Clozapine blues (and pinks and greys)

Prologue: "I had no idea what I was going to write in this blog post because, quite honestly, not much has happened. But in the true Alice style, I decided to write about the fact that nothing has really happened. Still with me? Good."

I feel really pants today. Like the clozapine should be doing something. But it isn't. Well, that's not entirely true. I am so tired and hungry and I'm doing serious trouser trumpets. It was funny, I got up for breakfast, had my physical observations done, took the clozapine (25mg today) and decided to have a lie down. I got woken up at 11 by a nursing assistant asking if I wanted to go in the gym. I was still in my pyjamas so I gave it a miss. Damn I wish I had said yes because the next thing I knew, I was waking up at twenty past twelve.

I don't even know if the clozapine is helping because I was still feeling really restless and needed 10mg of olanzepine to help me settle.

Ah! Boom! Something happened. I did art at 2pm. Hence the multicoloured title.

Feeling blue. Need some love :-(

A nice visit, a fillet of unspecified fish and a bottle of cherryade

I had dinner tonight. And do you know what? I'm glad I did. Not just because I'm insanely hungry now thanks to a combination of olanzepine/clozapine, but because I challenged myself. And succeeded.

I was convinced the food was poisoned. I'd only eat things in packets, drink from sealed bottles. However, now I have eaten hospital food for three days and whaddya know- I'm fine. Plus it was delicious. Even though no one knew what kind of fish it was. I'm guessing it wasn't fresh loin of cod, somehow I don't think the NHS can afford fish that can be identified. It's the horse meat scandal all over again... "Goldfish found on psychiatric hospital menu"

The bf visited earlier. It was nice. Him visiting me always makes the days turn out better. We went for a walk to the village. Or whatever it is, it's just a row of shops to me. I bought some cherryade.

This woman in the newsagents bought a stack of porn mags as "an anniversary present" because it was their paper anniversary. All I know is if I wanted to buy a porn mag I'd make several unsuccessful trips to the counter, each time returning only with a curly wurly and a packet of gum. Anyway, who needs a busty blonde centrefold when you've got the Internet? Poor woman though, the cashier shouted across the shop to her colleague about the porn mags. I give the woman at least a seven out of ten for replying (also quite loudly) "if he's lucky I'll watch [the enclosed dvd] with him."

Currently sipping cherry fizz and chewing watermelon flavour gum. Is that 2 of my 5 a day?

How do mathematicians work it out? With a pencil of course!

Today's title comes from the fact that I am bloody constipated from the clozapine. That's how mathematicians solve constipation: with a pencil.

But, just by reading my opening paragraph, you will have realised that I have started the clozapine. Finally 12.5mg last night, 12.5mg this morning.

And after the dose this morning I was a little drowsy. So I set my alarm for a 20 minute nap. Darn you snooze button! My nap lasted a good 2 hours.

The bf and family are visiting today after lunch so that will be nice.

The inbetween hours

What am I supposed to do? I am referring to the hours between dinner which ends at 6pm and night time medication which starts at 9. It's the time of day that confuses the hell out of me.

It's so cold so I've tried getting under the covers. Too early to sleep yet, the dryness of tired eyes eludes me. I'm not in the mood for puzzles or even maths, nothing left to read, the music I'm listening to has been on repeat since the early hours of this morning.

In some ways it is just a feeling that I have something to do but just want to get it out of the way. In my mind, this hurdle is medication time and hopefully the start of the Clozapine epoch. Only then can I go to bed ready to do this all over again tomorrow.

The sensations that accompany my being here are vast and range from silent agitation to a general feeling of unease. At the moment it's agitation that I have to suffer with behind closed doors, in the safety of my room.

Reading this, you may wonder why I choose to suffer in silence. My reasoning is that I don't want to appear demanding to the staff (there's 16 other patients, why me?) and also the staff, at times, can be very judgemental. I have already asked for (and received) 5mg olanzepine. It's not enough to settle me, I just felt pressured into having 5 instead of 10.

Luckily one thing plays in my favour. It's 7:30pm which means the staff have changed shift. The day staff are packing their bags and shuffling one-by-one out of the door as the night staff bring fresh energy to the atmosphere. Now I have no idea what the day staff have told the night staff about me. I don't really care to be honest, but I have a chance at reassurance and possibly a chemical induced relaxation to steady me.

That is if they're not too busy. They usually are though.

Good Friday Pi

Ever wondered what it's like to have a famous stalker? Or even just a follower?
And I know that what I am about to write wobbles on the tightrope separating the chasms of normal and delusional... But I'm being followed by what I reckon to be the worlds 2nd most famous mathematical constant, π, or 3.1415.....
Only beaten by Euler's constant, e. sound wacky? Let me explain more! It's not like I'm walking down the hospital corridor hallucinating giant numbers chasing me. It's to do with how I'm filling my time: sudoku.

Before this week, I had never done a sudoku. Last night I did ten. And each one had the sequence "314" in it. In every single puzzle. Now to any "normal" (and by that I mean not maths-obsessed) that would have no significance. But to me, I see π and therefore notice it more.

I wonder if its a similar phenomenon to the one I experienced when I started learning to drive- I suddenly noticed a lot more learner drivers and L-plates on the road. Maybe because I'm doing maths everyday that my maths "spidey sense" is picking up patterns in things that I would have previously overlooked.

I'm not sure if this is the start of something good or bad. I know it's the start of me seeing my environment, even my whole world from a different angle. Many people ask me why I would want to do a maths degree when it's so hard. My answer is that, yes, it's hard, but I can make sense of it.

It makes more sense to me than my life and as I delve further into the world of summations, differential equations and trigonometry, I slowly understand the real world more.

So for now, my friend π, I'm happy for you to tag along while I rebuild my life.

[insert superlative expletives here]

Like what the actual fandango?!!
Wednesday:
Dr "we can start your clozapine tonight"
NO CLOZAPINE

Today:
Nurse "you're starting the clozapine tonight"
Me "really? Are you sure this time because I don't want to get my hopes up"
Nurse "no it's tonight, the tablets have arrived from the pharmacy"
NO CLOZAPINE

Reason why? Because one of the pharmacists (and I know it's a pharmacist because they're the only ones with green pens) has defaced my prescription chart so that the date I'm supposed to start clozapine isn't legible. Therefore, can't take it tonight. Surely the pharmacist could have written by the side of it the date or at least told a nurse or the doctors the intended start date? Or is that an extra course they have to attend postgraduate to work something like that out?!

Can you tell I'm angry. Me no likey be angry.

Most of all I feel stupid. Very stupid. Since I was told on Wednesday that I could take it that day and it not happening, my anxiety has taken a extreme hike up the steepest side of Mount Everest. Hence I am trying to chemically induce relaxation with 3 different sedatives (olanzapine, lorazepam and mirtazapine). I think a lot of my anxiety came as a result of me actually eating the dinner that the domestics serve up. It tasted like shit and the custard was like yellow water but that's beside the point. The reason why this is such a big deal is because I'm pretty freaked out about the fact that people could be drugging my food in an attempt to harm me. So far I've only eaten packaged foods that are sealed and that I have picked randomly. So this was a big step.

Tomorrows big step will be eating something that has been made especially for me, like toast. I haven't eaten breakfast since I arrived here.

I'm also very anxious about the clozapine and that the tablets are the right ones. I feel like I can't trust the pharmacists at the hospital pharmacy (which is located at a different site). The pills are in one of those old style pill bottles that anyone can tamper with (ie not blister packed). And just a label on them that I'm supposed to believe. Before you say I'm paranoid, I could probably recreate my fear by getting a pill bottle, filling it with tic tacs and then labelling it as a cure for, I don't know, headaches. Or I could swap the tic tacs for street drugs such as MDMA and label them "clozapine tablets 25mg".
Do you see where I'm going with this?

Maybe my paranoia is justified. Maybe it isn't but as Erwin schrödinger postulated, you don't know if the cat is dead or alive until you open the box. (Google "schrödinger's cat" for more info). Until I take the tablets, my paranoia is both justified and wrong at the same time. Once I take the tablet I'll be able to move on.

Well that is, when I finally get to take one.

A rather nice array of knots on a string..

I have just got back from doing a group. It was supposed to be sewing and knitting but I made a bracelet instead. It took me half an hour. That's all I could concentrate for.

I had some olanzepine earlier. The staff are getting used to the fact that it does actually help me rather than denying me relief. And, lo and behold, I managed to have a chat with one of the staff who is my named nurse for today. But really? I can't remember what we talked about. My memory falls short there due to lapses in concentration.

My clozapine has been ORDERED. It should be today then. Apparently it takes 14 days to titrate. I'm hoping it won't be as disastrous as last time in eastbourne. I think the best way to think about it is to see it as a small wall to overcome through the assault course that is my life.

Morning all!

Well today is the day I've been told I'll start clozapine. And if I don't, well they will have to sort something out because my injection "runs out" today. Not that it ever did a damn thing anyway.

I had a panini for breakfast today. Mozzarella, tomato and pesto. It was amazing. I was so hungry. I think it's because I have been taking olanzepine at about 20mg per day for about a week. I suppose I'll have to get used to the munchies because they are a nuisance on clozapine. I gained about 3 stone while I was on it last time.

I'm also dreading having to get up tomorrow morning to take my medication. I know it's something I'm going to have to do but it's hard to find any sort of routine in this place.

My routine changes every day. For instance, yesterday I had a bath, did some maths, had a sandwich and read a magazine. That was pretty much my day.
Today I got up later and had breakfast. I don't like change all that much. This place is so far removed from the tranquility and routine of home. Most of all, I miss baking and cooking. And cuddles with the furry little creatures that call themselves pets.
Oh how I pine for home.

Bugger that

So, another promise from the staff broken. No clozapine turned up tonight.

I reckon there aren't enough staff on the ward tonight. There's only 3 for 17 patients. Since the night shift came on, no one has been available for anything. I had to wait 2 hours to have my phone out of the office and it looks like meds are going to be late. I'm fully aware that I'm not the only patient here but seriously they need more staff. I know it's trivial, but the hot chocolate hasn't been made which is upsetting other patients. I personally don't drink it but its a small thing that means a lot to some patients.

And my routine is buggered even more than usual. At home I take my night medication at 7 or just after. Yesterday I took it at 9 and today it looks like it will be even later.

Also, not one single member of staff has bothered to ask me how I am today. These people are supposedly writing notes which could be used for legal purposes saying how I am. How the heck can they write how I am if they never even speak to me. It almost seems like someone has told them to ignore me or something. I know I spend a lot of time in my room but it would be nice for them to pop their head in and ask me if I'm ok instead of just ticking a box on a clipboard to say I'm on the ward. I swear, my conversations with the staff go something like this:
"Please can you put my phone on charge"
*silence*
Later.... "Please can I have my phone back?"
*silence*
Later still... "Please can you put my iPod..." I think you can see where this is going.

I don't know what I can do to encourage the staff to help me. Heck, they shouldn't need encouraging. My care plan (when I saw it) had paragraphs about another patient on it.

I give up tonight. Perhaps the odds will be in my favour tomorrow?

Sooner than before

I have seen the doctor (second time in 2 days, couldn't work that out... Wait ages and 2 appointments come along at once). My blood test results have come back clear so on to the next test... An ECG. But I'm going to have to go to the medical hospital to have it done by the sound of it. I don't think there's a machine here to do it with. And all being well, I should start the clozapine TONIGHT! I just hope they titrate it slower than they tried to in eastbourne.

And I found out that I probably won't be going back to eastbourne hospital because I have a complaint outstanding against them. I really hope that once I'm on the clozapine that I never have to be in hospital again. I don't think I could handle the thought of another admission.

This morning I had a bath and I also did an hour of maths study. I learned about arithmetical progressions and answered all the practice questions correctly, even the couple that looked nasty. I love maths.

I don't know what time I'm going for my ECG, guess I will just have to wait.

But fingers crossed for clozapine tonight.

Ah well I tried...

I spoke to the doctor finally at about 3pm. It felt much like a job interview. But the outcome is that apparently I'm not well enough to come home yet. I'm disappointed. But I'll deal with it- I always do.

I had a blood test today and should be starting clozapine the day after tomorrow (Thursday). I'm slightly scared of going back on the clozapine because when I was in eastbourne hospital they really buggered it up and I had to stop. I know if they do it slower it will be better. I've done some reading on google and it takes about 21 days to go from 0 to 300mg.

I just hope that I will be out in time for the wedding on April 26th. I know I'll be here on my birthday but that can't be helped. Like I said, I'll deal with it.

Over and out

Unfair on me perhaps

The doctor never came. After promising three different people that he would. He appeared on the ward at about 4:15pm and when I went to the office they told me he had gone home.

I figured why they planned this, they want to test me. I didn't ask for pills all day, even though I needed them, they just want me to react in a way that would "confirm" to them that I have a personality disorder. I'm not going to give them the pleasure of a reaction and instead I am going to sit quietly in my room like I normally do and read a magazine.

So, more than 24 hours since I was told I could see the doctor, I'm still waiting.

Still waiting but feeling gushy

I don't know what time I made my last post but I reckon it was about ten in the morning. At 10:05 am I asked when I would see the doctor and I was told that there were 3 people in the queue ahead of me. It is now half two and I am still waiting. Grr. I have also just found out that I won't be able to start the clozapine until at least Thursday because there has to have been 2 weeks since my last injection, which was 14/03/2013.

The voices are bad today and I'm scared but I managed to eat a bacon and Brie sandwich after not eating for 36 hours. It was nice and tasty. I don't want to tell the staff much about how I'm feeling because they are already behaving strangely towards me. I don't know who reads this blog anyway. (Maybe if you read this you could comment...)

One of the nurses told my bf yesterday that they think I hear voices in the context of a personality disorder. However, my doctor in eastbourne says that the "personality elements" are only present as behavioural issues when I'm not well and that the voices fit the pattern of a schizoaffective disorder. I think that my doctor has spoken to the doctor here about it but obviously that hasn't passed down to the nurses yet. I'm happy that the eastbourne team "get me" and don't just think I'm an attention seeking stroppy teenager.

While I've been waiting for the doctor I have really been thinking about what's good in my life such as the bf, our future together and my animals. I miss my bunnies so much and can't wait to give them a cuddle and I suspect that Oscar the kitten has missed me too

Anyway, waiting, still waiting.

I want to go home

Ok so I really want to go home now. I don't feel suicidal anymore. Honest.
I want to be at home because I have better coping strategies there. Here, I have nothing apart from my music and that doesn't work forever.

At least at home I can knit, crochet, work through differential equations, go for walks and most importantly cuddle my animals. Plus I have this huge desire to bake up a macaroni cheese with extra mustard. I'm so hungry.

And it's not just me, the bf is happy for me to come home too. I just hope the doctors agree. I am more than happy to go back on a CTO and agree to the conditions. I don't really want to be titrated on to clozapine here, I'd prefer it in eastbourne. I just feel I'd be better at home until a bed becomes available in eastbourne.

At the end of the day it's up to the consultant psychiatrist. The bf phoned up earlier to express his opinions on the matter and although I didn't hear that conversation, I know leave was mentioned. Thing is, I'm so far away from home here it would take about 2 hours 15 minutes to get home and cost £25 each way if you include both taxi and train fares. I just don't have that sort if money.

The crisis is over. Now I just have to wait to see the doctor

Nice sleep

Just woke up about 20 minutes ago. I had a really nice sleep. That might have been due to the doctor finally getting around to prescribing the antidepressant that I was supposed to be taking. They didn't believe me at first until the bf brought in the box with the pills in.

It's breakfast time, well at least it was until about 2 minutes ago.  I'm not sure why I'm not really eating. Part of it is that I'm scared that there will be bio toxins in my food so i'll only eat packaged food and the other part is I'm just not that hungry. But I can't decide which reason dominates.

Looks like some of the nurses working today aren't the nicest people. I haven't seen all of them who are working today but there is one member of staff here who will do anything to cause me suffering. He's accused me of lying as well. I will have to avoid him. I'm sure of his origin.

All alone today. No plans.

23rd March

Today is a Saturday. I hope it will be ok. So far I took some prn olanzepine and talked to a nurse. I am still upset from yesterday when I was restrained and one of the nurses said "she's only behaving like this so she can have an injection".  I am so upset by that. An injection would have been the last thing I wanted. I wasn't even offered oral medication. I take it from this that they think I am doing this deliberately. But the reality is that I'm scared out of my wits to the point where I became so agitated that I tried to leave. I was so frightened and to hear that they think I'm doing it for attention makes me sick to my stomach.

I don't even know what to do anymore. I feel so alone here. And I've already been accused of being a pathetic liar by one of the nurses. I just feel like I'm just going to get worse here. They want to get me transferred to eastbourne. Not because it's my local hospital but because they think I'm lying about everything.

I have to stop writing now because I'm too upset.

Confusion and frustration

Just woken up. At 6:50pm. Got given another injection of something. I tried to leave and they restrained me. They held me down on the floor in uncomfortable positions. One of the nurses said "she's only doing this to get an injection". I was so scared. They never even offered me oral medication either.  Then I slept for ages.

I've been put on a section 3 from my CTO because I saw the social worker today. She actually listened to me. I felt like she could help. But in reality she couldn't do anything. She just filled in the paperwork and left.

I am 100% sure that the staff here do not believe me or the distress I'm in. I am so upset that they haven't made an effort to try to help me. I ask them for help and they ask what do I want. All I want is help in coping with being tortured. If I knew what help I needed I would bloody ask for it. Never the less, I have appealed against my section. It will be six weeks until a tribunal comes up. Six weeks of being stuck in here with people who say I'm lying all the time.

An few examples of them not believing me:
They said I had been issued with a notice of recall. I hadn't. They called me a liar. They then told me I had been offered it but had refused it. And then they threw in another liar. Truth is, I demanded a copy of this information and when I saw it it was obvious I had never seen it before in my life.
I was told I needed a blood test. I said no. They said why. I said because I had one yesterday. They didn't believe me and spent the next five minutes with "you really need this blood test". Eventually I showed them the sticky marks from the plaster and the puncture wound.

If the don't believe these things then how will they believe anything else? I don't understand why they think I am not telling the truth because I have nothing to gain from lying to them.

In other news, after the blood test fiasco they have sent the results off and they are due back in the immediate future (ie next 10 or so minutes). I have been told that a duty doctor will come and see me. I'm not sure exactly what they want but there might be a slight chance of me starting clozapine tonight. Who knows.

Help! I need somebody!

The title is in reference to the Beatles song. It's in my head so I thought it would be appropriate to use it bearing in mind the direction of this post.

Basically I don't know what to do or who to turn to. I feel like I am being tortured, overwhelmed by thoughts, voices and fear. But I don't know how to convey how bad it is to the staff here. It's like they listen but don't want to help. They don't know the full story and they don't know the intensity of what I'm going through. How the hell do I tell them. I don't even feel able to go up and talk to the staff. I went and asked someone five minutes ago but they are currently doing medication so they will see me after (so they say).  If they don't come, I probably won't feel able to go and ask again. I just don't trust anyone.

A nurse yesterday said if I don't talk to them they can't help me. I guess that's true but it's hard. I'm not worthy of their time.

I had a bath and washed my hair today and got some clean clothes.

Past Midnight Post

It's currently 1:35am and I am still not asleep. So far today I have taken 25mg olanzepine and 5mg lorazepam, both over their recommended does by 25%.

So why, in all that's cute and fluffy, am I still awake?  Grrr bloody insomnia. But a lot of it is me feeling so scared that I can't sleep but also when I try to relax it feels like there are bedbugs crawling all over me. When I turn on the light and look, there's nothing there. By this point I'm in a drug induced semi coma all that's keeping me awake are my thoughts and this skin crawling sensation.
My eyes are burning with desire for sleep.

I guess I'm not going to be able to sleep whilst on here so if you don't mind I'm going to take a break.

It's coming to the night of my second day here. The bf visited with his family and brought much needed supplies. I haven't eaten since Monday. I'm too scared to in case the food has toxins in it. I only take sips of the water in case they are contaminating that too.

I have spoken with one if the nurses on the night shift with the bf present and apparently I have been "recalled". The team here needs to contact the team in eastbourne to decide whether they want to let the CTO lapse or they could revoke it (which would mean going onto a section 3). I am being "held" for 72 hours from yesterday and the teams have the remaining time to decide to revoke or let it lapse. If they decide to let it lapse, I can walk out of here.

So far only 2 staff members have offered me any chance to talk. One, this morning, we talked for five minutes and then she promised to come back later after she had been called away. She never came back. The nurse who is on the night shift has said she will talk to me after she has finished the medications. We will see if that happens. However she does seem really nice and that she cares.

I can't really cope with this right now. I just want to be at home. I'm dreading that ill be sent back to eastbourne dop because last time I was there they neglected and psychologically abused me.

Post Number One

This is my first post on this blog. I decided I needed a space to write about my experiences and I have a strange thing about writing in diaries.

I suppose a good way to start is to describe the situation now. Well, I'm Alice, I'm almost 24 and will be getting married next month. Oh another thing; I have schizoaffective disorder and I'm currently in hospital. Things are not good.

The bf (soon to be husband) had phoned the community mental health team who told us to go to A&E. A few people at this hospital have said that I went voluntarily to A&E but the actual truth is I didn't want to go there. We arrived at 6pm and finally got out at 3am. That's when the journey to Worthing began. There were no beds anywhere else. I saw loads of doctors and was initially on eyesight observations. During the night, the nurse who was supposed to be watching me fell asleep.

I came in as a voluntary patient, even though I'm subject to a community treatment order. So I thought, at 2pm yesterday afternoon that I would be allowed to leave seeing as they can't detain me. But they said they could. I don't believe they can but they still restrained me and jabbed me with something. I don't know what medicine they gave me but I slept pretty much from 3pm-6am this morning. So I'm guessing it was olanzepine or something.

This morning I woke up and not much had changed. The voices are terrible, I am so scared, I feel like my life is in danger. I've been crying all morning really. I've had 10mg olanzepine and 2mg lorazepam literally 30 minutes ago. This is to add to the 5mg olanzepine and 1mg lorazepam that I had earlier. So chances are ill be in a coma later.

I'm too scared to eat the food here and I'm happy that the nurses aren't pushing me to.

I have no idea what my legal status is in that I got detained under section 5.4 yesterday and no one has mentioned it today. So am I still informal on a community treatment order or am I actually detained. I don't understand my legal rights :-(


Story: to be continued