State change

This morning, I've reflected on the changes that have occurred in the last few weeks.

A few weeks ago, I was depressed. I cried or felt like crying all day every day. I didn't leave the house, because it was too hard. I didn't write, or cook, or take photographs, read new books, or do anything much. I hadn't called my family in weeks. I hadn't had a marginally acceptable night's sleep either, due mostly to insomnia caused by the depression.

What changed?

 Nothing.

I have a history of depression and anxiety. Quite a long one, really. Caused at various times by various things. This one was mostly culture shock compounded by hypersomnia, and adjustment to a lifelong illness.

This episode was, in some ways, the worst I've had for nearly a decade, and it was very self reinforcing. It was a feedback cycle - I didn't do things, felt I should, felt worse, so I didn't do things. That's a pretty strong cycle, and the generated feelings did leave me pretty much comatose or zombielike, and in any case were rather effective at preventing me from doing anything much.

But the cycle was clear. That, in the past, has frequently not been the case. To get out of this all I had to do was break the cycle. Amongst other things, this would return me to my normal sleep patterns, which would also tend to enable me to do my normal activities.

I used anger. Not the whiny, useless, energy-draining spinlock frustration I'd been engaging in, but full-blown raging anger at the universe. I said a giant "FUCK THIS!" to myself.

That's really all it took for me to start the process of getting rid of the backlog of tasks and associated guilt. I was too angry to be guilty, and I was energised by that reckless anger.

Of course, the anger wore off. But by then I'd accomplished enough and set up enough frameworks to keep accomplishing things that it didn't matter. I was free from the black cloud for the first time in nearly a year.

The somewhat daily posts are part of this framework. That's where I tell myself that I am doing things; I can do things; I have done things - things which matter to me. Doing a load of laundry or restacking the dishwasher doesn't sound like much, until you realise that those chores are things I've been unable to do regularly for the better part of the last 3 years. Mundane in the grand scheme, yes, but a vital part of helping me feel like I'm an able person.

Another element is addressing my physical fitness, and setting up support frameworks to ease the personal load on my mind. I know that my lack of fitness is limiting my physical energy greatly, so becoming more fit is a really cracking good idea. I find it easier to keep appointments than to just make myself go to the gym. And I find it easier to achieve goals if I set small, measurable goals, and if I have encouragement from peers and friends. Rejoining the Nerd Fitness community is a part of that.

Creativity is also rather important to me. To a limit, the more creative activities I do, the more I can do - similar to physical fitness, I suppose. On the other hand, having deadlines (such as the daily deadlines imposed by the 365 project I attempted) doesn't work for me at all, mostly because of my physical limitations. I therefore set myself this goal: for six weeks, I will write at least one blog post a week that wasn't the daily update. The weekly post could be a ramble, a photography post, a cooking post, a book review, or whatever seemed good at the time. I'd say, judging by my archives, that this goal is doing what it's supposed to be doing. It's giving me sufficient motivation to write, photograph, and cook, without loading me with stress. So instead of a single post a week, I'm doing significantly more than that - and not only that, I'm creating elsewhere.

A broad theme I've been thinking along, which is implied by all the ways I've addressed my situation, is self-acceptance. Learning to work within my limitations. Before, those limits distressed me greatly, which shrunk the limits hugely. The goals I've set have a great deal of flexibility built in, even though they are highly specific and time-driven. Some days I'm not going to be able to do much more than lie on the couch and read. Some days I will be able to take photographs for six hours. I can't predict when in advance which day will be which, but I can take advantage of the good ones, and not stress about the bad ones.

This has the effect of greatly expanding my limits. I have fewer bad days when I'm generally positive about the direction of my life.

I have a very long way to go in certain areas to get back to something resembling what I once was, yet I have significantly more confidence in my ability to get there eventually.

It's looking up.

Questioning the 'aim high' ideal

I've been engaging in a round of goal setting and whatnot as part of self.fix() lately. Looking at the advice out there, it seems that a common wisdom is to set barely-achieveable goals, on the theory that if you fall short, hey, you improved, awesome. The idea is, the higher your goal (so long as it's within the realms of potentially realistic) the more you'll achieve in a given period of time.

This is not how I work.

I've tried that approach in the past, and what's happened is the first time I slip up I get a little bit depressed (because I know how slim the margin of success is) and it gets worse as time goes on. Not to mention that the further I'm going to undershoot, the more anxious (and depressed) I get about the whole thing as time goes on. Or, I go all out - and break myself in various ways.

This time, I'm trying a new approach: lots of small goals. Part of this is my Achievements posts; they're recording the tiny, mediocre, mundane goals I achieve on a day to day basis. A way of reminding myself that I am accomplishing something.

Likewise my fitness goals. My workout yesterday set a baseline from which to improve. Whilst I do have very long term goals, these bear little to no resemblance to my shorter term goals. 

So I have goals like eating twice a day, cooking four dinners a week. Improvements on my current situation, and a bit of a stretch for me right now, but certainly not earthshaking or awe-inducing.

I was asked yesterday by one of the guys at the gym what I'd aim to get out of a 12 week lose and shape up course. When I told him that I would aim to increment my exercises such that I would see an improvement over the course of a month, he ran off the spiel about aiming high. When I told him that I'd tried that, and it was for me a recipe for depression and failure, he was surprised, but became less so when I explained the burnout and the anxiety/guilt mechanisms behind it.

I know that with mediocre goals there is, for most people, a temptation to coast and rest on their laurels. Not so for me; until I get to my endpoints, every time I achieve a goal, there will immediately be another replacing it. When I get to the point where I can easily do 10 knee pushups, for instance, I'll start alternating with full pushups until I can do 10 full pushups easily. As I achieve each goal, I'll plan an extra increment beyond the new goal.

For me, continual adaptability is the key; life throws me curveballs, and in order for those to not completely throw me off, I need to have a maximally flexible approach. At the same time, I desperately need structure and plans to follow, otherwise I'll sit on my backside and do nothing at all.

The constantly incrementing mediocre goalset seems, to me, to be a way to satisfy these seemingly mutually exclusive needs.

What are your thoughts on goals, planning, goal setting, and how they interact with success and failure?

Stasis and words to live by.

I've written about my diagnosis here and here. Lately, I've come to the realisation that I'm not going to adjust by myself to my current situation. At the moment, it's a pretty good day when I manage to eat and dress before midday - and it's a very rare day indeed where I have a sufficient creative impulse to cook, take a photograph, or even think about writing or knitting or coding.

I've been in stasis for some months now. I rarely leave the house, I rarely want to do anything at all, and whilst I'm beyond the only-able-to-stare blankly stage, it isn't by enough to live a life I'd consider satisfactory. That, combined with the coping with a new environment stuff has given me a mid-range depression. Well, I'm not suicidal or anything like that; there are many days where I want to just curl up and cry, and I'm anxious about every little thing, but, well, I've been worse.

Still, this isn't good. The anxiety, for instance, is giving me on-and-off insomnia, as well as putting me into spinlock. If I break the spinlock enough to quieten the anxiety, I start passing out because of the hypersomnia (and not taking my meds because adding a stimulant to insomnia is a bad idea). If I'm too tired and not doing anything, my anxiety starts ramping up, and then I stop being able to sleep. It's not healthy, and it's ruining my ability to make the most of my limited energy. I'm talking to the doc about it, but it's a bit of a waiting game.

I have two sets of words that I'm trying (and often failing) to live by: the Prayer for Serenity, and the Litany Against Fear.

God, grant me the Serenity to accept the things I cannot change, Courage to change things I can, and Wisdom to know the difference.

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

The hardest thing is holding on to hope - the hope that I can find a specialist who can improve my quality of life, be it through mitigating my symptoms, or through helping me accept them. 

Living the label

A few months ago, I posted about getting my diagnosis of idiopathic hypersomnia. Anyone who's been given a diagnosis like this knows that the label and the meds are only the first step. Adjusting to the reality of a lifelong crippling condition is a much longer process.

I will have this disease, this illness, this incapacity for the next 60 years. Every morning, when I open my eyes, it will be there. Every morning, I will wonder, "Will the meds work today? Will I be able to function today?". Every night I will go to sleep thinking, "Did I set my alarm for too much sleep, or too little? Will I actually feel like I've slept in the morning? Will I be able to get out of bed? Will I be able to work tomorrow?". Every time I travel across a border, I will worry, "Do I have the right forms? Have the rules changed? Did the person I asked at the embassy know what they were talking about? Will I be arrested?".

This condition affects about one in 25,000 people. That means that in Brisbane there are perhaps eighty other people who have this. It's a grab-bag condition; the not-otherwise-specified category; the none of the above box. There is no specific set of symptoms, only symptoms that taken together, don't fit anywhere specific. It's enough to show there's something definitely wrong, and that it needs treatment, but that's all. And, unlike other grab-bag diagnoses, it has very few people in it, compared to the number of people in similar disorders. Narcolepsy, classified as a rare condition, is about 1 in 1500 people - or 16 times more common than idiopathic hypersomnia.

Given this, it isn't surprising that there is no known cause. There is no cure. There is also no research being done on finding a cause or a cure. It affects so few, and whilst it comprehensively screws over my ability to do anything, it's not life-threatening. There are far more urgent, more necessary medical issues that need the research, the funding, the understanding, and the cures. At least, there's a treatment.

Well, there kind of is. I don't know if it's just me, but some days, the meds don't work well enough. They work enough to keep me awake enough so that I'm not constantly going to sleep, but not enough so that I'm in any state resembling alert. I can get out of bed, shower, catch a bus, go to work - but I can't think, and it takes a tremendous effort to do anything other than stare blankly in the direction I'm facing at the time. I won't fall asleep for most of the day, but the usual midafternoon dip I will easily sleep through if given the opportunity. I already take a large fraction of the maximum daily dose - I can't go much higher on these meds. It simply isn't legal, to the best of my understanding.

I despair, sometimes. For the rest of my life, I know that awakening in the morning is going to be difficult, and that I may not be alert that day at all. I have serious doubts that I'll ever develop my career - who'd want an employee who carries these drugs, who despite that, can barely function some days, who has to call in sick because they're too sleepy to even get out of bed, despite the best modern medicine has to offer? My friendships have certainly suffered; I fall asleep at gatherings, or have to go early, or simply can't turn up at all. I can't make reliable commitments, because I have no certainty about whether I can physically keep them. I'm young, in the prime of life - if this is what I'm like now, I am truly terrified by how limited my life will be in my fifties, let alone older. How will I cope then?

How do I cope now?

On growing up as an alien robot among humans

Since tomorrow there's an awareness campaign about autism spectrum disorders running, it seems an appropriate time to write about my own experiences with ASD.

As a young child, I didn't really notice much that I was different. I didn't hang out with other girls much - they were given to playing games like 'house' and whatever that I didn't understand, whereas the boys played hopscotch and tag and hide and seek, which had rules. I played by myself a lot, too, and read books in the library. Looking back, for a child, I was pretty self-directed.

By the time I was around 8, it was becoming increasingly obvious that whatever I was, it wasn't normal. My reading level had reached an adult level the previous year, although obviously some concepts had no real meaning for me. My language development reflected the fact that I read far more than I spoke - I pronounced words oddly, and my word usage was often very formal and structured. I didn't really have normal friendships - I was already being fairly heavily bullied within my own grade, learning early the lesson that people are cruel and untrustworthy, especially children. I looked to adults and older children for companionship. My choice of reading materials varied between science fiction (Isaac Asmiov), fantasy (Tolkien - the Silmarillion was my favourite book), the encycolpedia britannica, and dictionaries. I also liked reading about dinosaurs, especially palentological taxonomies, and physics.  Looking at the wikipedia article on characteristics of Aspergers - I ticked all the boxes to a greater or lesser extent. I was feeling increasingly out-of-place at school.  Add increasing issues at home due to financial stresses in the family, and I began the long fall into depression and anxiety that have since characterised my life to some extent.

The first formal diagnosis was around age 11. High functioning autism, of the particular variety that would probably, today, be called Asperger's syndrome. This was around 1992 - Hans Asperger's definitive work wasn't really accepted as mainstream until about two years later, and certainly didn't hit the paediatric and psychological professions on Australian shores until perhaps 1998 or thereabouts. The doctor's recommendations were to get a cat, encourage social interaction, and don't let me be by myself too much. As we now know, that last one is a recipe for madness. My parents were doing what they thought was right for me - it was not their fault that best practices at the time were very, very bad for me.

I retreated from the world. I would speak if spoken to. I went to classes. Although I kept up my non fiction reading (graduating to simple chemistry, quantum mechanics, and black hole cosmology), my choices also increasingly became escapist - more fantasy fiction, much, much more. I would hide in the book cases in the library during school lunchtimes. At least, until I discovered computers - then I hid in the computer labs instead, getting there when they opened in the morning, and only leaving when I had to. I was constantly buffeted by the consequences of my lack of understanding. Imagine, if you will, a world where the only communication was the spoken word, and that word had all the emotional emphasis of plain text. Where allegory and metaphor were entirely abstract concepts with no basis in reality. Where words meant only their literal meanings to me, which had the effect of making the English spoken by everyone else a foreign language. I had technical proficiency in this language, but I couldn't make myself understood, neither could I understand the messages that were being given to me. It was much later that I gained this understanding of what was going on - at the time, I literally couldn't grasp the concept of what was going on. A bit like asking a blind person what colour is like, I imagine.

At age 13, I first became suicidal. I was intensely lonely, as well. There was quite literally no-one in the world who I could talk to - the school counsellor seemed to think that I didn't have any friends because I didn't make an effort. I was rejected by every social group except the real weirdos, and the international students. I did well enough academically, but the only real friends I thought I had were my teachers, and by the end of high school, one or two of my peers, who had similarly troubled states of mind. The only thing that kept me alive during those years was the fact of my brother's illness - I knew for a fact what happened when people around him were very sick or died, he ended up in ICU with a near-death experience. I didn't want to be responsible for his death as well as mine, so I didn't try. I also convinced myself that I was a bad person and didn't deserve such an easy way out. I must be bad, because people didn't talk to me, and shunned me, and that's what you do to bad people. In such a state, I graduated high school. I estimate my social skills were, at this time, at the level of most 4 to 5 year olds.

Over that summer between high school and first year university, I was finally told what was wrong with me - what the diagnosis I had received many years ago was. Not being told 'until I was old enough' was also a recommendation from the doctor. It was like a nuclear warhead going off in my skull. The first thing I did was read everything I could lay my hands on that had the slightest relevance to Autism, and it was a revelation and a relief. This is what I had been missing all those years. This is what I lacked - and, given sufficient effort, what I could surely develop. The next few months, using the internet, some very sympathetic and patient friends, and a great deal of energy, I slowly observed and learnt to mimic normal social behaviours. The process involved many discussions on why exactly people acted how they did - what prompted a particular behaviour, what thought, what emotion, what associations. I was - and still am, at times - incredibly distressed by the lack of literal meanings in human interactions, by the lack of straightforward relationships between thought and action, and by the sheer inconsistency from person to person. I would estimate that I spent upwards of 40 hours a week focussing on this, and working to improve my imitation of humanity. I have often described it as developing a giant look up table in my head of 'behaviour -> response', and that's a pretty accurate description of how it feels.

It's twelve years later, and I'm now 29. Even to the professional eye, I generally no longer present as having an autism spectrum disorder. It is perhaps ironic that it is the obsessive focus on minutiae that is a characteristic of the disorder that has allowed me to develop these skills. It has, to a large extent, become reflex to act this way. However, there is still large swathes of social programming that I have simply missed out on, and don't see value in adopting. I'm more comfortable in being slightly sideways from most of humanity, and on most days, can see myself as being human. I believe I have established solid relationships with other people, and that most of the time, I'm not too difficult to be around, or too opaque. Still, I'm always trying to improve.

Study vs life, and the difficulty of answering questions.

Life's been winning lately. In some ways, this is a good thing; I've been, in general, pretty happy and upbeat of late. I've been concentrating on me-stuff - getting to know my job and my workmates, exercising, playing games, and generally not taking on any stress.

However, the bill for that is just about to come due. I've got an exam on Tuesday, and since I effectively haven't (and haven't effectively) studied since early August, I'm not rating my chances of doing well on this exam particularly highly. Wine is a complex subject, and I don't have quite enough chemical background to really easily understand the wine chemistry I'm doing at the moment. If I had a week, and no other distractions, and my focus was working, I'd be confident. As it is, I have about 48 hours, a focus shot to hell, distractions left, right and centre, and a sprinkling of other things to do.

It doesn't help that what I'm trying to study and understand is so dry, and the resources given to me to help me understand are, in my opinion, quite insufficient. For instance, a question that I'm currently trying to answer: Hydrometry cannot provide an accurate measure of the sugar content of a fermenting wine. Why?

I think the answer lies somewhere in the following chunk of text:

The absolute density of any substance, expressed in units of grams per cubic centimetre, or grams per milliliter, is defined as: Density of substance = (Weight of substance / Volume of substance). Direct measurement of volumes may present a problem, especially where gases are concerned. As a result, it becomes convenient to use the ratio of the density of a substance to that of a recognised reference such as water. This relationship, known as specific gravity, is expressed as: Specific gravity = (weight of * mL of substance) / (weight of * mL of water) .
The density of water at 4degC is, for all practical purposes, 1g/cm^3. Because the weight of any substance will change as a function of temperature, any complete definition of specific gravity must include the temperature at which the determination was made, as well as the reference temperature for water. The temperature of the measured sample is noted above that of the reference. For example, the notation 15deg/4degC indicates that the specific gravity of the solution in question was made at 15degC relative to water at 4degC.
The concentration of dissolved substances in solution is related to the specific gravity but one should know, however, assume a simple and direct correlation between observed specific gravity and concentration in all cases because molal volumes of substances in solution may vary in a complex and unpredictable manner. Tables are available that relate concentration of dissolved substances to apparent specific gravity; those most commonly encountered in analysis of wine are for Brix, Baume, degrees Oechsle, and alcohol.
Tables usually reference only one or two standard temperatures; one must either measure the specific gravity at the defined temperature or, alternatively, employ a temperature correction factor. For the most accurate work, it is recommended that the solution be brought to defined temperature prior to measurement.
Hydrometric determinations are based on the principle that an object will displace an equivalent weight in any liquid in which it is placed. The volume displaced by an object is inversly proportional to its density. Hence a solution of high density will show less displacement than on of lower density. This relationship defines the basic principle of hydrometry.
A hydrometer consists of a calibrated scale within a glass tube that is usually constructed with a mercury or shot-filled terminal bulb to maintain it in an upright position. Hydrometers are available to read either specific gravity or the concentration of some component in solution. Examples of the latter include the familiar saccharometer and the salinometer.

Excerpted from Zoecklein, B. W., Fugelsang, K. C., Gump, B. H. & Nury, F. S. (1995) Wine analysis and production, Aspen Publishing, Gaithersburg.



The answers I'm coming up with here are musings along the lines of the way temperature tends to vary in a ferment, the fact that ferments are complex beasties, with lots of different things doing their own dance, and that gas (specifically, carbon dioxide) is given off as part of the fermentation process.

But I'm not sure that's correct, or complete. And I don't have anything that says 'this is the answer we are looking for'. And, due to the joys of distance ed and a really small degree program, I don't have any classmates to ask. And I don't want to be wrong. I guess I'll just skip that question - like I have about half the questions - and move on, hopefully to something I can be confident that I can understand. I may be overthinking my answers to these questions, but that's the thing: I don't know, and I have no way of finding out. Well, except by having a question on it in the exam, and getting it right or wrong - if I get the marked exam back. Which, incidentally, I didn't last semester, so I still don't know where I gained or lost marks there.

Basically what this adds up to is I'm stressed, anxious, worried - although not yet depressed. If there's anyone out there that feels like answering this and other questions for me, or if you can point me at resources which I can read and hopefully understand the processes going on, that'd be great. If not - well, wish me luck. I feel like I'm going to need it.