A Level Of Functioning

I saw a tweet yesterday that said something about ‘getting to the point of functioning’ and I thought, yes, that’s me!

During the good times, I thrive. I can face life head on and enjoy things like work. The obstacles seem easy to hop over (or knock down). When the blips happen, however, things change. Simple activities like taking a bus home become hurdles that feel six feet tall. My perspective on life is different, and it’s hard to deal with. The key point becomes surviving – functioning.

In the run up to my crisis in December I was nowhere near thriving. Unfortunately, because I was functioning (going to work, getting home safely), my concerns were not heard properly. My CPN was fabulous and referred me on to the Home Treatment Team, but from that point on I felt I was not being listened to when I said I couldn’t face another day.

Every call I made to HTT for help went something like this:

ME: “I’m at work and I’m struggling to cope with it.”

HTT: “We’re sorry to hear that, but you’re still working?”

ME: “Yes, but I can’t concentrate and really don’t think I can last the afternoon.”

HTT: “OK well try to stay calm for the rest of the day and focus on getting home.”

I think I usually gave up at that point. They just couldn’t seem to get their head round the idea of someone working through such a tumultuous time. The problem is that I hate to take time off ill; I feel as though I’m letting work down, even when I know I really shouldn’t be at my desk. The idea of work piling up in my absence gives me massive anxiety.

In fact, it took an intervention from my CPN and psychiatrist to persuade me to take time off in December to go into crisis care. It was like I needed their permission to admit temporary defeat. I couldn’t do it on my own authority; even though I knew it would be best for me.

And now I find myself in a position of functioning again. Work is a little too stressful, but I’m still ploughing through; I’m definitely not thriving though. Once again, I’m doing what I have to to survive.

A Level Of Functioning

When I Hit The Bottom (trigger warning)

I knew it was bad when I spoke to my husband and couldn’t bring myself to tell him I loved him. How could I say that to him when I was planning my suicide for that evening? I knew I was at rock bottom then, but I couldn’t tell anyone. What could they do about it? I needed a quick-fix, I needed to not feel this way for another day; and it was still three days till my appointment with my CPN.

The plan was fully formed in my head, and the wish to feel nothing was the strongest urge in my mind. I felt guilty, yes, but not so guilty that it was enough to discourage me from my plan. I tried to reason with myself, to think it through logically, but ended up frantic each time. The need I had to not exist tomorrow, to not have to face the office and my life, was overwhelmingly powerful.

That evening I walked home via the pharmacy and bought a pack of paracetamol. I wondered if the pharmacist could see in my eyes the pain I felt; I wished and prayed that she would recognise the look of desperation of someone who has reached the end of their tether. I even hoped she was somehow telepathic and could read my mind. She couldn’t.

It can seem somewhat contradictory that I was hoping for someone to stop me, yet hadn’t told anyone my plans. The thing about being so depressed is that you do not wish for death; you just wish to not exist, to not feel anything anymore. It doesn’t take away the guilt or the sadness over your actions. Death is still scary to someone planning suicide – it’s just that it’s less scary than facing another day of pain.

What can you say to someone in that state? All responses seem trite; ‘it gets better’ and ‘think of what you have to live for’ are meaningless words. I believed with every fibre of my soul that I was destined to spend the rest of my life in a real-world hell and chose to bet my life on death being the better option.

Looking back with the benefit of hindsight I know that what I thought was the end of my world was just another episode in the illness I live with. An experience I hope I can learn from; but there’s no guarantee that the rot won’t set in again – no guarantee that I won’t find myself in the place where I resent the people who keep me safe. There is nothing worse than being angry at your other half because they called an ambulance and want you to live, when all you want is to end the torture of living.

I hope I never return to that dark place for the rest of my life. I hope that if I do end up back at the bottom I have the strength and presence of mind to ask for help. Overall I hope I remember that things do get better; yes, it takes time but life is worth it.

When I Hit The Bottom (trigger warning)

Have You Met Eve?

So I am going to talk a little about one of the vaguer but more important parts of my mental health issues. Her name is Eve. I don’t know if she’s a co-existent alter or just part of my delusional beliefs, but she exists and I live with her in my mind every day. I can’t promise this post will make much sense as she is a difficult concept to grasp and talk about. When I’m in a good place she is usually asleep. I have a kind of mental bedroom set up for her where she can rest, and I can check in on her on my own terms. That’s the key phrase here – on my own terms.

At first, I believed I was her. That’s where her name comes from – Eve as in the first woman, biblical wife of Adam, one-time resident of Eden and eater of sinful apples. It was what the hallucinations told me; ‘you are Eve incarnate and you must atone for your sin.’ It was the most full-on of my delusional beliefs and it was the most dangerous. I would self-harm because I saw magic in my blood shining through my skin (think Twilight-esque vampires here) – it was magic that would save the world if I let it out. Eve and I were the same person at that point. I was the body, the meat-suit, and she was my soul.

When I got a little better and had more control she split away from my own personality. I don’t know if it was my mind giving me some protection from the danger of my beliefs or what caused the change into having two sets of thoughts, two people in my one body. It was definitely easier to cope with her when I was able to distance my own ‘me’ from her though. For a while, things were pretty rosy. We had a kind of truce situation; she was tired and unbelievably sad and I needed to get on with the business of living. So she slept away the pain and I was able to function again.

Her presence in my life has always been closely linked to my state-of-mind. Most recently in December 2014 I was heading back down the path of psychosis and as I got more unwell she became louder and more active. At first I would fight her and try to push her down and she would get madder and madder until I gave up trying. On a good day I would refer to myself as ‘we’. Bad days saw me giving her a voice, my voice. I never blacked out whilst she was speaking, but I retreated into the back of my mind to listen to her talk to my husband or my care co-ordinator.

The problem with Eve is that she is not well equipped for the adult world. She is a lot younger than me; too young to understand the guilt she feels over the sin she believes she committed. To her mind, the state of the world is her fault and she doesn’t know how to cope with the overwhelming sadness that is associated with what she did. In the end, she just wants peace and she believes that she was awakened in my body to gain that peace; for herself and for the world. ‘Atonement’ to her is suicide.

At the moment she is calm and peaceful. There have been times that she’s not been happy for me to speak about her but at the moment she is in a deep resting state; a state in which she doesn’t feel the hurt and pain that characterises her waking hours. I have done work with her in therapy and have realised that I can’t fight her. Now I just have sympathy for her. If we chat in my mind I do not spend my time arguing with her anymore. I stay calm and try to remember that she is only young and I try to relate to her, to make her feel accepted. It is a much nicer symbiosis.

I do not want to ‘get rid’ of Eve. It’s hard to explain why but I think I would feel like I lost a part of my own psyche if she went away. She is like my eleventh toe. Not useful in a practical way but still a part of me. I love her and she loves me, and I hope we can both heal by working together.

Have You Met Eve?

Sometimes It’s Good To Reflect

I’ve just walked the door after 10 hours away at work. I’m sitting with the laptop, in the recliner chair in front of the fire (mostly because I didn’t wear a coat today and it’s still only March). My husband will be home in around 20 minute and I can’t wait to see his smiling face and have a nice big hug. All in all, I am very content. Sure, there’s things that went wrong today. But instead of being a disaster as I would have seen it three months ago, I am able to shrug it off as just one of those days.

It is when I pause to reflect that I see just how far I’ve come. My care co-ordinator always reminds me to acknowledge my achievements and be proud of myself. So although this post may seem indulgent, or self-congratulatory, I actually don’t care. Today I am in a place where I can sound my own trumpet from the rooftops and I’ll be damned if I don’t do it.

In my eight years of working life I have worn many hats. I have been a minimum wage administrator, and I have been a customer services manager. I’ve spoken to many people, answered millions of emails and worked under lots of bosses. Currently I am working with a tech giant of a company, and although I am a contract worker, I feel good about the job. Compared to some of my permanent positions, I’d still rather be on contract and happy. Maybe that says something about what I have learned to value over the years, especially since I became unwell.

Then-me would have had kittens over a day like today. I thrived in the high-pressure crock pot of the customer services world, and even one slow day would see me climbing the walls with the anxiety of not being active. I needed to go go go to feel like I was earning my keep. Now-me sees things differently. I am a lot more relaxed and value quality over quantity. I work to the beat of my own drum, and I am lucky to have a manager who is only interested in the end-results. Then-me would have needed lots of direction and praise and feedback and management in order to move in the right direction at work, especially in my manic phases where I would start 20 projects all at once, and see none through to fruition. Now-me has a nice, manageable number of spinning plates and hasn’t dropped any (yet! I’m only human, so if I do happen to lose one or two I will learn from it, forgive myself and move on).

It’s not just at work that I’ve changed for the better. I wrote a guest article for Stigma Fighters today and wrote in it that I miss the manic energy. Which is true, except… do I? I miss feeling like I can conquer everything that’s thrown at me, but I’m in no way incapable of doing that whilst I’m stable. In fact, I would wager that although I used to feel that way it would actually be the opposite. I can probably handle more of life now and enjoy it along the way.

Other positive changes include a new interest in actually looking after myself. I mean sleeping enough, eating enough and not abusing alcohol. So really, I am saying that I seem to have remembered the benefits of moderation. Not too little sustenance and not too much booze. Even if I’m in a social situation now I don’t find myself hitting the inhibition lubricant hard. I can go out and enjoy a drink or two without overdoing it.

And this thing called a social life seems to have re-appeared from wherever it was hiding. Up to December 2014 I became something of a social caterpillar (definitely not a butterfly anyway). Since everything has calmed down I feel better equipped to cope with being in a pub, seeing friends and having a nice chat. Funnily enough, it’s a lot easier to hold a conversation with someone when you’re not being distracted by your alter or the voices.

My relationship is on a lovely even keel. The husband has stood by me through some rough times, and has been my carer in so many ways – making sure I take the meds, keeping on top of the housework, listening to many, many incoherent rants and taking the brunt of my rage. I finally feel I am able to repay some small part of what he’s been doing for me for the last few years (he would argue that I don’t owe him anything though). The nice thing is that doing little things to make him feel good also makes me feel good about myself.

I am better connected with my family now that I am trusting them to love me unconditionally – which they always have done, it’s the ‘trusting’ part that’s key here. We have argued, fought and screamed at each other over the years but we’re at a mutual meeting place now as adults and friends. Now I’m no longer ashamed of myself and my struggles to be well, I can see they were never ever ashamed to call me their relation.

So this has been a rather introspective bit of writing – I am sharing it because I want to let the world see how far I’ve come. The changes are down to finally being on the right medication, and having surrounded myself with the right kind of support. Also, it’s partly because I’ve accepted that I don’t have to fight to accept this reality anymore. I am proud to say I am me and this is my life.

Sometimes It’s Good To Reflect

Citalopram And The Doctor From Hell

When I first became unwell it was the anxiety that sent me to see my GP. At this point I wasn’t truly psychotic or manic, but it had started to creep in (if only I knew the warning signs back then!). I hadn’t been sleeping because I was so afraid that if I slept, my husband and I would be murdered in our bed by the neighbours. On top of the paranoia I was also ‘running fast’; I wasn’t able to slow down enough to shut off. I was having anxiety attacks every night over this fear and have experienced them before so thankfully I was able to at least identify; ‘yes this is anxiety’.

I booked an appointment to see the doctor to see if I could get some help dealing with the fear. My regular doctor wasn’t available, so I took the first free appointment with a locum. In I went, my heart beating in my chest with the anxiety of having to talk to someone about what was going on. When she asked why I had come in to see her I broke down. I spilled my heart out and told her everything – that I wasn’t sleeping, couldn’t calm down and was having anxiety attacks. I probably only talked for a minute but it felt like forever. She listened and made reassuring mhmm noises as I spoke; but when I was done she came out with the least helpful statement a doctor has ever made:

“I don’t know what you want me to do about it. You’ll have to sleep sometime.”

I was shocked. Worse still, I didn’t have an answer. I didn’t know about asking for referrals to talk therapy (in this area of the UK there is a very good telephone counselling service, as well as the opportunity to take up six face-to-face sessions), and I didn’t know about anti-anxiety or sleep medications. She had knocked the wind out of my resolve to get this sorted and I had no idea how to respond.

After a moment of silence she started to talk about the link between depression and anxiety. She suggested that I was in fact depressed and it was manifesting itself as anxiety. That’s not to say it doesn’t happen; that’s just not what was happening with me. She wrote me a prescription for citalopram (which is an SSRI anti-depressant) and sent me on my way.

What a disaster that was. I felt rotten, but relieved that I could at least try these pills and maybe get a break. I didn’t know then about certain anti-depressants exacerbating mania. Pretty quickly, I found out though.

For the first few days I felt no change. A quick search online told me to be patient – 2 to 4 weeks is typical for SSRIs to take effect. My mood was still elevated and I was still terrified to sleep. Gradually, however, the mania took hold. I hadn’t been sleeping more than a few hours a night anyway, but this amount dropped away until I was catching around three or four hours every third night. I was restless, agitated; every night I fantasised about going out for a long walk just to take the edge off. I was raging angry at my husband for every tiny transgression, and I couldn’t focus on my work.

The thing that made me drop the citalopram in the end wasn’t this manic experience though. I am notorious now with my psychiatrist for getting the weird, rare side effects on every medication we’ve tried. In the case of this particular anti-depressant, it was making my food taste rotten. I couldn’t eat a thing unless it was highly flavoured or highly spiced to cover up the taste of the meat. Fatty foods were out; whenever I tried even so much as a sausage it felt as though my tongue was coated in the oil from the meat. It was disgusting, and I was hungry, so I stopped the medication.

From there on in the mania settled a little. Probably back to ‘simply’ being hypomanic rather than full-blown raging mania. It was another month or so before it came back in full and my husband got me to see a different doctor, this time armed with mood charts and trackers.

Even now I’m on a different anti-depressant we are careful of my mood. Sertraline is nowhere near in the same league as citalopram was for triggering mania, but it’s not perfect either. Unfortunately without it I get severely depressed, so it is a case of balancing the pros and cons.

So to wrap up, I suppose the moral of my story is to do your research and never be afraid to challenge your doctor if you’re not sure they are right.

Citalopram And The Doctor From Hell

Things I Would Say to Myself Aged 13

This post is somewhat inspired by the book I posted a review of earlier today (Reasons To Stay Alive by Matt Haig). In the book he has sections like ‘Things you think during your first panic attack’, and conversations between himself now and himself then. It got me thinking – what would I like to say to myself aged 13 if I could.

You are not crazy.

The title of this site is taken from my lifelong fear that I am crazy/abnormal/weird etc. When I first started feeling anxiety and depression I would wonder how long I could last like this before they locked me away. A lot of my fear of seeking adult help stemmed from this belief. I wish I could go back and tell myself that it is going to be OK.

Lean on people.

No, 13 year old Alexandra, your mum is not going to be mad at you. She might get angry, sure, but she loves you and cares about you. Your nan will listen too, if you feel like you can’t talk to mum. So will Aunt Sandy, and you know she’s cool anyway. What I’m saying here is to use the support around you. It will be hard at first but the road is a lot smoother when people are ironing out the bumps.

Please stop hurting yourself.

This is a tough one. I wish I had known how much of a slippery slope this is. Cutting is the most common form of self-harm and it leaves marks on skin and soul that fade but don’t disappear. I know that when I’ve been engaged in it it has been because I literally didn’t know what else to do to cope. Even now that I’ve learned how to utilise healthy coping skills I still find my mind turning back to self-harm. I would tell myself to stick it out with the psychiatrist, learn to use exercises like STOPP and The Butterfly Project and I would ask myself very nicely to chuck out the blades once and for all.

You will make it past 20.

I spent my teenage years acting as though I had a death sentence looming over me. I was convinced I wasn’t strong enough to see it out to reach 20. I’m now 25 and still here, and it’s been well worth the wait. In fact, I can say I started to see the future when I met my now-husband aged 18, so the last two years of my teens weren’t all that bad. Certainly 13 to 17 year old me was hopelessly lost in a depression that hardly lifted, ruined my college years and felt like the end of everything. But here I am, little me, and life now is well worth sticking it out for.

Talk to a therapist or doctor.

Professional help is key to recovery. Perhaps I’d never have developed Schizoaffective if I’d been treated for my depression and anxiety earlier. Or perhaps it is in my genetic make-up. Even if I had been seen in my teenage years and still developed sza, it would likely have been caught earlier, treated sooner and I’d have lost out less. I was so scared of doctors (still am in truth, but I’m better with it now) that I avoided and avoided going unless I was literally falling apart. So if I could I would encourage myself to be open and honest with a medical professional and ask them for help getting through the rough times.

Things I Would Say to Myself Aged 13

Coming Off Meds

Medical professionals advise that stopping any medication is done gradually and under supervision. I learned the hard way that the doctors know best.

I first took myself off the pills around late November 2011. I’d been on Risperidone (an antipsychotic) for around six months and all in all it was working for me, but I was missing the highs of manic psychosis. The few months prior to my first referral to a mental health team had been terrifying and wonderful all at once. The paranoia was awful, but the feeling of being so very special beat it hands down. So after I started taking Risperidone and things calmed down, I couldn’t help feel like something was missing. Looking back at it I believe that I was hitting a depressive phase at the same time. All in all I felt pretty awful and my mind went straight to blaming the meds.

The effects were almost immediate. I would say maybe a week later was when it really started to hit me. To my mind, I was fine – I had that wonderful buzz back and was loving it. But I was getting paranoid (the neighbours are aliens), delusional (I can save the world by killing myself) and hallucinating (the stars were talking to me from across the galaxy). I was becoming seriously psychotic and it was only to get worse.

Somehow I managed to keep working. I was on my way to the skies and felt incredible; I had reverted to working 12 hour days and sleeping maybe 3 hours every third night. I couldn’t slow down enough to sleep, but I didn’t feel I needed to either. I stopped eating regular lunches and dinners (though I’ve never been a breakfast person), and instead upped my coffee intake to many, many cups a day. None of this was healthy behaviour but I was so high that I never saw the crash coming.

It was around late-December coming on early-January that it started to feel overwhelming. My mind was off on another planet most of the time by this point. My work was suffering, as were my relationships with colleagues and friends. I was on a plummeting plane and I didn’t have a parachute. The only way I knew how to get some respite was hurting myself, and so I turned to my old habit of self-harming regularly (i.e. every day as soon as I got home from work). On top of this I was drinking to try to slow the rollercoaster down.

I should mention at this point that I was under the care of what is called ‘secondary services’. Specifically I was with the Early Intervention in Psychosis team, and my case was looked after by a Care Co-Ordinator. So I wasn’t on this ride alone, I had people keeping an eye on me the whole time. But as is often the case with over-stretched mental health care teams here in the UK, my Care Co-ordinator saw me once every 1 – 2 weeks, for an hour. And because I had been feeling so good, those meetings were full of positive energy.

Eventually my husband called me out on my behaviour, and called the Early Intervention team to get someone to assess me as soon as possible. The consultant psychiatrist came out the following day, and the whole story with my stopping medication came out. She arranged for me to get back on the Risperidone, with a slight increase in dosage, and signed me off work for two weeks.

That’s my experience with coming off of medication ‘cold-turkey’. It’s not the last time I tried to stop taking it, but looking back I should’ve learnt from the events of those couple of months. The US National Library of Medicine states that ‘abrupt discontinuation of antipsychotic drugs in patients with schizophrenia is associated with earlier, and often more severe, illness episodes’. And that’s not to mention the potential for physical side effects, such as motor disorders, sickness and so on.

The right way to come off medications is firstly with the support of your psychiatrist or medical doctor. They will discuss the possible side effects, and work out a way to taper the dose down so that it isn’t a shock to the system. This can take several weeks to action, so patience is key. In the end, it is your own health at risk.

Coming Off Meds