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.

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?

Acquiring a label

Last I posted, I noted my lack of energy.

The whole thing started back ... well, I suppose in around September 2009, when the symptoms first started to ramp up beyond what I could dismiss as simple depression or apathy. By January 2010, I had been through 3 doctors, each of whom told me there was nothing wrong with me, despite me sleeping 20+ hours a day, every day, and feeling increasingly unwell (sick, nauseous, faint, dizzy) when I was awake.

In April 2010, I finally found a doctor who took my issues seriously. She helped me discover my casein intolerance, which improved things somewhat - I was feeling well (if sleepy) while I was awake, and I was awake for something that was kind of normal - sleeping 14hrs a day. But the sleepiness didn't go away, no matter what I did, so I did a sleep study in August 2010. The results from that test came back, showing that my overnight sleep wasn't so much good, as pretty near medically perfect. With sleep like that, a normal adult would be full of life and energy during the daytime, not barely staying awake like I was. I was referred to a sleep physician, who after talking to me, recommended that I do a Multiple Sleep Latency Test to determine my actual level of daytime sleepiness. This is not a test that can be faked; you either go to sleep, or you don't. Your brainwaves reflect this, or they don't. You do an overnight sleep study first - to make sure it's going to be an accurate test - then during the day, you're asked to try to nap at several intervals. I did this test in December 2010. On Wednesday, I saw the doctor, and got the results of this test. He was very sympathetic. 'I can't imagine how you can live like this, it must be horrible' were his exact words. Apparently I'm a very bad case. Even for people with my disorder, it is relatively unusual to have someone who, after a full night of excellent quality sleep, can fall asleep at 8am, 10am, 11.30am, and 1pm - that last being within 30seconds of being told to try to nap.

I was given a formal diagnosis, and medication. The diagnosis is Idiopathic Hypersomnia, which is a polite way of saying 'We know you sleep far too much, but there doesn't seem to be a reason we can pin down'. I don't have narcolepsy, hormone imbalances, endocrine imbalances, sleep apnea, restless movement, or anything similar. It's a somewhat wishy-washy diagnosis, but it at least comes with medications which will alleviate the issues I experience every day. It does mean, though, that I'll be on said medications lifelong. Or at least, the parts of my life where I want to be awake. The medication is ... problematic. Highly restricted, used illegally as a recreational drug, that sort of thing. It's going to make travel interesting, that's for sure.

My overwhelming emotion is relief. Relief that there is some diagnosis at all. Relief that there's a good chance I can function like a normal person, even if it does mean taking pills for the rest of my life. Sheer joy that I will have an extra 12 hours a day of alertness.

I do worry that the side-effects of the medication might cause me issues, especially since it's prone to causing emotional issues. I am worried about the reaction of people to the exact medication I'm on. I'm worried about the paperwork I'm going to have to carry around. I'm worried that it won't work.

But for all of that, I'm glad. Glad to finally be done with the testing, glad to finally have a way forward, glad to have a chance to get my sparkle and life back.