Dear Sunny

Dear Sunny,

Now that you’ve gone I feel very sad. Your brother Doyle is also sad. The little sociopath cat Pauli doesn’t seem to care but I guess he misses you in his own way. There is a big Sunny-shaped hole in our hearts. I wanted to write this letter to you to tell you how much you are loved and how missed you will be.

When I decided to get a dog I was young myself (for a human). I was only 21, which is barely an adult. I bought my first little flat and I knew I had a safe place to live for a long time, and so it was time to do what I had promised myself I wanted to do for forever, and adopt a dog. I didn’t want to go to a breeder and buy a puppy because I knew that there are lots of abandoned dogs needing a home, so I decided to go to the Edinburgh Cat and Dog Home to look at all the homeless dogs and give one of them their forever home. I went with my friend to the Cat and Dog Home, and in my mind I was thinking I’d get a small, older, female dog. I was open minded though to whatever dog I made a connection with.

The lady at the Cat and Dog Home showed me all the female dogs and all the male dogs but none of them were the right fit for me. We had three cats already, and so the dog we took home had to be able to live alongside cats. When we had seen all the dogs and there was nobody we could adopt I was ready to go home and try again another time, but the lady said that there was a puppy and would we like to see him. I hadn’t planned on adopting a puppy, I had no experience with dogs, let alone puppies, but I thought I’d go and look at him anyway. On our way to the puppy house the lady warned us that you were a handful. You had been an unwanted Christmas puppy and that you nipped when excited, that you had already had four homes before the age of ten weeks and just kept getting brought back. She also said that you were very full of energy and needed a lot of training and patience. She made you sound like a nightmare. She also said it was likely that you would grow to be quite a big dog, not what I had been looking for at all! I was thinking I probably couldn’t cope with you, but then when we got to the puppy house and I saw you I instantly fell in love. You were gorgeous and super cute. You ran to me straight away and tried to climb over my head! You gave me lots of excited little licks and I instantly knew you were the dog for me. I decided there and then to give you your forever home, and when I said ‘forever’ home I meant forever. No matter what, I would never give up on you. I didn’t take you home that day but I went back for you the next morning and we took you home. I don’t remember ever feeling as happy as I did back then taking you in our friend's car in a little plastic box, and I remember I brought a teddy for you to snuggle on the journey home, but instead you destroyed it in seconds!

They said your name was Rocky but I never thought it suited you and I wanted you to have a fresh start, so we decided to name you Sunny because you had such a bright personality and because your fur was golden just like the sun. Also you seemed so full of joy to be coming home with us. I also remember you had silky very floppy ears and massive paws!

It didn’t take me long to work out why you had been brought back four times. Honestly, you were a nightmare! You just destroyed anything you could. I had to take you everywhere with me in the flat because even if you were left for one minute you’d destroy something. You were hyper and I had to take you on lots of long walks and runs to try and calm your energy. I remember coming home from work one day and you had destroyed a huge tree that we used to have in the living room. I feel guilty now because I felt angry at you and I told you off quite badly. No matter what, though, I was determined to keep my promise that with me you had your forever home. We had a dog trainer when you were two telling us you were untrainable and should be put to sleep. I didn’t listen to him. It took you a long time to get the hang of toilet training. I had never had a dog before, let alone a puppy, and everyone kept telling me different things that I should be doing to teach you. It took two years! When you got there, I remember feeling so proud of you.

When you were two I adopted another puppy, a Staffy, whom we named Doyle. We were a bit worried about how you would react to Doyle, but you loved him straight away and very quickly you became best friends. From then on you and Doyle were barely ever apart. You did everything together, ate, slept, went for lovely walks, played with the ball, and snuggled. Doyle was your little brother and you really loved him. Now Doyle is missing you terribly but I hope he can sense that you are watching over him.

We went on many adventures. One of your favorite walks was through Colinton Dell, a beautiful woodland walk. You would paddle in the water and do lots of sniffing. One time you dropped your ball down a steep hill and chased after it, falling all the way to the bottom. I thought you would have really hurt yourself and was really worried but you just bounced back up and were luckily fine. Sometimes I would take you to a place we called the Happy Hill, and I would sit on top of the hill when you and Doyle played. When you were younger we would throw the ball all the way down the hill and you would have endless energy to go fetch it and bring it back. When you got older we sat together just being outside and enjoying each other. One of your last ever walks was a slow walk to the Happy Hill. We also had many walks along the canal and in fields so that you could run free. You also just loved snuggling up at home for cuddles and getting treats. Caroline, our dog walker, would take you out sometimes and you loved that too, lots of sniffing, you loved to sniff everything. She also loved you and was very sad that you would have to go to the rainbow bridge.

One of the things you liked to do most was swim. There have been many walks along the canal were you have jumped in for a swim. You also loved the beach and getting into the sea and having a little swim. You hated baths, though: you much preferred the manky water from the canal than a clean bath! You loved your ball and playing fetch, though you weren’t always great at giving the ball back once you had it! When you got older and sore it was hard to stop you running after balls, because you’d be so excited to see them that you would forget that you were older and sore now. I have so many pictures of you with a ball in your mouth. You loved to carry one back after a play but you always knew to give the ball back once we got home.

As you became an older dog your hyperactiveness disappeared and in its place came a very calm, dignified wolf. You became super gentle and sensitive. You were always loyal to me. I was often unwell myself because of depression and my mental illness. Many, many times when I considered suicide you would come to me with your sad eyes and nuzzle into me and I couldn’t do it because I knew I was your Mum and you needed me. You saved my life more than once. Sometimes when I was manic I’d take you for walks in the middle of the night. I’m sure having you there kept me safe. You would follow me from room to room; even when you were old and in pain you wouldn’t want to be apart from me for long. I would get frustrated at you and tell you to go lay down in one place but you would insist on getting up and following me from room to room, despite the fact that getting up and down caused you great pain. You weren’t a good guard dog though. Managing to sleep through a break in! That didn’t matter to me though. You were my best friend, my baby, my companion.

We celebrated 14 birthdays with you. Even though I knew that 14 was very old for a German shepherd–type dog I wanted even more birthdays with you. I wanted you to be around for a very long time because I loved you so much. Sadly being 14 means you were indeed very old. I could see that you were tired and I could see that you were in pain. I kept trying to fool myself that you were okay, but in reality you were in constant pain and your hips kept giving way on you leaving you lying in a very uncomfortable painful position. I’d pull you back up, which hurt you more. I noticed that you had stopped wagging your tail and that you were often panting heavily and pacing about in pain. We took you to the vet lots of times to get medicine to help you, and I was so sad when the medicine didn’t work, because I so badly wanted to ease your pain and keep you here with me longer. I think that was a bit selfish of me because you didn’t deserve a single moment in pain. Towards the end it was too difficult for you sometimes to even get up and poo or wee and you were just doing it lying down and looking really sad. I had to clean you up with baby wipes and reassure you that you weren’t in trouble. In the end I had to make that horrible decision that no dog parent ever wants to make that it was time for you to go across the rainbow bridge and be free of pain.

You always hated the vet but on the day you passed you didn’t fight at all. Our very kind vet agreed with us that it was time and she could tell that you didn’t have long anyway because your blood pressure had dropped seriously low. She gave you some medicine that would gently make you go to sleep. I sat on the floor with you stroking your head and under your chin just the way you always liked it and you lay down with me and drifted off into a very deep sleep. Howard was there stroking you too. You knew at the end how loved you were. Before you died the sedation made your body totally relax and the vet said that you weren’t in pain anymore. You died very peacefully knowing how loved you were.

I will miss you forever. Doyle is very sad to have his brother gone and I’m trying to give him as much love as possible so he feels loved. I’d do anything to have you back and I hope wherever you are now you are not in pain anymore and can run free and chase balls just like you love to do. I hope one day you come back to me, in another life or another form. The flat feels emptier and to no longer having you under foot and a tripping hazard is strange. I couldn’t even go to the toilet without your wee face popping through the door! I hope you are at peace and free of all your pain. I hope you understand why I let you go and that you know how loved you were. I miss you, dear old wolf, and I think I’ll always miss you. Thank you for giving me an amazing 14 years it was an honour to have you as my dog.

Let's talk about rape

I want to write a blog about rape, something that’s deeply personal to me. I’m very cautious about writing this because it’s something that just in general isn’t spoken about. It makes me feel very vulnerable, so please be kind. I think though that talking about it is important, so more women and girls can realise that they are not alone, that there are ways of coping with it and that life can get better. Some of you will know I have been sexually assaulted and raped over a period over my formative years and that it has had a profound effect on my life, outlook and mental health. However I feel I have taken lots of steps to overcome some of the obstacles that I’ve had to endure. I want to write some facts about rape and try and clear up a few misconceptions and hopefully give a little bit of knowledge about how to survive it, or how to support someone through it. Please note that I am writing this from the perspective of a woman or girl, because that’s what I know.

Fact 1. Most people know their rapist and many are groomed

I think when people imagine rape they imagine someone being grabbed on a dark night by a random man they don’t know. That happens but very frequently the woman/girl knows her assailant. Often she is groomed and very frequently it’s a primary caregiver. Being groomed is a process that can start young, is subtle, deceptive, and cruel. It makes you question everything your instincts tell you and it leaves you feeling tainted. Rapists may say such things to a child as: “You sat on my knee today and you bounced about, you wanted this.” “What would your Mum/Gran/teacher/sister think if they knew what you were doing now, you’d be in big trouble.” “Little girls like you get sent to children’s homes.” “You are scum for doing this, nobody would want you after this.” The main theme in my own experience was that I would be the one who would get in trouble if people found out.

Grooming in adulthood could consist of a rapist/abuser saying “If you love me you’ll do this.” “I just got carried away.” “You put the idea in my head by telling me not to do that!” “I’ll tell everyone you’re a whore if you don’t do this.” In both cases often it is wrapped up and disguised as a gift of love.

The abuse can often be subtle. It can creep up. It can start (in childhood and adulthood) with some inappropriate touching and very gradually build up so that by the time you realise that something very wrong is happening, you don’t know how to tell, because it’s gone on so long and how do you explain? Imagine being eleven and having to explain to your teacher/parents/grandparents that you think that someone is having sex with you, when just thinking about it makes you feel dirty. So it becomes a shameful secret. As an adult that kind of grooming can leave you feeling like it’s your own fault; in childhood, it’s even worse. In both cases all the shame that should be on the rapist/abuser is placed on oneself. It makes you feel like you gave consent even when you didn’t. Both types of abuse make you feel like it’s your own fault. Sometimes it starts so young that you don’t even remember it starting. It’s just something that has always happened and you don’t realise it’s wrong until it’s far too late for you to feel like you can do anything to stop it. Always, adult and child, with grooming it’s extremely difficult to tell anyone else what’s going on because there is so much shame.

Fact 2. Once it’s happened once, it is far easier for it to happen again

It’s true that children who are abused often go on to be adults who are abused. I have experienced sexual abuse in both childhood and adulthood. When I was an adult I fell into a relationship with an abuser. He made me think it was love. He told me that he had to warn me that once he started having sex he couldn’t stop so that if I consented to have sex with him I couldn’t stop it once it had started. Naively I thought this was okay, after all, men have always been unable to control their sexual impulses in the past and being forced to do things was the norm. I ended up in frequent situations with this man when I would be pushed into violent sex with him, where I’d beg him to stop and he would continue hurting me until he decided it was enough. He would even violate me by taken condoms off during sex without my knowledge. I had been groomed in the past to accept this kind of behaviour as loving. I felt that it was something in me, or about me, that made me turn men like this, rather than it be about them and what they do.

Fact 3. Rape and sexual abuse affects mental health

I remember aged eleven finally realising what was happening after having sex education in school and the topic of abuse being covered (not very well, I might add!) The reality of my situation really hit me. I still didn’t feel able to tell anyone what was happening and I just felt disgusted, and that disgust was turned inwards on myself. I remember the first time I self-harmed. I was doing homework, in which we were doing something with a compass. I remember dragging the compass along my foot – not hard enough to cause serious injury but enough that it bled. It felt like a relief. It felt like a punishment for being so dirty. From then on I self-harmed off and on. It started of with little cuts here and there where nobody would see. I would also bang my head against the wall and make myself sick. The sickness was to try and get the thing out my body that felt disgusting. As I got older and left home (at 16), I started to self-harm more often and cause more injury with my cuts. Now, aged 35, I have scars all over my body. I’ve cut to the bone. I only stopped cutting when, aged 31, I met Howard, and still even now I still think about it – not every day any more, but whenever I dwell on the rapes I get a strong feeling of disgust at my body and I want to hurt myself.

It’s no secret that I have a serious mental health condition. Would I have it if I hadn’t been raped? Nobody can know for sure, but the way my psychiatrist explained it is that some people have a genetic predisposition for some kinds of mental illness. Some people go through their lives and it’s never triggered but others have trauma or other stressful events and their mental illness is activated. Having PTSD is also a common reaction to rape and abuse.

I’ve been in the psychiatric hospital so many times. It’s amazing how when talking to the other patients the subject of rape pops up, and it’s no coincidence that many women that I have met through hospital have gone through rape and often childhood sexual abuse.

Fact 4. Women who are raped are often afraid of men

I am very afraid of men. I view every man as a potential rapist. In particular I am afraid of the penis because a penis has been used as a weapon that really hurt me. I am very rarely alone with male friends. When I go on dates the fear of being raped is at the forefront of my mind. Sometimes I can be reckless and put myself in positions where I might be abused (this depends on my bipolar), while at other times I’m extremely cautious. Usually I do pursue relationships and try and act like a “normal” person would, but at the back of my mind I think “he’s going to rape me”. I am anticipating it often years after I’ve been in a relationship with someone. I would say with Howard it really only has been this year that I fully trust him never to hurt me in that way. It’s extremely frustrating for my male partners to accept that I expect that at some point they will do this.

I have never been grabbed in the street and raped by a stranger. However I know that this can happen and I believe that most men are potential rapists, so I walk alone at night with my keys in my hand and with my phone ready to dial for help. My startle response, my fight or flight reaction is very high. I panic if there is a man walking behind me when I get off the bus at night and have to do the short walk to my flat. I am terrified of that happening. When I sleep alone in my flat I am afraid that a man will break into my flat and attack me. I am afraid that my past abusers will show up and hurt me all over again. I cannot go through that again. It would destroy me to have to go through that again.

Fact 5. A woman/girl can orgasm during a rape

This is something I find really hard to talk about but not enough people understand this so I am pushing myself to share. I had orgasms during my rapes. I had mini orgasms when I didn’t even know what an orgasm was, and when I realised what was happening I felt extremely distressed. This does not mean I “enjoyed” being raped, just more that my body reacted to the stimulus. If someone forced me to sniff pepper the chances are I would sneeze even if I really didn’t want to sneeze. This response is very similar. I have spent literally years feeling disgusted with myself and shameful about this. When I was old enough to realise what an orgasm was and what was happening to me I just felt disgusted. I remember his face up close to mine and him whispering “You want this, you’re enjoying this”. I would lay silent. I would try not not react to the sensations in my body. It made me hate myself and hate my body.

Now years later in my thirties I realise that it’s not abnormal for this to happen. There are many other women out there who have similar experiences to mine. My therapist was very reassuring about this – that it’s normal and common and it doesn’t make me disgusting or dirty, so if you have been sexually abused/raped and experience an orgasm, you are not dirty, you didn’t want it to happen and you are not tainted and the shame is on your rapist.

Fact 5. Triggers

I know that “triggering” is a word that is overused, but when you have gone through something as traumatic as rape or sexual assault there really are things that can be triggering. What I mean by triggering is that it provokes an extreme negative feelings. If I have been triggered through the day then I will more than likely have a flashback in the night, in fact just writing this blog slowly, bit by bit has caused me to have more flashbacks. I am sitting here in my kitchen writing this and having feelings of loss, shame, disgust and worthlessness. Logically I am in a place now where I can rationalise that I am none of those things, but the feelings are so ingrained and so powerful that despite my logic and the logic of people close to me I still feel it.

I can be triggered by reading about rape and sexual assault, seeing films, images … I have to be very careful what I expose myself to. Some days I can handle it a bit better than others. It depends on my mental state how much such things trigger me.

Fact 6. Flashbacks

Many people who have been raped/sexually abused will complain of having flashbacks. I have flashbacks. For me they present as nightmares, but unlike other dreams that are abstract and vague, these flashback nightmares are almost exactly the same as my memory of what happened. I often wake up screaming in the night thinking that I’m being hurt again. If someone is with me I can calm down, but if I’m alone I feel very afraid, with a ton of adrenaline running through my body and my heart pounding. Sometimes I feel like I can’t breathe properly and that I’m going to die or I’m being choked. My psychiatrist has recently prescribed me some diazepam for nights I can’t settle. Talking to the therapist in hospital about the details of the abuse has meant that whereas I used to have flashbacks a few times a year, I am now getting them a few times a week. On one particular night when Howard stayed over I had about ten in a row. I would wake up frightened and panicking and then go back to sleep, only when I fell asleep it would start again and I would wake up, rinse and repeat. On nights like this some diazepam might help.

For those who really struggle with flashbacks constantly in the night there is a medication available that really helps to stop them. For the moment I’m waiting to see what happens and not pushing for extra meds just yet. I have a feeling now the therapy is over they will settle back down. I’ll evaluate in six months. The diazepam might be enough, even knowing it’s there if I need it somehow helps.

Fact 7. Stolen innocence

One of the things I have heard around child sexual abuse and rape is the idea that the perpetrator “stole the child’s innocence”. Let me make one thing clear. Children are always innocent. I was innocent and even if they have been raped and abused multiple times, even with multiple abusers the child does not lose their innocence.

The whole idea of virginity really gets to me. I remember being a 17-year-old teenage girl and having my first boyfriend. For the first time ever I was enjoying my sexuality and exploring. When people found out that I was fooling around with him (not even full sex) I would get lectures about how I should keep my virginity for the right man/marriage, that I didn’t want to “lose my innocence or purity”. Imagine how that made me feel at the time! It made me feel sick to my stomach because in the conventional sense my “virginity” was taken long ago and not by choice. It made me feel even more tainted and dirty. As an adult I feel awful when people talk about losing their virginity because I never got the chance to choose my first experience and my first experiences were just ones of fear and confusion. I like to think that my experiences with my first ever boyfriend at 17, when I was sexual for the fist time through choice, was my awakening into womanhood and sexuality. The thing is, the concept of virginity is flawed. All it is, is experiencing something new for the first time – no different from riding a bike for the first time, or kissing someone for the first time or having pizza for the first time. The pressure around virginity is ridiculous and for a long time the idea that my innocence and purity had been stolen from me really disturbed me. I felt I was lacking something that other girls had, that it made me unworthy of love. What happened to me was wrong but it did not lower my value as a person. The only people that are tainted by rape and child abuse are the perpetrators themselves.

Fact 8. It is very difficult to tell people that you were raped/abused and even harder to report it

I kept my secret for a long time. When I was 17 I told someone (my boyfriend at the time) that something had happened. I kept it vague and I really played it down. I told him out of necessity because sometimes the sexual things we were exploring in a healthy and consensual way were triggering me and causing me to get upset and he needed to understand why. He never pushed me for details and I never told him who my abuser was. In my twenties I told some people close to me what had happened and got some negative reactions of people not believing me or just cutting off contact. It’s only really Howard who knows almost all of the story. It’s very hard for me to talk about this so publicly on my blog. I still feel so much shame, I’m aware though that by talking about it in an open and honest way it might help someone else that’s gone through it. I am finally starting to learn that the shame doesn’t belong to me, that I have nothing to feel ashamed of, it might just take a while for my heart to catch up with my brain.

When I was in hospital for five months and undergoing psychotherapy the subject of reporting my abuser came up. For the first time ever I seriously considered it. I looked into it though and I realised that unless someone else came forward then it would be my word against his and I’d likely go through the ordeal of reporting it without him being found guilty. They would rip into me, bringing up my mental health, past sexual behaviours, anything they could use against me would be used. I’m not strong enough for that, when the chance of getting a conviction is small. I would also have to tell every single detail to strangers. My entire family would learn the details of what actually happened and I’m not able to cope with that, not without becoming seriously mentally ill again. Also my abuser puts on a very happy, normal front to the world. There will be people who take his side against mine. It’s not something I’d say I would never do. If someone else came forward I’d certainly back them up, but now is not the right time for me to be making this kind of move, not when I’ve only just gotten reasonably well from a mental illness that has plagued me for ten years.

Sexual assault and rape are one of the hardest things to go through and overcome. It’s taken me 15 years to slowly begin to heal and stop blaming myself. I still need Howard to remind me that it wasn’t something I brought on myself. I still think about it and think, was I abnormal? Did I want it somehow? Does it make me dirty, spoiled, ruined, impure, disgusting? I still get times when I feel disgusting, like there is something dirty on or in my body that I need to get rid of. That being said there are more frequent times when I feel strong, proud that I survived that and that I’m still able to have normal functional relationships. There are more moments now when I think that it wasn’t my fault, that the shame isn’t mine to bear, and that I can move on with my life and heal.

I will be happy to talk to anyone who reads this who has experienced these types of things and wants to talk. Writing this has been scary but empowering. I am still very nervous of people’s reactions. As always any and all feedback is welcome, and I am happy to answer any questions.

5 things my autistic, bipolar, brain has learned about love

I started to write a blog about self harm. I can’t do it right now. It was dragging my mood down and I was getting urges to cut again, I was thinking what the fuck! I’m doing so well at the moment I don’t need to be thinking about this. I will complete that blog but a little bit at a time and when I know I’m mentally strong enough to be thinking along those lines and racking over all that stuff. I’m sure people understand. I want to write more mental health blogs but at the same time they are hard to write. They remind me how desperately ill I’ve been and it scares me because at any time I could be back in that position. Saying that, I think that the next blog will be mental health related.
So… I wanted to write a blog about something positive, something uplifting and that I would enjoy writing about. I want to write a blog about love. Mainly romantic love and what that means to me. I believe I think differently about love than others. Maybe my autistic, mentally ill brain just views things differently, plus the fact that I’ve only ever been polyamorous, I think I have a unique perspective on love and I thought it might be nice to share that with you all. So this blog will be ten things I’ve learned about love.

1 I prefer love that develops slowly.

This isn’t for everyone. I know everyone likes that rush at the start where you are infatuated and the new relationship energy is intense, almost overwhelming, but what I’ve learned (the hard way sometimes) is that to let things grow slowly works better for me. With some of my exes I’ve rushed in. Saying I love you within two weeks, making massive commitments at an early stage. It’s all so overwhelming and exciting and yes it feels amazing at the time, but when you want to build a relationship that’s very strong I’ve found moving slower is often just as incredible but in a different way. I understand that there are people who have successful relationship who did start the fast intense way, please know that I am not saying your relationship is invalid or worse. It’s just me, my autistic, bipolar, brain needs to go slow. There is a lot about me that potential partners need to get to know and understand, and it takes me time to pull down my defences.
When I rushed things I felt that the person almost fell in love with the idea of me, and me with the idea of them, our own idea but not actually who we really are. This meant a few years down the line when we did get to know the real people it was a bit of a shock, and because of my issues probably especially a shock for them. I am hard work, I know this.
With my current partner we took things very slow. Yes I felt infatuated, I had the rush, I had the new relationship energy and I felt it, I acknowledge it and I let it flow over me in a way that was enjoyable but not overwhelming. Howard will tell you that I was very honest about him from the start about what a fuck-up I am. I almost tried to put him off. I let him get to know all the bad early on. I remember we didn’t see each other a lot. Once every couple of weeks for a while, then weekly, then twice a week, then a bit more. It was all very gradual and safe and after everything I have been through I needed that. I remember after four months thinking to myself, I might be in the early stages of love with this guy. I didn’t dare say those words until we had been together for six months and even then I was apprehensive. Fortunately Howard is very sensible and careful himself and he was happy to take things slow and in fact encouraged me to take things slow and I think it’s the best decision, because when we did start telling each other that we loved each other, it was the right time. We knew enough about each other, the bad bits and the good!

2 Don’t make commitments lightly.

I have rushed into commitments with partners in the past far too often. Moving in together, having joint money together, getting engaged, (I have been engaged an embarrassing three times) all of those times early on in the relationship. In all those cases the idea of marriage was actually a bit scary and so I always put off planning weddings and inevitably we would break up. In my relationship with Isaac there are no commitments and at the moment there is no plan to have any. I think this is amazing. We can just be together for the sake of being together! It’s free, we don’t have to worry about money, housework, planning a wedding, any of those things. People might think I love him less because I’m not “committed to him” but actually I love and value what we have a great deal because it’s just pure joy and fun and very very loving.
With Howard we have commitments but the came about after three years of being together. He is committed to being my named person which basically means he has responsibilities around my mental health. He owns half my flat. We have financial commitments together connected to the flat. We have now, four years in, made a commitment to be together both in the short, medium and long term future. It doesn’t matter if we can or cannot get married; I plan on growing old with this man. He won’t get rid of me easily now. I may well still be with Isaac in the longer term too, but it’s just different and things change and evolve in unexpected ways. I certainly when I first started dating Howard didn’t expect it to get so serious.

3 The trajectory of the relationship doesn’t have to be the norm for it to be valid.

I used to think that I would get engaged, buy a flat, get married, have a baby or two and live happily ever after. My life didn’t pan out that way but I’m happy. Nothing has to be done at a set time or in a set way. Some people do all things the traditional way and are happy but many are not and divorce and custody battles are very common. I am happy with things transpiring the way they do for me, in an unexpected but often joyful way. We are polyamorous. My partner is separated but still close with and married to someone else. It doesn’t mean though that the commitments we have made aren’t solid. I would love to get married because I like the idea of the security it brings and I think with Howard I would actually go through with it! However, I’ve learned through my life that things not working out exactly how I want isn’t always a bad thing. In fact, in the past it’s always twisted in a way that brings me more love. So I’m happy. We have something special we are doing soon as a way of promising commitment to each other and I’m looking forward to that a great deal.
With Isaac there are so far no long-term commitments. Every day I go to bed and he tells me he loves me, I think we have tomorrow and I don’t think much further than that. That doesn’t mean we never will but right here and now that’s how things are.

4 With all love there is sacrifice.

I think this is something I failed to realise in my younger years, that I couldn’t have everything I wanted, and that I would have to compromise. Also people should compromise for me! I think for a long time I was a doormat. So grateful that anyone wanted to be with me and that they put up with my autism and mental health. I’m not a doormat anymore. I state my wants and needs and I am assertive to try and work out ways (even unconventional ways) that they can be met, but in return, I also expect that I too will have to compromise. With one ex I decided I didn’t want to be polyamorous anymore. He agreed and then in the end put massive pressure on me to revert back to polyamory. Basically if I didn’t agree he would leave me. I was so upset at the idea of losing him that I agreed. I think it was too big a compromise for either of us. I think we should have broken up there and then but we didn’t and as a result I met Howard and Isaac. I don’t regret it but I would never make such a compromise again.
With my current situation I would really like to live with Howard because it would be so lovely for us to have a home together. It’s not possible right now but there has been a compromise. He stays here more and we have more time together. He takes an interest in my flat and it kind of feels that we are creating a little space for us here for when he stays. He’s putting a lot of energy and resources into making our flat here nice. I don’t know what will happen long term but I have decided that no matter what I won’t end the relationship over it. If I deserve it and it’s meant for me then I think it will happen. I have much more time with him now than I ever had and that makes me very happy. I think we are at the next natural stage of our development and that things are exactly how they are meant to be. It feels right. Things have always moved slowly but that’s always been a good thing in the end!

5 It is possible to love more than one person romantically at a time.

It is, it is, it is! NO seriously, it is. Okay maybe not for you but for me it really is and only I know how I feel. I love both my partners so so much, but in very different ways. I value them both immensely and I don’t take either of them for granted. They are both very different people and we have very different ways of communicating, of being together sexually, of being close and romantic together, but I love them both. Some people might ask, equally? I don’t know. It’s so different with both of them. I think I’ve reached a stage though when I wouldn’t give up one for the other. Whoever tried to make me choose would lose. I’m not sure if I will always have two partners. There is no long-term commitment with Isaac and as much as it hurts I have to be aware of the fact that we might end. If we do end then I wouldn’t seek out a new partner but as long as Isaac is willing to be my silly, lovely, wonderful man then it will be the three of us. Now they don’t hate each other it’s even better!

I love the way I love. I think my heart is very open. I’m happy in both my relationships and feel very blessed. I think I only really started to love in a “mature” way when I hit 30. 2015 was a huge turning point for me. It had been the most horrible year romantically from hell, but meeting Howard in September was a real turning point for me. I think his calm steadiness was good for me. I wouldn’t change anything, even the painful bits with exes I had to get through to get where I am now. I like my life now. I wake up in the morning and I feel happy. I feel like there are prospects of things going even better. I think there is a lot of hope and a very positive energy around both my relationships and I feel for the first time ever my romantic relationships are healthy and I’m not being abused in some way, financially, emotionally, or physically. This is a good place to be!

Polyamory Q & A

I wanted to write something that wasn’t totally focused on mental health – something that shows I have more to my life than just schizoaffective disorder. I was thinking about what the other things are about me that are different and stand out, and the one thing that kept popping into my mind was the way I do love and polyamory. There are many people who don’t know how this works, or who might have misconceptions, so I’m going to try and break it down. This will be a balanced view though, both good and bad and also based on my experiences of doing egalitarian polyamory. The short explanation of egalitarian polyamory is that it is just polyamory without a hierarchy, so there is no primary or secondary and everyone is on an equal footing and nobody can demand that their needs come first: rather, each situation and need is considered in the moment.

How long have I been polyamorous and why did I become poly?

I started being polyamorous at the age of 21 in my first adult relationship. At the time though we didn’t know what polyamory was and so we just said we were in an open relationship, until eventually we stumbled across the term polyamory. I can’t remember when that was because I’m 35 now and this was 14 years ago!

I decided I wanted to have an open relationship early on because even though I’d met someone and we had bought a flat and were stable together (yes I really did buy my first home at 21), I was sensible and realised I didn’t want to miss out on the opportunity to experience love (and sex) with other people, also I didn’t want to break up from my then partner to explore connections with others. If I’m honest, it got off to a rocky start. I ended up sleeping with someone without getting my partner’s permission and that meant he felt I’d cheated on him. We worked through it though and got better at doing it the longer we practised. In the end we did break up, but our break up was unrelated to polyamory and more just that we grew apart as a couple who got together very young. I don’t regret my time with him, though, and I learned a lot from our relationship and our polyamory.

When do you tell potential dates that you are poly?

I am completely out as polyamorous so I tell people straight of the bat, before they are even potential dates. In my dating profiles on Tinder and OkCupid it says that I am poly in my profile, and I double check that potential dates have read my profile and understand what polyamory is before anything progresses any further.

Are all my partners also polyamorous?

At the moment neither of my partners is in a romantic relationship with anyone else. One of them (my longest-standing partner) does identify as poly and the other one is open to explore it but isn’t sure yet. It is possible to have a monogamous person be in a relationship with a polyamorous person, but they have to be accepting and able to handle their partner dating other people, and this I imagine would be very hard for someone who is mono. However I am not saying it can’t be done because I have heard of people making it work.

Would you ever just have one partner?

I am at the point in my life where I really would quite like to ‘try’ monogamy. I don’t regret the years I’ve been polyamorous. I’ve had some wonderful life experiences and I wouldn’t change a thing! It is a joy to be polyamorous and to have so much love in your life and heart. I’ve found the freedom to explore any relationship that develops incredibly freeing and amazing. I wouldn’t be with Howard (my longest-standing partner) if I hadn’t embraced polyamory, however, polyamory is hard work. There are so many people involved and everyone's needs and feelings need to be taken into consideration. For the simple reason that there are more people involved, it is often the case that someone gets hurt. Often that person has been me, but also I have (recently) been the cause of someone else's heartache, and this makes me feel so so bad. I am now at the point where trying monogamy is something I would really like.

People reading this have to remember though that I have never had a monogamous relationship in my entire life. I have no clue if I would be capable of it. It feels alien to me. For me it’s very appealing to give it a try but I don’t really know how to go about it! For example, at the moment I’m with two men. One relationship is more serious and committed and the other one is more free and fun. I can’t imagine giving up either, so I’ve decided to just keep things how they are just now and watch what develops. The idea is not to add anyone new. Right now things are kind of in limbo. I know it’s likely to change and resolve at some point but I have no idea what’s going to happen. The short answer is yes, I would like to try monogamy.

Would I ever consider getting married or having children?

I would love to get married, it would be every dream I had coming true, but it’s so very complicated. I would also consider having a handfasting, and have spoken about it, or even just a commitment ring would make me happy. Right now I’m just happy that things have worked out so I see Howard (my more serious partner) more often than I ever have before. Since getting out of hospital I have seen him lots and it makes me happy to have him spend extra nights at mine, and see him much more than I used to (that in itself is a dream come true).

At some point in the future I would love to just live with Howard. He knows how I feel about this. I don’t know how to make that happen, or how things are going to develop with the changes that have already come about. I’m in limbo and I may stay in limbo for some time. What I have decided is that even though many people would just walk away and “find somebody else” if living together or marriage were possibly not going to happen, I will not do this. It’s easy to be impatient and demanding if things aren’t progressing as quickly as you want, and at the speed you want, however, I’m not going to do that. I think even Howard doesn’t understand just how much I love him, and how good for me he is. If I only get more sleepovers with him for now then I’ll take that because I want to stay in a relationship with him because he makes me happier than any human ever has and also because I feel like he looks out for me. The only thing that would make me leave him would be if he started treating me poorly, abusing me (mentally or physically) or gaslighting me. He is unlikely to do any of those things though and the truth is nobody in my entire life has treated me with so much love and kindness. I think the relationship I have with him is very special and that those kinds of relationships don’t come about very often, so I’m completely committed to him. For me it’s a once in a lifetime kind of love. I’m committed to be with him for life and I don’t need a piece of paper to know that this is what feels right.

As for having children, I am infertile due to my endometriosis and I also have a very serious mental health condition, plus autism. I simply don’t think it would be a good idea for me to have a baby. I’d need IVF and I just don’t think going through that would be good for me. I have to make and find meaning in other areas of my life. It’s important to note that many polyamorous people do have children and it seems to do no harm to bring a child up in a polyamorous family. In my opinion, it just means more parental figures to give love and support to the child.

Isn’t polyamory just cheating?

No, no, and NO! Polyamory is not cheating. There should be no lies and no deceit. I am always upfront and honest with any partners I have about who I’m in a relationship with and who even I would like to explore a connection with. They do the same for me. Polyamorous people have to quickly develop good communication and listening skills. Those skills I’d also put to use in any mono relationship too, because good communication is important in any relationship, especially romantic ones.

Do polyamorous people get jealous?

I can’t speak for every polyamorous person but yes I get jealous and from my experience most poly people do. Not even just a little bit. I have experienced crazy, heart-wrenching, gut-churning, sobbing kind of jealousy. The key difference is how I deal with jealousy. Rather than leave my partner(s) or demand they never do anything that might make me jealous again, instead I wait for it to pass (and yes there are times when I’ve been dramatic about it!) Once it’s passed or at least once the intensity is not so strong I evaluate it and I work out what the underlying cause of the jealousy was. Jealousy rarely comes on its own, usually there is an emotion in the background. So a feeling of inadequacy, a feeling of insecurity, of not feeling good enough, of not feeling special enough to my partner, etc. I never hide the fact that I’m experiencing jealousy. As soon as the opportunity arises I tell my partner “this is how I’m feeling, can we talk, can we reconnect”. Then I talk, and talk and talk. I write it all down. I exchange messages because sometimes for me writing is a better way to communicate. If during the initial period I was unreasonable to my partner, I apologise and we just keep talking.

Not only do I have to deal with my own jealousy, I have to deal with my partners’ too and my partners’ partners’. It goes on and on and on through the chain. When I say you have to communicate in order to be successfully polyamorous, I’m really not joking. It requires a level of openness that, if I think about it, is frightening, because that level of honesty leaves me very vulnerable. Some people might say my Asperger’s might make me poor at communication but actually for me it’s the opposite. I don’t have the ability to hide my emotions and I am very blunt, so I am a very clear communicator. I don’t play games. If you are the type of person that does play games you need to stop that if you want to do poly successfully!

“Isn’t this a lot of work?” Yes it’s a hell of a lot of work but it’s also very rewarding, to grow and develop and move on as a couple whilst creating new relationships and bonds. Yes it is hard work and no it isn’t easy. I’m not going to sugarcoat it and tell you it’s all love and roses. Your life can be full of love but you will experience some difficult emotions and at times you will be hurt, and likewise there will be times you accidentally hurt others.

Can polyamorous relationships be successful?

This all depends on what your view of successful is. If you mean to last till “death do you part” then yes that can happen but that’s not the only way things can work out and that doesn’t make the relationship any more or less valid. This might not be a popular opinion amongst my fellow poly friends but I do believe that poly relationships are more likely to break up at some point. Hear me out! That does not mean the relationship failed; it just means that the relationship has changed. I often remain friends with my exes. I currently live with Rick, with whom I had an eight-year relationship. We are more like brother and sister now. I don’t feel like our relationship failed at all. I feel like we explored and learned a lot about each other and ourselves when we were a romantic couple but that we are meant to be more like brother/sister now and that’s okay. Success also doesn’t mean never hurting each other. The truth is we all hurt other people and it’s usually unintentional. That doesn’t invalidate the relationship and especially if you learn to forgive and move on as a couple or as friends then that is meaningful.

Is polyamory about sex?

Yes (for some people) and no (for others). It tends to be more about love but obviously sex plays a part. For me it is partially about sex. I love sex and I think of myself as an ethical slut but if I only wanted to have sex with lots of people I could just as easily try swinging. I enjoy very deep connections as well as just sex. There are people who don’t enjoy sex at all who consider themselves polyamorous. People also assume I’m having lots of group sex. That is not at all the case. I’ve tried group sex a few times and it’s usually not been all that satisfying, so nowadays for me sex is just between me and one partner at a time.

The main challenge I face being polyamorous is scheduling. Making sure I see each of my partners enough that it meets their needs (and mine) and allowing for them to schedule in their other partners and time that’s important to them. Google Calendar has been my friend for many years now!

Even though I’m thinking of giving monogamy a try in the future I am in no way discrediting polyamory. It’s brought me so many experiences and developed me as a person. I wouldn’t change the past at all. I continue to believe that you can love more than one person romantically at a time. I will very likely continue to find other people attractive romantically and sexually even after I move into monogamy. It will be interesting for me to see how it feels to hold back and not act on those feelings. I will also continue to be honest about any feelings and attractions I do have and I would hope my partner will do the same.

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!)

Ten things I love after coming out the mental hospital

I wanted to write a more lighthearted blog, I feel my last one was a bit too serious (not many people wanted to read it!) I thought I’d write something a bit more personal – something not just about mental health but about me as a person and about where my life is now and where it might head. Also I wanted to discuss other aspects of my life, like polyamory (I’ve been polyamorous for 14 years!) So I’ll list ten things that are better since leaving hospital.

1. My depression has gone!

I have been depressed off and on since my late teens. However this particular bout of depression was particularly severe. I sometimes could put a face on and carry on like I was okay even if on the inside I basically felt dead, but the longer that went on, the harder and harder it became to “fake it till I make it”, and I started spending days in bed, feeling so disgusting inside that I genuinely felt the only way to free myself was to die. I seriously wanted to die: I planned it. I took an overdose (it didn’t work) so I planned to hang myself. I was prepared to go through the gruesomeness of hanging to achieve death, as I believed that nothing could feel worse than the depression. When I died I hoped I just wouldn’t exist anymore because existing felt too painful. The only reason that didn’t happen was because Howard stopped me, got me help and I was sectioned.

Now six months on I feel free. I am so very glad that he helped me. I was furious to be sectioned but it literally saved my life. That’s what sectioning is meant to do. There is not a moment that goes by that I don’t remember that I’m not depressed. I feel it’s important to fully comprehend that people who have serious mental illness are at risk of dying when their illness is at its most severe. When anyone with that kind of life-threatening illness recovers, they appreciate life in a new way. You never forget that you’ve been so unwell and you never take for granted the feeling of good health. Also you live in fear of it returning. If I feel even a little bit sad for a few moments I think “shit, it’s coming back” and it really panics me. It’s been 44 days that my mood has been stable; I fill in a mood chart so I can see how things are day to day. I don’t know how long it will last; in the past ten years I really haven’t ever felt this well. I hope it will last a long time but I’m making the most of every moment. I’m honestly not sure I could survive another bout of depression as severe and as long-lasting as that.

2. I’m seeing my partner (Howard) more

Without going into too much detail about Howard’s private situation, there were lots of changes for him when I was in hospital. It’s worked out that he now has more time for me. I adore Howard. I think that anyone who knows us will see that clearly. I have never in my life met a person that is so kind to me. He’s done things for me that I never imagined another human would ever do. For example when I was in hospital he visited me almost every day for the full five months. When he was tired and needed a break, he would only take one when he was able to arrange another visitor, making sure that I was never without a visitor even though I never asked this of him. As a result there was not a single day that I went without a visitor. I remember one time he told me that seeing me there was the highlight of his day, which kind of got through the depression and made me feel loved. Now I get way more overnight visits with him and see him a lot more than I used to.

The extra overnight stays are the best. I love going to bed with him and waking up with him in the morning. I love visiting him and being around him. Everything about him makes me happy. When he’s with me, I get a sense of calm in his presence that I’ve never had before. It feels like I’m home. I don’t want this to change back; I want to continue seeing him as often as I do now. I have never felt so happy and in love and I’ve never fully trusted someone to always have my best interests at heart. In the past my trust has always been broken.

3. Less anxiety

One of the things that I suffered from terribly over the past ten years is pretty extreme anxiety. I chart my anxiety out of ten, with zero being none at all and ten being that I’m so anxious I am at the point of vomiting. I regularly (once or twice a week) vomited from anxiety. Before I went into hospital it was daily. I never imagined my anxiety would ever be under control. However, on my new meds regime where I’m able to take a high dose of amitriptyline, my anxiety is under control for the first time in years. It’s so good to just relax! I have days where I get a bit anxious but usually it’s on the lower end of the scale and I now get times when I’m not anxious at all. So my anxiety is a zero on my chart. In the past this just never happened. It’s a very freeing feeling to not have that gut-churning anxiety all time time. I can be more social without freaking out beforehand that everyone hates me, and I’m not constantly worrying like I used to any more. In fact even though I do care what people think, it’s nowhere near as much as I used to!

4. Not sleeping all the time

This is huge for me, because for the past ten years I have slept so much. In my old routine I would go to bed by 10pm, sometimes much earlier, and regardless of how early I went to bed I would regularly not wake up until 11am or 12pm or even later. It wasn’t unheard of for me to sleep until 2pm. I was taking a drug called chlorpromazine and it was making me very, very drowsy. The sleepiness I felt invaded every part of my life. Mornings were lost because even when I did get up earlier I was thinking through a thick fog. I often woke up depressed, likely due to oversleeping and the drug itself. I could never plan a morning activity because I was always unconscious in the morning and it was so unpleasant to wake up early that I just refused to do anything before 12pm, and even 12pm was early.

So why did I continue to take chlorpromazine despite that horrible side effect? The answer is, I cannot sleep without night-time sedation. If I go even a couple of nights without sleep I get manic. My mania is severe and life threatening, therefore I had to take something to make me sleep. The only thing offered to me was chlorpromazine. I tried to take the smallest dose I could but I regularly needed doses of up to 200mgs per night. Chlorpromazine also dulls down all of your emotions so for me everything was muted, especially early in the day. I’d been on it so long that I’d forgotten what life was like without it. In hospital they started giving me amitriptyline which is sedating itself. That meant that once I got up to a higher dose I was able to drop the chlorpromazine, which was such a huge relief; amitriptyline makes me very sleepy a couple of hours after I take it in the evening, and it guarantees me a good sleep, but by morning I feel refreshed and awake and don’t have that horrible hangover effect. I now set an alarm for 8 every morning and aim to be up by 8.30 to start my routine. At the weekend I let myself have until about 9.30. It’s so lovely to get my mornings back, to have a proper length of day, to just feel refreshed after sleep and alive instead of constantly sluggish. I love it when my partners Isaac or Howard stay over and I can wake up with them in the morning, have breakfast and say goodbye to them if they are leaving for work. I’m being very careful not to get into a bad habit of sleeping late everyday now.

5. Isaac

I think people might believe I don’t really love Isaac; I admit that I tend to talk about Howard more just because he’s my longest-standing partner and I have more commitments with him, but Isaac is adorable and funny and kind, and I love him in a very unique way. The days I spend with him and the adventures we go on are always fun and carefree. He is like a tonic to the other serious things I have going on. It’s no secret that after 14 years I don’t want to be polyamorous anymore. The only reason I continue to do polyamory at all is Isaac. I cannot give him up. I love him too much and I enjoy being around him. He was also a huge support when I was in hospital, often taking me out for a few hours and frequently in the car going to see the dogs and hanging out with them in the field near the kennels. We had lots of fun there even though I was often desperately unwell. Isaac can get through my sadness and depression and make me laugh in a way that nobody else can. I need that in my life. Because I don’t have as many commitments with Isaac, it means I’m with him just for the sheer joy of being with him. He has two beautiful children and I feel honoured to be a part of their lives too. I have no idea what will happen in the future in a romantic/sexual way but I do hope that even if one day we break up again we can still stay close friends. What’s even nicer is the rivalry that existed between Howard and Isaac seems to be over. They seem more content with my being with the other and less afraid. I think they both know that they bring different things to my life and that that’s okay. Now I just need to convince them to hang out more so I get to enjoy being with them both in the same place!

6. Being productive

I have been so unproductive the last few years. Even when I thought I wasn’t clinically depressed my mood was often still very low. I remember when people would ask me if my mood was normal I’d say yes, but really it was only a 3 or 4 (5 is normal). 3 or 4 was literally the best it ever got and as it wasn’t as bad as 1 or 2 I just thought that was acceptable and normal, and even I had forgotten what normal was. I never got a long run at being okay; my mood was always on the way up or on the way down. I spent so much time in bed that nothing got done. I remember wanting to go to the outpatient pottery class at the hospital and being unable to because it was in the morning and mornings were something I just couldn’t do. Now I am regularly going to the Monday morning class which starts at 10.30, I’m out the door by 9.15! Seeing friends was a struggle, taking the dogs on a longer walk was a huge effort, I just had no energy. Housework never got done, washing was left until it overwhelmed me. Dishes would pile up, everything was cluttered and stressful. I had really let things get on top of me. Now I’m up early I can do a morning dog walk and be home before lunch. My personal hygiene is better. I put nice clothes on, I wear my makeup and other things that make me feel good about myself! I’m making more effort around the flat and I’m interested in making it a nicer environment for myself. I just feel like I have motivation for the first time in years. I’m enjoying being productive, I want to be productive. I’m not just sleeping my life away or lying in bed staring at the wall for hours. This is probably one of the most important things that has improved and I didn’t even realise that my lack of motivation was part of my mental illness. I genuinely thought I was just lazy and useless.

7. I can feel feelings again!

When other people talk to me about depression they often say they feel sad, or they feel empty or hurt or unhappy. When I feel depressed I feel dead. It’s hard for me to feel anything. The only words I can use to describe how I feel is ‘disgusting’, ‘sluggish’ and ‘muted’. My emotions are very dulled down. This might have been partly down to my medication regime too (chlorpromazine). I did feel love, or at least I knew I loved Howard and I loved Isaac but I couldn’t fully feel it, not in my bones, the way love should feel. Nothing made me happy, nothing made me sad, it was just this dreadful nothingness. I think the only time I could feel anything at all was when I was in physical pain. I could feel that, and it was real and sometimes I would enjoy it when my endometriosis would flare up because then at least I felt something. This is also why in the past I have self harmed though I haven’t done that for years.

Now I feel everything and it’s with such powerful intensity. It’s like the shell has crumbled and underneath everything is red raw. The love I feel for Howard is overpowering. It’s frightening, to actually feel like that about another human being who could possibly hurt me. I care what happens to me. I don’t want to die. Let me say that again. I. Don’t. Want. To. Die …

I’ve spent so many years wishing for death because I couldn’t stand the disgusting, sluggish, dead feeling I constantly felt. It was literally torture. People don’t understand. How can someone commit suicide? Don’t they care about their loved ones and responsibilities they leave behind? I believed everyone would be better off without me. Towards April when I was sectioned, even my dogs. I thought life was absolutely 100 percent not worth living. That I’d rather go through the gruesome process of hanging myself than go on another day. I actually wanted to die in a horrible way because I wanted to feel something/anything before I went. How I never came to any harm is partially down to luck, and partially down to Howard taking me in when he did. I am 100 percent in love with life just now. Everytime I feel an emotion I haven’t felt in a long time it’s like feeling it for the first time again. I feel like I’ve woken up from a nightmare and reclaimed myself.

8. My flat is a lot nicer

My flat has been in a terrible state for literally years, in fact ten-plus years! I was in the horrible situation of owning the flat with my ex and being unable to get his name off my mortgage because I live on benefits, and therefore they wouldn’t give me a mortgage on my own, even though I was clearly making the repayments! As a result of this I was never able to raise the money through remortgaging, and I wasn’t able to get Chris removed from the mortgage despite the fact that he abandoned the flat many years ago and had hardly paid a penny towards it. Howard sorted this out by taking on half ownership himself. I want to stress this is an extremely kind thing for him to do. I’m overwhelmed with gratitude and I have a feeling of security that I now have a co-owner that I can trust. Not only did he do that but he sorted out all the paperwork and worked very hard to make it happen. It took a year! Chris (my ex) was made it really hard by refusing to sign the paperwork. Now finally for the first time ever I am in a position to actually sort my flat out.

Since going into hospital Howard arranged for all the work that needed to be done. This was a lot of work for him. In my depressed state I wasn’t even able to give him any input. I didn’t even care that much what happened or how it looked. Howard encouraged me to pick colours and other such things which I did but I never really believed it would happen.

Now I have a new boiler, new radiators, new flooring in the living room and hallway, new windows and a new bathroom, and now I am out of hospital the kitchen is in the process of being done! Eventually we will decorate the rooms and I’ll have a nice home to be in that I love and that’s not a nightmare. I can wake up in the morning and take a shower in my nice new clean bathroom. My old bathroom didn’t have a shower and I had to take baths that took ages to fill because of the failing boiler. Now I wake up in the morning and hop straight into my nice hot shower and feel clean. I haven’t had a working oven for nine years and my hob barely works. Once the kitchen is finished I’ll have a really decent oven and cooker. I’ll even have a dishwasher (luxury)! It’s going to be amazing. I’m eternally grateful to Howard for his help with all of this. I think it has such an impact on my state of mind to have a nice environment to relax in. It also makes me confident that he is as in love with me as I am with him because it’s such a huge thing that he’s done!

9. Personal hygiene

I feel ashamed to admit this but my personal hygiene hasn’t been good. Depression sucked away any motivation to keep myself clean and tidy. I would regularly go an entire week without washing. If I was staying in bed or not leaving the flat I wouldn’t bother and even if I was going out I wouldn’t bother. I’d even lie to Howard when he’d asked me when was the last time you washed. I’d never say a week ago or more because I knew he’d be appalled. The more depressed I became the worse I got. It was particularly bad when I was in hospital. I remember at the start of my admission in IPCU (intensive psychiatric care unit), I was wearing leggings, a soft dress, a cardigan and socks, basically the clothes I was in when I got sectioned. No bra, no pants. This is disgusting but I was sleeping in my clothes and going about my day on the ward in those clothes. To make matters worse I started my period and I just didn’t bother to sort myself out. I was just bleeding onto my clothes and because they were black nobody noticed. Howard eventually noticed I smelled rotten and I finally showered and changed. The nurses would come into my room and coax me into the shower, remind me to put my pyjamas on at night and day clothes on during the day. I did the bare minimum. I also didn’t brush my teeth for months and now my teeth look a bit more stained than they used to.

Now I shower every day. It’s part of my morning routine. I think having the new shower makes it far more likely that even when down I’ll still wash, because it’s so much easier than running a bath and waiting for it to fill and having to sit in it. Usually I’d sit in it, perhaps wash my hair but then just get out without properly cleaning myself. In the shower it’s far easier to keep clean and I generally like feeling clean now. The idea of going for days without washing seems really yuck! Also I’m brushing my teeth in the morning and night and using mouthwash. Soon I need to finally see a dentist for the first time in over a decade! I’m working myself up to that one.

Lots of things have gotten a lot better since leaving hospital. The biggest change is just how I feel. Depression is crippling. I wouldn’t wish it on anyone. Nobody really knows how it feels to be that depressed unless they have experienced it themselves. Many people who read this blog will understand. Things can get better though. I genuinely thought that it would just never end. I really believed my only option was to end my life. If Howard hadn’t got me to that appointment with my psychiatrist I could very likely be dead or badly hurt. I am in love with life at the moment. With each passing moment I’m aware that I’m alive and that horrible disgusting, sluggish feeling is finally gone. The only negative is that I am very afraid of it coming back.

10. Reclaiming my sex drive

Some of you might think this is too much information but it’s actually very important. Depression and mental illness can and do frequently have a profound effect on a person’s sex drive. I was still having sex (though not as often) when I was ill because it brought me some comfort but I wasn’t reaching my full potential. It was hard to connect with my partners because I felt so numb. My orgasms weren’t as strong. I hadn’t even noticed that they were weaker than usual because it happened so gradually but since I got well I can see a big difference. I believe the chlorpromazine was dulling down those urges for me and sometimes I would need to push myself to have sex because I knew I’d get some enjoyment out of it once I started, but I just never felt properly in the mood. I’ve known people with depression who have lost their sex drive completely and just stop having sex. This has an impact on relationships. Partners can feel rejected you aren’t getting the bonding that comes with being intimate, this is especially hard-hitting if, like me, you usually have a very active sex life.

Now my sex drive is very high again (which is my normal). I’m enjoying reconnecting with my partners in that way and having very good, intense orgasms that I haven’t felt so powerfully in years. I’ve stopped feeling like I have to force it and when I initiate intimacy I genuinely feel in the mood! As a result I feel more bonded with my partners. It’s not just about the physical pleasure that sex brings (though this is good). It’s also, for me, a way to show and express love.

Some medications can affect sex drive and ability to orgasm. I’ve heard this from many people, especially those on SSRI antidepressants and heavy-duty antipsychotics. I have been in the system long enough to know now that there are solutions to this problem. There are many alternative drugs that can be taken that are just as or more effective in treating depression or psychosis that do not have this effect. They are not routinely prescribed because they are more expensive, but I pushed for my meds to be changed so I didn’t have this side effect, and eventually my doctor and psychiatrist listened.

Feedback

If you like this blog feel free to send me a friend request on Facebook as Jools Christie (but send me a note saying who you are). Also you can follow me on Instagram. I plan to post more photos there under the name little_miss_black_sheep. I feel like I owe it to everyone who is struggling with mental health to spread awareness and knowledge. I know one of the things I really valued when I was unwell was reading other people’s stories of mental illness and recovery. Do I think I have recovered from schizoaffective disorder? No. I will get unwell again in the future. I’m aware of that, and denying it won’t protect me from it happening. At some point I’ll either get manic or depressed. Either way it will mess things up. What I’m hoping for is a long run of stability. I’m aiming for six months to start with, then build on that. I have lots of blogging ideas but suggestions are very welcome. Comments are appreciated either here or on Facebook. Thank you for taking the time to read this.

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.