My psychiatrist calls it ‘adaptation’. It’s that graceful period in which you come to terms with whatever is happening to you. This could be anything from moving schools to losing a loved one. For me? I had to overcome the mammoth event of being diagnosed with Schizoaffective Disorder. Adaptation became my whole life.
Schizoaffective disorder is that delightful mix of Bipolar Disorder and Schizophrenia. It takes you on a journey of extreme highs, despairing lows and alternate realities. As if that weren’t bad enough, I have also been diagnosed with Obsessive Compulsive Disorder and Generalised Anxiety.
It was crippling depression that lead me to seek help, and for two years I was treated (rather unsuccessfully) for depression and anxiety. I had a supportive GP and a great psychiatrist whom I trusted to the ends of the world. Then it began. I started to notice strange things happening to me. It didn’t happen suddenly, it was a gradual progress.
The first thing I noticed were bugs crawling all over me. For someone as arachnophobic as me, this was a nightmare! It took me a while to realise these bugs weren’t real and I remember thinking at the time: which is worse? I desperately wanted to believe that the bugs were real and that I wasn’t going crazy. I stubbornly refused to seek help for this and laboured on for about a year. Then things got worse. I had episodes of extreme anxiety and paranoia – for example I thought the sky was a vortex that was going to suck me up. The bugs began communicating with me and controlling me. It was terrifying. I started seeing signs all over the place which had special significance to me and me alone. As you can see I was starting to lose it. But I never once let it show. I’m lucky in that I managed to keep a lid on it to a certain extent.
Continued to get sicker
I eventually told my psychiatrist and he organised several tests – I had a blood test, an MRI (Magnetic Resonance Imaging – It’s where you lie down and are sent into a giant tunnel where the scan takes place. It is very noisy.) & an EEG (Now this was an unpleasant experience for me, it triggered my OCD quite badly because it was quite messy. An electroencephalogram or EEG involves getting electrodes being glued – yes GLUED – to your head. These are then wired up to a computer which measures the electrical activity in your brain). He put me on an antipsychotic medicine (my first of several). However I continued to get sicker as well as experiencing bad side effects from the drugs including weight gain, and dystonia (where all the muscles in my neck seized up). It got to the point where I was no longer in control, I thought my meds were poisonous so I stopped taking them – which was a disaster as you can imagine.
Everything got worse at full force – I was on the brink of losing touch with reality and I was falling fast. Signs were telling me to kill myself & I believed them. Around all of this happening I started university, and I found this extremely stressful – I wasn’t coping at all. I was quite suicidal too – as all this was happening against a background of dysphoric mania and deep depression. (For those who don’t know ‘dysphoric mania’ or a mixed affective state is exactly as it sounds. You experience the negative symptoms of both depression and mania at the same time. It is hellish.)
Friends stuck by
Before I knew it I was in hospital. Admittedly for the second time, but this time it was much more serious. I was so out of it I didn’t experience the boredom that plagued me during my first hospitalisation. Being inpatient definitely helped. We were able to fiddle with meds much quicker than we could have if I was at home. Plus I needed the help of the nurses, who taught me how to cope with my illness and how to open up to people. Always there with a helping hand were my psychiatrist, and some really, really great friends. They stuck by me the whole time and were always within reach, whether by phone or msn. I even got the occasional visitor and one special friend who would get her mother to take me out (I wasn’t allowed to be unsupervised – but this didn’t phase them). I owe my friends a lot.
Support all around
My family was equally important – they were always there to comfort me and learn how to support me. The nurses were a HUGE help – they brought me in games and movies and played the piano with me. It doesn’t sound like much, but it helped no end. I ended up staying in hospital for about 12 weeks. I had to drop out of university, which I hated. It was all so confronting – I could no longer ignore what was happening to me.
I experienced new phenomena too – my fish was talking to me, there were hidden messages for me in songs. So we started taking a drug called Clozapine – The most powerful antipsychotic on the market, but one that is used as a last resort. It carried with it some serious side effects – including the ability to mess with your white blood cell count – so that meant weekly blood tests. I have only just finished my course of weekly blood draws and now I am on monthly draws for the rest of my life (on the drug).
A burden shared
So how have I adapted to all of this? Well, for starters I am no longer afraid of blood tests! I started back at university, albeit on a part-time basis – but it’s a start. Instead of being a slave driver, I have slowly been learning to cut myself some slack (academically), to be aware of my illness getting worse & to talk more – A burden shared is a burden halved. I talk to my friends, my psychiatrist and my GP – who is very supportive. I still find it hard to talk to Mum about what is going on for me.
I have had to adapt to being more fragile, to the fact things will never be the same again, to the fact that my life has become a series of appointments after appointments. I have adjusted to mood swings (not very successfully – I am still learning how to ride out the mini bursts of mania – but at least they are FUN!!!) One of the hardest things I have found is hearing people say I am psychotic. That still makes me cry. But, you know what? I’m working on it. And you know what else? I am smart enough to not let this illness interfere with my dreams – I am going to win this battle!