopeful?  Nope.

Have I been having thoughts of harming myself?  Duh.

How so?  Jumping off something high, hanging, train tracks.  Violent but definite ways.  I am afraid of overdosing again because it's not reliable and in my experience has been painful and horrible. 

Have you ever bought a rope?  No.  I have always resisted thoughts of hanging myself because it's how my then-best friend Vicky committed suicide in 2001.  That, and Brendan and my dad's death, is one of the main reasons I am still around despite feeling this way.  I am aware enough to know that no matter who you are in relation to someone, they will feel partly responsible for your death and it will haunt them, like those deaths haunt me.  It is in part being alive because I have to be, but I am not sure I can be that cruel.  For the most part I keep the thoughts to myself because I know how difficult I found it when Brendan, Vicky or my dad told me bluntly and plainly how they wanted to die.  I only really talk about these things when I am at my appointments. 

Have I been feeling guilty?  Yes, about everything (particularly haunting me is the incident recently when I drunk dialled my ex and caused a massive fight which ended in him telling me never to contact him again.  I am mortified that my existence and stupidity upset someone I don't even know and caused problems.  I also don't want her thinking I am some stalker or mentalist, it's not the case.  I hate the thought of her or anyone else reading this and thinking, "What a nutjob.  I'm glad I don't know her".)  

Do I enjoy anything?  No, not really.  Hence the lack of writing or wanting to write, not being arsed to eat, barely listening to music, not being able to focus on reading,  the hardly bothering to have baths and the unusually for me not bothering much with make up or clean clothes these days. 

What was the worse physical thing I have ever done to myself?  I was puzzled by this question.  Did he mean an accident or otherwise?  He clarified, he meant suicide attempts and self harm.  I found this hard to answer because the suicide attempts I have made are things I don't have a clear memory of. I wasn't exactly thinking clearly at the time although I do remember being almost robotic when I did them.  The most recent was last year and it involved taking every Lithium pill I had left.  

Have you ended up in hospital, had stitches or such from these things?  No.  The truth is that I would never phone an ambulance for myself or go to A&E.  I have certainly needed stitches in the past, and have had them once on my face.  I have rather bad scarring because of the lack of stitches.  I held myself together and used cold stuff to numb the area (leading to me knocking a joint of meat down the side of the bed, which stayed there, rotting, stinking, before I cared enough to get rid).  I stopped cutting myself for a while and drank bleach instead.  I used to put it in my a cup at the side of my bed.  It looked like water.  I also used to use bleach to brush stains off my teeth which is one reason I have such terribly rotted teeth now.

Due to my ineptness, though, when I have taken overdoses, I have just vomited, a lot, for a long time and felt terrible and weak and sick.  I probably should have gone to hospital and I might have done a bit of damage to myself.  I didn't tell anyone at the time, on any occasion, what I'd done.  One of them was when I was still at school and severely depressed, had just lost Vicky and also being stalked and harassed by every communication available by Robert's then girlfriend.  I could barely move in the morning but my mother, usually a enabler of truancy, barked at me to get out.  I threw up in front of her and she made me go.  I puked out the window of the taxi (in West Belfast black cabs are a form of public transport), got out to ring her on a payphone to ask to come home, puked on the ground, she told me to go to school, I got to school, puked at the entrance then collapsed in my class.  And then went home and threw up combinations of blood and black stuff.  I remember very well standing above the bowl staring into the black, shiny surface of the water. 

I think it worries them a bit to know that if I got really low and was thinking of doing something, I wouldn't call anymore.  They keep reminding me that I can ring the Crisis Team (who I was with in April) or go to the crisis centre.  My rationale is that if I get that bad, I'm going to do whatever and it'll be my choice, so.  Hannah's rationale has always been that I am not thinking properly if that's what I want to do so they try to prevent it.  

He also asked me how often I laughed and cried.  I laugh more than I cry, but I am not the kind of person who cries at all.  I am the kind of person who cries at films and books, but not at real life.  I sometimes cry when I alone, I cry out of grief and sadness for my dad and Brendan and grandparents.  For the most part, though, I am almost stoic and unemotional when I am depressed.  I have been really anxious and panicky for months and that's been tearing me up, too.  It makes me feel physically sick.

The new person asked me if this was one of the worst depressive episodes.  The psychiatrist thinks that it is severe depression.  It is not one of my worst in terms of your standard depression.  I have been depressed to the point of muteness and paralysation, but this, somehow, feels different because I am indifferent.  I have the acute feeling that this may be my last depression and the one that ends it.  I have no strong emotion either way about it.  I have been mildly surprised at the attention being paid to it; I have been having a lot of psychiatric appointments, and he is concerned.  I thought nothing would get through his implactable veneer.

She also asked on a scale of 0 being the lowest and 10 being the highest where I am.  I said I found that hard to answer because I don't have the stereotypical type of depression that can be quantified as such.  But I told her that I felt pretty bad and have done nearly all year.  (Aside from one manic episode at the beginning).  I wonder what normal mood must be like.  I haven'd had a sustained period of it for over ten years.

Since having stickers gently placed on my breasts yesterday I am now starting Effexor which the doctor hopes will help and is a bit of a last resort.  I will try it, of course, will try anything, I don't enjoy feeling this way.  Other antidepressants have kicked me into mania which is why they have been hesitant to start me on one.  I had fun today thinking of the medications they have tried in the past two years since I left hospital.  Read them aloud, it sounds like poetry.  There has been:

Lithium (mood stabiliser most commonly used for my type of bipolar, bipolar I disorder) (which didn't work and made me ill)

Depakote (mood stabiliser used in conjunction with or when Lithium is not working) (which also didn't work and on which I put on weight.  It has fucked with my hair too)

Seroquel (an antipsychotic used for schizophrenia, mania and psychosis) which I still take.  I put on a lot of weight when I started it but it has levelled of 

Haloperidol (an old school antipsychotic) in hospital

Lorazapam (I think it is a tranquiliser) in hospital

Paroxetine (antidepressant) made me manic

Sertraline (antidepressant) did the same thing

Lamictal (mood stabiliser for Bipolar I disorder and apparently good for rapid cycling, which I have, and which has actually calmed down) which I am still taking to keep mania at bay.

Risperidone (antipsychotic) which gave me hypomania-inducing insomnia

Zopiclone (hypnotic, sleeping pill)

Valium (benzo, I think)

and before that, at 16 and 18:

Carbamazepine (mood stabiliser given to me when I was manic.  Made me worse)

Olanzapine (antipsychotic, used for schizophrenia, mania and psychosis.  Given to me for manic psychosis)

It raises a wry smile as, before I had to go into hospital, I was notorious for hating doctors and not even taking headache tablets.   It must mean something, that at least I'm trying.

I am worried about taking Effexor.  It sounds like the name of a fast car.  I hope it picks me up out of this, but if it doesn't, I don't think there is anything left to try other than ECT or something.  All I can hope for is for my mood to naturally switch, as is does, but then it would go back into depression, as it does, and I can't be like this forever, I will not make it.  

I'm vainly worried about weight gain, too.  It seems shallow but bear in mind I have an eating disorder and BDD.  It could pick up my depression but the other two would get worse and I would still be depressed. 

I hate beginning medications as every time I get really unsettling nausea and vomiting and feel absolutely shit for ages.  Psychiatric medications are hardcore drugs and they fuck you up in the first instances.  I don't think any further memory problems either as I have successfully forgotten to pay most of my fucking bills this month.  I bought a cute chalkboard for the hallway so that I could jot things down but it was counterproductive since I forgot to jot things down...

I'm also worried it will send me manic as I'd put money on it being a dysphoric mania.  Although I guess I am going through "agitated depression" at the moment, dysphoric mania (which I have written about before, you can search posts) is like hell made real.   It is difficult to medicate me because of the manic edge.  Mania has always been more of a problem for me than depression and always caused the most destruction, turning psychotic at its zenith.  Yes, I get depressed but usually the mixed episode type of lunatic despair.  People's predominate opinion of me has been that I am stark raving mental rather than a depressive because of it.  

Anyway, we shall see, eh?  Gosh, isn't life exciting?  *Performs amusing dance*

For anyone that is unfortunate enough to suffer from panic disorders taking panic disorder medication is almost a necessity. Fortunately, there are many different kinds of such medications to choose from and most of them are available through prescription and so, cannot be purchased over the counter. Read Further Panic Disorder Medication

The downside to numbing myself with an anti psychotic is that I am generally away with the fairies. My fingertips don't even feel like they're connecting with the keyboard right now. I'm sleeping most of the day and have awful stomach pains after eating. My nose is permanently blocked and I'm craving carbs when I wake up.

I was determined not to spend the day in bed and made it into town to buy a swimming costume today. I'm not going to let this pill cause any weight gain if I can help it. I just need to figure out how to stay awake in the pool lol. It's a very strange feeling to crave food but not feel that I can be fecked to go to the shop and buy it. I haven't binged in the last few days and not doing so hasn't brought up the usual urge to cut.

I read the list of side effects with some dismay. Funny how the more intense a psychiatric drug is, the simpler the enclosed drug information becomes. I guess they don't think anyone taking an anti psychotic is capable of understanding words of more than two syllabuls. For example it tells you to watch out for certain symptoms, without mentioning that they are signs that you have either tardive dyskinesia or NMS. I'm surprised they don't just use emoticons and leave it at that. This pill good :) May give bad tummy :( etc etc.

So, after nearly 20 years of various psychiatric treatments, I find myself on my first mood stabiliser. A step back or a step forward? Am I being given meds because it's cheaper than therapy? Do I really need them at all? I'm not going to get into all that for the simple reason that last week I felt suicidal, and this week I can cope. And that's enough for me right now.

I figured I was just like them.

But I guess I'm not. I am fat, after all, because of the meds and really there is no denying it. I was a super thin, active athlete before I started taking meds. I was strong and hard and had incredible stamina for long, hard, bike rides in the hills surrounding the Bay Area. I went to the gym daily too. I hiked, swam, and played tennis. I pretty much did anything athletic that came my way.

So when I got fat on drugs, it was confused by the fact that I couldn't be athletic in the same way anymore either due to the sedating, butt-kicking effect of the drugs. I stopped exercising because I had no energy. So people (family and friends and therapists and psychiatrists, all) blamed the lack of exercise. They made it MY fault. This was so many years ago people didn't really know how horribly weight-gaining these drugs are even if people do manage to keep exercising and then there is the fat-phobic nature of our society---those of us who are fat are always at fault, psych meds or not---all it ever takes is a bit of discipline....yeah right.

In any case right now I'm too weak to exercise more than an occasional walk and a bit of stretching and I've lost 15 lbs in the last couple of months as I've come off the last of the neuroleptics, the drugs most guilty of weight gain...interesting isn't it?? I haven't tried to lose and ounce. Hell no, I'm not even exercising.

Fuck everyone who said I was a lazy fat person.

Drugs are evil, but so are all the people who like to blame us for how they make us dysfunctional---physically and emotionally.

Okay...I'm feeling a little residual rage coming up at the moment.

Deep breath and....

Peace out....

During our struggles, frustrations were expressed. I sometimes wonder if Dad recalls any of these moments. I'd like to think that he doesn't as at times the stress can be just too much and anger rears it's ugly head or tears are shed. I hate to think that any of this would make his mental psyche worse than what it already is. We usually always keep our cool but there are just some times when it all gets to be too much and you just loose it. You can't help it. You just break down. I can't help but feel bad and guilty for not keeping it together. It's not Dad's fault... It's the disease. I like to think that we are strong but I guess everyone has their breaking point at some time or another. I just feel bad.

When Dad has his bad "episodes" and when he finally comes to, I ask if he remembers what has happened to him over the past few days. More times than not, he does not recall anything. Whether or not he really does not remember or he chooses to overlook what has transpired, I don't know? He says he is unaware of any of the troubles he had or we have experienced during his episodes. Yet, during his episodes when he snaps out of it for a brief moment, he'll apologize, "I'm so sorry," over and over again. I think he knows something bad has happened or that we are distraught, just not to the degree that it really is. I think, slowly, Dad is realizing more and more that he is not well. He's been in a sort of denial but I think he's truly starting to feel the affects of this disease.

I often wonder what goes on in his head when he's in his episodes. Does he know what he's doing? Does he have any control? Can he understand what we're saying? Can he snap himself out of it? Is this part of the disease, or, is he just whacked out on all the medication he's taking? I'm sure trying to balance his meds regiment is part of the problem but another part of me wonders if he's progressing further in the disease or this is just the lewy roller coaster that we have to learn to accept. Unfortunately, these are probably questions I'll never have answers to.

For now, we've put Dad back on the full dose of Seroquel and it seems to be making a difference.

I'm also being referred to something called the T Poject which basically puts nutters into voluntary work placements or helps them into paid work. I'm very anti work at the moment. I don't need that added stress. But it can't do any harm to go and see what they're about.

So next stop was the blood clinic to have a fbc plus checks for diabetes and thyroid problems. I coped with that quite well as they tactfully ignored my self harm scars. I did however lose my temper in the queue at Marks and Spencers after waiting 20 minutes, whilst the numpty at the check out had a panic attack over some vouchers. Grrrrr, it's ok though. I didn't hit him.

Thanks for the support to those of you who have replied to my posts this week. Much appreciated. I am so looking forward to a decent nights sleep on these new magic pills.

The problem is, before Zyprexa, I was on Seroquel, which is very sedating and great for sleeping, but it kept me rather sedated all day - to the point where I was falling asleep at my computer. Zyprexa is sedating, as well, but it doesn't "hit me" as hard, and it wears off enough to allow me to function. The problem with some of these meds is that you're darned if you do, and darned if you don't.

I am happy to report, on a related note, that I haven been gathering quite a few interviews of random people for my book. I belong to a few mental health groups on Facebook, so I put the call out in the groups to e-mail me if they wanted to tell me their story. It certainly has been interesting. One woman gave up on Christianity because she was schizophrenic, and when she went to church she believed that she was Jesus' wife. No more religion for her. I'm not quite sure where or if that fits into my book, but I certainly did find it interesting.

I am having to water down my language, unfortunately. One of the goals of the book is to reduce the stigma attached to the term "mental illness." It's to make people realize that heart disease is a disease of the heart, diabetes a disease of the pancreas, and mental illness and disease of the brain. But as it turns out -- and I should have known this -- people hear "mental illness" and freak out. They don't want anything to do with it. So I've gone from saying "mental illness" to "emotional issues." Hopefully that is coddling enough to reduce everyone's anxiety.

Like I said... darned if you do, darned if you don't.

I have to tell you, when Dad has a doctor's appointment the family goes along, too. It might seem weird to some and I think probably bizarre to the doctors, but I have my reasons why we do it. I like to believe when we go to an appointment as a family, it helps better Dad's care with the doctors. I like to think instead of the doctors seeing a sick, old man that they see a gentleman that has a "young" family with two 20-something daughters (okay, I'm 30 now... but just barely) and therefore they'll want to help Dad more. It's like seeing that Dad has "young" kids will make the doctors believe that he's not just an old, frail, dementia patient. It's like we want to humanize Dad and not have him be just another clinical case for the doctors. I just feel when people and even doctors and nurses know your loved one has dementia, it's like it's a hopeless case so really, why bother that much. No medicines are going to cure the condition so it's a bit of a lost cause, you know what I mean? Dementia = not a fair go... Have dementia turn in to Lewy Body Dementia and you're definitely last in line in the medical community.

In times where doctors' visits can last no more than 15 minutes, I believe any edge we can give Dad is worth whatever amount of time and effort. For what it's worth, I choose to believe that the doctors seeing that we, as a family, are all involved with Dad's care will inspire them to work harder for Dad, to care more for Dad and to have compassion for Dad and for all of us. Perhaps it will even help Dad stand out more from all the other patients they see day in and day out, maybe they'll think about him more, or, even be willing to try a new drug on him that they perhaps would reserve for others. I could be completely delusional in my thinking but I do take some comfort in thinking it aids Dad in better medical attention.

Several times, when we have all been under the same roof, all five of us have gone to appointments with Dad. Mom, Sister, Husband and I have taken Dad on several occasions; sometimes because it physically took all of us to get Dad out of the house and other times because we wanted to make a difference to Dad and to the doctors. I think the doctors are often times taken aback with the entire family in their small offices but at last they have become accustomed to having the family there. In fact, I think our neurologist thinks it's kind of comical, in a good way, and often laughs and smiles when he sees all of us. At least I know we're working our magic on him.

I know my thinking could be completely irrational and a bit selfish on my part, but I'd like to believe that seeing Dad's doctors as a family does in deed help Dad. In the end, I want to do whatever I can to help him and I imagine most people in the caregiving position, would want hard-working, caring doctors for their loved one.

The other reason we go as a family is to support Dad. Knowing that Dad has our constant love and support helps Dad get through each day. We don't want him to give up. He must keep fighting for himself. He depends on us and we can't let him down. Dad needs us and we'll always be there for him. Having us there every step of the way- for every appointment, every new phase and whatever else comes our way, we'll always do it together.

Seroquel was being looked at for "overdose due to sample pack labeling confusion," presumably referring to label information on the free drug samples AstraZeneca distributes to doctors and hospitals. Neither the FDA nor the drug maker would elaborate on the potential risk.

"We know that FDA has received reports regarding the label on sample packs for Seroquel, and we are working closely with the FDA to determine the nature of these reports," said AstraZeneca spokeswoman Abby Baron. An FDA spokesman did not respond to questions on the Seroquel reports.

The FDA compiled its list from "adverse event" reports it receives from drug makers, doctors and patients. For a medication to be listed, the FDA said, an agency reviewer has determined that the drug merits a closer look because of the number or seriousness of the complaints.. .

FDA officials said they are trying to walk a fine line in being more open to the public while avoiding needless scares. Congress, in a drug safety bill passed last year, ordered the agency to post quarterly listings of medications under investigation. ..

The FDA's list received a mixed reaction from some consumer advocates who said more information was needed about the potential risks.

"It's a good thing to get started but it needs to have much more detail if it's to have significant safety value," said Thomas J. Moore, a senior scientist with the Institute for Safe Medication Practices.

Story link: http://www.delaware online.com/ apps/pbcs. dll/article? AID=/20080906/ BUSINESS/ 809060323 ]]> http://candidalovestuesdays.wordpress.com/?p=90 Sat, 06 Sep 2008 20:33:54 +0000 Jingo http://candidalovestuesdays.wordpress.com/2008/09/06/the-triumphant-return/ So when T read the last post, he wanted me to make sure and post our awesome doctor's opinion.  She said that candida does not overgrow in the system except in such extreme cases that you would be in the hospital regardless.

I am inclined to believe her.  She is extremely open-minded to other problems, and involved heavily in diagnosing and working towards understanding the GI system.  At one point, both T and I were absolutely sure that he had candida.  He had all the symptoms!  They improved with cutting sugars out his diet.  And yet, we've found that they're improving more with this correct diagnosis.

So, onward and upward, the triumphant return to the doc's.

The Followup Appointment

So, the followup appointment started as a bit of a disaster.  We arrived at the doc's office and were told that we weren't in the system.  We produced her tiny, handwritten card and the nurses and staff went off into a flurry to figure out what was going on.

In the end, the fix was simple -- we'd been scheduled in for a 3am appointment instead of a 3pm appointment.

The first thing we did was talk about how T was fairing with the Paxil.  And the end result was "not to great".  Though many of the GI issues had resolved themselves, the missing sleep and difficulty waking were producing the same end results -- it was impossible for him to get into work.

And we got more exciting news!  T was not lactose intolerant, but he did have a bacterial overgrowth in his GI system!  It sounds silly to be so excited about that, doesn't it?  But you have to realize, this was the first time in FOUR years that we had an actual diagnosis of something real.  We were both excited.

Together with our doc, we formulated a plan.

First, she wanted to do an antibiotic run (and stop the probiotics) to try and eradicate this bacterial overgrowth.  Initially she suggested Xifaxan, which is a relatively new, "hotshot" antibiotic that targets specifically the GI system.  However, we had already been on a run of that from the bitchy doctor with no improvement.  That was added to the overall knowledge pool, and we opted for a run of Ciprofloxacin instead.

After the 2 week run of ciprofloxacin instead.  We were given the option of trying Flagyl, but it's tougher on the system overall, so we opted for the Cipro.  That took care of the initial problem, but not the Paxil sleeping issues.

To cover the insomnia/trouble waking up, we developed a several step plan in order to figure out what would work the best for us.

Once the antibiotics stopped, we would cut the Paxil dosage in half for 2 weeks, and observe the effects.  If not enough improvement was noticed, we are going to add another drug commonly used for psychiatric problems but with an off-label useage for digestive problems like T's, Seroquel.  Initially, we were going to start with a half dosage to try an dkeep him on as small a dose of medication as possible.  The effects of the seroquel are twofold -- to help him sleep (which is one of it's side effects) and to boost the effects of the Paxil to try and keep the positive results while cutting out some of the side effects.

If that doesn't improve things, we have the "go" to up the dose of Seroquel to a full dose.

Also, please note that (at least in the case of the Seroquel) the dosage used is extremely tiny in comparison to psychiatric use.  I believe she quoted us 500mg as the starting point for psychiatric use, but our dosages are more in the 50mg range.

We have another appointment scheduled for October once we finish playing pill swapping and seeing what happens.

And I got exactly three hours of sleep, so telling me it will make my life more sparkly NOT going to cut it.

We have been backed into a corner by lack of services, the chemical imbalance theory/model of mental illness, and years of taking these stupid drugs, and I don't lie down and say uncle when backed into a corner. I get out my shinyshiny knives.

Eight

I don't really feel good. I feel much less bad. I've cried twice today for no real reason, just the pain in my heart --- but I don't feel like that pain is going to rend me to bloody strips, anymore.

I feel so much less bad I'm giddy with relief. If AstraZeneca were here, I'd give him (surely AZ is a him) a big, breathless hug. Thank you. I don't think I'll be jumping off the building now. Thank you very much. I can bear it now.

My name is Rosemarie, and I am a Seroquel whore.

So there goes my secret feeling of being superior in some small way to my siblings, both of whom drink themselves to sleep at night. I also require a substance to buffer me, enfold me, make me ok. At least the sibs can hold down jobs.

I feel less bad. And I feel ashamed. What am I doing? Why am I doing this? What the hell is wrong with me? What am I compromising or outright giving away because I can't hold my own emotional violence? I can't contain myself without assistance?

No. I can't.

And you know what I'm going to do tonight? I'm going to take my Seroquel. I'm going to hate it, and I'm going to do it.

~ Rosemarie

If I can give you one piece of advice, it's make sure you trust the doctor who is prescribing your medication. Never accept a prescription because it's what the doctor has samples of.  And if you notice that her office is filled with Cymbalta paraphernalia as she hands you the Cymbalta samples, run as fast as you can in the opposite direction.

Seroquel XR, an antipsychotic drug approved to treat schizophrenia and bipolar disorder, may ease generalized anxiety disorder, new research shows.

Seroquel XR (the "XR" stands for "extended-release") is approved to treat schizophrenia and bipolar disorder. Its maker, the drug company AstraZeneca, is seeking FDA approval for Seroquel XR as a generalized anxiety disorder treatment.

In the new study, 854 generalized anxiety disorder patients were given either Seroquel XR, Lexapro (a prescription drug approved to treat generalized anxiety disorder and depression), or a placebo without knowing which pill they were receiving.

For eight weeks, the patients took their assigned pills daily. During that time, Seroquel XR and Lexapro beat the placebo at reducing anxiety, according to surveys completed by the patients.

Those improvements started on the fourth day of taking Seroquel XR. Lexapro was "also effective, but improvement was not seen by Day 4," write the researchers. They included Charles Merideth, MD, of the Affiliated Research Institute Inc., a San Diego company that conducts medication studies for drug companies.

The most common side effects reported in the study were dry mouth, sleepiness, sedation, nausea, dizziness, and headache (with all pills). Constipation and insomnia were also on the list for Seroquel XR; fatigue and diarrhea were common side effects in the Lexapro group.

click here to read the full story.

But it's not as bad.

I've scratched myself raw. Usually when I stop  taking Seroquel I can't sleep, my muscles twitch, I am restless and cannot get relaxed and comfortable, I have headaches, but the itching is a new one. I've now discovered that apparently it's not uncommon. Ah, the joys of psychiatric medication.

Yesterday saw a point of pain and unhappiness that required desperate measures. If Eight had decided to top herself I could not have pulled my famous rescue routine. That isn't what she chose. Instead she took a higher dose of Seroquel.

It feels much the same.

We don't have a current prescription --- or rather we do, but we have not filled it. The most recent prescription was for 600 mg per day in a single dose. We have been taking 150 or 300 mg at night because that is what is required for us to sleep. We would sleep eventually, I suppose, but the discomfort of 36 hours plus of wakefulness isn't something we historically handle well.

I'm being defensive because I've come to despise the drug, and am ashamed we are so dependent upon it. My preference would be to seal it in lead and chuck it into a deep hole, and I cannot.

Last night Eight took 450 mg.

In my opinion, in a general sense, you take a psychotropic medication or you don't, but you don't fiddle around with it endlessly, back and forth, because it messes people up when they do that. Give even a perfectly soberly sane human being (if such exist) varying doses of a powerful psychotropic for two or three weeks and you'll have a raving maniac or a catatonic on your hands. Just my observation.

The difficulty is applying this to myself, to us.

I don't want to take it at all. I don't want to. I don't want to. I don't want to.

I, on the receiving end (as it were) of Eight's quetiapine hail-mary, had a very difficult time waking up today. My throat is so dry it hurts. The myasthenic weakness, before Mestinon, this morning was rather alarming (in a weirdly distant way). I know all these side effects intimately. They don't really fade. Back on Seroquel I can look forward to all kinds of physical and emotional unpleasantness.

On the other hand, I don't feel as violently emotional today as I have recently. And I haven't almost accidentally cut myself, poured boiling water on myself, stepped into a purely hot shower, or as far as I know in any way endangered my body because my brain is on the fritz.

Apropos of nothing: I think I begin to comprehend why Roses go silent. I understand the language perfectly well. Communication just seems pointless. What difference does it make if I speak or write or... anything? It's so hard. It's so tiring. I want to stop, just stop.

I don't know what to do. I can't not take the drug entirely. We seem to be accelerating out of control (whatever that means) on the low dose. Messing around with the dosage, changing it every day, probably is unwise. It sounds like I do know what to do, doesn't it? Take your medication, there's a good girl.

I don't want to.

I don't want to.

I don't want to.

Rm

Lyrics from "Desire" by Toad the Wet Sprocket

Bollocks. I'm having a break from the Seroquel at the moment. It works great for me, but the side effects are terrible. I have developed a routine whereby I take them until I feel better but stop when the side effects become intolerable.

It's a constant balancing act. I'm feeling ok at the moment, but the danger is not being able to recognize when and if  I should start taking them again. I haven't mentioned any of this to my doctor. I don't think he'd approve.