I love doing things on the spur of the moment, when inspiration comes. There is a freedom in letting go of expectations or plans. So far 2012 has been a much more positive year than 2011. I’ve been feeling better physically and decided on a whim to go to Sydney for a break with my Mum. I can’t wait! It will be lovely to have a change of scenery. Sydney is a beautiful city and it’s a great time of year to be there, with the Sydney Arts Festival on at the moment. I hope this month you also have unexpected moments of spontaneous pleasure. CARPE DIEM!









“Through spontaneity we are re-formed into ourselves. It creates an explosion that for the moment frees us from handed-down frames of reference, memory choked with old facts and information and undigested theories and techniques of other people’s findings. Spontaneity is the moment of personal freedom when we are faced with reality, and see it, explore it and accordingly. In this reality the bits and pieces of ourselves function as an organic whole. It is the time of discovery, of experiencing, of creative expression.”
- Viola Spolin

Long time, no see!

Hi everyone. Happy New Year!
I hope you all had a great festive season. For those of you with chronic illnesses; I hope you were well enough to do everything you wanted to do during the holidays, with energy to spare. :-)

I’m sorry I haven’t posted in a while. For me, conserving energy this year was really important, so I could enjoy celebrating Christmas with my family. Therefore, a lot of other things were put on hold.
I enjoyed going to the Hobart waterfront on New Year’s Eve to enjoy the fireworks & soak up the atmosphere. I do have to admit I went for the kids fireworks at 9.30, & by midnight I was tucked up in bed!












This year I hope Chronic Muse will evolve, as I become more comfortable writing, and as I learn what you really want to be reading and seeing on here. I have a few new ideas, so I look forward to hearing what you think. I wish you all the best for 2012. May it bring you health and happiness.

The Spoon Theory

The Spoon Theory

This is a link to a fantastic article by Christine Miserandino from ButYouDon’tLookSick.com
It’s a fantastic analogy for what it’s like to live with a chronic illness. I highly recommend sharing it with your family and friends, especially with the people in your life who just don’t get it!

“Don’t wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now.
With each step you take, you will grow stronger and stronger, more and more self-confident, and more and more successful.”
Mark Victor Hansen


“The aim of generosity is twofold, or else it’s an incomplete experience. The first aim is to free our minds from the conditioned forces that bind and limit us. Craving, clinging and attachment bring confinement and lack of self-esteem. If we’re always looking for some person or thing to complete us, we miss the degree to which we are complete in every moment ….. We also practice generosity to free others, to extend welfare and happiness to all beings, to somehow – as much as each of us can – lessen the suffering in this world …. ” Sharon Salzberg

Something I’ve been pondering this week is “What is true generosity.” Generosity in every sense of the word.

As Christmas & the holiday season approaches the whole concept of giving comes to mind. I love spending time choosing and buying presents for my family and friends. I love taking time to think what would each person really like, wrapping the presents and making gift tags. Of course I like getting presents too, but I love sitting back on Christmas Day and watching peoples’ faces as they open their gifts. Now that I have a 2 1/2 year old niece, it has been even more special, watching it through her eyes.

Yesterday my Mum told me that this year my brother and sister-in-law want us to all buy only one present, for one other member of the family. My first thought was that seems really selfish, ie my sister-in-law’s mother is buying a gift for me, when I imagine she would really like to buy a gift for her own daughter. To me it negates the whole idea of giving gifts, taking the time to choose something special for each member of the family. It’s not a matter of money either, we don’t spend that much on gifts.
I’ll admit, somewhat begrudgingly, I’m going along with the idea. I realise I will just have to change my idea of generosity this Christmas. I may not be giving presents, but instead I will be giving the gift of time & a stress-free Christmas to my brother & sister-in-law.

The holidays can become complicated. Often because of our expectations of what it should be like. This season lets try and let our expectations go, and really consider what gifts we really want to give the people we love. As the saying goes, it is the thought that counts. What is our intention. Is it to buy something flashy that shows how much money we have? Is it to satisfy our own needs? Or is to gather together, celebrate the season and have lots of fun & laughter with those we love and create new holiday memories.

Thanks to Susan for reminding me about generosity, and for sharing the words of Sharon Salzberg.

Support Groups

I’m planning to start a support group for people living with ME/CFS in my city and I’m curious to know your experiences of support groups, both positive and negative.

If you were to join a support group what sort of group and support would you be hoping for?

* A social group.
* A group where you discuss living with ME/CFS & research/treatments.
* A group where you have guest speakers.
* A relaxed, friendly atmosphere or a more formal discussion group, with a leader.
* A combination of all of the above.






How often would you want to meet, ie monthly, fortnightly, weekly?

Family & friends of people living with ME/CFS, do you need support?

Would you prefer to meet at a cafe, someone’s home or a community centre?

Would you like support between meetings? For instance phone calls, email or visits?

I’d really appreciate all your comments. Let me know about your experience & opinion on support groups! Thanks :-)

Today’s Top Tip





We may not always be able to change our circumstances, but altering the way we view things can make a world of difference. Changing your perspective isn’t about wearing rose coloured glasses, it’s realising that you have a choice in what you choose to focus on and how you’re going to respond.

Even changing your physicality can make a difference. One thing to try is: Stand up straight, look at the ceiling, and smile. You may feel like an idiot doing it, but it is really hard to feel miserable while in that stance. Likewise, if you pull down the blinds and hide under the covers it just makes you feel worse.

Learning to live in the present moment is really important. If you dwell too much in the past or worry about the future, it’s easy to become overwhelmed and feel out of control of your life. All we have is right now.

Take time to do things you enjoy. Even 5 minutes to sit outside in the sunshine and listen to the birds can change your frame of mind.

When living with an illness it’s easy to feel you have no control. Sometimes your body feels as if it is betraying you. But we all make choices every day that can help us.
* Choose to eat healthy foods that nourish your body.
* Move your body. I know sometimes that is easier said than done, but even if you are
bedbound try and do some simple stretches, leg lifts or bicep curls.
* Do something to help somebody else.

Changing your perspective really does change your experience of life!