Just as I am

Moving Forward

2013-03-07T11:56:00.001+00:00

I know it has been a long time since I last blogged but I figure I would rather wait until I had something worth saying rather than speaking for the sake of speaking. So now I feel like I have stuff to say, things are a-happening, things are moving forward at quite a rate of knots.
Firstly I am now fully discharged from the hospital and the home treatment team which feels great. Freedom I think can only be experienced when you have been on the other side too. Not to say that my experience of hospital was bad or that I didn't want to be there at the time. But I feel better now than I have in months, and maybe that is partly responsible for why I have been a bit neglectful of my blog. I have just been so busy doing other things. I had been attending the Clozapine clinic every tuesday and returning for my prescription every friday. However as of last tuesday I made the decision to stop taking Clozapine, for a number of reasons. firstly it was not at a therapeutic dose, so it was having no anti psychotic effects what so ever. Secondly the weekly blood tests were a bit of a pain in the ass, it is just such a tie and a bit of a burden. Yet that wasn't the reason I stopped taking it, I did so on the advise of the clinic and of my CPN. Which is great because it also means I can stop taking the two other medications I was taking to combat the side affects of the Clozapine. So now I am down to four types of medication a day: pregabalin- which is an anti anxiety med. Nitrazepam- which helps me to sleep. Amisulpride- which is the anti psychotic drug they put me on in hospital instead of Clozapine and it seems to be doing the job. And lastly on discharge from the hospital they started me on Lithium, which I can only really say good things about. At present I am on 1000mg a day which is combating the ups and downs I have and it seems to be doing the trick. Even if the tablets do taste vile! The only side affect I seem to have from it is I have a slight intermittent tremor in my hands and legs. but nothing I cant live with. So the medication side of things seems to be well in hand and under control.
Recently with my CPN we have been working through the Guided Formulation, which is a precursor to therapy to try and work out which line to try and go down and I have the last week of that next wednesday. We are thinking that it will most likely be CAT Therapy that we choose to try as opposed to CBT. If any of you that read this have any experiences of either please do get in touch and tell me about them.
At the moment I am trying to sort out my flat a bit more, I am still decorating and doing it bit by bit at my own pace, but when you live alone yours is the only pace that matters so it is good. My latest project is alphabetizing my CD collection, not a small feat on the ground there is like 500 of them. But I am doing it bit by bit and just taking it slow. I find that ordering stuff makes my mind feel tidy and ordered too. So overall this is definitely one of my more positive blogs as I am feeling great and things are all in order and under control for once. Nothing feels out of hand or out of my control (which is something I really hate) so it's all good really. Hope you are all just as good too!

Home sweet home

2013-01-31T16:12:00.000+00:00

So things are progressing, as of monday I have been 'on leave' from hospital and I am back in my flat and have thoroughly re-nested. I am so glad to be back, I was worried about going home before it actually happened and it has taken a bit of re adjustment since I left the ward. In that everything is so regimented and you have to do things at a certain time or you can't do them. For example you eat when food is served not when you necessarily want to.

Next tuesday I have my review with the ward psychiatrist where hopefully I will be discharged as I have been put on permanent leave anyway. However there is still a lot to discuss at the meeting. Firstly there is the prospect of going onto a mood stabilizer, which hopefully I will be able to do without needing anymore time on the ward. Secondly and perhaps more importantly there is the issue of my taking clozapine. The issue is not that I am on it, I am glad I am but the dose I am currently on is neither here nor there, in that it is not a therapeutic dose because it is too low, so whether it gets raised or stopped is very much on the agenda. I must admit I will feel a bit cheated if it is stopped because that is why I went into hospital in the first place. Not that it hasn't had other benefits but that is not the point. The reason why it wasn't raised while I was on the ward is that I suffer from 'white coat syndrome.' This is where whenever you go within ten yards of a blood pressure machine or pulse reader it goes through the roof. The consultant now lets me take my own pulse and when I do it it has always been fine. So hopefully I can continue the titration of the clozapine in the community as it were, because any adverse reactions I would have to it, I would have had on the ward while I was taking it there. The only two side affects it has had on me are nausea and hypersalivation which is the posh word for severe dribbling in your sleep. However both of these have been sorted by other tablets so there is no issue really.

On a totally different note I have just finished reading The Perks of Being a Wallflower by Stephen Chbosky. And it is fantastic and I would thoroughly recommend it to anyone that wants to loose themselves in the life of albeit a fictional character for a while. However it is not the fact that the book is amazing that has buoyed me so much, it is the fact that I now have the concentration to read it at all (something I have been lacking for weeks now). And I have, cover to cover and it may sound petty but I feel a massive sense of achievement. Which along side the moving back home has been another big 'win' for me. So it certainly feels like things are moving forward and quite quickly at the moment as it goes.

Day 17- snowflakes

2013-01-23T10:20:00.000+00:00

Well so much has changed in such a short period of time. Yesterday I was seen by the ward consultant and a new plan has been drawn up. What ios great is the amount of control and say I have in my own treatment here. We are restarting Clozapine but this time with another anti psychotic along side it called Amisulpride, which is new to me but the combination of the two should minimise my side affects from both of them. At the same time I am stopping some of my old medications as the affects of it have been minimal. For the first time in a while. I feel on top of things and in control of my treatment. Like I said to the doctor, I now feel like I am moving forward. I just don't know there the destination is.
It is the little things that make a difference and give you independance in a place like this. For example the doctor has put me in charge of doing my own pulse and blood pressure. When you are in an institution like this is important to cling onto the things that keep you independant otherwise you run the risk of getting into the habit of having everything done for you and loosing the level of independance you had before you went in.
Last night I sat and watched the snow fall and it was the most calming thing I have done apart from writing since I have been here. But it reminded me a lot of the fact we are fenced in and kept within these four walls. It felt like the snow that fell inside the compound was just as 'imprisoned' as we are and the snow that fell outside I saw as being really free. That probably sounds like a load of rubbish but I was just struck by the the sheer randomness of the snow falling inside the compound and the snnow that fell outside of it. In the same way that we are inside the compound mostly by chance and it was just luck that we fell here rather than being those lucky flakes that are free to fall where ever they want to.

If at first you don't succeed...

2013-01-19T09:35:00.001+00:00

Sorry I haven't written on here in the past few days but things have been more than a little stressful. I have had to stop taking the clozapine as it increased my pulse too much. So three times we started from scratch with it but each time it showed it was putting too much strain on my heart. So we are back to the drawing board and, it being a weekend i cannot see the doctor till Monday at the earliest. This has made my head go all over the place and I am bitterly disappointed that it hasn't worked. But I guess I have just got to hope that there is something out there that will. On the plus side I have met some really lovely people who are, for what ever reason, in a much worse situation than me who keep smiling through everything so that's what I intend to do. Although it does feel like a bit of a wasted two weeks the good thing is that I feel and know that the nurses and doctors tried every way to make it work. So what happens next I do not know. I may be discharged on Monday after seeing the doc or she might want to monitor me on the new drug they chose for me. I also hope that the failure of clozapine will speed up the process of being put on something to balance out my moods.

I have no intention of leaving here without a new plan drawn up, things will get better, its just going to take longer and be different to the way I thought it would happen.

Day 6

2013-01-12T20:44:00.001+00:00

Its day six already. Can't believe it has gone so quickly but at the same time the days feel really slow at times. My clozapine level is slowly going up. No real side effects yet apart from a touch of nausea, so that is good. However I am feeling pretty fragile at the moment, I feel like I am close to the tipping point and it won't take much to tip the balance. I hope a decent nights sleep might help but I haven't had one of those in a few days now. Instead I have been having the weirdest auditory and visual hallucinations I have ever had. Which worries me a quite a lot as I properly loose touch with where I am and who I am. However as quickly as I slip into one, it then ends just as suddenly and I come round not remembering I am in hospital. It is scary. But the good thing is that so far they have not been too scary or frightening. They just seem to happen. I hate loosing my sense of reality and my ability to control what I say but in those moments as I come round, I can't.
I went out off the ward for the first time today and I had a great day out. It felt good to get out for a bit but it tired me out a lot because I was a wobbly wreck for a while after I got back on to the ward. But it was so worth it just to get out. Going out is very important if or when you can because in a place like this it easy to get wrapped up in the safety and institutional-ness of it here. Everything is done for you, so getting out is vital to remind me of the real world.

Day 4

2013-01-10T19:37:00.001+00:00

So today it started (finally). Barely slept a wink because of a combination nervousness and excitement. Its funny really; because of the dangers of it I thought it would look different or feel different but in reality it is, and it looks like any other pill, nothing at all makes it look like the scary tablet that I have heard so much about. Its going to be a long process to get it to the right dose because today I took 12.5mg and the therapeutic level starts at 300mg. Baring that in mind there is very little to tell you about side affects because the dose is too low to cause any obvious ones, apparently.
Saying that I have slept or been dozing most of the day and I have been having some really wacky dreams too, the nurse said that that maybe because of the cocktail of drugs I take. Tomorrow I will be seeing the ward psychiatrist who I have met before and she is brilliant. So tomorrow what with it being a higher dose and with meeting the doctor there should be lots to say.
It is good that as each day goes along I feel more comfortable here which is good. And slowly me and the other patients are getting less and less wary of each other which is also good. Plus each day seems to go by quicker and quicker so it makes stuff fly by so fast I don't have time to sit or worry about things too much. I am just pulled along by a gentle current and it is doing me good I think.

Day 2

2013-01-08T17:09:00.001+00:00

Well its sort of all quiet on the western front at the moment. So there isn't much to share with you. My clozapine will arrive tomorrow so at some point I will have my first dose. With that comes hourly obs for a while to make sure I am not reacting to it or visa versa. Despite it being quite loud here last night I slept brilliantly and I think now I am over the shock of it all I am finding this whole place and its inhabitants a lot less scary. Too be honest now I just want to start treatment I am bored of doing not very much and I want to feel like I am doing something to fight what is going on in my head. But I have been told that it will certainly start tomorrow so bring it on.

Day 1

2013-01-06T20:45:00.001+00:00

So. It is now the beginning of January and as promised I had the phone call about going into hospital last Thursday and I have just arrived on the ward. It was a hairy moment when I thought neither my phone or my internet had signal but where there is a will there is a way. It is my plan to try and keep this updated with what is going on as much as possible. So starting from the very beginning, I arrived and instantly had my bags taken from me to be searched, however this time around they have let me keep my laces in my shoes and my belt on. Last time they didn't so that is good. I have already had my first set of bloods taken and my bp done etc. All seems well on that front. My room is bare but sort of comfy. A bed and cupboards (minus the doors) but also a chair made of foam which is nice. And a desk to sit at. Again a pleasant surprise. The staff are all really friendly and nice so far. I am now just waiting to see the doctor.
As comfortable and as friendly as they do try and make it here I had forgot what the environment is like from the inside. I have my own space and can keep my room door locked but it is quite a scary place. It is when you look at the details and see the plastic mirror and the (very subtly) barred windows that this is hit home. More so due to the fact that compared to most in here I am relatively well and I am here of my own choosing. In that it feels very intimidating and quite isolating. The flip side is I was prepared for that and I like my own company so it isn't too bad at the moment. However I have only been here like an hour!
On the whole I have had a rough feeling couple of weeks so I am not sorry I am here at all to be honest. I know this is the first step I need to take to hopefully feeling a lot better. Over the past few days it has dawned on me even more about the potential side affects of clozapine they seem a lot more real now I am here and about to start taking it. But like most things we will have to wait and see. But I will keep this up to date with any and all of them. And how the drug itself is making me feel. Hopefully the first dose will be tonight if not it will be when they wake me up at like 7.30 in the morning (for some reason this is the standard wake up time in here) which will no doubt be a shock to the system let me tell you!!

Enormity of decisions

2012-12-23T21:25:00.003+00:00

So there has been quite a large break since my last blog entry. I have had so much stuff to try and get my head around that I haven't felt able to sit and blog. But at last I think I can type the words I want to say. Once you are diagnosed I sort of expected to find nothing else as momentous as actually being diagnosed, but since then my head has been filled with the repercussions of that diagnosis. The biggest one is that I am to be put on a drug called Clozapine, which seems to be an ass kicking anti psychotic drug and has a very high success rate. However the problem comes in the form of the side effects.
Tremors I can live with, sedation I could probably do with anyway. But there are two side effects that worry me. Firstly is the more medically severe side effect, it causes a drop in white blood cells in some people making them prone to infection and the like. The second one, is not really medical but sort of scares me more, and that is bed wetting. This I am not sure I can cope with, if it happens. It is easy for people to over look just how a side effect like that may affect your mood and it is something that people find hard to deal with. It is knowing the little details and understanding and accepting them which show a true supporter or friend. When I think about the possibility of wetting the bed I feel very ashamed and it hasn't even happened yet!!!
On the flip side due to the potency of Clozapine until you reach your comfortable dose you have to stay as an in patient on a psychiatric ward to monitor side affects and the like. Hopefully I will go in and start on Clozapine at the beginning of january. I only found out that you have to go in as an in patient last week, but it is not bothering me, I am going in because I am well enough to choose my own treatment, I am not going in because I am too ill to live by myself. So I am going into it with a very positive head on, and to be honest, while they fiddle with my drugs, it is the safest place to be as it can make me go a little funny. I am very nervous about the Clozapine thing because it is a real commitment, a blood test a week for 18 weeks then a test every two weeks for a year. This in itself doesn't scare me, blood is blood. what sort of scares me is the fact that the tests are needed in the first place. This drug obviously has its dangers and it is only now I have agreed to it that the threat seems real. Or at the very least possible.
People worry when they hear someone has a mental health problem; that they suffer from something every day. But I don't think enough attention or thought is given to the fact that half of the way a person is may actually be due to side effects not the actual illness. Mostly we live with the side affects because the pro's outweigh the con's. But it can be the side affects that effect the way a person is, just as much as the illness can. If someone is feeling sheepish or worried, spare a thought to them, not only because they live with a illness but perhaps the drugs that help them can also be the cause of embarrassment and problems within themselves.

A person is never just fighting an illness, but fighting an illness and the side effects of the drugs. Most of the time this is straight forward and there may not be many side effects to fight but I guess its just another thing for me as a sufferer and other sufferers to worry about, sometimes this is easy to deal with, sometimes it is not.

Why can't I say it?

2012-12-05T12:00:00.002+00:00

So yeah, I cant say it to people. Every time I try to say Schizophrenia to someone the word gets stuck in my mouth. I can type it but actually saying the word scares the hell out of me. I guess my fear is sort of three fold; I fear people reactions, I fear my reaction to people reactions and whenever I try and say it my ears ring with laughter and the scars on my arms (which spell out HAHA on each arm) prickle and the scars turn red, or at least they do in my mind. I just can't get over the feeling of shame, I don't know why I feel it but I do. This makes me angry and upset with myself. I am so very confused about it all my brain feels like soup and thinking straight takes more effort than ever.
I feel bad because at the moment because I don't feel like much of a conversationalist so, one of two things happens. Either I don't really talk to people and then I feel guilty for being very unresponsive. But the thing is, I want to talk but I no longer have the confidence in what comes out of my mouth; that it will be polite and positive, in the right order and on topic. My mouth answers automatically before my brain can say what I really think or want to say. The other thing that happens is that I can't stop talking and I spill my guts on a 'whatever is in my head I will say it' sort of way and I can never tell when it is about to happen it is sort of random. Luckily I talked at a old friend of mine so it was sort of ok when it happened the other day and I didn't stop for like 15 minutes, but on other days I won't say 15 minutes worth of words all day.
I am the sort of person who likes and, to an extent, needs order and control of and in my life and at the moment I feel on a lot of levels I feel very out of control and my head is not as ordered and methodical as it normally is. It makes me furious. For example this blogs has been 4 days in the making as I simply cannot sit down and do anything. On top of that I have pretty much no motivation to do anything. I want to fight and re take some sort of control of my life but at the moment I just can't. Hopefully once the new medication starts it may make me feel a little bit more like me again. Its like I am detached from myself, I still function but it feels like I am looking down on my life rather than living it, if that makes any sense. It's almost complete detachment from myself and my being. Like I am a puppet and some else is pulling the strings while I watch.

My symptoms are my symptoms and I can deal with that. But my fear of saying the word scares me. I think that the word Schizophrenia has so many connotations Many, if not most of them are untrue, but the stigma remains. It is seemingly so misunderstood by people that conclusions are jumped to because that is all they know to do. I think this is because only people who do something wrong and have schizophrenia are talked about in the press.

Genesis

2012-11-29T14:20:00.000+00:00

Two days ago I was diagnosed with having Schizophrenia. Something I know nothing about, apart from my own experiences of it. I have never encountered it before now. So it is something I have to learn about on the fly because now it is happening to me I need to know about it, so I must learn, and fast. As will the people around me, I am very lucky to have an amazingly supportive family and very understanding friends.

This really isn't easy for me, not that I expect it to be. I find talking to people about my mental health very helpful, but it is never easy. The diagnosis was not 100% unexpected. However I did not expect to feel this scared by it. The gravity of the situation I now find myself in is very overwhelming. I guess it is the thought that this is for life, in some form or another, that scares me the most. But I have been assured that there are some great medications and treatments out there, so it can be controlled. But whether it can ever be beaten remains unsure to me.

However I plan to fight this with every cell in my body and after the meeting I had with my Psychiatrist and Community Psychiatric Nurse where I got the diagnosis, we also planned a two pronged strategy for dealing with it. The first being with medication. I cannot say exactly what at the moment as it has not been agreed or confirmed but when I do have them prescribed I will post them on here too. The second prong is intensive psychological Cognitive Analytical Therapy. But I cant start that until my medication is sorted and I am a bit more stable.

Schizophrenia is so varying that what one person experiences can be almost totally different, in the way symptoms present themselves, to another person. So I can only ever tell you what mine are, not what everyone else experiences. some of my symptoms come and go but I am constantly extremely paranoid and anxious, to a debilitating level at times. More often then not they dictate what I do or don't do. I have visual and auditory hallucinations. I hear a male voice, who is very derogatory towards me and on a number of occasions at night he has come into my room and tried to attack me. I also often see things in the shadows or in the corners of my eyes that is not really there. But the fact is, when I am not in control, I think the things are there and the voices are both very real to me. Even though I know they are not.
The consultant also said that I have some sort of mood depressive mood disorder as I get very depressed at times, and life looks very bleak. Whilst at other times I feel more OK. So as well as new anti-psychotic medication he will also be putting me on some sort of mood stabilizer.

So that is me pretty much. It is not in control of my life, I would never have it that way. But I am trying to come to terms with the fact it will be a factor in my life now. Apart from all of the above I am a pretty normal 21 year old. However at the moment it doesn't really feel that way.