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....


  1. Hello :-) Thank you for comment, for one month (5.11.) I will 11 :-)
    You have wonderful quiet,
    Best greetings

  2. Hi Amanda, a very interesting set of photos that you linked to. Some of them appear to me to have very dream-like qualities to them while others are haunting, such as this one;
    In the top left of this photo it reminds me of teeth, which conjures up all kinds of meanings depending on the viewers interpretation. Maybe this photo jumped out at me because I have pain issues with my teeth, who knows?
    I love abstract photography like this, great work!
    Sorry to read that you aren't doing so well right now, be strong!