About me

I'm 30 and live in Canberra, Australia. I am married to a wonderful Englishman, our wedding being last year in England near Durham.

Music, history and art

Before getting sick I studied musicology and history at the top university in Australia, the Australian National University (ANU). Music has always been a passion of mine, and I have two diplomas in baroque recorder performance. I have recently begun to get back into playing more, both recorder and piano. I am being bullied a bit to possibly start performing again! The idea of actually properly performing is quite scary, it is something I haven't done for about five years. I particularly love music theory, although most other musicians always find that a bit odd. Musicology is literally the study of music, so it's music theory, how music functions in society, how music evolves and much more.

History is also another passion of mine. I love how when you learn new bits of history it slots in with things you already know, and over time creates a picture that slowly comes into focus more clearly. My particular interest is European history, especially medieval and renaissance..... although I have studied a fair bit of Roman history too. I am not exclusive though, I enjoy learning history from any era and place. For instance, I think Westerners learn far too little Eastern history.

I also paint, although I haven't done much painting for a while - mostly because of the work Knightley takes in training and just bringing him up generally. I see training Knightley as a part time job, and coupled with my other job.... it leaves me pretty drained. However, I have been itching to paint for a good while, and soon will have a room I can paint in that Knightley can't get to. I have entered a couple of exhibitions in the past, and would like to get back to that because like music competitions, it pushes you to produce good work and actually finish it.

Lake Malawi Cichlids

I keep fish from the rift lakes in Africa, specifically Lake Malawi in a 320L (85 gallon) tank . These fish are cichlids, which are semi aggressive fish, and will kill each other occasionally in battles over dominance. They also tend to be harder to keep than your average tropical fish, as they have more specific water requirements than just tap water. I find them fascinating fish, as they are much smarter than the vast majority of freshwater fish. I have considered doing clicker training with one of them - people say you are not a real trainer until you have experience with more than one species. People sometimes train goldfish, so I am sure a much smarter cichlid would learn much faster!

An interesting fact about these particular cichlids is they are mouthbreeders. When the female lays the eggs, the male fertilises them, and then the female scoops them up in her mouth, where she keeps them safe as they hatch and grow until they are ready to emerge. This takes a full three weeks, during which the female gets very skinny due to not being able to eat! When she thinks the fry are ready, she will 'spit' them out. In a tank full of adults, it is sad to say it is rare that any survive. However, there is a technique by which you can get the little fry out of the mothers mouth just before she is about to spit... but it takes some practice, a lot of gentleness, and a lot of patience! I have raised several 'batches' of fry to maturity before, although at the moment with Knightley taking up a lot of energy it hasn't been on my to do list! Anyway, Lake Malawi cichlids are very interesting and very pretty.

Voluntary and casual work at the Arts Centre


I've been working as a volunteer at our local community Arts Centre for the last seven months, and have also done some work there as a paid casual worker. I originally wanted to find a place to volunteer at where I could start at about two hours a week and work my stamina up until I was working enough to get a part time job. A great rehabilitation organisation helped me contact quite a few cultural organisations, but either they were full of volunteers, or I wasn't what they were after. My dad, who is an amateur artist, stumbled upon a call for volunteers for the Arts Centre, so I contacted them and they were very keen to have me. I volunteer there anywhere between 7 and 15 hours a week now, depending on whether they need people for special events, and really enjoy the work. I really enjoy working with all the people there, they are a great bunch, and the projects can be very interesting. We did one in conjunction with our local parliamentary member last year, and I ended up being interviewed for TV! For someone who spent half her life in and out of hospitals and doctors for a couple of years.... well, it has been great to get back some self respect.


To Lupus or not to Lupus?

I've talked about this in a few posts before, and briefly mention it in my profile.... but a bit over three years ago I came down with a mysterious illness. I had felt myself getting worse over time, leading up to when it got really bad, but I was so very very busy in those days, I tried to ignore it and get on with things. I had glandular fever (mononucleosis) when I was 17, and since then I have never been the well-est person, and so had got used to trying to ignore things. Anyway.... I ended up in hospital... and then out, and then in and out and in and out.... as they tried to work out what was going on. I had a couple of exploratory operations that didn't help, and if anything I just got worse. Finally, as I had a strange rash on my stomach and legs, they did autoimmune testing on me, and the results were absolutely sky high - higher than many of my doctors had ever seen before. The doctor I was under at the time immediately suspected lupus and sent me off to a top immunologist.

Since then I have been on lupus medication and immunosuppressants, and was put on a regular pain medication which has helped my quality of life a lot. I'm also on a heap of other medication, to manage muscle pain, to try to reduce my migraines which I get quite regularly (due to neck problems), and more medications to keep the baseline of my pain lower to reduce my pain medication use. My specialist isn't sure what I have at this point in time. He says it is either 'atypical' lupus, or it could be a very rare type of disease called autoinflammatory (similar to autoimmune, but not the same). My specialist has talked about me as a 'difficult case' to many many people and it seems I'm a bit of a mystery. I had a skin biopsy last year that seemed to confirm a very rare type of lupus rash but who knows really. My specialist has recently put me on a medication for autoinflammatory diseases, as well as keeping me on the lupus meds. He just can't decide I guess. Sometimes I wonder whether I have both! That might explain the discrepancies in my blood tests.

Knightley

From reading my blog I expect you realise what a big part of my life Knightley has become. However, it isn't simply spending time with him that has changed my life. Before Knightley, if I was feeling particularly unwell on any given day it was all too easy to just stay in bed for half the day. Now, I get up because I know Knightley needs attention. It means my life has more structure, more meaning - whereas before the days often melded into each other. Before Knightley, I didn't go for walks... because well, it hurts! But with my attention on Knightley at my side, and watching his enjoyment of being out seeing the world... I don't notice the pain so much, and instead reap the benefits in getting out, loosening up my joints and getting a bit of exercise. Not to mention training Knightley has given me *goals* and structure. The challenge of training an assistance dog, even just doing the preliminary training until I start using a professional for a hand... well, the challenge is a good one! It keeps me thinking and learning. Knightley has given me many gifts, but the biggest of all has been joy. He makes me laugh, smile, grin back at him.... he is such a funny adorable puppy, I am truly so thankful to have him in my life.

So on that note, I think I shall leave it there.