Living with M.E. is like having to re-invent yourself every day

My thoughts this morning: Living with this illness (M.E.)  seem to require constant adjustments to my day. I can't take anything for granted.
After living with this illness for 16 years you think that have it figured out.  But my health is never constant. My abilities are never constant. The severity of pain is not constant.  Neither is the amount of energy I have at my disposal every day, or at any given moment.
Every day seems to start with a reassessment.  How am I physically? How am I mentally? Which are activities I have to do today.  Which are optional? What would I really like to do? What would make me happy? What would give me joy?  Can I add these elements to my day?  If so at what cost?

During the initial stages of the illness I was pretty much housebound. Through determination, sheer stubbornness, and learning about this illness I found ways to live the best life I could.  This requires a lot of negotiations. With yourself.

Over the years I became more able to look after myself, which came with a huge sense of pride. Then two years ago my health started to deteriorate again.  I had my 50th birthday and a few days afterwards I became very ill.  You know the sentiment about turning 50, you've gone over the hill... For me it feels like I climbed that proverbial hill, tumbled down and ended up in the ravine.
I have regained some level of wellness since that time, I even made to college, one night a week. But, I have to agree with my doctor that college probably contributed to the fact that my health has deteriorated  further.

Since late last year I am in much more need of support. My hard fought independence is less than it was years ago. This is a hard pill to swallow.  Having to ask for help is not an easy thing to do. (see my story that ended up in the journal.ie )

Living with M.E. is like having to reinvent myself every single day.
Reinvent myself as a woman living with a chronic illness/disability, reinvent myself as an artist, and as a writer.

Lately my art and writing sadly had to find a less prominent place in my day. As a result I started to doubt my creative abilities and the worth of my work, the need to continue trying. This, thank goodness has been put right by some amazing email and a Skype conversations with people involved in (disability) arts.  And to my great surprise I found my artwork on the front cover of a newly published book, with the long title of Explorations in Virtual Worlds: New Digital Multi-Media Investigations for Art Education.
Associate Professor of Visual Arts at Kennesaw State University USA had seen my work in Second Life a few years ago. We've had various email contacts and Rick used my art in lectures in Art Therapy in the USA. Although I was aware of my work making it into this book, I was very surprised to see one piece on the front cover. (egg image: Hatching- digital art-  first published in my book Hatched)

I will continue to create, and to write. I think, I know, deep down that I don't really have a choice. I am a creative being and will find ways to explore this by making adjustments: like writing by using voice recognition software. By continuing to love, observe, and photograph (with telephoto lens so I don't have to get up of chair) all the small happening in my garden, which still is the main source of my (creative) being. I will continue to re-invent myself.

Wishing you all the best and thanks for your continued support.

Out-of-this-world Opportunities for challenged folks: Disabilities, Art education, and Virtual worlds (chapter 16 in Explorations  in Virtual Worlds: New digital multi-media literacy investigations for art education) Rick Garner, Ph.D., Kennesaw State University . 2014. Edited by May Stockrocki, National Art Education Association, US available here


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