S K Y E

Sorry

Very sorry I have not blogged recently. I am not feeling so good right now. When I’m in the right place again then I will.

Hope everyone reading this is okay.

Skye

Anonymous asked: At the end of your time with EIIP, is the plan to discharge you to your GP? How far away is this for you? I am being discharged to my GP in May. I feel it is outrageous. Schizophrenia is a life long condition, that needs life long care. Actually, I feel EIIP is a bit of a money saving scam.

Hello. At the moment my CPN is going to take a backseat but I will still be under the EIP. Since I am on clozapine I can’t be properly discharged until I am completely off of the drug, which might not be for another 4 years. I guess I’d be discharged back to my GP when that was the case. Tell me a bit more about what’s happening for you? 

Psychosis: isn’t it weird?

Isn’t psychosis weird? Aren’t anti-psychotics weird?

How strange that no one is entirely sure about either. 

All these ideas, creations, which you think aren’t just ideas and creations, but things that truly exist. It can excite you or frighten you, or even both. It takes up your time 24/7, you feel you must look out for new hints or clues. It starts to consume you, invade you and it can feel like it’s breaking you but it can also feel like it empowers you. It can cause you to shiver, with fear or with excitement, with the sheer magnitude of the ideas and what they could mean for you and for others. Sometimes you wish to share, other times it is a solitary mission for only you. You keep diaries, digital or written, or lists of discoveries, things to explore further. Sometimes you find others who empathise, who back up and support what you think is real. It becomes more real, more powerful. You start to act on what you think is right, rather than just keeping it in your head you turn it out into the physical, into your actions. 

And then comes the blow. People notice and whether you want to share things or not, it comes as an invasion on your personal space. People start asking questions: why, how, who, what, when? You share, or you don’t share everything. Slowly word gets around that you have ideas that are very special and individual for you.

Then come hammer-blows. People tell you that you’re wrong, that everything consuming your life is just a creation, a fictional state of mind. But you’ve thought these things for so long and they have become so deep that you don’t believe anyone who disagrees with you. You surely must be right, you’ve done research, you’ve found people who agree. 

Soon you will be asked to take medication for your thoughts. How can a speck of chemicals change my thoughts, thoughts which are real and could change the world? Why would I want to surpress such important ideas that could change the world? You might feel like you can change the world. Why would you want to be stopped?

Eventually you give in, either gently or with force. You might be locked up and forced medication or you might gradually accept it. You pop the pill. Soon your ideas might fade, you start to question their credibility. Soon you might start to wonder, what if I’m wrong? Slowly you start to change your mind. Your thoughts fade. Everything becomes quiet and peaceful and you feel freer.

But what if you were always living with that thought: what if? What if I was right? What if chemicals cover the truth? But you can’t really tell, because you don’t really know. No one really knows.

Psychosis: isn’t it weird?

Take care, Skye.

Rambling

This is a bit of a ramble… 

Been thinking lots more about the whole clozapine and physical health thing. I keep going round and round in circles over it, trying to formulate some sort of plan. The only thing I do know is that at my next blood test I will ask them to test my blood sugar and if it is at all elevated I will be asking for a medication reduction. Diabetes is for life, psychosis might not be. But last time they checked, probably about half a year ago maybe more, it was absolutely fine. I am curious to know how it is now.

I’ve been calling myself selfish for wanting to come off the medication, thinking how many people would love to be mentally well and here I am stable in mind and yet wanting to potentially reverse that. But the physical side effects frighten me. In a way I’ve learnt to live with the mental, but the physical is daunting and I feel inexperienced. The rapid weight gain worries me, I don’t want to be left obese, one of those people who gets stared at when they go out, someone whose facebook photos get tongues wagging about how much weight they’ve gained and don’t they look horrible, they used to be skinny and what happened? They must love food and scoff themselves silly. 

Weight gain can lead to diabetes… right? Am I stressing too much over the diabetes thing? Should I be more worried about other aspects of my life?

I haven’t seen my psychiatrist in a very long time, I’m not sure how long. But I will be seeing her soon. I imagine I will have a very short appointment since I’m low priority, but I’ve decided to ask her some serious questions about my medication. For starters, how long do I have to be on this medication? Thing is I just can’t imagine being on this for a few more years, let alone forever. If I’ve ballooned over a stone and a half in a year, in 5 years I will end up obese! Lifetime medication sounds horrible to me and I know it must seem like I’m moaning, but tell me who wants to be fat and lethergic all their life? Yes you might say, but you are mentally well and that’s all that matters. That could be true but physical is surely just as important. 

I had a flash-forward today. I gradually stopped clozapine, but relapsed into a severe psychosis. I ended up sectioned and dragged in by policeman to the psych ward. Once admittied I ran into the ward door, tugging it, punching it, kicking it, to try and get away from the people I thought would harm me. Catastrophising much? Yes.

What if I do have a massive relapse if I stop clozapine? I imagine myself coming off it and managing alone, getting coping mechanisms to work against my wildly creative brain. But then I imagine being mentally unwell forever, not fulfilling my dreams or getting a job or going on holiday, all the normal things a ‘normal’ person can do.

For now I still ponder. We shall see.

Take care, Skye.

in-two-minds asked: Really enjoyed the different talking therapy blog, it's very interesting.

Thank you :) I appreciate the lovely feedback I get.

To med or not to med?

I’m going to be really honest because I can’t really be honest offline. I really appreciate my anonymity at times like this. 

I’ve started to really worry about my psych med, clozapine. To be honest I’ve always worried about anti-psychotics, right from popping that first pill, olanzapine, just over 4 years ago. I remember how drowsy it made me, half an hour after taking it, and falling asleep only to wake up late the next day in a somnolent stupour. This has partly continued right up until now, varying greatly with the different types. 

I’ve always wondered, and to be honest my Mum has always pointed this out, whether these meds are toxic to my insides. It doesn’t help that people don’t fully understand how these meds work and why they work. In fact it doesn’t help knowing people don’t fully understand mental illness anyway, we have a lot to learn.

What side effects have I had from anti-psychotics? They vary, but to name a few: somnolence and extreme tiredness with a flipside of insomnia on a different one, not being able to wake up until midday, drooling, excessive weight gain, akithisia, tachycardia, hunger, lack of energy, apathy, poor memory, poor concentration, potentially a thyroid problem though it could just be me… I think that’s all of them.

It’s definitely the anti-psychotics. Before I was on them I was a slender 8 stone, could get away with eating anything I wanted and with little or no excercise. Looking back now, I regret that I didn’t make the most of this. But I wasn’t to know.

Why am I scared of clozapine? It can potentially cause life-threatening blood problems, admittedly this hasn’t happened to me. But it’s a potential. Another worry is that my weight keeps rising despite me eating normal and healthy amounts of food. Granted I have not been exercising until recently, but another side effect I get is constant lethargy, so it’s hard to push yourself to go for that run or that swim when you feel like this. I drool heavily at night, I’ve tried 3 meds to counteract this but nothing works. You wake up in the morning in a pool (yes, a pool) of drool. Trying to go back to sleep you turn over but there’s wet again so you end up sleeping in a cold puddle. Then, and this is gross, it starts to smell. I use a towel these days. Another thing is that if I wake up early I become even more tired during the day. I sit in class at uni with my eyes drooping and trying to concentrate on what people are saying but I zone in and out and I could easily just lie down on the floor and sleep, but I know I can’t. I fear diabetes. My Mum has already pointed this out as a possibility. She commented on how horrible it would be to have that on top of the clozapine. Also on top of the tachycardia I get from clozapine, which is treated with beta-blockers.

So what can I do? There’s only 2 options: stay on clozapine or come off it. Could I come off it? I don’t have the balls. 

What if I did come off of the clozapine? It’s kept me well for just over an entire year. Is that enough for it to correct my schizophrenia? Considering I have had around 5 episodes and 5 hospitalisations, would it have done the trick? I have had varied opinions on how long I have to stay on it: a few years, perhaps 5 years, perhaps indefinitely. 

The question is: do I want to live potentially forever on a drug? Perhaps it won’t be forever, therefore should I just wait a few years? But what could a drug do to me in that time, permanent damage? I’m not sure, I honestly do not know what this drug could do to me long term. This scares me and it scares me more that nothing is certain, no one is certain of anything, it’s ambiguous.

I have seen a few people on here come off of psych meds and cope. Could I cope? I don’t know. 

This is something that has crossed my mind so many times. For now all I have is to ponder on it. I wonder if I should take coming off of my meds more seriously but I’m genuinely not sure.

Take care, Skye.

Different Talk Therapies Explained

Hello everyone!

So I haven’t done a post on my blog for a fair while, but I’m still very much here!

Today I wanted to do a post about the different talk therapies I have had, since I got a message recently about one that I have had, asking what was involved in it. I’ve personally had 4 different therapies and I will talk about them now, in the order that I had them.

So first I had Cognitive Behaviour Therapy (abbreviated as CBT). This was the first type of therapy I had. When you go to be assessed you will have an initial consultation, mine lasted about an hour and a half, in which you are asked many questions about your early life, siblings, home life, school, mental health… all sorts of things. The person assessing you will take notes, I found this quite disconcerting as I’d never had therapy before, but really it’s just so they can take everything in and read it again to understand again what you have been saying. Anyway after the first consultation, I was offered the CBT. I ended up having quite a few sessions. What happens in these sessions is that they ask you to keep a diary of your thoughts and things you’ve found difficult during the week (my sessions were once a week), sometimes they will give you a sheet which has headings like: day, time, situation, your reaction, rating out of 10 of how anxious/difficult it was. I personally used to prefer keeping a written diary which I would show to my therapist each week, she would read it to herself in front of me and then respond to the bits she thought were important to address. She would then challenge my thoughts, if they were anxious or negative, and turn them into something much more useful. There’s always this example used: you’re walking down the street and you see someone you know, wave at them, and they ignore you. Now, you could think ‘woe is me, they hate me’, or, and as CBT would say, you could actually think ‘oh they didn’t see me, they were busy’. That’s basically what happens in CBT, changing your thoughts to be more rational and useful. That’s what I found with it anyway.

Another talk therapy I have had is counselling. I’ve had 2 different counsellors, one when I was younger and one when I was older. Counselling I found a lot more one sided. Counsellors seem to let you get on with the talking. In therapy, my therapist would give a lot more feedback and suggestions. Counselling is basically you talking to the counsellor, and them asking you questions so you can form your own opinions and views. With counsellor 1, he would often say to me ‘do you mind if I offer my opinion?’ and I would say ‘yes’ and he would offer his opinion. Counsellor 2 more let me get on with it. So in summary it’s all really about what you think more than what the counsellor thinks as they don’t offer their opinion often.

The third therapy I have had is called Cognitive Analytic Therapy (abbreviated as CAT). This therapy was very much interrupted for me by 2 hospital visits, so it’s a little awkward and difficult to explain this therapy as I was both ill and well for it. In my opinion, this is between CBT and counselling. The CAT therapist would offer her opinions, but not as much as CBT. Something that I did do in CAT was a special diagram where feelings were written, with lines that linked to other feelings and so on. I ended up with a large diagram of how my thought processes worked. It was said to me that CAT is mainly therapy for understanding relationships. Well, I suppose it was in a way, but I’d say it wasn’t completely like that. What I found most useful for this is that I got out everything I wanted to say in the past, in CBT, but was too shy to mention or didn’t get sorted enough.

The fourth therapy I had was Family Therapy. This was suggested to me and my family partly due to my illness and how it affected everyone and partly just due to family dynamics being needed to talk about. Of all the therapies I found family therapy the least useful. In fact I found family therapy rather… well, cringey. Something really weird about family therapy is that there is the family therapist, then 2 people with the family therapist taking notes. Occasionally, the family therapist would ask us to stop and turn to her collegues, then they would talk about us all to each other! I found this very strange. They did not address us at all but merely talked about us to themselves. Then it would go back to us. The family therapist would talk through and repeat in different ways what we were saying to one another. The problem with family therapy was being really open about our family dynamics to people. I found it a little strange, as if someone was watching us around the house and analysing us. Did it help? Well, I suppose it did… we became more aware of each others feelings and it’s concluded in us doing more things as a family. But overall I’d say it was my least favourite therapy.

Anyway, that’s all I’ve had! Hope that might be of help to some people wondering about therapies.

Take care, Skye.

Anonymous asked: thank you, you have a point. i think we are defentelly destroying the video so, may you always have a sunny sky, skye

Okay, great, I think that’s the right thing to do. Thank you :) hope you have a sunny day too!

Getting your voice heard

Getting my voice heard has been something that I have pretty much always struggled with, but haven’t totally fully realised until today.

As you can all probably tell, if you follow my tweets, is that I find univeristy extremely difficult to attend, really because of the people. I have issues with everyone but a few, as I find everyone really… well, daunting. I fear everyone but a few people and I really mean a few. I can count 3 people I would feel comfortable talking to or connecting with in class. 

The worst part about going to uni is that we have to do a lot of group critiques. I find this really difficult, firstly because I have always hated and feared public speaking, two because I am not confident with my ideas and three because I hate that feeling of 10 or more eyes watching me. Another reason is that I fear what people think about me and I fear they will talk about me negatively behind my back. The other part is that sometimes we will have casual sessions where we all come into the designated room and sit around, whilst the tutors circulate and give critiques. 

This might seem a little self-centred, thinking that people will be talking about me and me only. That’s not really how I meant it to sound. It’s part of being self-conscious. I also was strangely friends with someone (friend 1), who was friends with someone I was living with (friend 2). The person (friend 2) I was living with learnt of my mental health problems, then strangely friend 1 started ignoring me. So I have my suspicions and reasons for thinking this way.

Anyway, recently there has been a few occasions where, literally, the tutors have seen everyone but me and then had to dash off as they’d spent too much time with everyone. Today this sort of happened again, I’d arranged to do a presentation in front of a few tutors rather than the whole group, because I’d find this so anxiety-provoking and since I’d already be anxious about coming in, I thought it would be best to do that. However, everyone else got to present and because it ran over, I now can’t present mine at all. I really wanted feeback. 

The problem with this today was that I had made a special effort to come in, something I find difficult even if just sitting with class, and also made an effort to do at least some sort of presentation.

Not getting my voice heard today reminded me of the past. It especially reminded me of hospital. I know a lot of my readers have probably been in the psych ward, so can empathise with this… but getting your voice heard in hospital can be extremely difficult. Firstly, the nurses and doctors are ran completely off their feet and don’t have a lot of time for you. When you do manage to catch them, it would be a 5 minute chat. On one of my hospital visits, I think I actually managed to go a week without much interaction at all. Admittidly this was because I was paranoid… but no one really came into my room to ask me how I was feeling or what was happening for me. Instead, I would get ticked off the list every hour, crawl out of my room for food and return, often lying under my bed with a pillowcase over my head. I would see the psychiatrist once a week but this was all the air space I was given to get my voice heard on how I was feeling and what I was thinking.

On one hospital stay, we were all invited into a room to vent our furstrations and offer suggestions on how to improve the ward. Everyone was very vocal. But did anything ever change? No! It was only on my 5th and last visit to the ward that I saw anything getting changed, and it actually only took a few weeks to sort and it was building 2 new rooms. But everything programme-wise stayed exactly the same. Every time I went back to the ward, there was the same things happening. This was over a space of 3/4 years.

Now, some of you may ask me what I’m complaining about since I’ve been lucky enough to go to uni and lucky enough to get into hospital (if you really see hospital that way). However, I don’t think this is the point. I’m talking about a general issue that I think people can relate to, and I think actually very much mental health patients in particular can relate to.

Another example which I have mentioned before, was when I went to see a doctor (not my usual one) about my bladder problems, and she told me to go back to the mental health team as soon as she found out my diagnosis. My voice was not heard! But, not giving in, I went back to my usual doctor who took me seriously. It frustrates me though that I had to really try and push to get my voice heard. 

Anyway, I’ve rambled on quite a bit about this. But I really think it can be a problem with some people and I certainly have experience of not getting heard.

I don’t really have a solution for this, but I am really going to try and be more assertive. Easier said than done… some people have natural assertiveness and you wonder how they got it. Some people can actually be pretty arrogant, especially on my uni course. But assertiveness is perhaps a skill that needs to be learnt.

Take care, Skye.

Anonymous asked: and comming to my question is that we recorded him when he was having his episode , do you think that we have to show him or not ?

I personally wouldn’t have wanted that, when I was ill and when I was not ill. It could embrass him or cause him to trust you less, especially if he is acting paranoid.