S K Y E


THE SECRET SCHIZOPHRENIC

The meds dilemma

This post is to do with ‘the meds dilemma’, by which I mean all the dilemmas that come with being on psychiatric medicine, especially anti-psychotics. There a lot of things that we as patients struggle with, which I’m sure directly affects others like friends and family, but especially the patient.

Probably one of the biggest things is knowingly taking medication that causes side effects. This is such a difficult issue. For example, I myself have experienced all sorts including: weight gain, tiredness, muscle stiffness, hand shaking, bad hand co-ordination, drooling, akithisia, lethargy, concentration issues, memory issues, constipation and increased hunger. Who would want that? Who would knowingly continue medication with such awful effects? Why should you have to put up with that? Well, to keep well mentally.

The horrible dilemma is that even though you may have many side effects, you may actually have been improved mentally. So the dilemma is: do you stay on something that is frustrating you physically, or risk going back to a state where you could end up frightened and confused, or even go back to hospital? 

Every time you start a new medication, there is always that frightened sense of: what will this do to me? What side effects will I get? If you are already mentally unstable, the immediate side effects will put you off medication even more. If it is felt that you really need the medication mentally by a medical professional, you may not know this anyway due to lack of insight. Therefore there is double the dilemma. How do you persuade a patient to take something when they may be tired, hungry and irritable from what you just gave them? 

For everyone who has carried on with treatment despite this, and become well mentally, there is still the issue over whether you wish to continue. The guidelines say that anti-psychotics should be used for at least 2 years with one episode, and 5 years for more than one episode (or so this is what I have been told by psychiatrists). At the moment I am 2 and a half years into these 5 years, with 3 years before that on other anti-psychotics. I’m not sure how much more I can take of the weight gain, for example. I’m worried I’m storing up major health problems, I’ve heard I could die earlier and I’ve heard it’s shrinking my brain. I asked my psychiatrist about these and she dispelled them. However, I’m not sure I trust her. Do we really know enough about these medications to be sure? How do I know I won’t die earlier.

The thing is, if I reduce my medication I risk a relapse; but if I stay on it I risk becoming morbidly obese. Can you see the dilemma? 

So next time you are frustrated with someone who is dithering over their medication, know this: the side effects suck and we just don’t know what that is doing long term. 

I am not saying I am anti-medication, by the way. I myself am on clozapine and am not planning on going cold turkey, ever. Nor am I going to reduce myself (I’ve been sectioned for this before a few years ago). But the side effects are getting more and more problematic and my dilemma grows by the day.

Take care, Skye. 

Anonymous said: Hi there! I'm doing an Extended Project Qualification in addition to my A levels and the title of my project is: 'How is mental illness portrayed through literature throughout the years?' and i was wondering if I would be able to use your blog as part of my research? Mainly analysis of your blog name 'the secret schizophrenic' and what you think about the way mental illness is treated? it would be much appriciated as i find your blogs inspiring to those who do suffer, like yourself. Thankyou.

Hi there. Yes of course, as long as you credit me for any quotes you take that is fine. So flattered you find my blog inspiring! :) Good luck with your qualification!

How I cope with work

So if you’ve been following me on twitter and reading my tweets, you’ll know now that I recently entered full time employment. This has been a major achievement for me in a number of ways and I wanted to share how I cope with my job despite some of the issues I still face. I hope this information might be of help for someone, or just an interesting read.

Firstly, when I was searching for a job, I knew that I wanted something that was going to be non-stressful. I wanted a job where I could go to work and then come home and not bring work home with me. As I also recently was a student, I knew that every evening and every weekend spent filled with studies was not doing me any good – it was making me stressed and tired which is a deadly combination for my mental health. Not so long ago, just before I quit being a student, I had started to become paranoid again and was experiencing suspicious beliefs towards some of my tutors there. I knew that this could not continue and the fact that I always have this pattern when I’m stressed and tired made me realise that I cannot have that in my life if I want to live as ‘normally’ as possible and not be scared or frightened about anything. So therefore my job search was for something that I knew I’d be able to do. I eventually found the job I am doing now, which I will not name for anonymity reasons, but it is an office job. It’s not very well paid, nor is it especially interesting, but one I’m trying to get competent at and stick at for a while. I feel like if I can just stick at this for a bit, then I can prove to myself that I am capable of something in life. Of course, this isn’t my dream job nor do I want to do this for a long time, but it’s something.

So how do I keep myself going? There are several things I do to keep on top of myself. Firstly, I get enough rest. As I just mentioned, tiredness for me is very bad for my mental health. Obviously in the mornings I have to be up in time to get to work for 9am, something I never thought I would accomplish. But I’ve proved myself wrong. I take my tablets really early the night before and set more than several alarms on my phone, to make sure that I give myself the best chance for the next morning. I’ve been managing it. Unfortunately some days I am so unbelievably tired in the mornings and have to fight to stay awake, but mainly I manage. The main problem concerning the meds is that they seem to dull my senses, so sometimes I am writing down something someone has asked me to do, but I forget halfway through writing what they’ve just told me. This can be embarrassing because it looks like I’m a bit stupid. I have problems with memory every day. Thankfully my concentration is okay right now, I think this might be out of fear that I don’t want to look like I’m slacking.

Something else that I do is talk to someone every night about how I am feeling. This is mainly my parents or sibling. The problem with me is that I have constant anxiety about everything. I used to have an anxiety disorder, diagnosed when I was 17, and I’m convinced I still have one but I have learnt to cope with it better now. So obviously I have problems with worries about work: things like worrying what people think of me, whether I’m doing okay, whether I’m going to get sacked. I also have problems switching off what I’ve left in the day, things I might not have done quite right or mistakes I’ve made. I obsess over them. This is really not helpful, but I really am trying to talk about things as much as I can to try and rationalise them. I’m quite lucky because at the moment I’m not paranoid about anything, in an ill way. All my concerns are based in reality and I’m hoping it will stay that way. Something else that my parents have helped me with is just to know that if I do ever get sacked or have to leave, it’s really not the end of the world. Yes, it might be humiliating, but at the end of the day no one died and it’s not that much of an issue. I could even leave the job out of my CV if I wanted.

At weekends, I totally switch off. I allow myself massive lie in’s so that I can catch up on the rest I’ve lost that week. I make sure that I remember my medication too, because I know it’s keeping me on that level that I need to function day by day. Some time in the future I’ll probably try reducing again and hopefully that time I won’t relapse. But it’s something that I’ll have to see at the time. For now, I need my medication to keep me this way.

Something else that’s been interesting is that I decided to declare my diagnosis on my health form. I decided in the end it was best to just come clean and after all, why should I be ashamed of an illness that isn’t my fault? Of course, my boss picked this up and we had a short meeting about it. He seemed more intrigued than anything. I was rather nervous about him knowing and whether he’d treat me any differently, but since then he’s been treating me exactly the same. I’ve asking him not to tell anyone else at work and he said that he won’t, which again is really great. I haven’t ‘come out’ to anyone else at work and for now that’s the way it will stay. I like the thought of people finding out in years to come and proving them wrong that it’s not dangerous to work with someone with a diagnosis of schizophrenia. For me, I feel like I’m breaking stigma day by day without anyone actually realising except me.

And that’s basically all I can say right now. I might do some more posts in the future once I’ve been in employment a lot longer. But I hope that might have been a help or just an interesting read.

Take care, Skye. 

Paste what you’ve cut

This post concerns the cuts that appear to be taking place in the UK, concerning mental health. I’ve heard that psychiatric wards are being closed, the Child and Adolescent Mental Health service is suffering, and Early Intervention Teams also experiencing a lack of funding. This really is a huge problem.

Not only have we had a problem with huge waiting lists for things like therapy or support, but now the support we need to receive is even less likely to reach all of us. Just because someone’s mental health issues aren’t as severe as the next person, doesn’t mean they should be less likely to receive treatment. I was very lucky when I was referred to the Early Intervention Team as it was deemed necessary for me, and I received help almost immediately, but I have always felt for the people who waited so much longer than me, just because they weren’t classed as severe.

Of course, if someone is very acutely unwell, of course they should receive treatment ASAP. But it seems unfair that those who are classed as doing okay, who do suffer day to day, but are functioning, should have to wait such a long time to receive help.

Unfortunately with funding being cut, this is only going to get worse. But for me the bigger picture is that mental health just isn’t treated as seriously as it should be. 1 in 4 people have a mental health problem. 1 in 4. That’s a very high amount of people who will at some point in their lives need to receive some sort of intervention. Mental health services are so necessary. So why the cuts? Would they ever cut something to do with physical health? That isn’t a rheotrical question by the way, but something that I really wonder.

Of course, returning to the topic of psychiatric wards, being on one of those wards can be absolutely terrifying, traumatising and claustrophobic. But it also provides somewhere for people to go when they are at absolute rock bottom. Whilst a lot of people resent this treatment, a lot of people find it a huge relief. I know I met people on the ward who had severe depression, and to have their responsibilities day-to-day like cooking and cleaning taken away, was such a huge weight off their shoulders. They could relax and take time to focus on themselves and recover. For others without insight, a psychiatric ward can be the best place to keep someone safe. When I was having thoughts that endangered myself, the ward prevented me from carrying out what I thought was correct at the time but actually extremely delusional.

Here is a suggestion from someone who has used mental health services: why not paste what you’ve cut? By that I mean, with the money you save on these reductions to services, please put it towards bettering what is already there. We need so much more training for urgent care services and even better training for nurses and support workers. If we’re reducing the amount of wards, please increase, or at least encourage, mental health nurses to be very good at their job. 

If we’re going to reduce help, increase the competence of what is already there. If you’re going to cut; then paste.

Take care, Skye.

Anonymous said: Hi! My name is Erica and I'm doing an English research paper on schizophrenia and I would love to know more about it. I would love to interview you online for my paper from a perspective of someone who actually has it. It would give my classmates a much better understanding than what I could ever do. Please let me know if this is a possibility. Thanks so much! :)

Hiya :) give me your email address and I’ll be in touch.

Anonymous said: Did you declare your schizophrenia to the DVLA for your driving licence? If so, how were they? Many thanks.

I’m afraid I can’t help you with this, sorry! 

How to cope with pricks

Hello!

So the title may not be as it seems… thought I’d add a little humour to the title! Anyway… this post is about how to cope if you have to have regular injections or blood tests so *TRIGGER WARNING*. I used to be on an anti-psychotic depot and currently have to have regular blood tests, so I thought I’d share my tips on how to get through them if you’re new to them. So… without further adieu…

1. Think about time

Just think… this injection or blood test will not take more than a minute of your time. Think about that in relation to how much other time you have without that pain. You can work it out if you like, even if it’s just in relation to your day: you will have 23 hours and 59 minutes of no pain and only 1 minute of pain. If you’re feeling mathematical you could work out the time in between each prick. So if your depot is every 2 weeks… then you could work that out (I’m rubbish at maths so won’t try to!). Think about the difference between no pain and pain in terms of time. No pain prevails. So imagine how little of your time you’ll be in pain for and you have the rest of the time to feel normal and comfotable. You have all that time ‘off’.

2. Don’t look!

This is easy if you’re having your depot in your bum, but if you’re opting for it in your arm or you’re having a blood test then it’s perfectly possible to watch the needle go in. I personally find not looking is better - you can’t see the length of the needle or it going in. 

3. Relax

This is easier said than done if you’re needle-phobic, you need to really concentrate on this feature. If you’re having a depot in your bum, I found lying down on my front the most relaxing. When it comes to blood tests, I wouldn’t bother with the thing they get you to squeeze. When the needle goes in, relax and try not to tense. The more you tense, the more painful it will be. Hum to yourself to keep yourself relaxed if you like and try and…

4. Think about other things

Again, easier said than done. If you want to this could be through talking. Talk to your phlebotimist or injector. Or you could even take some music to listen to. Music is good because you tend to concetrate on the words or notes and lose time more easily.

5. Hold a hand

Try and ask someone to come with you to your appointment and so they can hold your hand. I know I said to relax, but squeezing someone’s hand with the opposite arm should be okay and might even help. 

So that’s all my tips really, hope maybe one of them has helped. Take care, Skye.

Anonymous said: If you don't mind me asking, what medication do you take and does it help?

I take clozapine and yes, it does help an awful lot. I’d recommend it, though it has numerous irritating side effects and you have to have regular blood tests.

New Year - Well done, you’ve made it!

So it’s new years eve and I just wanted to say a massive congrats and a pat on the bag (and hugs!) to all those who thought they wouldn’t make it through this year, but did. Be very proud of yourselves. Hopefully if you’ve had a tough one, the new year can bring something better for you.

Take care with whatever you’re doing later. Skye.

Preventing “Uni Psychosis”

So I’ve heard a lot of true stories where people leave home to go to university but unfortunately experience a mental health problem. This often results in a drop-out where the person cannot cope anymore, which can in turn lead to feelings of defeat and low self-worth. Returning home from this experience can also be embarrassing as you have to explain (or lie) about why you have dropped out. This happened to me as I had to drop out of the first uni due to my ongoing psychosis and, after a few weeks in hospital, a feeling that I could not cope with catching up and uni life in general. 

In a way I was lucky because I already had psychosis before I went to university and so had a little bit of support in place and it was known to the local mental health team that I had a mental health problem. For some people however, something like a psychosis will begin, unbeknown to anyone or even the person suffering. Psychosis can mean that you are unaware that your thoughts, voices etc. are not real. As a result of this, the psychosis is left to linger until it is too late and the person is full-blown psychotic and in desparate need of some support. This is often a time when people will end up in hospital or doing something highly dangerous, or generally putting themselves (or occasionally others) at risk.

This is a great shame. Having a mental health problem to begin with can leave you with feelings of despair and isolation. Gaining something like a degree could be a big help for self-esteem and feelings of achievement; so when you cannot achieve this it makes you feel even worse. I can only imagine that developing psychosis at university is a frightening and confusing experience. As you are practically alone, besides flatmates, there is no one to notice your illness. I was at home when my psychosis began so I had some support (even if I was misunderstood) when I was diagnosed. Images of people huddled in their rooms, paranoid and afraid to leave their flat are images I consider. How can we prevent this from happening?

Unversities, in my opinion, could do more. If you are ‘lucky’ enough to join univeristy already declaring a mental health problem, then it is likely you will have some support from student services. However, if you develop mental health problems in your first term, you may either not recognise your illness or be too embarrassed to ask for help. This leaves the illness lingering to get worse. I know that in student services there are leaflets on all sorts of problems, from anxiety to eating disorders, but if you haven’t set foot in student services, how are you meant to gain this advice? Often there will be emails circulated about student support and advice sessions, which is fair enough. But I’m really not sure that there is enough awareness for students. 

I’m not saying that I know the answer to this problem, but I do know that I think it is a bigger issue than people think. It’s so horrible for a young person to leave home, full of optimism and excitement, only to crash into a dark place and have to leave, feeling defeated and unhappy. How can we stop young people having to go through this? Should we all be assigned some sort of mentor, be it professional or by an older student? Should we be encouraged to keep a check on ourselves? Should we be made more aware that things like counselling do not make us weak, but could in fact help enormously?

I don’t know the answer to this issue, but I think it could be something that should be looked into. I want people with mental health problems to have the same chances as those without and if this means having a lot of support then so be it. I know that if I hadn’t had a mentor at my second uni, sorting out things for me when I was unwell but also when I was stable, then I might not have got through it. Students may need support, but if this gets them through their degree and having a sense of achievement then surely it is justified. But we need the awareness to begin with, or many students might not know that they can get that support.

Lets make all students aware that it’s okay to talk, no matter how small the problem. Things can snowball, and before you know it you’re sinking. Lets catch those students.

Something to think about. Take care, Skye.