PRIVILEGE AND SHEER DUMB LUCK

I’ve just been for a long walk, thinking about the post I just uploaded here. While it is great that my doctor, and his team (including numerous other people), was able to help me so much, I find myself unable to let go of one piercing, painful issue:

I could only get all this fantastic and wondrous help because of Michelle, who works at a job where she gets paid more than the average salary. This means we can both be covered by the maximum level of private health insurance. And that in turn means I don’t pay anything to see my psychiatrist; it’s bulk-billed (he once told me, when I asked about this, because he used to bill me upwards of $150/visit, “I don’t need the money”). Each of the three times I was laid up in hospital last year, it cost about $200 for admission, and that was all, for 3 x 7 weeks of inpatient care. I only had to pay at the end of each stay for the medication I consumed.

This is a high-end private psychiatric hospital. In their orientation book it does say patients who don’t have such robust health insurance, who are on Medicare, have to pay $800/week, each week, to get the level of care I received.

This is outrageous. I am no more deserving of that level of care than anyone else. I’m just ridiculously lucky. I’ve long thought I was the luckiest man in the world, but there are times when you have such a painful apprehension of the magnitude of your own privilege (white, male, middle-class, middle-aged, home-owner, university-educated, no serious debt) that you can hardly stand to face anyone.

It’s unjust that the high level of care that I received, and continue to receive, is only available because of my fortunate circumstances. This bothers me very much. It makes me burn.

POINT OF INFLECTION

Today at my psychiatrist visit, it was all the usual stuff with medication review, discussion of mood, ups and downs, and all the usual stuff.

But then he surprised me out of my gourd: he said, “Thank you,” for placing my faith in him, for going along with his treatment plan this past year, for, I suppose, not being angry with him over the unexpected ghastliness of the whole exercise.

I was taken aback. It has never occurred to me to be angry with him. The “medication change” plan from last year was meant to take, at most, a few weeks. But here it is more than a year later and we’re still working the problem, seeking a fine balance between treatment and function, that lets me live an ordinary life. Indeed, today my doctor filled out a prescription for an anti-anxiety drug, Topamax, and talked about cutting back one of the two anti-depressants I take, Cymbalta. He says it’s time to “simplify” the baroque complexity of my medication, and fair enough if I can get decent coverage without quite so much faffing about with pills.

During the truly bad times last year, I did contemplate changing doctors, not because I wasn’t comfortable with the way things were going, but because of the near-impossibility of actually seeing the guy. I was one of dozens of patients under his care, and for the most part I had to make do with seeing one of his junior doctors, one of the registrars. Who were excellent doctors in their own right, and would all go on to become consultant psychiatrists in time. But I was always in a hurry to get well again. I wanted to be fixed now.

Because every time I saw a registrar to talk about my case, they would tell me that they would have to talk to my consultant and get back to me, and that could take days. When you’re badly strung out, and vibrating with spiky anxiety, that wait seemed eternal. I did sometimes see my actual doctor, when he knew I was in catastrophic shape. But for the most part I was assigned to the registrars.

I did understand that my doctor had dozens of patients in the hospital, plus his usual line-up of outpatient visits in nearby consulting rooms. I also saw him sometimes in the hospital, in the midst of meetings, bustling about carrying laptop and files, talking on the run. I didn’t know it then but he saw me at those times, too, and was deeply worried for me. Sometimes I wondered not so much about when he might squeeze in a few stolen moments for me, but about when he might see his family.

I think he has come to regard what happened last year as an horrific mistake, something so dreadful that he would not recommend it to me again. I think he feels sorry for what happened to me, and that was why, today, he thanked me for staying the course, and having faith in him.

While I would not say it was a pleasure, I would and did say it was no trouble. It was also worth it, to reach this point, in far better emotional and psychological shape than I have been in for years. It has been nothing less than a transformation in my life, much like everything that changed in my life in 2012 when I broke my arm. This experience has certainly been a personal crisis, bit also an inflection point, from which I have a new trajectory.

I should be (and have, many times) thanking him.

TURNING POINT

Tomorrow I’m off to see my psychiatrist again. Last time I saw him (two weeks ago) I impressed upon him how dreadful I was feeling about runaway weight-gain, which at least in part is a side-effect of the drug Nortriptyline. I asked him what other treatment options he had, other than bombing my illness with that drug.

He is very reluctant to change things too much. It was so difficult just getting me to this point–my mood is consistently pretty decent, as long as I don’t get thinking about my weight (see my earlier post, The Scales)–that he is loath to mess up something that more or less is working.

He told me last time I saw him that he was thinking about changing one of my other medications, Latuda, for an anti-anxiety drug called Topamax, in part because of that medication’s reputed side-effect of weight-loss. It’s that rare thing, a psychiatric medication that doesn’t make you stack on the kilos. My only concern about this is that I was on it for a couple of weeks last year in hospital, during which time I had to urinate so often I was more or less living in the loo. I have mentioned this to my doctor. He says that at the time I was coming off and going on to so many different drugs that it was hard to assess whether it was the Topamax causing the problem, or what. I’m also on a completely different set of meds at the moment from those I was on last year. Maybe the constant urination thing had more to do with my medication situation last year, and won’t be a problem now.

As for the possibility of quitting the Nortriptyline altogether, the doctor wants me to organise a sleep-study, and a blood-test to check my blood-levels of the drug. I have sent the sleep clinic a request, but they have yet to get back to me. I’m still in the process of organising the blood-test.

The other thing that has changed in the past two weeks since I last saw the doctor is that I’ve managed to lose 3 kg. I have altered my diet and eating patterns, and this has arrested the crazy trajectory of my weight-gain. I thought it was out of control, that nothing I tried was helping–but that was before I really, seriously tried. One day recently the scales told me I had reached 127.1 kg, up from my lowest weight, recorded while I was in hospital, of just over 114 kg. Since then I’ve been working hard, mainly reducing as much as possible the tasty treats, without stopping them altogether. This morning my weight was 124.2 kg, exactly 10 kg off my record best, my “personal least”. I would dearly love to get back down there, and keep it going down. I still want to go sky-diving when I hit 100 kg.

The doctor also asked me how I’d feel about trying again with the repetitive transcranial magnetic stimulation (rTMS), a treatment I tried last year, but which I hated. But now I feel like I could try again. And if it meant no longer having to take quite so much medication, I would be all for it.

Wish me luck!

WEIRD KID 1

It was a weekend afternoon, the sun well on its way to the horizon, and I was a little kid, maybe eight or nine, and we, the parents and I, had come to visit my Uncle Bill and Auntie Rita.

The thing is, though, when we arrived, and it was time to get out of the car and actually go down the steeply sloping red path (manicured lawn on each side), I could not bring myself to exit the car.

And this wasn’t the first time.

By this point Mum and Dad knew it was pointless arguing with me (tears, yelling, the whole catastrophe), so they got out of the car, deeply not happy with me, and they went down the sloping red path, up on the porch, knocked and were welcomed. I stayed in the car, in the metal box of heat, starting to sweat, and feeling a tangle of sticky, horrible feelings.

I knew I should be with Mum and Dad in the house. And I did love Uncle Bill and Auntie Rita. They were wonderful to me at all times. Uncle Bill was a retired grocer. Auntie Rita, ten years older than Uncle Bill, was my dad’s father’s sister, as far as I could figure out. I mainly remember her kindness and her sweetness.

But I also remember I was deeply weird around them. I would sit in the car for, it felt like, hours. Sometimes I would muster up the nerve to go down the path to their door, and they would welcome me, and I remember they never made a big deal about it. It was as if I had simply been unavoidably delayed, but was here now, and that was lovely.

I remember feeling so shy and very likely anxious that I would burrow in next to my mum on the lounge room couch, and sort-of try to hide behind her.

I would hear about all this later. It was embarrassing, and not right. But I couldn’t help it. It also didn’t have anything to do with Uncle Bill or Auntie Rita. They were lovely. I was blessed with a wonderful extended family. No, the problem was me, and the way I just didn’t much like being with people. Being with people made me feel on edge, not sure what to say or how to just be there with everyone. I was quiet, usually in my own world, even when otherwise present.

From this distance I no longer remember whether I did this anywhere else. I have fleeting fragments of something that might be memory telling me I did do it with some friends of the family, and possibly when we visited my maternal grandparents in Fremantle, but I’m not sure. I might ask my parents what they remember. Certainly they have told me many times that I was a “difficult” kid in many ways. And probably most weird, and most difficult when it came to food and eating.

But that’s a story for another time.

HELPFUL BOOKS

I’m not much into self-help books, and don’t plan to write one, because I’m far from an expert. I’m not even an expert about myself and what I’ve been through.

Over the several months I’ve been visiting my psychologist, she has recommended books to me that she thought might help me. The first of these was MINDSIGHT, by Dan Siegel, a therapist who uses mindfulness techniques to help his clients. It was this book that convinced me of the value and effectiveness of mindfulness as a way of changing your thinking about your illness. It was a very powerful read for me, and helped me very much.

My psychologist also recommended THE HAPPINESS TRAP, by Russ Harris. This one looks at a variation of mindfulness, in which you accept you have all these unhelpful and generally awful thoughts and feelings, but rather than trying to get rid of them, instead the book teaches how to pay less attention to them. Most important, for me at least, is the emphasis on living a rich, meaningful life, rather than trying to be happy. The author says chasing after happiness will generally lead to unhappiness, but that aiming to live a meaningful life is better, and more satisfying. Choose to do things, even in your spare time, that mean something to you, that are important to you. It’s because of this book that I’m writing again.

Last, MAN’S SEARCH FOR MEANING, by Austrian psychiatrist Dr Viktor Frankl. It’s a short book, and is divided between the author’s memoir of his experience in Nazi death camps, and a brief introduction to his therapeutic method, called “logotherapy”, which, like the Russ Harris book (THE HAPPINESS TRAP), is about pursuing a meaningful life. Frankl credits this technique with helping him survive the camps.

While I recoomend these books, I make no promises that you will find them as helpful or useful. I think people are too strange and various for that. But I did find them the most helpful to me of all the many books I’ve read, and you might get some benefit, too. I particularly endorse the idea of pursuing meaningful activities and endeavours in your life, where possible.

As soon as I understood the idea, the first thing that occurred to me was that my number one meaningful thing was writing. Writing is my thing. For a long time I forgot that.

MANIA

Everyone knows depression is awful. There have been many books about it from all kinds of different angles, including plenty of sometimes harrowing memoirs. I’ve written here about the horror of full clinical depression, too. Maybe you’ve read a couple of my earlier posts about it. As an experience I give it no stars. It is wretchedness. You’re left feeling like a World War I battlefield, picked over by carrion birds.

The thing about what’s called “bipolar disorder” (what was once called “manic depression”, and what a doctor, when I was 16, called “biochemical, bipolar, manic depressive psychotic disorder”) is you get two experiences that, usually, alternate. You get the full-throttle–or perhaps the no-throttle–depression that everyone knows about, and everyone hates. But you also get mania, and, to me, mania is worse. Much, much worse.

I have had this conversation many times over the years since I became what feels sometimes like a “professional patient”. Which is worse, depression or mania? It’s like that awful question wankers sometimes pose, “if your wife and your child were both drowning but you could save only one, which one would you save?” It’s an impossible question, or seems like it. For me, mania is worse, no question.

When you’re depressed, you can lie down. You can sit. You can stay in one place. Your thoughts come at you one at a time. They’re horrible thoughts, full of anger, accusation, criticism, and poison, but they come at you as if over a dial-up modem connection, at 33.6 kbpm. When you’re depressed, it doesn’t seem unreasonable to stay in bed for days on end. You don’t much want to eat (unless your interior voice is making you want to eat everything). Bathing is out. Answering the front door, or picking up the ringing phone is also no good. Depression is inertia. Your miserable mind congeals around your self-loathing.

Mania, on the other hand, is gigabit broadband madness, and your thoughts and ideas and feelings blast through and around your head faster than you can imagine. You can’t lie down. You certainly can’t sit. What you can do is move, walk, run, dance, swim naked at midnight in winter. You can walk all night long, and the whole time your mind is lit up like a movie premiere, searchlights and all, and you have more ideas per second than anybody in history, and all these ideas are BRILLIANT!

You get angry because your stupid made-of-meat mouth can’t keep up with the extreme bitrate of your thoughts. You can stay awake for days, just like if you were on methamphetamine.

But there is no possibility of rest or peace. You can try to lie down and close your eyes, but the whirling light-storm of ideas zooming around behind your eyes means you can’t rest, even though you are exhausted. Your useless meat-puppet body is not up to what your brain is doing. Because your brain is screaming, supersonic, oh and did I mention that everything is FUNNY? You are the funniest guy ever. You imagine going pro as a comedian. You imagine recording a comedy album. You might even begin writing one. And people you run into do seem to laugh. At least at first, you are in fact pretty funny. But your audience gets exhausted. You can see it, and you try to keep them, but your mouth can’t keep up. You trip over your million-miles-an-hour words, and you get frustrated the way you get frustrated over a computer that won’t do that one simple bloody thing–

You scare people. You can see it, and you are horrified, and you try to make them understand, that you’re okay, you’re a nice guy.

Then there are the delusions of grandeur, that you have uniquely penetrating ideas, key insights nobody else has ever understood before. You become paranoid about assassination, about people reading your mind.

Once, when I was 16, and I was in Sir Charles Gairdner Hospital’s psychiatric unit, I realised one day, sitting next to my dad, that my dad could hear my thoughts. He could hear me thinking. He naturally did not let on about this. It was a secret. He sat there, cool as a master spy, taking careful note of my thoughts, and even more careful not to reveal that he knew I knew.

When I’ve had mania, or manic episodes, I end up sleeping only because the meat puppet is exhausted. Not that there is any rest. You wake up, as if hungover, but with a bit of luck the phase or cycle is finished with you for now, and the guards can drag you back to your cell.

Because you can find yourself wishing for depression.

A YEAR AGO TODAY–The Worst of Times

Today, one year ago, things were bad.

“MELTDOWN UPDATE: Michelle Bedford; Marie Bedford: have just seen my doctor for a brief but welcome visit. Proper meltdown occurred. Major loss of reactor containment. Ye gods. Upshot: not getting discharged quite yet. Yesterday they were talking about maybe this weekend. Now I’ve said I don’t actually quite feel ready. Don’t feel “done” (in the baking sense). He explained (reminded me, really) that they have, in, essence, deliberately provoked a depressive phase by taking away my Clomipramine. I’m still making my way across that endless no-man’s land. The Zyban is still throttling up to full power. He said that in his judgement I’m a good 75% of the way there, but there’s still some way to go.

Good news: they’re quite happy for me to go home over the weekend for day-long visits (as opposed, say, to just the afternoon or a few hours).

Better news: he’s referring me to see a psychologist as well, someone I can really Talk To about Things and Stuff that my usual psychiatrist often doesn’t have time to listen to.

I was, I realise, starting, in a way, to feel a bit panicked about prospect of getting discharged so soon. That’s a weird thing to realise, I can tell you. But I want to be prepared. And now that I’ve spoken to him about all that, I feel much better. More relaxed.

Ye freaking gods, what an ordeal! :(”

UPSHOT: things are so much better now. By no means perfect, but I can go about my life. My major concerns now are some nasty side-effects. I’m no longer a building-site. I can make plans more than a few hours in the future. I don’t experience catastrophic teary meltdowns when Michelle leaves for work of a day anymore. I’m well enough that I can write, though some might question whether I should!

MISOPHONIA–THE TROUBLE WITH SOUND

We were out at a cafe, middle of a sunny Saturday afternoon. I was on day release from the hospital, and all excited that I could go home for the afternoon and evening.

The cafe was quiet, with only a few other customers, three of whom were trying to chat up the girl behind the counter.

A guy comes in, and orders a coffee. Girl behind the counter, pleased for the distraction, gets busy making coffee.

Michelle and I sat in the middle of the cafe, with plenty of unoccupied space around us. Another member of the cafe staff was sweeping or possibly vacuuming at the back of the room, because the place would close for the day pretty soon. We were among the day’s last customers. Michelle and I enjoyed our excellent coffee and cake. Michelle turned pages of the newspaper.

The guy got his coffee. I forget what he ordered.

As we’ve seen in coffeeshops in North America, this place had a separate bar area, in the middle of the room, right near our table, where you bring your coffee to add sugar, flavourings, and so forth. The guy with his coffee comes over to the bar. He removes the white lid.

Up to this point, everything is okay. I’m feeling a bit angular, a bit round-peg-in-square-hole, as don’t quite fit into this reality. By this point in my hospitalisation, I’m still a building-site, with part-built cinder block walls, a slab of concrete, and big piles of sand everywhere, with a scattering of construction-crap here and there. I’m a work in progress. But just at this precise moment I’m doing okay.

Then the guy with the coffee puts some sugar in his coffee.

I’m still okay.

Coffee Guy grabs a thin wooden pop-stick and begins stirring his coffee. It makes a little, repetitive sound as the stick bumps against the inside surface of his cup. It’s very faint. I can only barely hear it.

Even though that other cafe worker is still either sweeping up or vacuuming, and even those idiots at the counter are still trying to flirt with the barista girl, and even though Michelle is still poring over the rustling newspaper pages–

ALL I CAN HEAR IS THE GUY STIRRING HIS COFFEE AND I’M STARING AT HIM AND FEEL VERY MUCH AS IF I COULD KILL HIM WITH MY BARE HANDS.

I want to yell at him, though he is not even a metre away from me, to, “PLEASE STIR YOUR COFFEE QUIETLY!”

It feels exactly as if someone, some utter bastard, has insulted your sainted mother’s honour. As if someone is coming right at you with a wicked knife, and you know they will try to kill you.

It feels like you know, in the most fundamental cells of your marrow that if you don’t get up right now and leave, Something Bad will have to happen. And that guy is STILL stirring his coffee.

We leave. I sit in the car, breathing hard, my heart galloping, my hands shaking, nerves shredded. Adrenaline is gushing through me. Worse, acute mortifying embarrassment, shame, and anger are along for the fun-ride as well.

Because this is not the first time this has happened to you, and won’t be the last.

All last year, in hospital, I told my doctors I had this weird, debilitating sensitivity to certain sorts of sounds. Quiet sounds, repetitive, often at a high pitch but not always. Biological noises like chewing food, even soft food, the wet, smacking noises of people eating, even with their mouths closed. Chairs dragged across floors. Last year, as I came off my old medication regimen, I began to have this problem. My doctors understood that it was a sort of anxiety, but they knew little about it, and, as they had stared at me blankly about my writing-juju going away, they stared pretty blankly about this. Staff gave me anti-anxiety meds to ease things off.

All day long, from first waking to switching off the reading light at night, one of these noises could occur at any moment. And every time, I felt like murder. If you could in fact kill someone with your gaze alone, I would now be one of history’s greatest monsters. There would be bleak but popular anthemic songs on the radio, “He just don’t like chewing”. Everywhere I went, I was on alert, on edge, primed and ready, because it was only a matter of time before somebody nearby clicked his pen over and over. Or before I heard someone using a knife and fork against a china plate, making a little squeaking sound. There was always something.

One of my doctors one day asked to see me, and she gave me a printout from the web, with a Post-It. This problem I had, it turned out, had a name, and there were other people out there with it, or variations of it.

It was called misophonia.

The Post-It had info about a Facebook support group. The printout was from a website acting as a clearinghouse for reliable information about it. Which wasn’t, and still isn’t, a lot. The reason my doctors stared at me so blankly was because it’s a newly classified condition. There is very little research out there, but what there is so far suggests it is a neurological condition in which the fight-or-flight response in your brain is set off by these sounds. It bypasses conscious thought, and goes straight to those parts of the brain that control your response to threats.

Your brain is freaking the hell out because your lovely wife sitting next to you on the couch is eating a TimTam.

Once I’d digested the information the doctor had given me, I could have hugged her, I was so happy to know that it was a real thing, with a name, and that people are working on it. To know there are other people out there likewise freaking out because someone’s idly tapping their feet against the side of a table.

Mine seems closely correlated to depression and the anxiety that goes with it. I can tell when I’m not as well as usual, because I notice little sounds–suddenly I’m staring-as-if-to-kill at someone or something. When I’m doing better, those same sounds don’t bother me so much. It comes and goes, bit for some people it’s a constant thing, always on, always with the same intensity. On the discussion forums there’s a lot of talk about noise-cancelling headphones–are they worth the considerable expense? (Mostly. Peace of mind is worth paying for.)

What has also helped is working with my psychologist on various mindfulness-based approaches for helping to change the way I think about noise. And to stop me doing what some people with the problem do, who never leave their homes. The world is too full of threatening noises. And it is, too, but it’s better, quality-of-life-wise, for me at least, to try to stay in touch with the outside world. I’m reclusive enough at the best of times without adding this element.

One weird thing about misophonia: the noises you perceive to be threatening, that make you want to kill people, are perfectly okay and fine if you are the one making those noises. Michelle comes home from work, feels like an icecream on a stick. These come in wrappers. If she unwraps it, it would set me off. If I unwrap it, it’s fine. So I unwrap everything now.

I have had to learn to adapt the way I approach my life. It’s difficult, especially when, after a long period of feeling fine, you have a relapse, and suddenly it’s as if you can hear bugs giggling and tap-dancing because your hearing is so acute. People around me have had to learn to adapt as well. I hate and feel embarrassed that because of a problem that I have, other people have to tip-toe around and mind what they do. It bothers me very much. I have issues. But I can work on those.