Why I haven’t posted in over a month

I haven’t had health insurance since I left to go on my backpacking trip in April of last year.  Before my insurance expired, I refilled all of my prescriptions. Even though I had gradually reduced the amount of medication I was taking – to make the supply last longer – as happens, it eventually ran out in the summer.  I didn’t refill it until this January, when I was at the doctor’s,  paying out of pocket for a completely unrelated reason.  While I was there, I figured I’d ask how much I would have to pay for my prescriptions without insurance. To my utter bewilderment (not to mention pure joy), it costs less than 60 euros for a 3+ month supply. Wow.  I had been expecting a bill of several hundred euro, which is why I had been putting it off for so long.  Naturally I got both prescriptions refilled and began taking them again the very same night. Relief. Remember, I’ve been on the on/off medication train several times.  Sometime last year, I finally accepted – and embraced – my meds, and their power to help me.  I wanted them back.

So why haven’t I posted about this, considering how relative it is to my whole journey?

In mid January, I posted about self harm.  What I failed to mention was the fact that I cut myself the same night I wrote the post. I didn’t want people to know.  I want to give people hope, an example of things getting better. I want them to read my words and imagine moving past this negative stage and back onto happiness.  I don’t want them to read my earlier posts of improvement and good times, only to then see that I’ve failed again. Because naturally, with a depressed mind, seeing me fall means there’s no hope for them either. That’s not the message I want to send.

Anti depressants are not instant fixes.  They will not make you better overnight.  In fact, often times, they’ll make you worse before they help you at all.  But once you get past the initial tough stage, it becomes worth it.  You can feel again.  You can think again.  You can get yourself out of bed again.  You can socialize again – hell, you want to socialize again.

That rough spot began in early January for me, and lasted until about three weeks ago.  I wrote that post, felt like a hypocrite for not telling the real story, and just left the blog alone. A little while later, I got a comment on a post, simply asking me if I was happy.  I couldn’t bring myself to respond. I didnt want to lie.  But I also didnt want to tell him the truth – that no, I wasn’t happy.  At least not right then and there.  So I just ignored the comment. And the blog altogether.

And then, soon after, the rough storm turned into a sunny afternoon with a beautiful rainbow. I felt better.  Again, I had one of those “it’s working” moments.  It’s funny how it sneaks up on you – gradually, you improve, but it happens over time and it’s hard to pinpoint when things got better.  And then, one afternoon, I was sitting on my kitchen floor, listening to Sia and drinking a chai.  And I smiled to myself because at that same time mere weeks before, I had called in sick to work because the thought of leaving my bed left me feeling  crippled.  I noticed how far I had come, and how calm I felt, and I smiled again, happy that I was back.

I haven’t posted because the first couple of weeks were spent feeling sorry for myself, while the remaining ones were spent surrounded by friends, good food and fantastic fun. I was so busy enjoying everything that I never took the time to write.

So, to the person who asked me if I was happy: 

I’m not happy everyday. Sometimes, I go days, weeks, even months, being unhappy.  I have times where I want nothing to do with being alive. I have times when I’m angry at myself, or the world around me. I have times where life seems pointless, and happiness seems fake.

And then, overall, above everything; all of the negative; all of the days I want to die, are the days where I am so, so, so incredibly happy.

After living in a dark, cloudy mind for so long, the sun seems to shine that much brighter once it finally does come out.  I feel the joy a million times over. I revel in it. I spread it. I sing at the top of my lungs in crowded – and empty – bars.  I cook (and also order, let’s be real here) delicious food with friends. I look forward to going to work, and planning fun activities with the toddler I am so lucky to take care of. I smile. I laugh. I make a fool out of myself. I have fun. I am happy.

Of course, sometimes that euphoric feeling is nothing but a manic phase. Sometimes I even have to ask myself, “am I happy or am I manic?” And I can never really know for sure. But it doesn’t really matter. The fact is I feel the joy and that’s enough for me, as long as I keep myself in control.

Any mental illness is a journey.  Every journey takes a different road, or takes a different turn.  Keeping up with yourself is important – checking in with your thoughts, keeping track of your feelings and major events. It helps to understand yourself when you can look back at what you’ve said, done, or felt, and view it with a different part of you. That’s what this blog is to me. I try to be as honest and open as possible, and then I go back and read through things later on.

So. To conclude, this rollercoaster ride is still going.  I’m buckled in tight, and I’m not getting off any time soon. 
I’m going to enjoy the ride as much as I can, when I can.  And I hope you do too.

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Leading up to the Psych Ward

When I finally got into a psychiatrist, one of the first things he told me was that he wanted me to spend some time in a Psychiatric hospital.

A thousand thoughts started running through my mind at once.  Was I going to have to quit my job?  How long would I have to stay?  Did I have to sleep there?  Was I allowed to leave?  Why did I have to go there?  Was I crazy?!

I started thinking to myself, “no, I’m not crazy,” and before I even finished the thought, I remembered that “crazy people don’t think they’re crazy.”  That worried me even more.  I was fully aware that I had already begun to lose touch with reality for short periods of time, but I was terrified that I was even further gone than I’d realized.

“It’s the best way to get a clear diagnosis,” he told me.  He assured me that I was still psychologically stable enough to make my own choices, and he therefore couldn’t force me into anything I didn’t want to do.  He couldn’t admit me to the hospital against my will.

My next thought was, “okay great, so I won’t go.”

He wasn’t about to give up that easily, though.  He listed reason after reason why it was a good idea for me to go.  And eventually, I agreed – not without reluctance, however.  This all took place on a Thursday afternoon, and my bed at the hospital was reserved for the following Monday.  I was to stay two weeks.

I left my appointment that day feeling like I had failed myself.  I never imagined that anyone would think it necessary for me to stay in the psych ward.  I had never pictured myself in the situation I was now finding myself in, and I didn’t like the way it felt.  I called up Nick and I cried on the phone to him, telling him everything that had just transpired.  As always, he was supportive however he knew how to be, and assured me that the doctors knew the best route to take.

That didn’t ease my mind.  Although I knew that at this point my visit was voluntary, I managed to convince myself that they’d find something seriously wrong with me and I’d never be let out.  I was going to spend the rest of my life locked up in the loony bin.

Hello, anxiety.  Hello, paranoia.  Hello, delusional thinking.

My mind was a roller coaster.  My thoughts were strapped in, looping around and around, up and down, shaking me up as they went.

By the next day, I was in a full-blown depression.  I was dreading the trip to the hospital, and I couldn’t focus on anything else.  I came home from work that Friday evening and decided to go for a walk to try and clear my mind.  I didn’t take anything with me – not my phone, not my keys, not even a jacket.  It was just me and my crazy roller coaster mind.

I don’t know how long I was gone.  I wandered aimlessly for hours.  I stood on the bridge overlooking the river, then walked down, staring at the water for far too long.  I must have faded away from myself for a while, because the next thing I knew, I was sat at the train station near my house, just watching the trains go by.  I was sat at the end of the tracks – I always did that, because if I ever got the courage to jump, I wanted to be close enough to do it before I changed my mind.

Thankfully I never got the courage.

I don’t remember much from that night.  I remember being at the subway station, and then I remember standing outside my apartment building, reaching up to ring my own bell.  I was buzzed in, and I slowly climbed up the stairs.  Nick was running down them, panic-stricken, asking me where I had been, what I had been doing, what I had taken.

“Out.  I don’t know.  Nothing.”  Zombie-toned responses, expressionless face.

Although I was completely out of it, I hadn’t actually taken anything that night.  There was an open bottle of ibuprofen on the counter, and Nick thought I had gotten into it.  I hadn’t.  I had learned by that stage, through trial and error, that ibuprofen was just not going to get the job done.

Nick brought me inside, questioned me some more, and told me he had been so worried that he had been asking everyone if they had heard from me – he even had people on their way over to help look for me.

I was mad.  Furious. How many times had I told him not to tell people things about me?

I went into the bedroom, and Nick retreated back to the kitchen.  His senses were always on high when I was in a state, so it’s no wonder he heard me opening up the window, and was back in the room with me before I managed to climb up into it.  He stopped me well before I even attempted jumping.

I stormed out of the bedroom, probably en route to the kitchen for a knife, and I screamed bloody murder when I saw a friend in our living room.  He had just come in – he was already on his way over when I stumbled home.  I wasn’t expecting anyone to be there with us, and it shocked me so badly that I was sent into a sort of panic attack.  It also sent my anger over the edge, and I was instantly determined to do something, I just didn’t know what.

I can’t begin to describe the thoughts that were going through my mind at this stage, because I sincerely do not remember.  I can’t put myself back into that moment of time, because I wasn’t there with myself.  That person was not me.

I closed the bedroom door, claiming I wanted to just be alone, and when I thought no one was listening, I opened up the window again.  I climbed into the window sill, stood on the ledge, looking down four stories, as the bedroom door swung open behind me.  Nick bolted in, got me down from the window, and begged me to stay away from it.

He told me the bedroom door had to stay open now – I had proved to him that I couldn’t be trusted.

He said he’d leave me alone, but he’d be in the next room, with plain-sight view of the two windows.

I told Nick that I wanted the friend gone.  He said okay.  He left the room, I heard the door, and that was that.  I calmed down.  I got into bed.

I was just coming back into myself when I saw two men walk into my bedroom.  I didn’t know them.

I sat straight up, bewildered, and they spoke to me, in German, asking if I was okay.

Paramedics.

I told them I was fine now.  I knew I had to admit what had happened, because I was sure they already knew.  I told them I had had a bad moment – that yes, I had attempted to jump from the window, but I wouldn’t do it again; that I was calm now; that I was okay.

They stayed there and spoke to me for a while, suggesting they bring me to a hospital in Nussbaumstrasse – the very hospital that had a bed with my name on it reserved for two days later.  I told them I was going there on Monday, and that I would be okay at home until then.

All they had me do was promise them that I wouldn’t hurt myself.  I promised.  I could have easily been lying.

The medication works

For a while, I was convinced my doctor was giving me placebos.  I was certain he thought I was making everything up; that I was simply imagining my symptoms.  I thought there was absolutely no way he would prescribe me with real medication.  Even after researching the pills I had been prescribed, and getting them from the pharmacy with a complete list of ingredients, I thought they were fake.

I was positive that my doctor was just waiting for me to say I felt better.  And I thought that when I finally did, he’d say, “I told you so.”

I never thought the medication worked, until I found myself in the middle of a genuine, heart-felt laugh. 

I remember exactly where I was.  I was sitting on a train in Berlin, with my friend Charlynn.  I don’t remember why I was laughing, I just remember that I was – and it felt like the first time in my life that I ever had.

It wasn’t a laugh concealing a frown this time.  It wasn’t a laugh to trick people into thinking I was fine.  It wasn’t a laugh with a hidden agenda.  It was simply a real, happy, spontaneous laugh.

I caught myself in that laugh and I realized that I was finally okay again.  I knew I still had a long way to go, but for once I felt like I could actually get there.  Finally something was helping.

At this point, I had been taking my medication as directed for about two months – it took that long to notice any sort of change. I had thrown the pills in the garbage on more than one occasion before deciding to just stick with it.  Had I stuck with it from the beginning, that laugh probably would have happened a lot sooner.  But it didn’t, and that’s fine.

My relationship with my medication didn’t change right then and there.  While I realized I hadn’t been taking placebos after all, I still didn’t like the fact that I needed to be medicated in the first place.  I thought it was embarrassing that I had to ingest these little things every day just to be normal.  I hated my pills.  I resented my pills.  I saw my pills as a weakness.  I saw my medication as a problem in itself, even though I was fully aware it was meant to be part of a solution to a different problem.

Eventually I realized that it’s just a pill – that’s all it is!

It’s not a sign of a weakness, and it’s not a bad thing.  It’s a pill; a medication to help me get better.  Everyone needs a little bit of help with something – I happen to need a little bit of help balancing my mind.  And that is perfectly okay!

The medication works, and I am so thankful that it does.  Because for a long time, I was certain nothing would.

What the f#$% is schizo-affective disorder?

Schizo-affective disorder and I have gotten to know each other pretty well in the recent years, but not many other people know what it is.

I remember when I first heard of it. My GP and I were sat in his office. We were discussing my downfall, and finally working on a referral to a psychiatrist. He needed to give them a preliminary diagnosis. He heard me out – he listened to my symptoms, looked back on notes from previous visits. He told me not to flinch at the words, and then he said them: “Sounds like schizo-affective disorder. I can’t diagnose and treat you for it, so we need to scare the psychiatrist into seeing you as soon as possible.”

Apparently schizo-affective disorder was enough to push me to the front of the line. I had an appointment within two days.

It sounded so intimidating. The ‘schizo’ part just screams out ‘you’re crazy!’ I didn’t know what to think of it. Mainly because I didn’t really know what it was. There isn’t exactly a way to describe it clearly. In fact, it’s not very well understood at all – not even by the doctors – which is why it took so long for me to be properly diagnosed.

Schizo-affective disorder, at the end of the day, is a mix-match of schizophrenia and bi-polar disorder. It’s a hybrid of two very well-known mental illnesses, but it means something different for everyone with the diagnosis.

Some people with schizo-affective disorder may only have very mild schizophrenic symptoms. Some may have very severe ones. Some may have seemingly none at all.

Schizo-affective disorder can disguise itself unintentionally. Since it embodies characteristics of other better-known, more common disorders, it can be extremely difficult to recognize.

So difficult, in fact, that it took over a year for my doctors to finally agree that I might indeed have the disorder.

The problem with diagnosing a mental illness is that there is usually nothing physical to examine. Doctors rely greatly on a patient’s own description of their symptoms. The problem with this is that many people suffering from mental illness are unable to articulate what’s happening in their mind, and therefore can’t always provide the information the psychiatrist needs. I was no different.

My doctor asked me if I had any close friends who would volunteer their time to speak with him.

About me.

That made me feel uneasy. One of my main concerns was people talking about me. It’s the last thing I wanted. At first I refused. I used the excuse that no one knew what was in my mind anyway, so they’d be useless. He assured me my behavior was just as important as my thoughts.

Nick came with me to my next appointment.

We sat there all together, the three of us. I remember feeling really nervous. I never knew what to say at these appointments. What was I supposed to tell the doctor? He’d ask me how I felt, I’d say I felt bad. He’d ask me why, I’d say I didn’t know. Isn’t that why I was there in the first place? Because I didn’t know? Surely, if I knew why I felt so horrible, I would do something about it that didn’t involve sitting in an uncomfortable office.

I started to cry. He asked me why I was crying. I didn’t really know why – I just felt overwhelmed. He told me to relax, Nick told me to relax; everything was fine. They started to talk about my moods, my behaviour, my sleeping patterns. I don’t remember any specifics. I was in the room but I was in another zone.

He talked with Nick for a while, then he talked with me for a while, and then Nick and I went home… with another few surveys to fill out.

Eventually, many appointments and surveys later, my psychiatrist came up with a final diagnosis: schizo-affective disorder. Surprise, surprise, my GP had been right all along!

In order to decide which medications to use, we had to really discuss my symptoms in depth. As with any mental illness, schizo-affective disorder needs to be treated differently depending on how it is manifesting itself in the patient. There is no magic medicine designed specifically to fix up a person suffering from the disorder.

For example: schizophrenic symptoms come in many forms. Auditory hallucinations, visual hallucinations, paranoia, delusions, disorganised thought and speech. The list goes on.

The affective (mood) symptoms also vary greatly. Some patients might suffer only slightly – others, nearly exclusively – from mania. One person’s manic symptoms may differ from another person’s. Some people may experience depressive episodes more strongly. Some, like me, may have a nice mix of the two.

For me, the ‘affective’ aspect of the disorder was always quite clear. That’s probably why I was misdiagnosed as having bipolar disorder. I had week- or month-long episodes of depression, followed by episodes of mania lasting a similar amount of time. This had already been going on for years.

My schizophrenic symptoms, however, were harder to pinpoint.

I had hallucinations, but I was always able to recognise that they were simply that: hallucinations. Typically, they’d be visual (but I did have auditory ones as well): I’d see a person out of the corner of my eye. If I kept them in my peripheral vision, they were very much there, but as soon as I’d turn to them, they’d disappear. This is how I was able to distinguish between real people and fabrications of my mind. Since I was aware I was hallucinating in the moment, my psychiatrist figured it didn’t really count, and more or less dismissed the hallucinations entirely.

One symptom he definitely focused on was my delusional thinking; I would create wild stories in my mind and believe them. I was convinced everyone in the subway was staring at me and talking about me. I thought people were watching me all the time. At one point, I genuinely believed Nick was an alien. He has a vein in his forehead that sometimes buldges out, and my mind came up with an explanation for it: he’s an alien, obviously.

Despite having these crazy thoughts on a regular basis, I would also have spouts of clarity where I realised how ridiculous I was being. Did I really think that Nick was from another planet? At some moments, yes; at others, no, of course not. I was always sane enough to hold back from sharing my ideas with people, because I didn’t want them to get the wrong impression and think I was a whack job. I definitely did have some crazy thoughts, but the crazy never took over my mind for too long.

I always snapped out of it.

But the reality of the situation was that, although I wasn’t suffering 100% of the time, I was still suffering. I was still delusional and paranoid. Although I could distinguish between hallucinations and reality, the hallucinations were still very distracting. These things were having a big impact on my every day life, and something needed to be done about it.

So, we started to experiment. We stuck with the quetiapine, a drug I had been on for months to help me sleep, and tried a few different medications before we reached a cocktail that was suitable. Finally the tunnel was getting a little brighter.

My treatment doesn’t rid me completely of the effects of my disorder; I still suffer from all things listed above – just on a much, much milder level. I can live like a regular person 75% of the time, but I still have days where I can’t get out of bed.

Schizo-affective disorder is probably going to affect me for the rest of my life but, it isn’t going to dictate my life. That’s my job. I’m still in charge here.

The beginning of schizo-affective disorder

Looking back, I realise I was 21 when schizo-affective disorder decided to make itself known. This is around the time it strikes most of its victims – I was no different. I wasn’t familiar with the disorder back then, but we’ve become pretty well-acquainted over the last couple of years.

I didn’t just wake up one day and recognize it – I think I always knew I was a little off. But, I guess things just gradually got more and more ‘off’. Eventually there was no denying that my mind was no longer stable.

I’d been on anti-depressants regularly since I was 19. I had never seen a psychiatrist; I never felt like I needed one. My GP and I decided together that my condition wasn’t severe enough to warrant the long wait it would take to get me into a specialist. He prescribed me some Sertraline and sent me on my way.

It helped. Until it didn’t.

After being on varying doses of Sertraline for over a year, my symptoms started to worsen. It went from bad to ugly. Quick. I later found out that while Sertraline can help depression, it can actually have negative effects on those with schizo-affective disorder.

First, it started with the sadness. That overwhelming feeling of worthlessness. That stereotypical depression everyone talks about. I felt useless. I felt alone. I felt tired. I cried. All. The. Time.
It didn’t matter where I was, or who I was with. Those feelings were constantly nagging at me, and I couldn’t silence them no matter how hard I tried.

Then came the madness. I went berserk. I would flip out over nothing. I was incredibly jealous. I was constantly angry – irrationally angry. I created these ideas in my mind – these scenarios where people were secretly plotting against me. Everyone was an enemy. Everyone hated me – I knew it. No one actually cared about me. They didn’t want me around.

That would loop around again, and after a few weeks of being angry all the time, I’d snap back to reality. For a minute. I’d realise how insane I had been – I’d look back at all the things I had said to people, the thoughts I had had about people, and I’d hate myself for it. I’d be embarrassed by it. And then, I’d get depressed again. I’d tumble back down the sadness tunnel and I wouldn’t have the energy – or the desire – to climb back out.

One day in particular stands out to me.

I finished my day at work, and walked outside. It was always like this: an almost immediate change in my state of mind. At work, I could pretend. Because I had to. Outside of work, the break was over.

I knew I didn’t trust myself that day. I knew that if I was left alone, I was going to do something. So I called Nick. I asked him if he would hang out with me when he got home from work. It was a Friday night, and he had plans. Obviously. Expected. It’s Friday. People go out on Friday. It’s the end of the work week. We live in the beer capital of the world: Friday is beer day!

But it wasn’t okay for me, and I knew it. But, I cared more about what people thought of me than I cared about my actual self. I didn’t want to be the ‘nagging girlfriend’ I already feared his friends thought me to be. So I pretended it was fine.

“Okay, so I’ll be alone tonight.” I thought about it, and all I could do was cry. It was one night. One night I was going to be alone. Just one night, and I couldn’t handle it. I can’t begin to explain what was happening in my mind, because I’ll never understand it. It isn’t me. I just knew I couldn’t be left alone.

So I sent him a picture of the train tracks, and then I turned off my phone.

Why did I send him a picture of the train tracks? A number of reasons, I’m sure.

I think the number one reason though, is because at this time, I still struggled with actually asking for help. I hadn’t admitted to myself out loud yet that I needed it.

I took the first step by calling him and asking him to stay with me. He said no, but only because he had other plans. And because I never told him I needed help. I was really struggling. But how was he supposed to know that? Having him reject my well-disguised offer to save my life left me feeling even more hopeless.

But I still didn’t want to give up just yet. So I sent him those train tracks. Then, I turned off my phone, and I went home. I ran a bath. I had a few drinks. I got in the tub.

Unbeknownst to me, Nick is in a panic. He probably realized, thanks to those train tracks, what that phone call really meant. He probably remembered my unsteady voice on the phone, and pieced it together. After trying and failing to phone me, he left work early and rushed home. He got there just as I was falling asleep in the bathtub.

This was only the first of several near-suicide attempts. Thankfully, I never even came close to accomplishing what my confused mind was telling me to do.

After that day, Nick never even hesitated about staying home. I’d get angry at him for it. I’d blame him for his friends hating me. After all, they ‘hated me’ because I was the ‘nagging girlfriend’, right? What do nagging girlfriends do? They prevent their boyfriends from going out and having fun. Ultimately, yes, I was preventing him from going out and having fun. But I wasn’t doing it on purpose, and he was never resentful to me. It was always his decision to stay home. That’s all that should have mattered to me (but of course I didn’t see it that way then).

This was only the beginning of what turned into over a year of serious struggle. Not only for me, but for everyone around me.

My doctor decided it would be best to get me into a clinic to diagnose me properly. I agreed to go for two weeks.

While I was in the psychiatric hospital, I had to fill out a number of surveys. I had regular meetings with psychiatrists. I had brain scans. I went in for electrocardiography. I had to have blood and urine tests done. They encouraged me to attend group therapy sessions, but I never went. I left the hospital after one week, with a diagnosis of bi-polar disorder type 2.

After my experience in the hospital, I didn’t want to see any doctors for a long time. I avoided my psychiatrist like the plague. I didn’t go to my appointments, and I never called to reschedule them. I took the medicine they gave me at the hospital until it ran out. Then I didn’t take anything at all. I’m sure I don’t need to tell you that I started to fall back down the tunnel within a few days.

Even then I was still stubborn. It had been so long by this point that I was embarrassed to go back. I thought about getting a new doctor altogether, just to avoid telling mine why I disappeared. Then one day, something took over me. I was in town, and almost on auto-pilot, I walked to my psychiatrist’s building, went up the four flights of stairs to his office, went straight in, and asked for an appointment ASAP.

They hadn’t seen me in months. I never checked in after leaving the hospital – somewhere my psychiatrist had actually sent me himself. They weren’t bothered at all. They were just glad to see me again, and booked me in for the following week. Breathe. Relax. Relief.

When I finally went in for my long-awaited appointment, my doctor wasn’t happy with the diagnosis I had been given at the hospital. He wasn’t happy with the medication I had been on, and he wasn’t happy with the fact that I only stayed for one week.

He wanted me to go back. I refused. He said it was for the best – that way I could be constantly observed during all courses of whatever illness I was suffering. I could get a proper diagnosis and treatment could start right away. I still refused. He couldn’t admit me against my will, so he had to accept my choice and treat me outside of the hospital.

He gave me more surveys to fill out, and started me out slowly on some new medication. The first problem he wanted to tackle was my sleeping patterns. Or, lack thereof. He figured if I could get some well-needed sleep, my head would be more stable overall, and it would be easier to diagnose me. He was right. He prescribed Quetiapine, a god-sent. It’s an anti-psychotic which can be used to treat insomnia in low doses. Perfect for me. It worked, and it still works to this day. But it only fixes half the problem.

We still didn’t know what the other half of the problem was at this point.