Sorry, it’s the ubiquitous birthday blog, and as a sign I’m getting older, I had to look up the spelling, and to be honest, remind myself of the meaning of the word ‘ubiquitous’. Those grey cells are slowly returning to the ether…..
So, I’ve made 48 passes of the sun so far and we’re on to 49. Bon voyage!
Ok, enough of that. It’s been 6 weeks since the last update. What’s been occurring?
Well first of all there was the time period before I got kitted off to Reha. It was a torrid couple of weeks as I was dreading going away. I haven’t slept in another bed for around 8 years. Of course, you know me too well, when I say ‘slept’……..
I spent my time going to the gym, drinking wine (now and again) and taking too many Zolpidem. I had to, it was the only way I could get some ‘time out’ from life. By the way, Zolpidem (Ambien), really is a shitty drug. Try and keep away from it if you can.
Then it was off to Reha, which was the personal hell I thought it was going to be. Forget any ideas that the process was there to offer me help in anyway – it ended up just being a tick box exercise to see if I was capable of work. I was supposed to be there for 5 weeks, but I managed only 3. I signed myself out and headed home in time for Christmas (and just in time for thewife to break her big toe, ouch!). I am not sure what impact this will have on me, but I’m not expecting anything positive – I’m talking about quitting Reha, not the wife’s swollen digit. I think we are heading in the direction of me being declared berufsunfähig. Which would mean no more work as a teacher, but as someone who has no German-recognised qualifications, it would leave me a little limited as to what my next step should be. It’ll all come out in the wash early next year.
I’ll probably write a blog about Reha at some point, let the scars heal first!! I even ended up on Doxepin while I was there (promethazine was no longer working) – I was pleading for anything that would help me get a bit of sleep before they filled my day with sport, lectures, unhealthy food, occasionally therapy and the night shifts at the clinic’s cafe. I stopped taking it yesterday – another failed attempt at taking a tricyclic acid based anti-depressant. It was just upsetting my stomach too much. So last night was a very bad night. Still, I got up and out to the gym and there’s a Peaches concert tonight!!
Oh, before I forget, the big double album Def Robot thing is coming out in a few days. Here is a taster…
It’s been 5 months since Tagesklinik. Wow, 5 months. A lot has happened in those 5 months. Or has it? To be honest, if you were to ask, “How are things?”, I would say, pretty much how they were this time last year. I rarely sleep. I have social anxiety. I am depressed. At least I have learnt to take every day as it comes and I know that I want more than just to exist until I die.
The first month after Tagesklinik was strange. I had definitely become institutionalised during my time there. It was actually scary to rejoin the ‘real’ world. Yes, I have my constants (thanks, Lost) – theWife and Frank – but it was strange to realise that the days were now my own. No more pottery. No more dance therapy. But also no more routine, no more people. I regularly met with a couple of Tagesklinik friends. On the one hand this was a good safety net. Here were people with whom I could relate to, we had shared ‘something’ during our time in the clinic, but, on the other hand, I was trying to rekindle the security of the Tagesklinik. I had become too reliant on them being there and it took me a while to realise that we all needed to move on. There was also an element that I was resembling the ‘evil one’ from Poltergeist and leeching off their joy of life to try and feed my own kindling reserves.
I restarted psychotherapy. It didn’t begin well. We hadn’t seen each other for 15 weeks. I was on a Tagesklinik high, I’d drank the Kool AId. I wanted to change everything. I now saw the benefit of social interactivity. I was going to be well. This rubbed my therapist up the wrong way. After 3 weeks and an honest talk we managed to started to work together again.
I was going to the gym everyday. I was going to therapy support groups. Wasn’t sleeping, but hey, stay positive. It’ll come, won’t it? I cut down on carbs, I still wasn’t drinking. I was still so tired…….
And so the weeks passed. I would make the regular monthly trip to get signed off work. I would go to the support group and moan about how tired I felt. I kept on with the music and the gym. I was unhappy, but not getting any worse. I would explain to people that the difference between me now and before Tagesklinik is that now I want to have a life, but I am really pissed off that I am too tired and too anxious to have one.
I decided to come off citalopram (against my psychiatrist’s wishes). Why? I didn’t think they were helping that much and I was piling on the weight. Plus a blood test showed that things were not going great with my metabolism (high glucose levels, high cholesterol levels). I went from 40mg to 0mg in a month. Pretty quick. It wasn’t that bad. A few brain glitches here and there but I was expecting worse. I actually felt like I had more energy. I also started to get a little more anxious about going to bed.
Which brings us to where we are now. No better. I still wake up 30 times a night, often not breathing, full of terror. I am shattered. I can’t concentrate. My thoughts are scattershot. This is even starting to read like a James Ellroy novel. I am still anxious from life. I want to shut myself away. The world has too much noise and social interactions are draining, with very little reward. I have started drinking again. A few times a week. I still think it helps more than it hinders (but then again I am writing this after bottle of wine)……
I quit my band (Moto). I now have very few connections to the outside world. I think I am happier for it……………..
With the aid of Dr Frank and TheWife, I managed to get through the Autumn months. There were some bleak moments and some feelings of guilt – I felt bad that I was letting the school and my students down. However, I was taking 30mg of Citalopram a day and it was definitely beginning to have an effect, as I was now capable of making phone calls and going to appointments. We reached Christmas with the news that I’d be starting at the Tagesklinik in January.
TheWife took Xmas off and we had a great break actually. We were both heavily involved in various artistic endeavours: me, writing the music for what would be the 2nd ‘Unreal Book’ podcast and she was finishing off her book ‘Nightshift’ – which BTW is actually going to see the light of day soon. We ate a lot and drank like fish – every day – for about 2 weeks. It was way too much. Sleep problems don’t matter so much when there is the promise of wine, port and chocolate at the end of the day. I knew it would be so easy for me to carry on like this – alcohol, unhealthy food, pills – but I also knew it wasn’t good. Time to change. And on December 29th, a date that is more commonly known as my date of birth, I/we decided to give up the booze. We’d been teetotal for 8 years in our 20s, so we knew it could be done, plus, they won’t let you into the Tagesklinik if you are drinking.
It’s really hard to explain the whole Tagesklinik experience. It’s just strange. Knowing me, as I try to describe it in this blog it might sound a little negative and that I’m mocking it, but for all its quirks, it was a very positive experience for me. A place where I felt safe and it came just at the right time.
One thing you have to get used to is the routine and, for an OCD junkie like myself, that wasn’t a problem. You had to follow the rules too and you had to accept that both the routine and the rules can be bent or broken, but only by the staff. It was like being in school in that respect. In fact it was interesting how much all of us patients seem to regress into a kind of child-like state during our time there. It’s as if we’d learned how to cope with school and this was just a past memory triggered back to life. Lunch was at a set time and looked like school dinners. We had break-time and then, at the end of the day, we had to put all the chairs up onto the tables. We called each other by first names – the patients, that is. The teachers, sorry, the medical staff were referred to as Frau und Herr, thus underscoring the balance of power, as if it were in any doubt. This reduction to our teenage selves actually helped take a lot of the pressure off: we didn’t have to make the decisions; we were not responsible.
Ok, so we didn’t have to make decisions, but there was something we had to make….and that’s pottery. Most of your time was spent preparing, making, sandpapering, firing, painting and breaking pottery. I was very, very crap. I don’t use the word ‘crap’ that often, as there is something archaic and slightly naff in its usage (just like the word naff), but it sums up my pathetic attempts at creating something, One of the strange things about the pottery class is that you are not allowed to say anything negative about these ‘works of art’, Now, I can understand this viewpoint when it’s concerning somebody else’s work, but surely you can slag off your own. I would try and push my fellow patients as far as I could with “What do you think of my decision to paint everything nut brown?” or “You say this cup is nice. Would you have it on display in your house?”. My proudest moment on this course was that yes, I did actually paint everything nut brown for the first 10 weeks, in deference to The Fast Show (except they used black) and that 70s Coventry City away kit. When I decided to break the mould and use other colours – I repainted everything because I was bored – it was thought that I’d had some sort of positive mental breakthrough.
Then of course there was dance therapy. I loved it! Especially those moments that resembled a junior school pretend-you’re-a-tree-in-the-breeze meets an avant-garde Bowie dance project. For a man who is totally inflexible and has no sense of rhythm, boy could I put on a show! It really helped to bring us together as a group…..
Music therapy was harder. It was 6 individuals battering the hell out of their percussive instruments while I tried to keep it together and bring some sort of order on a cheap acoustic guitar. It actually became one of my goals given to me from the music therapist to try to not take control and lead the others. We sounded like an insane Captain Beefheart – I wish I had recordings – Sonic Youth would have loved it!
Of course, there was individual therapy, but the group option was always fun. The session started the same. It was like the gun fight at the end of The Good, The Bad and The Ugly. Eyes furtively looking around the room. The silence was deafening. Who would break first and speak? For the first couple of weeks I found this excruciating, as I am the kind of person that has to fill a gap in the conversation, but with time I began to get a perverse pleasure from the discomfort all of us were feeling. It was actually a safe place and what’s said in therapy stays in therapy, although the language barrier could be tough. Obviously, when someone is emoting they start talking in really thick German. They pour their hearts out, maybe even cry and then they turn to you for support and you haven’t got a clue about what they’ve just said…….Would you like a tissue?
The only real thing I can complain about is the food. The food wasn’t bad, it was just that there was just too much of the sweet stuff. Lots of communal baking sessions. Lots of cake. Lots of biscuits. As one of the side effects of citalopram is weight gain (and I was now on the maximum dose of 40mg), I put on 7kg. Mostly thanks to the Tagesklinik sugar excess!
Getting up early everyday and forced community spirit was hard to begin with. I was very depressed. But with time and thanks to the dedication of the staff there (a big, big thank you to my therapist!) and wonderfully supportive co-patients, I felt positive and, after 14 weeks, ready to begin to take on the outside world again……
I had reached a low point. I left the A&E with help on how to get a Psychotherapist and encouragement to attend a Tagesklinik. Sadly, both of these had lengthy waiting lists. At the moment I was spending my days lifeless on the sofa, waiting for TheWife to come home so that we could crack open a bottle of wine, so that life was bearable for a few hours. Things needed to change. I started going to the gym. It was hard, I would spend most of my simple workout with my eyes closed (rowing, weights, running etc). My eyes were just too heavy to open. Plus, it helped to shut out all the information that I was incapable of processing. My workouts were very perfunctory, but at least I was leaving the house occasionally. Next, I really started to get back into music in a big way, working with Moto, reestablishing contact with a former band mate and getting The Unreal Book podcast started and getting together (in an internet way) with my old band Kerosene – which led, in turn, to Def Robot. I now had something to do at home. Unfortunately, I was still spending the days very much alone, often the first time I spoke was when TheWife got back from work. I needed help, it was time to connect with a specialist. Little did I know, that I was about to meet someone who was to have a significant positive impact on my life. The quite remarkable Dr Frank…….
The first time I met him, he was locked up, for his own good. He looked at us through the bars with a face of pure contempt. He cried out. We were told that there were already people interested in working with him and we had to wait several hours to see if he was available for consultation. He was, and we arranged for him to make a house call. This home visit is now in its 10th month.
It takes a while to gain his trust. He is a good listener though and replies, sometimes in a Brummie (Peaky Blinders) accent but mostly he speaks with a gruff voice, very reminiscent of the comedian Brian Gittins. He is quick with a put down – highly sarcastic. His choice in language could be better – you wouldn’t invite him to meet your mother. He is as well read as I am, quoting from various art films from the 1980s. He eats constantly and cries whenever he is hungry – which is most of the time. He always wants to eat whatever I am eating. He has a penchant for lentils, chickpeas and pumpernickel bread. If he gets frustrated with me he bites and sometimes even relieves himself on the floor – frustratingly close to his toilet. He leaves hair all around the flat. He is very similar to TheWife in many respects – you can decide which ones!
I couldn’t do without him. He seems to know when I am feeling particularly down. He will bunt against my arm and allow me to stroke and tickle him – you don’t get that on the NHS.
Sorry, Dr Frank is not available to take on any extra patients at the moment.
2018. Now that was a tough year. I am not sure how bleak this blog will be, plus, you might find there are a lot of misstakes, as I won’t want to reread this, so I apologise in advance.
I had been in a downward spiral for 17 years or so. I had survived them using will power, my OCD and my relative youthfulness(!) but for some reason, going into this year I felt old. No, actually, I felt spent. All those years had taken their toll and I was barely functioning anymore. Yes, I was drinking to medicate my way through life. Yes, I was taking promethazine ever more regularly, with ever increasing dosages. Yes, I was doing both of these at the same time. I just wanted to escape from being awake, being anxious, feeling terrible. I would get home from work, share a bottle of wine with TheWife and we’d do our Beavis and Butthead routine on the couch, mocking some unfortunate T.V. show. I would live for a couple of hours. The rest of the time I merely existed.
I would go days without sleeping. Nights where I could get an hour or so of uninterrupted sleep were seen as successes. Going to school each day was tough. Having to teach was really hard. I would start to panic that I wasn’t clever enough anymore to do the maths in front of the classroom. I feared logarithms (hey, at least I could sympathise with how the students felt!). I would always be anxious that I was about to have a laryngeal spasm. I was heavily depressed. Rarely would anything positive come from my mouth. Everything was dumb and gloom. Misanthropic to the max.
The school year ended. I’d made it. Surely the school holidays would bring a bit of relief. Sadly no, it got worse. I remember during the World Cup time going to see the Descendents – a band I’d spent my whole life hoping to see one day. It should have been a great night, but all I remember is trying to keep going. I’d not slept for a few days. I would lie awake during the night crying. Body and mind felt like it had had enough. I can’t really explain the feeling. Like an injured animal I just wanted to go off on my own somewhere hidden and curl up and then give up. This was the first time I felt like this but not the last….
So, I went to the doctors and got myself put back on SSRIs. This time it was Citalopram – the standard dosage 20mg. I also got hold of some Zolpidem, or Ambien as it’s known in America. This was my first real hardcore sleeping pill. It kind of works. After 20 minutes you are no longer here. I would then be unconscious for about 5 hours – on one occasion I managed to get my CPAP machine on in time but was out of it before I could turn out the light. The quality of sleep was still pretty poor though, according to the machine. Actually, it is not advised that you take this drug if you have sleep apnoea – whoops! The next day you feel pretty ropey and the chance of getting any subsequent sleep is pretty poor. This means I have developed a love/hate relationship with this drug. I’ve become quite addicted to its power of knocking me out, of taking me away from life for a while but it does increase my feelings of depression and is a highly addictive drug.
The summer came to an end and I returned to school. I struggled during the in-service week, managed 1 day of teaching having spent a few days without sleeping and then….I simply broke.
My dosage of Citalopram had been risen to 30mg (fairly high) and I’d had a night on Zolpidem. The chemicals in my brain were having a field day. I was no longer totally in control of my thoughts. I would fantasise about having general anaesthetics and just being put to sleep; about running and jumping off buildings – this wasn’t so much a question of wanting to die, just to be free, the idea of what would happen on the landing didn’t come into it. These thoughts were flowing, repeating, driving me crazy. I would close my eyes and see these images or flashing colours. I became fixated with a picture that was on a Black Flag flyer. In other words, I’d lost it.
I knew I was in trouble, so I did one of the hardest things I’ve ever had to do in my life. I phoned my wife – who had gone to work at this point – and said, “Don’t worry. I am not going to do anything bad, but I am going to accident and emergency. I am having strange, dark feelings. I will call you when I am there”. The walk to the A&E was hard. I wanted to curl up and give up. I felt so bad for what I was putting her through but at the same time, it was my thoughts of her that kept me going.
It’s seems so weird to try and sum up that morning in just one paragraph, it was so much more than that.
After several years of threatening to do it, TheWife and I have finally decided to write a book together. For me, it’s a kind of therapy (as you’ll see, if you should choose to read it) and has definitely been inspired by my recent stay at a Tagesklinik here in Berlin.
It’s hard to say exactly what genre of book it is. It’s a bit Sci-Fi, but not in the alien worlds kind of way. It’s a bit fantasy, but it ain’t no Lord Of The Rings and it’s bit autobiographical, but it’s not our memoirs!!
We plan to publish a chapter each week using Wattpad. We will take in turns writing the chapters. We have only slightly discussed where we see the story going but all bets are off on how we get there.
The first chapter has been written by The Wife. If you have a moment, have a read – it’s free…
I returned to school and was slowly tapering off the SSRI (never, ever suddenly stop taking them, by the way). I would still have slight manic phases. I started compulsively buying LPs – this carried on until we started running out of room, so I sold them all ( I felt like a character from Psychoville). The ability to have sex slowly returned – I later found out that for some people it never does after taking this medication. After a 15 year pause, I started playing music in bands again. I actually had the confidence to go into rooms with people I didn’t know and pick up a guitar. In addition, my first year back at school went pretty well. Not vintage Mr Hancox, but not bad.
All well and good, but I still couldn’t get a good night’s sleep……
In fact it was getting even worse. The nights were so long, jerking awake every few minutes, I was taking promethazine several times a week, Vick’s Medinite as soon as I had a hint of a cold and drinking on the other nights. I was also experimenting with……..milk and nutmeg. Yes, we reach for the hard stuff in our family! It does work as a kind of relaxant. Warning, don’t overdo the nutmeg – or it’s a permanent goodnight (no really!!).
I decided that I needed to go and do a sleep study one last time. Even though I had previously done 4 with little success. I had a sobering talk with the doctor, “You do know you are taking years and years off your life…” after which me and The Wife decided that we, independently, would give CPAP another go.
For those of you that don’t know, CPAP is an item devised to help people with snoring/breathing problems by delivering at a higher pressure – hopefully, forcing open your airways so that you don’t snore. This takes some getting used to!
First of all you have to decide which type of machine CPAP, Autoset, BiPAP or the central apnoea machines (not sure if they have a collective name). All of this is basically to with how much help you need tolerating the machines (except the central apnoea ones- they are special, more later!).
Then you have to decide on which type of mask: full face, nose or nasal pillows.
We bought a reconfigured Autoset from the manufacturer and spent about €1000. We could, and have in the past, got one from our medical insurance but, unfortunately, I just can’t get on with the brand that they use. I use nasal pillows with it and need a chin strap to keep my mouth shut. If your mouth flops open, the air just goes up your nose and straight out your mouth!
I’ve had this device for a couple of years now and I think I am finally getting used to it. Yes, it does sound like The Wife is sleeping with Darth Vader – he’s quite sexy in an evil way, so it’s not a problem. In fact, I think The Wife finds it reassuring to hear me breathing and to know I’m still alive – sometimes I hold my breathe for fun, just to see if she still cares! Yes, you are connected to a machine, so moving around in the night is a bit of an effort. Yes, you have to dismantle it a bit when going to the bathroom in the night and yes, it has the most bizarrely powerful neon light that you have to cover with something if you want to get any sleep – top marks for the design team!
There is also a humidifier attachment that requires water, so that the air is not too dry. The machine needs regular cleaning.
I wake up with a very sore nose from the pressure of the nasal pillows.
I wake up with strap marks on my face that usually take a while to disappear
I still wake up a lot. Often coughing.
I swallow so much air during the night that I either wake up drowning in oxygen, or wake up in the middle of the longest belch in recorded history.
I wake up with a bloated belly.
More belching and farting
On a hot night it feels a bit claustrophobic
Going to bed has to become a planned routine
1. I sleep slightly better (and I mean slightly).
2. The Wife cannot hear me snore anymore
So, I went to the sleep lab and told them I had my own machine. The doctors were not impressed. They like to tell you what to do – we’ll have none of this thinking for yourself and taking control of your own health. The results of the check were interesting. Not only was I having obstructive apnoea but also central apnoea, which is when your brain just doesn’t trigger the body to breathe. It’s mostly a symptom of…*cue drum roll*…not getting enough sleep. To treat this I was given a new machine. One of the special central apnoea machines (€3000 a pop but at least I wasn’t paying this time). Sadly, it was impossible to use. You have to breathe in time with the machine and if you get out of synch with it, you get no air. How unrelaxing is that!! Tried it for a while, no sleep at all. I reverted back to my old machine and that’s what I am using to this day…….