Tuesday, October 17, 2006

Have you ever noticed.....

how things always get really bad, just before they start to get better?

Just over a week ago, I was asking myself what is the point? The point of what?

Well, the point of lots of things really
- of an existence where you don't contribute to society in a positive way?
- of studying for something when you can hardly spend any time doing it because of poor health?
And why have I got this life? Not why me, specifically, but more why would anyone be given this life? WHAT'S THE POINT???

I was spending a lot of time mulling over these thoughts and had come to a place where it was feeling quite unbearable. Don't worry, I wasn't considering suicide, I'm not that self-centred. I couldn't do it to the people I love - I know it would distress them too much...

And then I realized, just my existence IS ENOUGH for the people who love me and who I love. I don't have to do anything, just the fact that I exist gives joy.

It might sound silly, but that realization has been incredibly freeing to me. It doesn't mean I don't still want to do things, to set goals and have achievements, and that on any particular day I might be frustrated about having low energy, but since I realized that just existing or "being" is enough, I can be so much more relaxed about it all. This is a big step for a perfectionist.

This has lasted for just over a week now and doesn't seem to be disappearing. It seems I have finally learnt for myself that to just be, is enough.

This ties in with something my husband taught me about 10 years ago. He made me aware of the Oscar Wilde version of an old adage. Wilde maintained:

If something's worth doing, it's worth doing badly.

Title: The Artwork Nobody Got

I puzzled over this for a few years, wondering why, in my perfectionist's mind, you wouldn't do it well. Then one day when I was trying out a new art technique, it dawned on me. I hadn't created anything too brilliant, but I was having SO MUCH FUN! This was something it was definitely worth doing, even though I did not do it at all well. And I realized, there really are some things in life that are so wonderful, so nourishing to the soul, that it doesn't matter how you do them, just as long as you do them.

So go out and do something badly that you love today..... it's important!

Friday, October 13, 2006

More Trouble

Okay, this is better. The other night I couldn't get any filters to work in Photoshop so I just gave up and submitted my pic of Claude as it was. Stupid me didn't realize I was working on an adjustment layer!!! I find whenever I can't get something to work in PS, I'm on the wrong layer... Anyway, this looks more evil.

Topic #23 - Brown (Follow Your Dreams)

My entry is a photo I took when I was living in an old terrace house in Melbourne. In mid-2003 I moved from my home of 40 years (Brisbane) for the adventure I had dreamed of since I left school - living in another city. The city of my aspirations has changed over the years, but I've always wanted to embed myself in a place with a different culture in a way that can't happen by simply taking a holiday. It may not sound like too big a change but believe me there is a big difference: Brisbane is a tropic city of roughly 1 million, and the culture is built around the sunshine - which is a nice way of saying there's lots of sport and not much art or music! Melbourne on the other hand is three times the size, famous for experiencing "four seasons in one day", home of the MCG but ALSO home to a thriving artistic community.

When my husband and I first moved to Melbourne we rented this gorgeous terrace.

It was built in the late 1800s to house railway employees working onconstructing the railway line at the end ofthe street. My entry is a photo taken in the afternoon in the room at the front (shown above). The glass in the windows was original, and not quite clear. You could see out and not really notice anything unusual, but when light shone through it, it created this wonderful reflection.

Anyway, my reason for giving this photo the title "Follow Your Dreams" is that I am so glad I finally managed to live in another city. Despite the fact that neither my husband nor I are able to work due to our cfs, we still decided it was worth spending most of our savings to pursue this dream. We felt that we had been sick for nearly 13 years (at that time) and we had put our life on hold in so many areas for so long - it was time to take back some control.

We are now back in Brisbane and since we returned I have lost my father and my energy has diminished even further, but the memories of the great times we had in Melbourne really help. But more important than that is the knowledge that I can still dream.

Tuesday, October 10, 2006


This is my Illustration Friday entry for this week. In all fairness to Claude, whose reputation I have maligned for the sake of this entry, I ask you to check out my avitar on Flickr. There you will see the other side of his nature....yes, he does have a split personality but so do all cats - loving companion vs ruthless killer. I think this paradox is why we can relate to them - it's quite human, really.

Sunday, October 08, 2006

Instant ancestors?

The gang
Originally uploaded by potsrme1962.
This is a photo I am going to use in an installation for my masters. I plan to use the people as the basis for a slide which will be projected onto the wall. I'll add unfired clay work to emphasize the process of time.
This photo is one that was given to me by my father. He found it among his mother's things. She is in the photo, holding him as a young infant. She is 7th from the left, in the white dress and wearing a broad rimmed hat. That guy on the far right looks like the life of the party!

Saturday, October 07, 2006

Priorities, priorities...

When Death Comes Calling, 2006*

In loving memory
Russell Watson-Will

In my last post I said I was going to be thinking about my priorities in an effort to improve my quality of life and hope that I may find ways of living better with cfs. Since then my priorities have sort of been set for me.

I am currently on leave of absence from RMIT University in Melbourne where I have been studying for my MFA. I returned to Brisbane nearly 15 months ago to take a rest for the sake of my health, planning to re-enrol by distance for semester 2 (July) 2006 and finish off the Masters. A couple of weeks after we returned my father was diagnosed with Motor Neurone Disease and 2 months later he died. It was all so fast and such a surprise. Those few months were a roller-coaster ride and after my father's funeral, I physically fell in a heap. I have made very little progress since then and this is why I find myself re-examining the way I manage my life in a day-to-day way.

Then last week I received my enrolment forms from RMIT. I have to re-enrol next year (I had taken an extra semester off because I knew I could not manage the workload yet) or lose my place. This does not mean that I couldn't re-apply in the future, but that I would have to compete with new applicants for a place. I really do want to complete the Masters for a variety of reasons, but I'm really not sure how my health will hold up. And the thought of making myself sicker is a scary one.

In some ways, the letter from RMIT has been a blessing. It has given me a goal that is external to myself, a goal in the real world, with genuine deadlines and expectations. The trouble is it si so difficult for me to meet these, and the fear of becoming even more ill is a powerful stressor.

Herein lies my dilemma . I tend to be a "broad picture" style of person. By that, I mean that I find it quite hard to focus on something quite circumscribed. I really need diversity in my life or I feel incredibly trapped and yet with my current energy levels, this really isn't possible. It is an extremely challenging balancing act, but for now at least, it seems my priorities are set.

* This is one of a number of collages I did as art therapy to help me through the grief process. You can see another here in my blog and some more in my Flickr photos here and here.

Thursday, October 05, 2006

Quiet! Let Sleeping Blogs Lie....

This photo is one of a number I have taken while spending lengthy amounts of time lieing on my bed (see below). I love watching the light change during the course of the day, and the patterns it makes interacting with window panes, glass tables, or in this case, venetian blinds. I have a set on Flickr entitled "Light and Shadow" and some of my other photos of light are posted there.

The purpose of this blog was originally to try to document what it is like to live with cfs (I refuse to capitalize it and all that may indicate!!!) and to hope that this may allow me and other readers to identify any strategies or patterns that may be helpful or unhelpful.

However, whenever I get close to starting on this aspect of my life, I find myself withdrawing from the blog process. It's not that I have a problem putting the personal "out there", it's just that I don't want to seem like I am complaining and I'm not sure if I can do this without seeming to be complaining. So... I'd like to state now that I am not seeking sympathy or even admiration, what I am hoping for is insight. Insight for myself into how I might manage my life with this illness in a constructive way that enables me to feel that I am contributing and participating without it being incredibly taxing and stressful. And what I would really love from you, "dear Reader", is for you to tell me if you see any patterns occurring or have any suggestions that you think may be helpful.

Now when I say suggestions, I don't mean "miracle cures". I have had cfs for 16 years next month and believe me, I have tried many a miracle cure, to no avail. I have spent $1000s on remedies and treatments and consultations with this expert and that specialist, and I know that there is no such thing as a miracle cure. I have been seeing a wonderful Physician for some years and he helps me manage my symptoms, but I wasn't actually getting better, so I had my doubts. Then he had to stop practising for family reasons for a few years and I went significantly downhill to the point where I am now. So in retrospect, I can see that while he couldn't cure me, he was definitely maintaining my health. Now I have to try to crawl back, and after nearly a year back on his books, progress is still incredibly slow.

This, however, is a diversion. What I was trying to say is that I am not looking for a magic pill, but I am looking to improve the way I manage my health and my life. As an occupational therapist, I know that there is a lot to be gained in quality of life from working with energy saving strategies and cognitively examining my priorities. I am at a point now where my energy levels are almost the lowest they have been and they are staying fairly constant. Therefore it is incredibly important for me to be sure that the goals I set my self are not only achievable, but meaningful and enjoyable to me.

When there has been so little energy to go around for so long , there is little point in taking the attitude of short term pain for long term gain. For example, what of money and career? I am living on a disability pension and barely scaping by. I really need to be able to create some extra income for myself. However, I have NEVER been the sort of person who can just do a job for the money - work has always had to be inherently meaningful and with so little energy to expend, this is even more crucial. So, I think that examining my priorities is the place to start. And I will. Right after I've had a little lie down....