Showing posts with label work. Show all posts
Showing posts with label work. Show all posts

Monday, 19 November 2012

Discontent.

It occurs to me that my life is boring. I am very definitely discontent.

Part of it is that I am having a not-quite-optimal day; the secondary router dying (leaving my desktop without internet), the dishwasher needed to be re-run, those have contributed to a less-than-chirpy mood. It's bigger than that, though.

I have no big goals at the moment. There's my bucket list, of course, but the vast majority of things on there are a very long way away.

Day-to-day my life involves domestic stuff. Keeping house. This isn't emotionally fufilling, nor is it interesting to talk about. Parts of it have specific interest - the various ways in which I try to cut our ongoing costs, for instance, or sometimes try out new recipes, but by and large it just holds no interest for me. Keeping the house kind of clean certainly isn't something I'm passionate about. While I'm fairly interested in reducing my environmental impact, and eating from local producers, and eating organic, once I've done what I can do, there's just not that much more to talk about.


Keeping my plants alive, whilst in a way kind of interesting, isn't really all that fascinating. I mean, I water them every so often. Other than that, I look at them. What else, really, is there to do? Glaring at them does not make them go faster (much as sometimes I wish it would).

Speaking of, something else has sprouted! It's the little one on the left. I think it's a nasturtium or sweet pea. I can't quite recall which I planted there. The one on the right is probably a cornflower. This is justifying my decision to only plant 2 seeds per variety, in case I had good germination success.

There's health and fitness stuff. The problem there is mostly that I find it hard to do things. And hard to recover. I find it difficult to willingly sign up for extra pain, when most days, I'm in pain anyway. Not to mention my tedious and irritating tendency to crash and burn after a few weeks, and end up worse than when I started. I'm currently addressing that, somewhat, by doing my daily records, and trying to correlate that to my daily activities. This should help me find my limits without breaking through them and suffering the consequences. In the meantime, though, it means that any significant level of fitness activity is right out.

There's knitting. When I have the energy/lack of back pain for it anyway. And when I do, I knit. Also, the nice postman gave me a present the other day. 800m/100g, hand dyed silk. Mmmmm. I'm going to enjoy turning that into something pretty, that's for sure. But I don't do enough of this kind of thing to really make much interest of.

Photography has a daunting backlog of photographs for me to go through at present. The more there is to do, the harder it seems, the less likely I am to do anything. Sound familiar? It's stupid, I know, but there it is.

Music is waiting on speakers for the listening of, and me getting my backside across London to get an adjustable thumbrest installed on my clarinet for the making of. Speakers arrive tomorrow, and well, I'll get the thumbrest done ... sometime. Probably.

Fashion, clothing, style, what-have-you, is waiting on a lot more energy. I am getting to grips with how I feel about myself, and really trying to find clothing that is accessible (in terms both of cost and of effort involved in wear and care). I had a colour stylist appointment the other day, and discovered that I am horribly difficult for a professional to pinpoint, in terms of an optimal colour palette. In the stylist's words, my personal style is dramatic and functional. A lot of this is news at 11, so to speak, but it's nice to hear my self vision confirmed by an outside observer. I would like to have a few fashion shoots done with various outfits and looks, but of course, that requires money, time, and energy. And I'd like to be somewhat slenderer before making a permanent record of what I look like. See above about energy, etc.

Still, on the weight loss front, I'm at least not failing too badly. My diet is (fairly) clean. I've gone up a little, but not much. I'm still hoping to see 72kgsish in January, and below 70kgs for my birthday. This occupies a fair amount of brain time, for me, but is one of those things which I can't help but feel probably isn't interesting to a wider audience.

It does occur to me that one of the reasons I am discontent and bored is that while some of the things I do are all very nice and well and good, they aren't productive. I don't produce, I don't get paid. A fairly core part of my self-value system, in this case, the part dealing with how I conduct my life, is how much and what I contribute to my family unit, and society at large. I don't even pay taxes. Of course, I am crazy lucky to be in this position and not worrying about where my next meal is coming from, and this is all very first world problems. Knowing I ought to be grateful for what I have does not, however, make me feel cheerful, so much as guilty for not being cheerful.

There is a possibility that if I was healthy, and if I didn't need to work in order to create and maintain a suitable level of buffer money, I would feel the same kind of discontent, were I not engaged in some form of volunteer work, or freelance research, or similar.

It is probably shallow of me that a fairly major way in which I judge myself is on my financial input. It also appears to be a fairly immutable aspect of my character. I'll note I don't judge anyone else this way; like many things, I have one rule for me, and another rule for everyone else. Having a disabling condition isn't good enough excuse for me, emotionally, although intellectually I realise this is kind of crazy. "Look at Stephen Hawking" says the emotions, while my brain retaliates with "... different problems, different person, and a whole hell of a lot smarter than me." No bets on which usually wins.

I guess the way to fix this is to get a damn job.

So I just applied for a work-from-home, freelance editing job. I'll be applying for a few more, I think. I can write, I can do the spelling and grammar thing, and whilst it probably won't be *much* money (and, oh god, I have to figure out taxes, VAT and all that), it's a lot better than sitting on my backside bewailing my fate. Positive action, etc. This kind of work seems to be something I can reasonably do; I have the experience (from both writing my own documentation and working as a writer at Red Hat), and writing is something I can do with reasonable competence on minimal energy. Full time, not so much, and in person, not so much; but as a from-home, flexible delivery schedule thing - that, definitely. So long as the other router doesn't break.





Wednesday, 11 May 2011

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?

Thursday, 28 October 2010

Status quo

An easy thing to write about is updating where I'm at at present, in various aspects.

I'm studying. That's freaking me out a bit, because I haven't been keeping up with my studies at all, and I have an exam on Tuesday 2nd November. That is stressing me out a lot. I'm going to be spending the next few days buried in wine chemistry, which should do interesting things to my brain.

Speaking of november, that's NaNoWriMo! My plan is to write that long-awaited DnD campaign. I have no idea if there's 50k words in it, but I do know that I can probably get most of the way there, especially as many of my workmates will also be doing NaNo, so I'll have a lot of peer support and encouragement. I'll write more about the project as it evolves.

I'm on the get-healthy-lose-weight-get-fit kick again. I'm cycling to and from work a few times a week (when weather and health permits), using the cycle2city centre as my work terminus. I'm eating a mostly-Paleo diet, with a few slipups. I've started seeing a personal trainer again, and I'm working on my upper body strength mostly, which is currently in an entirely woeful state. I'm hoping to be a fit, strong, healthy size 10 by my 30th birthday in May. Mental health wise, aside from a few incidents here and there, I'm doing well. No major depression, no major anxiety to talk about aside from the occasional spike, and usually for cause. I have my off days, but by and large, I'd say I'm almost normal, for just about the first time in my life. And it's been long enough like this that it feels normal, which is wonderful.

I'm working fulltime, as a Content Author at RedHat. I'm enjoying the work and not finding it overly challenging at present. It's nice not to be stressed out of my mind while working for a change.

I'm still a committee member for Linux Australia. We're working on some pretty useful, although possibly not exciting things that should be good for the org in the long term. I'm enjoying it quite a lot, especially the bit where I get to work with awesome people. I'm looking forward to LCA, where I will not be volunteering (I hope) and actually get to enjoy the conference. I probably won't be speaking; I can't think of anything to actually speak about that either hasn't been done to death, or might possibly be relevant. Seriously, most of my tech stuff these days has to do with wine production, and whilst that's very interesting, I'm pretty sure it doesn't have a place at an IT conference.

I've also been doing a fair amount of volunteering and participation in various wine events. I stewarded at the Royal Queensland Wine Show at the RNA and the Courier Mail-Mecure Queensland Wine Show recently. I'm heading down to a Purple Palate event, Juicy Fruits, next week on Thursday evening, and really looking forward to it.

In my clearly obviously copious spare time, I'm playing World of Warcraft, Fallout: New Vegas, going to lots of #btub events, and painting my nails interesting colours.

So. That's me at the moment.