Hearing voices and living with psychosis (10 facts)

I wanted to write a blog about what it’s like hearing voices, and having psychosis in general. People are often panicked at the thought of psychosis and to be a voice hearer carries a lot of stigma. There is so much misunderstanding around psychosis in general, and hearing voices seems to be the top of the pyramid as far as stigma goes. In this blog I will explain a little about what it’s like to hear voices, how they start and how they are managed, and I’ll also explain about other forms of psychosis that often go alongside voice hearing.

1 How do voices start?

I will give you an explanation about how my voices started but remember that everyone has a unique experience. My own voices started during my first full-blown manic episode when I was 26 years old. I’m now 35. For me I interpreted the voices to be tiny angels guiding me and giving me advice. I was not afraid and I enjoyed the experience of hearing them. I thought I was being given special supernatural powers and I believed I would enlighten the entire world. At the time I also experienced visual hallucinations of the little angels floating about me. It was a very convincing psychotic experience for me and I didn’t even question if it was real. Eventually I came down from the mania and crashed down to depression, which is a common thing that happens after mania. During the depression I had really horrible voices telling me I was worthless and that I had failed as a human being and should kill myself. At that point I was terrified that I was hearing voices, and I was aware of how other people would perceive me as ‘crazy’, so I didn’t tell anyone that I was still hearing them. I just hoped that when I got over my depression they would go away. They didn’t, and when I eventually spoke to my psychiatrist about it she changed my diagnosis from bipolar to schizoaffective disorder. That frightened me. The word schizo anything was terrifying and to have it applied to my own experience felt very uncomfortable.

2 What kind of diagnosis do people who have psychosis have?

There are many mental illnesses and disorders that can have psychosis and hearing voices as a symptom, but it is also possible that someone can hear voices and not have a diagnosis. In fact many people don’t even come to the attention of psychiatrists and mental health professionals. It is estimated that between 5 and 28 percent of people hear voices at some point in their lives, so it is not as uncommon as most people assume. Many of these people will never need treatment because their voices aren’t negative or don’t bother them.

For people who do get ‘help’ the diagnosis can vary. I have a diagnosis of schizoaffective disorder but voice hearing is more commonly associated with schizophrenia. People can have psychotic depression, and also some of the personality disorders can have psychosis as a symptom, such as borderline personality disorder (otherwise known as emotionally unstable personality disorder). I have also known people with schizotypal personality disorder to hear voices. I’m sure there are others that I’ve not listed. Really the diagnosis isn’t so important. It’s just helpful to signpost a person to appropriate help, and a useful thing to have if you are too unwell to work and need to apply for benefits.

3 Do you hear the voices in your mind or as if they are coming from somewhere out loud?

Personally I hear them as if they are coming from outside my mind. Like real noise. Usually it feels like they are positioned to my left-hand side and often behind me, but sometimes I hear them coming out the walls, or just outside a door or window. It sounds (to me) exactly like any real voice or sound. I interpret that as having a radio in my ear which causes me to pick up the sounds I hear, often believing that I’m able to pick up people’s thoughts. I have in the past attempted to disable the radio but putting various things in my ears; once I even put superglue in my left ear (note, I do not recommend this!) I have however known people who hear them in their head as if having a second person thinking along with their thoughts. My voices are never muffled, but usually clear. Even when I have several voices talking at once, I know what they are saying, even if it’s hard to follow.

It’s interesting to note that it is possible to muffle them by using ear buds, or music via headphones. Many people who hear voices use these techniques.

4 Who are the voices? Are they people you recognise, or strangers?

My voices change depending on where I am in my bipolar cycle. For example I recognise them as ‘angels’ when in a manic state. I have two main voices that talk to me the most, which I call Janet and Fred. Then there are some other voices that occasionally appear, male and female, that haven’t given me names. I have a whole list of people I know whose voices I hear, the main one being Howard, which is kind of understandable if you consider the fact that he is the person I’m closest to in my life right now. However, I also hear my mum, a few friends, my abusers’ voices from the past, and a few other people that are either close to me now or who were in the past.

I also often avoid watching TV or listening to the radio because sometimes I perceive the voices to be coming through those media, like the newsreader is talking directly to me and will say my name and stare at me. I find this incredibly frightening so I don’t have a TV and I try not to watch TV when I’m alone or when I know my voices are likely to be active.

Sometimes when I’m on the bus, I think I can hear people talking about me, feel that they are glaring at me and that they have angry faces. At times this is so overwhelmingly scary that I’ve just got off the bus or phoned Howard (my partner) for a reality check. Voices and psychosis can be very difficult in crowded places because it’s easy to think you can hear people talking about you. I remember going to a busy vegan potluck once and it was mostly people I know and feel safe with, but I started to hear what I thought were their thoughts out loud: everyone was thinking horrible things, such as that I’m ugly, evil, selfish, they don’t want me there … I remember going to the toilet for a cry because I just felt so sad that nobody liked me. I get this kind of thing a lot when I’m out with friends and my voices are active – that feeling that you can read their thoughts.

5 What is the content of the voices?

One of the main things I hear when I’m hearing voices is narration. I hear two voices, Janet and Fred, talking about me as if I were just listening in on a conversation so, for example:

“She’s lying in bed, she knows it’s time to get up, she’s putting her slippers on, we are going to annoy her today, her dogs are going to die and then she’ll be all alone, nobody likes her, she’s useless, she’s a whore” …

I could go on but this referring to me in the third person is usually what I hear and then occasionally they will give me instructions like “cut yourself, kill yourself, go back to bed!”

When I hear people I know, I hear things like “She’s useless, I don’t like her, I don’t love her anymore, I wish she would disappear, she should just kill herself, die, die, die.” Sometimes it feels like a whole group of people are standing behind me all talking at once, sometimes even yelling at me in a really intense way. At times like this it takes all my willpower not to curl up into a ball and cry.

Saying that, it’s also possible (though not as often) that the voices are positive. I get my partner Howard singing to me songs that remind of of him or us. I sometimes get him telling me things I want to hear such as “I love you, you’re special to me, I want to be with you forever”. Also I get motivational voices saying “you are strong, you can do it, everyone loves you”. The positive voices are very nice and encouraging, however it can change at any moment to negative and I’d say it’s a 70/30 split on good and bad. Obviously when I’m manic my voices are almost always nice, however they also give me advice that could be dangerous, such as to climb off North Bridge and fly, walk on railway lines (which I have done) and climb up tall structures.

6 Non-medication strategies to deal with hearing voices

It is often the case that the medications that doctors give you to stop the voices either don’t work or only partially work. I get an injection of haldol once every three weeks and that works really well for me; however, the last few days before my next injection is due, I start to hear them again and often feel paranoid. Fortunately I’ve been going to a hearing voices group (at my local hospital) for the best part of a decade, and I’ve learned many strategies to help me cope with them when my medication isn’t enough.

The biggest strategy I use is music. If there is loud music being blasted into my ears, for some reason that blocks them out. Usually it has to be headphones though. I also reality check with people I trust. I can always phone or message Howard and he is usually happy to tell me that what’s happening to me isn’t based in reality and that the bad things the voices are saying are not true. Sometimes I have to negotiate with the voices. If they are being very intense and demanding I tell them I will give then ten minutes of my time at a time that’s suitable to me and I keep that agreement. I ignore them up until that point then I give then ten minutes and after the time is up, I go back to ignoring them. For some reason this technique seems to settle them down.

There are times I want to tell the voices to shut up or fuck off. I have in past buried my face into a pillow and screamed at them. If I’m out and about and have the urge to talk to them, I’ve learned to talk into my phone and then I don’t look ‘crazy’. Sometimes I write a text out of what I want to say to them, then delete it or I’ll tell someone I trust what they are saying and get their perspective. Putting music that I love on in the background can also be useful because it encourages them to sing rather than attack me.

7 Medication

I’m not going to go into detail about medication, because I have already done so recently in other blogs, but medication can help with psychosis. However it is rarely a cure and the side effects can be devastating. Medication is not the easy fix that people think it is. I have got my hopes up so many times when my psychiatrist has put me on a new medication and it’s failed. I had given up with meds until I finally agreed to swap to haldol. For me the haldol helps a lot. I’m free of voices for two weeks out of three, but I’ve met other people who tried haldol and it just didn’t work or the side effects were so unbearable they had to quit. There are lots of antipsychotics, and if you decide that you want to go down that road, be prepared to try a few. Taking powerful medications like this shouldn’t be taken lightly. Fundamentally it changes your brain, but for some people it’s just needed because having psychosis 24/7 is so difficult and there really is very little quality of life.

8 Causes of psychosis/hearing voices

The reality is that nobody is certain what causes voices and why some people have them and others don’t. It is believed that brain chemistry plays a role and something to do with dopamine levels. There is also supposedly a genetic link (a few years ago I participated in a study) and that makes a lot of sense to me, there has been mental illness in my family. Trauma is also thought to be a cause and especially trauma in childhood. I’ve been through some life-altering trauma myself and I find it easy to believe that this plays some part in my psychosis and mental illness in general. My psychiatrists’ theory into this is that some people are born with a genetic disposition to psychosis but for some it will never be activated whereas others have the genetic disposition and experience trauma and this triggers their illness. Taking certain drugs can also bring on psychosis or make it worse. For example, I occasionally use cannabis for pain relief. I have to be very careful though, because it can trigger my voices. I have to weigh up the benefit of pain relief with the risk of my psychosis getting worse.

9 What can you do to help someone who is hearing voices or experiencing psychosis?

There are many things people can do to help. The first is reality checking. It doesn’t always get through straight away but it does help. Howard will remind me that I’m not telepathic and therefore I cannot hear people's thoughts. Sometimes just being with the person is enough. I remember when I first started hearing voices I was terrified of being alone because then they would attack me. A friend staying with me during the time it was most intense was really helpful. If you can’t be there in person chat to them on the phone, or even distract them with texts or messages. Doing practical things for/with them can also be helpful. For example when my voices are bad I don’t really feel safe leaving the flat for long. Things like shopping and other errands just don’t get done. A thing that would help would be for friends/family to offer to come with me outside – not do it for me, but support me to do it, which builds my confidence up. If the person has no professional support try and explain to them that it might be important to get help and encourage them to go see their GP, CPN (community psychiatric nurse) or psychiatrist (if they have one). Encouraging them with basic tasks such as personal hygiene, healthy sleep schedule and eating and drinking are all things that friends/family can help with. As a rule though let the person do as much for themselves as possible, because you don’t want to disempower them. They should be supported to do things, not have people doing things for them!

10 Are people who hear voices dangerous?

The reality is someone with psychosis is more likely to be affected by violence than to cause it. They are also far more likely to be a danger to themselves (suicide/self-harm) than they are to hurt others. Yes, there are some people who have psychosis who have committed a crime, either because of their voices or not, but the reality is the percentage is small. You do not have anything to fear from someone with a diagnosis that contains the word ‘schizo’. People with psychosis need empathy and understanding, not fear.

I hope I’ve given some insight into what it’s like to hear voices. There are likely things I’ve not covered, and if you have any questions then feel free to ask me in the comments or you can find me on Instagram as little_miss_black_sheep, or on Facebook as Jools Christie (if you add me on Facebook please drop me a note to tell me who you are!)

The diagnosis and treatment of schizoaffective disorder

I want to talk about diagnosis and treatment of schizoaffective disorder. I believe it isn’t talked about enough and many people don’t appreciate what a struggle it is to get diagnosed and then get effective treatment. Unlike bipolar and schizophrenia where most people know what they are, at least vaguely. This isn’t the case with schizoaffective disorder and obviously because I have it, I want to make people more aware of what it entails to live with it. Perhaps I’m hoping that if people understand what it’s like to struggle with something like this, then they might find more warmth and compassion when they come across someone who is fighting that battle. I hope my blog inspires empathy for any mental illness to be honest. So I’m going to go through some key facts about the diagnosis and treatment of this disorder, and I’ll try my best to explain each one. Please feel free to ask questions in the comments or message me directly.

Diagnosis

One thing I’ve found with people who have schizoaffective disorder is that almost all of them were misdiagnosed at first.

When I first started becoming unwell in my late teens I presented with depression. I was therefore unsurprisingly diagnosed with unipolar depression. (unipolar depression is just depression that a person has who does not have a bipolar aspect to their illness.) I was given antidepressants and sent away. Those antidepressants didn’t work so I tried a few until I found something that worked for my depression; finally I did and all was good (for a while).

I have always since my late teens had periods where I felt elated. I now recognise that as hypomania but because I felt so good during those periods I never presented to my doctor in this state. I never even thought to mention the fact that I might be “too happy”! That changed when I turned 26, whereupon I had my first full-blown manic episode. At first I was just elated and doing quite well – spending a lot of money, which isn’t good, but doing well at work and feeling really good about myself and life. My elation started to creep up and up. I started to hallucinate that there was a pony in the garden. I spoke about this a lot. I started to believe I had a very important spiritual mission to unite all the world's religions into one. I believed my partner (Rick at the time) was a Buddha and so was I, that we had phenomenal cosmic power. Trust me, there is only so long you can go on with these beliefs and talking about them before people start to notice! Finally it was work that gave me the final push. They said I didn’t seem well (which I thought was ridiculous) and sent me home to rest advising me to see a doctor.

A week later I needed a sick line and so reluctantly I went to see my GP. When I arrived for my appointment I remember I just kept talking and talking about religion and all sorts of things. The GP explained to me what mania was but I didn’t listen and she got an urgent referral to see a psychiatrist. I waited one more week with my GP phoning every day to see how I was and her trying to hurry the referral. Fortunately, even though I had some odd beliefs I wasn’t a danger to myself or anyone else. Eventually I saw the psychiatrist. A friend came with me to make sure I’d go and at this point nobody wanted to leave me alone. I sat down and started talking and within two minutes I was diagnosed with mania and told I had bipolar, I later found out type 1. It’s not that I didn’t believe this at the time, I just didn’t care. I had too many other ugent things to do than worry about that. Rather than go into hospital which I really didn’t want to do, I was given the intensive home treatment team, and my partner took some time off work to look after me. We started the task of finding the right medication(s) to fix me. During the time I was manic I was also hearing voices. This is not unusual for mania and it was assumed that when my mania went away that I would stop hearing the voices.

It took a good couple of months but eventually my mania did go away, in fact it crashed into depression. During the time I was depressed I was hearing voices and I assumed (without telling anyone) that it would go away when my depression lifted. My depression lifted and I was still hearing voices. I decided to tell someone. I had a psychiatrist, I had a CPN, but at this point I didn’t know either of them that well so I went to my GP (a different one this time). When I told him he seemed to panic. He asked me what the voices were saying, so I explained that mostly they were just talking about me and not to me but that it was still destressing, and that sometimes they asked me to do things that I didn’t want to do. He contacted my psychiatrist and I got an urgent appointment. Then in that appointment I was diagnosed with schizoaffective disorder (bipolar type) and psychosis. It is also possible to have schizoaffective disorder (depressive type) which is just without the manic symptoms.

I believe some people are misdiagnosed with schizophrenia if they present with the voices as their primary symptom and the mood disorder part is not noticed until later. This has happened to at least one other person I know. Either way once schizoaffective disorder is diagnosed the next stage is finding the right medication.

Medication

Many (if not most) people with schizoaffective disorder use medication. I simply wouldn’t have a quality of life at all without my medication and I am very pro using psychiatric medication if it helps. I will never shame someone for taking meds, no matter how much or little they take.
It’s often really hard to get the combination right. In my last hospital stay I was told that it’s not uncommon for it to take 10 years for the psychiatrist and the patient to get the right balance of meds. I’m coming up 10 years past my diagnosis so I’m hoping we have finally got it right! I’m going to go through each type of medication that a person with schizoaffective disorder might need to take and say a little about each type…

Mood stabilisers

https://www.mind.org.uk/information-support/drugs-and-treatments/lithium-and-other-mood-stabilisers/#.XaSbhIFKjnE

If your schizoaffective disorder is bipolar type like mine then likely you will need a mood stabiliser. My psychiatrist says that “Lithium is the best mood stabiliser by a country mile” I have no reason to disagree with her. The evidence is there to say that it’s the best. I’ve been on lithium for 10 years and I have never had a problem with it. Some people say it dulls their emotions but past the first couple of months this has never been a problem for me. Side effects for me are feeling thirsty a lot and peeing a lot, this is annoying but a sacrifice worth taking to stay grounded. You must get a blood test to check your lithium level every 3 months, and every 6 months you need kidneys, liver, and thyroid checked. They use smaller doses of lithium than they used to so complications are less likely. However everyone’s dose is different depending on their blood levels. I went to a talk about 10 months ago about lithium and found out that even though it is by far the most effective treatment for bipolar and bipolar type schizoaffective disorder; commonly it is not being prescribed which means some patients may be missing out on treatment that could really help them.

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/changes-in-prescribing-for-bipolar-disorder-between-2009-and-2016-nationallevel-data-linkage-study-in-scotland/AD94F0E7B0274C639ECDA60C75B630AD

Other mood stabilisers that are often used are the drugs that are more commonly used for epilepsy. I am also on lamotrigine which I needed because even though lithium did level out my moods I was still getting unwell. There is also sodium valproate which nowadays is rarely given to women of child bearing age and carbamazepine. I’m sure there are others but those are the main ones that I know.

Quetiapine which is an antipsychotic is also frequently tried as this has mood stabilising properties and also antidepressant qualities and I believe other antipsychotics have mood stabilising properties. Also I believe that lithium is more effective in type one bipolar (which means that you get full blown mania) and not as effective in type 2 (which means you get hypomania but not mania). Another important note about lithium that I found out the hard way is that if you stop it suddenly you can get rebound mania that can be quite severe, so if you are on lithium and you want to stop then please talk to your doctor first.

Anti-Psychotics

These are probably the type of drugs that people hate the most. The side effects of these drugs are the worst! I have tried SO many until I found the right one. chlorpromazine was the one I was on for ages but the sedation was crippling me and it dulled down EVERY emotion I had plus apart from make me sleep at night (which is important when you have a bipolar type illness and why I kept taking it so long) it didn’t actually do much for my psychosis. olanzapine is another popular choice. This worked relatively well to suppress my psychosis, however it made me put on lots of weight very fast. I know not everyone who takes olanzapine will have this problem but it is very extreme and very common. It makes you so hungry you cannot resist eating, you don’t know when you are full, and your metabolism slows down! I went up from a size 16 to a size 24 in a matter of months and in the end I had to stop it. I’ve tried risperidone, amisulpride, aripiprazole, quetiapine and then finally I tried haloperidol! I really didn’t expect haloperidol to work, it was a last ditch attempt but it actually worked! When I say worked I don’t mean things are perfect but they are a LOT better. Anyone who knows me well can tell that. Now I get an injection in the bum once every 3 weeks and my psychosis only really comes back a few days before my injection is due. That is heaps better than struggling everyday.

Side effects for me are restless legs, and stiffness of my joints. I take a drug called procyclidine three times a day which basically suppresses the side effects of haloperidol. It sounds complicated but it works well.

The thing about psychosis is that everyone is different. Everyone responds to meds differently and it’s trial and error. There is only one antipsychotic that statistically works better than all the rest and that is clozapine. Had my haloperidol not worked that was the next step for me. I don’t have enough experience or time to write about clozapine in depth but I will share some links in case anyone is interested. Anyone on clozapine has to be monitored very carefully because there are serious risks but I have seen it change lives.

https://en.wikipedia.org/wiki/Clozapine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4169186/

The main problem I’ve had with antipsychotics is that they have a tendency to dull emotions down. I’m very lucky that for me haloperidol only really does this for two or three days after my injection and not extreme. For me it’s worth it. Everyone else has to decide for themselves if it’s worth it for them but if you are in the mental health system and have been under section or a community treatment order it can be decided for you. Even in 2019 forced injections do happen. I myself am on a CTO and have been told that if I refuse my injection I will be taken to hospital and given the injection against my will. That for me is a scary thought.

Antidepressants

The next kind of drug that’s given to people with schizoaffective disorder is antidepressants. It’s important to note here that psychiatrists are wary of giving anyone with a bipolar type illness an antidepressant because they can and in my case frequently do cause mania. That being said sometimes antidepressants are still prescribed.

There are several different types of antidepressants but for the sake of stopping this blog becoming an entire book! I am going to just give a brief overview and focus on my own personal experience because at the end of the day, that's what I know best.

SSRI type antidepressants are the most common. I’ve tried a few of those, mostly when I was only diagnosed with depression. I tried fluoxetine (prozac), sertraline and citalopram. These helped my depression in a very mild way. They took the edge off, they didn’t take it away and I still struggled. For me the main side effect of this drug was intolerable and that is sexual dysfunction. To put it bluntly, I was unable to have an orgasm. For some this doesn’t happen but for many it does. For other people it is a side effect they can live with and that’s ok, but for me it was not tolerable and I went to my doctor asking for an alternative. I was then prescribed amitriptyline.

Amitriptyline is an older antidepressant, it’s a tricyclic rather than the more commonly used SSRI types. The main side effects I get are constipation, some difficulty peeing (I need to totally relax) and sedation. There are other side effects that I don’t get that others do. I’ll provide a link so that people can read up for themselves…

https://www.nhs.uk/medicines/amitriptyline-for-depression/

Amitriptyline is guaranteed to raise my mood. I’ve never been on it and had no effect. It’s amazing. Even more amazing is that it gives me the best quality sleep possible. I won’t hold back, it’s my favorite drug! So what’s the problem? Why have I, up until now, still been having severe periods of depression? The answer is mania. Amitriptyline up until now has always pushed me into mania; this has made my psychiatrist very reluctant to give it to me even though when depressed, I frequently ask for it because I know that it will bring me out of depression. For me (in a depressed state) mania seems like a better alternative! What’s changed for me now is that since my hospital admission, I am now on a second mood stabiliser “lamotrigine”. Since then I have been able to tolerate a very high dose of amitriptyline without being pushed into mania (so far). It’s early days but I am feeling hopeful and so are my psychiatrists. This is what I mean about getting the combination of medication right. Everything has an effect on everything else, every person is unique so everyone will get optimal effect from different meds.

Another thing worth noting about amitriptyline is that there is a huge risk for overdosing that the person will die. This is obviously a concern when giving it to someone with such a serious mental illness. I was warned when I first got prescribed amitriptyline that it was very dangerous to overdose on. When suicidal I did overdose on it, twice. First time a smallish amount, the second time a larger amount and I very nearly died. I now only get a weeks worth in an NHS dossete box and if I am seeming low enough to be a suicide risk someone (usually Howard, my partner) will look after my medication for me and only give me a day or two at a time.

There is some evidence that amitriptyline is one of the most effective antidepressants. This does not surprise me.

https://www.ncbi.nlm.nih.gov/pubmed/11157426

Anti-anxiety medication

Most patients with schizoaffective disorder will experience anxiety at some points in their illness. I have often felt anxious, especially when depressed. I haven’t had a lot of anti-anxiety medication mainly I’ve had it when I’ve been in hospital. The most common type of medication I’ve had for anxiety are benzodiazepines. Such as diazepam, lorazepam, temazepam. All of these drugs work well for me but really people should only take them short term. Tolerance happens very quickly and they are addictive and habit forming. I have abused them in the past because I know they are going to take away my anxiety and I’ll feel relaxed and calm, so of course there is a constant urge to take more and the more you take the more you need for that same effect.

When in hospital I use these a lot and rarely when things have been bad in the community. When in hospital the last time I used a new drug (to me) called promethazine which I took in a fairly high dose (50mgs). I’m not going to say that it works as well as the benzodiazepines but it did help take the edge off when I was in hospital. It’s mainly used as an antihistamine but can also be given for insomnia and anxiety.


The other drugs I’ve known to treat anxiety are drugs like gabapentin. I have no experience of those so can’t give much of an opinion but if you are really struggling with anxiety and it’s everyday for a prolonged period they could be offered to you. Anxiety is horrible and can ruin a person's quality of life.

Being compliant with medication regime

If you know someone with any mental illness you might be aware that sometimes people are not compliant with their medication regime. This can be extremely frustrating for loved ones because it seems like the person is deliberately sabotaging their mental health. I have at times deliberately missed meds or taken too many meds. Why would someone with a serious mental illness like schizoaffective disorder do this? The answer is for several reasons.

Side effects

The side effects of some of these medications can be severe. Especially antipsychotics. Until I found haloperidol and started getting it injected I often skipped or quit my antipsychotics. Dulled down emotions are horrible, especially when you are already depressed. It can ruin the feelings of love, warmth, happiness, excitement, passion, sexual arousal… Sometimes it feels like it’s better to be psychotic and feel rather than be free of psychosis and feel nothing (or very little).

Trying to affect mood

This happens particularly with lithium. As I’ve already said if you stop lithium you have a high chance of getting rebound mania. Once I figured this out, when severely depressed it was very tempting, in fact I did, stop lithium to induce mania. It often worked but then my bloods would be taken and it be very obvious that I hadn’t been sticking to my lithium regime. My loved ones would get angry with me. Why would I do this? I’ve effectively created chaos and upset for the people around me. I feel bad for this but imagine being so severely depressed you can’t feel any emotions, you are constantly thinking about suicide, everything feels sluggish and hellish and that goes on for months and months. Now all you have to do to feel happy is to stop taking a particular pill every night and you are going to not only feel happy but feel on top of the world. Often I try and do it in a subtle way. Taken less of my dose, missing a dose here and there. In the hope that I can just induce hypomania. Usually though it’s resulted in severe mania and a stay in hospital. My admission for 6 weeks back in January was a result of this.

Missing the psychosis

Yes you read that right. It is possible to miss the psychosis. Especially if you are not depressed and your psychosis was not all negative. Hearing voices can be mixed. I often hear Howard’s voice telling me he loves me, he sings to me, he keeps me company when I’m alone. I miss that part of psychosis. If you are lonely sometimes hearing voices can be a comfort. You get used to hearing voices and you can miss them when they go away. Also sometimes you feel like they are giving you important messages or information. To cut them off feels wrong. It took me some getting used to after 10 years of hearing them every day to suddenly not have them at all (most of the time).

Being too unwell

When you are very unwell taking medication can be difficult. Voices might tell you not to take medication. You may be so depressed you just lay in bed and don’t get up. Taking your meds is the last thing on your mind. When depressed, a person might not care if they live or die. So taking medication to make you feel better seems pointless.

There are lots of reasons and I urge you not to judge. Help the person understand that the medication is important. If their side effects are unbearable help them explain this to their psychiatrist and when they and their psychiatrist are trying to figure out what medication works for them be supportive, be kind, don’t judge. Keep in mind it can take up to 10 years, with an illness as serious and complicated as schizoaffective disorder, to get the medication right. I can promise you if you had to take so much heavy medication then you would struggle too. If you feel a person is in danger then get them help. In Edinburgh you can call MHAS (Mental Health Assessment Services) which are based at the Royal Edinburgh Hospital , https://services.nhslothian.scot/MentalHealthAssessmentService/Pages/default.aspx the police are also an option, talk to the people close to them, also talk to the person. You might not get through to them depending on how ill they are but you just might. I have in the past been convinced to go to MHAS of my own accord. It can happen. Remember for people like me MHAS and places like it have often be a one way ticket to the psych hospital. Be understanding about why people might be reluctant to go.

Some people choose not to take medication and sometimes that’s okay. There are some people who can manage without it. Just because this isn’t the case for me doesn’t mean I would invalidate someone else’s choice. There is other support available that is not simply to medicate. Which leads me on to my next and last point.

Talking therapy

Ironically talking therapy is harder to get on the NHS than pills. I have had psychotherapy for three months in my recent hospital stay.

In my experience talking therapy has been good alongside medication. I don’t think it can cure schizoaffective disorder but I do think that it can help manage it especially (but not always) alongside medication. There are various things that can lead to a person developing an illness like schizoaffective disorder. It is thought to have some genetic basis however other things can bring it on such as trauma. I have had psychotherapy for sexual assault/rapes in my past. Going through therapy is extremely tough. Like me, a person might get worse before they get better. It can be rocky. I have finished therapy for now but I’m still having the effects, mainly flashbacks at night. I hope on the whole it’s helped though.

I hope this blog has been informative. Please leave comments if you have any questions. I’m very open and I will try and answer you. If you know me in person feel free to drop me a PM. I hope that this blog has been informative. Feel free to share it far and wide; if I help one person then for me it was a blog worth writing. I am willing to take suggestions for any future blogs. If it’s something I have experience of then I will happily write honestly about it.

Thank you for taking the time to read.

11 ways to help a loved one in a psychiatric hospital

It's been a while since I wrote a blog.  My last hospital stay was not voluntary (it never is but this time more officially NOT voluntary) and very difficult.   I couldn't face thinking or writing about mental health after that, but recently after talking to friends I thought it might be useful to write a list of things that family and friends can do to help when a loved one is in a psychiatric hospital or ward.  There are things people did for me that really helped make my stay easier and I'm eternally grateful to them for that and it's important to note that the situation and needs can be different than a medical ward.  Also in my experience a stay in psychiatric ward tends to last a bit longer than a typical stay on a medical ward.

Brief update on me, since I got out around 7 months ago I am doing much better.  I still have niggles and issues but much less so nowadays. I've currently not heard voices for almost 3 weeks now, which I put down to getting a better sleep now that my bladder issue has been medicated and I no longer need to get up every hour or more for the toilet.  Since taking that medication and sleeping for more than 3 hours at a time my voices have gradually disappeared - something I never thought would happen after hearing them for years!  They may come back I am not naive enough to think I'm cured, but for now it's nice to have freedom from them.  I feel fairly happy and I'm working  hard to stay stable and well.  My diagnosis seems to change at the moment between Schizoaffective and Bipolar and back again so I use the two terms interchangeably.  I don't mean to cause confusion but actually even I'm confused sometimes so it's difficult.  For people who don't know Schizoaffective is Bipolar with psychotic symptoms even when a mood episode is not present.

So here are 11 points about hospital and what you the visitor and family member can do to make it easier!

1.  Visitors

I put this at number 1 for a reason because for me it was the most important thing that people could do to help me when I was trapped there.  When a person is very unwell and first admitted they might not want visitors, or they might only want close family/friends.  As they start to get gradually better they might be happy to see other people.  I was happy to see almost anyone.  Being trapped on the ward made me feel disconnected from reality.  I didn't have passes (allowed time off ward) for a long time and so my world felt very small.  People coming to see me made me feel more like myself again and not just a crazy person.  You might wonder what to talk about, just chat away normally, tell them about your day, what's going on with people on outside, the person will just be pleased to have familiar company.  Also try not to be late, if you say you are visiting at the start of visiting hours try and be there for then if you know its not going to be till later then tell the person or someone else who can pass it on that you will be later.  Your loved one is likely waiting on you and I found when someone was very late I would start to panic.

Sometimes it's overwhelming for your loved one if all the visitors come together in one visit.  For me more than 2 people could be too much especially at the start of my stay.  If you can coordinate with others about when is best to visit, such as the persons partner/spouse or close relative, and if possible you can ask the person themselves via phone or text when is a good time to come.  If visits are spaced out it means the person gets visitors more frequently rather than everyone at once.

Your loved one might be in hospital for sometime and I know from experience that the longer you are in the less visitors come.  People don't mean to forget but they do a little and often patients that have been in the longest have the least amount of visitors.  It can take a long time to get better sometimes so if a person has been in for a while keep popping in to see them whenever you can.  They will appreciate it so much.

You might not be sure if your friend wants you to visit, asking questions such as 'do I know them well enough?'  Don't just sit there wondering, ask!  They might really love to see you but it's rare that a person in that situation would ask you directly to visit.  If you have no way of contacting them directly ask someone close to them.  In my experience people are usually allowed to keep their phones on the ward unless they are in IPCU which is the equivalent of intensive care for psychiatry.  I was even allowed to keep my phone when I was on constant observation which is the stage before IPCU. You get to keep your phone providing you aren't doing anything with it to harm others or put yourself at risk. When I got out from my last stay some people said to me I wanted to visit but I wasn't sure if that would be ok.  I would have loved to see them especially as I was starting to get well.  Understandably you might not be able to visit for various reasons but you can help in other ways.  Send a card directly to the ward (the person can get mail), send a nice text, or email.  Most phones have internet and often there is internet access on the ward or somewhere in the hospital.

2.  Bringing things that the person needs

The person may or may not have had the chance to pack a bag.  It's likely that even if they did pack their own bag it was done in a hurry and things are missing.  Family and loved ones may have the job of bringing practical things in that the person needs.  If you are planning on visiting it could be worth calling the ward, or the persons mobile and checking if they need anything.

Rick used to ask me to pack a bag when he felt hospital was on the cards.  I was always very reluctant to do this because I  hate hospital and I didn't want to go there so packing a bag was the last thing I wanted to do.  When I was on my way to hospital I packed a half hazard bag with stuff for only a couple of nights so Rick had to pack another bag before his first proper visit to make sure I had the essentials.

Think carefully about what you pack.  When packing clothes ask yourself if this is something the person wears regularly?  They are more likely to need and appreciate comfortable clothes.  Underwear, jogging bottoms, leggings, or t-shirts.  Slippers are very handy for walking about ward.  Pyjamas are also important but unlike a regular medical hospital your loved one will be encouraged to get dressed each day.  If there is something your loved one wears a lot then try to remember to pack it.  I always like to wear a cardigan for example so it was nice to have a couple with me.

Toiletries are important, don't assume such things are on the ward as often they are not.  Shampoo, conditioner, deodorant, baby wipes, or perhaps a familiar and favourite perfume.  If the person normally wears make up bring it in.  If they are in a depressed or very psychotic state they may not ask for it but having it there may inspire them to self care.  Often people go into hospital and they are not taking care of themselves, part of being in hospital is about picking this up again.  Although my ward had towels they were tiny and so it was nice to have my own large towels.  A dressing gown is also handy even if person doesn't normally use one because it protects modesty in a ward full of strangers. In my ward the toilet was down the hall from my dorm, that meant travelling in night clothes through the night, a housecoat meant I was warm and covered.  If your loved one is female then sanitary towels or tampons are handy to have as the supply on the ward tends to be cheap and nasty.

Money is also important.  Even if your locked on the ward you can send people to buy things for you and there is a hospital shop that a nurse can take you too.  I used the money I had to buy sweets, magazines and juice.  Little comforts that made my stay that tiny bit more bearable.  When you are in a situation like that the small things start to matter more.  I remember a nurse told me at 9am she could take me to the shop at 3pm when she wasn't going to be busy.  I looked forward to that all day because it meant I could buy myself a diet coke!

Once the person has the practical things that they need you might also think about some other items that will make there stay a little easier.  I found that there wasn't much in the way of recreation and that was hard because it meant I focussed more on my voices or delusional ideas, or when depressed just obsessed and planned ways I could end my life.

Good items to bring in are, iPods, tablets, books (though many people would find reading a book very difficult when unwell), religious items - Rick brought me in a Mala and a small Buddha statue, photos of loved ones, magazines (especially ones with lots of short stories - something I would never read on the outside but passed the long hours on the ward), items of comfort such as a teddy bear from home - but keep in mind that things can go missing so nothing too precious. Gadgets like iPods can be locked in nurses office or little safe in bed-space. Food! Food is always a lovely treat because the hospital food is repetitive and not always tasty.  Fruits like strawberries or grapes (keep in mind your loved one doesn't have a knife to cut things). Chocolate, juice that they like, or their favourite tea bags or nice type of coffee.  Flowers are a lovely gesture to brighten up a persons bed space, and I still have the cards from the people who gave me a card because it helped me so much to remember that I had friends and family who loved and cared for me.  I always appreciated when people phoned me or texted and asked me if I needed or wanted anything.

If your loved one plays a musical instrument bring it in!  They may not be in right frame of mind to pick it up and play at start of their stay but as they get better they will appreciate it.  We had a lady on my ward who played the guitar.  She had everyone up dancing and hugging.  A very rare moment of feeling happy on the ward.

3.  What you should NOT bring to the ward

Think carefully about what you are bringing into the ward.  Anything that the person can hurt themselves with should not be brought in.  If your loved one wants a razor to shave with then ask a nurse if this is ok.  Even electric shavers are a threat as they can be opened up and used to cut.

No medication should be brought in.  Your loved one will be given all their medication they need from the nurses on the ward, such as any psychiatric meds, painkillers and medication for other physical illness.  If your loved one tells you they are not being given the correct medication or that they have asked for a basic painkiller like Paracetomol and it hasn't been given then talk to the nurses.  Be firm if they are missing out medication for physical issue.s I have known this to happen so don't assume that the doctors and nurses have got it right.  Remember you are an advocate for your loved one.

Alcohol is never allowed on the ward.  You may think you are giving your loved one a treat or helping them by bringing in a bottle of wine but in reality you could be making there situation much worse and putting other people on ward at risk.   Alcohol can often interact with many of the psychiatric medications on the ward.  When I was last in hospital a visitor brought a patient some vodka.  After they left the patient drank the vodka and then found and used a blade she had somehow got hold of and slashed her own neck open (she nearly died).  That resulted in her going to IPCU.

Recreational drugs, illegal or legal highs, are never ever a good idea.  I have a very liberal attitude towards most drugs but a psychiatric ward is not the place for such things.  Those kinds of drugs tend to make most psychiatric conditions much worse.  When I was on the ward these drugs were everywhere, I was offered them many times.  I saw people do crazy stupid things on drugs and prolonging their stay because of them.  If your loved one is addicted to something and going through withdrawal then talk to a nurse rather than bring in a drug.  Maybe now is a time to be treated and come off something like that?  Sadly when people are very unwell mentally they have a harder time making wise choices for themselves so if such things are on the ward there is a temptation to try them.

If your loved one is at risk of trying to hang or choke themselves they may be very limited in what they are allowed to keep with them.  In such instances, things like phone chargers, house coat ties, shoe laces, are all kept in the nurses office and given when supervised.  If your loved one starts asking for extra phone charger or shoe laces then talk to a nurse before you hand it over.  If you have a bad feeling about something then check with a nurse.  Your loved one might protest but checking could save their life.  Please remember people can and do die because of mental illness.

4. Anger

You may feel angry or have mixed feelings about your loved one being put in hospital.  Them being away may greatly inconvenience you or be hard on others.  It is never ever helpful to show this anger to the person who has been hospitalised.  Guilt trips only serve to make your loved one feel even worse than they already feel and may even fuel their mental illness.  Sometimes mental illness is hard to understand.  Why can't the person just snap out of it?  Think logically out of their psychosis?  Stop being manic?  Start taking care of themselves?  Stop threatening to kill themselves or trying to kill themselves?  I can promise you, and I have first hand experience with this, your loved one does not have control over their mental illness anymore than someone with a physical illness does.  They did not deliberately get themselves put in hospital and they are not having some kind of holiday in there.  Being on a psychiatric ward is very difficult.  You're trapped there and you are away from everything familiar and everyone you love.  Sometimes the people around you are so unwell they are scary and threatening.  You may hear about moments of fun, of laughter or joking and this may make you more angry thinking they are obviously having a great time.  There are moments of fun and laughter even in the most dire situations because human nature tries to find a way.  People want to relate to each other and heal.  Those moments are far rarer than the moments of isolation, desperation, fear, loneliness, claustrophobia and mental pain.  Making your loved one feel guilty because you heard them laughing as you came up the stairs to visit is NOT cool.

Do not tell your loved one that they are not allowed to go into hospital if things get bad, or that they better not let that  happen, or guilt trip them in anyway if you start to realise that hospital might be on the cards.  That is as silly as telling someone with a serious infection that there infection better not get any worse because you don't want them to go into hospital!  Telling someone or implying to someone that they shouldn't go into hospital actually makes the risk of suicide higher because they are less likely to ask for help and will feel like they are just a huge inconvenience and people are better off without them.

5. Other patients

I'm going to be honest here.  Other patients can sometimes appear very scary and very unwell.  I'm sure I have appeared this way to other visitors in the past.  You may be horrified that your loved one is sharing a space and dorm with people like this. What kind of influence will they have on your loved one?  Will they become "friends"?  Is that healthy?

What you need to remember is people who are in hospital because of mental health are people too.  They have a life outside the hospital and they have wants, needs, desires and talents.  Even if at this point they appear to be unkempt, crazy, slutty, loud, or deranged there is a very good chance that when they are well they do not appear like that.  I have found that the people on the ward who get better the quickest are the ones who come out and talk to the other patients.  The people who hide in their bed space and spend most of there time alone are usually in for longer periods.  It's surprising how much some human contact and empathy can help.  Other patients often understand what your loved one is going through more than anyone else.  Judging them based on their mental health says more about you than it does about them.  If you see someone acting in a strange way on the ward when you are visiting don't stare, focus on the person you are here to see.   There is a good chance that you will see the same person in a few weeks time and they will appear totally different.

One of the really touching things my Mum did last time I was on the ward was to bring in biscuits and chocolates to share with everyone (not just me) people really appreciated that and looked forward to her visiting because it meant a nice chocolate biscuit.  I was so proud of my Mum because she spoke to other patients and she treated them with kindness even when they where acting bizarre or it was clear that they where really in the grips of there mental illness. 

It is very likely some friendships and bonds will form between your loved one and other patients.  It's up to your loved one who they keep in contact with after they leave the hospital. Rest assured it's rare that those friendships will have a negative impact on your loved one and if it appears to be the case nurses would intervene.  When they are well enough to leave hospital they can decide if they want to keep contact and they also have a choice to carry that on if the person is to difficult to be friends with.  I believe as much as possible it should be the persons choice what to do about keeping in touch with hospital friends. 

6.  Taking your loved one off the ward

As your loved on starts to recover the nurses and doctors on the ward give out a privilege commonly known as "passes"  sometimes passes start with the patient being allowed to leave the ward accompanied by a family member or friend.

You need to feel comfortable doing this.  It is a responsibility and you should feel that you can cope with that.  If you don't feel comfortable do not be afraid to say no, or "not this time"  If you do decide to take them off ward make sure you know exactly how long the person is allowed off the ward with you as they can get in trouble if they are late and may lose future passes.  The police can, and are, phoned if the nurses think the patient has been out too long and may be at risk.

When I started getting passes I was still in a fairly bad place mentally and so I asked to go to a shop and tried to steal some Paracetomol so I could overdose with later.  I'm not proud of that but I'm mentioning it as something to look out for.  Anything they buy in a shop should be safe to take back to ward.  So don't let them buy anything you wouldn't bring onto ward and if they insist then inform the nurse on return.  If your loved one runs away when out on pass just phone the ward immediately (you will not be in trouble).  They usually give you a number just in-case.  Don't waste time looking for them the ward will deal with it usually by contacting the police.  Don't worry your loved one will not get a criminal record for simply running away they will just be brought back to the ward.

7. Voluntary or Involuntary

There are two ways to be admitted to hospital, to go in voluntary of your own accord or to be there involuntary by being sectioned under mental health act.  The type of person who feels angry at a loved one for being in hospital might feel even more angry to be told that they person is there voluntary.  I want to make this clear there is no such thing as voluntary its all semantics.  I've been classified as a voluntary patient and I have been sectioned involuntary, and I have been both within the same stay but on all of these occasions it was never really voluntary at all.  For example I was unwell, very depressed and psychotic, and a suicide risk.  I had slashed up my arms and had no real insight into what was psychosis and what was real.  My CPN (Community Psychiatric nurse) said to me that she felt I needed hospital and because I hate hospital I disagreed and said that I did not want to go and would not go.  She then said that if I did not go she would have me sectioned under the mental health act and would send round the police to take me to hospital if I did not comply.  What choice did I have?  Of course I went to hospital.  When in hospital many times I would ask to leave and then I would be told that if I did I would most defiantly be sectioned, so I would back down.  When I did challenge them and 'called their bluff' I stood at the locked door of the ward (you're on a locked ward whether you are voluntarily or involuntary) and I demanded they let me out.  They tried to persuade me to come back into the ward and I kept demanding they let me out.  I was dragged back upstairs to the main ward, restrained, and temporarily sectioned. Then later that day my psychiatrist came to the ward and officially sectioned me for a further 28 days (note the events of this are cloudy in my mind so its a vague memory of what happened).  I was never really voluntary.  Ironically once you are sectioned you are allocated a mental health officer and you are allowed to challenge your section legally.  If you are voluntary and only staying because of the threat of sectioning then you have no such right.

Even sadder is the fact that there are some people usually with depressive type of illness who are at the end of their tether who go to mental health assessment and actually ask to be put on the ward.   Usually they are turned away. It's actually fairly hard to be admitted when you want to be admitted.  There simply aren't enough beds so you have to be considered very seriously unwell to be given a stay.

8.  Odd behaviour

Your loved one may not act in a way that you are used too when they are in hospital.  They may do or say things that are out of character.  For example when I am manic I can make inappropriate sexual comments and advances towards people that I would otherwise not have this type of relationship with.  I may seem rude, or have ideas that are very strange.  I had a belief that my partner was the Buddha and when unwell I have had many strange ideas that I have believed 100 percent and other people have found strange and hard to deal with.

When depressed I will talk a lot about wanting to kill myself. I might ask a visitor to help me do this such as bringing me things onto the ward that I can use to hurt myself with (you should never comply with such a request).  I may talk back to my voices openly without realising that this is odd or that other people can't hear them.  Because of voices your loved one may believe they have had conversations with people that has never happened.  For example I often hear my partners voice as one of my voices when he is not there.  In hospital I had a long conversation with him about all the things I needed to bring from home for me onto the ward.  Clothes, shampoo and other such items. When he arrived at visiting time he had none of the items I requested and I was really angry because I really needed my things.  He had to point out that we hadn't spoke on the phone that day and so I had been talking to a voice in my head and not a real person.

It's not easy to be with someone when they are in this place.  It would be easier to say ok I'm not coming back till they are better but actually being there during all of that is very helpful.  Familiar people (at least to me) are like little anchors to reality.  Mostly my visitors would divert the conversation if I got too involved with my delusions or suicidal thoughts.  For me it's important that people don't go along with what I'm saying and instead talk about things based on reality.  Ask about the routine on the ward, tell them what happened in your day and just be there. Let them know that you care and that you love them.  The person shouldn't be reprimanded for talking about suicide or delusions.  Accept that this is just part of the illness and that it's not permanent.  Let them talk but don't encourage them to delve deeply, never make out you believe what they believe when its clearly not true. This is very unhelpful and makes things worse.  Most important is to let them know that you care and want them to get better and be well again.

It may also be the case that you turn up to visit and your loved one appears perfectly fine and its hard for you to even understand why they are in there.  Sometimes I would somehow pull it together for a visit and must have appeared ok.  Things can and do fluctuate especially as people start to gradually get better.  Also it can depend on what medication a person has taken prior to visiting.  If I had my PRN meds (Chlopromazine and Lorazipan) before visitors arrived then I may look a little doped on meds but actually I wasn't as erratic externally.  It's also important to note that your loved one might not need this medication when at home and it might alarm you that they are taking something like that on the ward, but when on the ward your loved on is acutely unwell and this type of temporary medication can be very useful short term till things are back on track.  It is NOT appropriate to interfere with that or tell your loved one not to use a PRN med if a PRN has been prescribed.  By doing so you are making recovery take longer and making your loved one suffer even more distress.  If you have a problem or concern about what medication is being prescribed the more appropriate action would be to talk to a nurse or the persons psychiatrist.  Remember medication is reviewed regularly by the doctors.

9. Constant Observation

When a person is very unwell on the ward and is at extreme risk of hurting themselves or others then they may be put on something that is called constant observation.  This means that a nurse or, if needed, two nurses will accompany the person wherever they go on the ward.  It is unlikely if the person needs this that they will have passes or be allowed of the ward at all.  Being on constant is not easy on the patient.  It means you are allowed no privacy.  A nurse comes to the toilet and shower with you and a nurse will watch you sleep.  They basically follow you everywhere and you are never alone.  When I was put on constant I didn't fully understand why and that made it more difficult and frustrating. 

As a visitor you might find it strange to have a nurse standing over you or nearby when you visit.  Please don't let this put you of visiting because your loved one may still very much appreciate a familiar face.  Just go about the visit as you normally would.  Depending on what kind of constant the person is on they might even get some time away from a nurse when you are there and that will feel like a huge relief.

Some nurses on constant are really friendly and will talk to you and make you feel comfortable.  Others will say very little and things will feel very uncomfortable.  Sadly in my experience I had a couple of nurses say inappropriate things this time.  For example when I said that I didn't feel comfortable with someone standing in shower room with me she responded with "Well you shouldn't have got yourself put on constant then." I didn't even fully understand why they put me on constant and so that comment made me feel dreadful.  It's very obvious that having patients on constant puts a strain on the nurses on the ward, and I could easily pick up on this, which reinforced my belief that I was a horrible worthless person and should just end my life.

10.  Nurses and other staff

Not every nurse is nice.  As much as I would love to say that they are all wonderful and helpful and full of compassion and empathy it's sadly not true.  There are good and bad.  I had some really helpful nurses on my ward who I felt I could talk to and be comfortable around and then I had others that seemed to make things a lot harder for me and other patients.

I complained to visitors at the time about how I had been treated by some nurses and because I was so unwell I think my visitors just assumed I was taking things the wrong way.  I'm better now and capable of looking back and I have to conclude that, at least with some of the things that were said or done to me, there where times when I was not treated in an kind or respectful manner and I witnessed other patients being talked down to or neglected.  It is especially difficult when a nurse is nice and friendly to a persons family and then when visiting stops they become a different person.  Please listen to your loved one if they tell you something is not right on the ward.  You are their advocate and they are relying on you to help them.  There is very little power to the patient when they are in hospital.

To give an example I was feeling very suicidal at one point during my stay and decided I could maybe try and talk to one of the nurses.  I had an opportunity to talk to one when he was giving me meds.  After I told him I felt a strong urge to end my life his response was "don't even go there again." The nurses are paid to be there to talk to us about things like this.  I was actually reaching out rather than holding it all in which is a sign for me that I am recovering. His reaction set me back and just made me feel like I couldn't talk to anyone again, which resulted in me feeling even more suicidal.   

Another example is one I'm not proud of, but think its important to share.  I tried to kill myself on the ward (I won't say how because I don't think its helpful to give people ideas), it may not have worked easily to end my life, but it definitely had to ability to really hurt me.  I had my own room at this point and so I did this in my own room away from other patients.  A young student nurse walked in on me as I was doing it and was able to stop me.  I was then told to go and sit in the communal area where nurses could see me.  There were other patients around.  An experienced nurse who obviously had heard what happened came marching up to me and said, "Well that wasn't very creative was it".  I didn't even realise at the time how inappropriate a comment like that from a nurse was.  As I got better I was able to see that this is not a respectful or dignified comment. nor was it helpful.  He was mocking me.  If you know a person is suicidal, has tried suicide or self harm, please do not mock them.  Don't assume they are just attention seeking.  It is hell to feel so bad that you want to die, and people being unkind on top of that just makes it extra hard.

11 Discharge

Depending on how long you have been in, and sometimes it doesn't have to be more than a few weeks, discharge is not always an easy thought.  It's rarely the case that a person is completely well when they are discharged.  Usually it's a case of the person not being a danger to themselves or anyone else, and able to self care enough that they can go home.  They may still have depressive symptoms, they may still be hearing voices, it's not a case of being completely well and back to normal for most.

It seems from talking to people that discharge happens in different ways.  For some it's sudden, for others very gradual with lots of over night passes.  I prefer a couple of over night passes, then discharge. I don't like to draw it out, and my doctor seems to agree that for me that's best. 

Coming home is difficult because for weeks, or maybe months, your loved one has not had much responsibility, either for their own care or for the care of others. There has been support available 24/7 and the hospital routine tends to be very rigid and people get used to that.  Go easy on your loved one, they will need a few days, up to a couple of weeks, to adjust.  Help with things like cooking and tidying, going shopping, and other everyday tasks.  If you live with them it helps to have things tidy and organised, so they are not overwhelmed when they get home.  The easier it is for them to adjust slowly, then less chance there is that they will have to go back in again soon.  If they have children make sure they are getting breaks from childcare, and time to themselves to sleep and rest.  Support them along to appointments and be involved with their nurses/support workers, or whoever else is involved in their care.  Remind them that they should take medication.  The more proactive you are to help, the easier it is.  I am very lucky that my partner, and the people around me, help a lot when I am discharged.  I have Rick who always makes sure the flat is nice and tidy, and he is very proactive in my care and staying well, and my Mum is brilliant for taking me out for shopping and having company through the day.

I hope this blog helps even one person think of something they can to do help their loved ones.  Partners, husbands, friends and family, you all have so much power to make it easier and less scary.  When I look around me at the people I know who have mental illness it's very often the people with good support who do the best in the long run. 

Feel free to write any comments of anything you find helpful from your experience, or your loved ones experience, and also I am up for suggestions for future blogs.

Peace and love,

Jools

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