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


 As I no longer have a Facebook or Twitter account (find it all too confusing...) but you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!

More inspiring art and music by people with M.E.

Morning all,

Hope this finds you well on this day of rest, and social connections.
Further to my last blog about the way people with M.E. use their creative abilities to make a change in their lived and in turn in the lives of their audience, I have two more projects I'd like to tell you about.
Cusp and Lee Lee's musical adventures, and Dianne Elton's involvement with the art in Second Life.

From Cusps' website I quote the following: Many many moons ago, my dear chum Lee Lee Ingram and I were saying how much we missed being creative and how much this illness gets in the way.
Ever one to grasp the nettle (!) Lee Lee said 'Why don't you write some lyrics and I'll put a tune to them'......and from that has grown a project which has now culminated in the formation of our band Dropkick and the release of our first track 'Trapdoor'. 

They created this CD, a fun track playing homage to 70's disco, with the physical boundaries of illness and even living miles and miles apart (UK and USA) Have a listen, it will make you smile, and dance!
Watch it here on Youtube  The release date for the CD and digital download is 28 November, but is already available on pre-order! See Cusp's website or here

The other project is situated in Second Life (SL).  Dianne Elton, whom I had some wonderful adventures with in Second Life (see older blogs on this subject), is very much involved in the Arts, and has a very positive and creative influence in the Centre for ME/CFS and other invisible illnesses in SL. On this occasion she is involved in the Freedom Project in conjunction with the University of Western Australia.

From the University's SL Blog: The Freedom Project is a 2D/3D Art & Film Event organized jointly by the University of Western Australia, along with members of the Virtual Ability group, and the Centre for ME/CFS and Other Invisible Illnesses group in Second Life. We are calling for artists and film makers from all over the world who self-identify as having a disability or a chronic illness, to create an artwork or a film/machinima on the theme of ‘Freedom’, showing how virtual worlds have in some way helped them or those around them. 

During the launch of the Freedom project, Dianne talked about what SL means to her: 

"In my own case, being housebound, SL has extended my social world exponentially.  I now have many friends right around the world. No longer able to attend art galleries, I was delighted to find I could come to UWA and enjoy stunning innovative art without leaving my bed. My illness has taken away many activities I used to do in real life but as I don't have to leave my bed, I can do things in SL including attending and facilitating bookclubs, meditation and guided relaxation sessions and I can even go dancing with hubby!

This is how SL gives me “freedom”. Freedom to be active within the limitations of my health. Freedom to interact with others from the confines of my house. I am really looking forward to seeing the artworks produced for this event and to learning how SL might give others "FREEDOM". 

(The full transcript of the launch of this project and Dianne's talk is available on the University's link above.)

I hope you will have time and the interest to explore the work by Cusp, Lee Lee, and Dianne.

Again to me it shows the resilience of people who live with chronic illnesses, which so hugely impacts on their day to day living, to find ways to fulfill their desires. These are the people who inspire me, and no doubt inspire others.  

ps. As I no longer have a Facebook or Twitter account (find it all too confusing...) but if you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!

A little holiday

After a busy few weeks, in all sorts of ways,

I treated myself to a little break.

Where else, then at the grounds of the Murdoch University.

After a meditation at the Japanese garden on the floating patio,

I decided to go for a swim.

The beauty of this Second Life is, that no energy is required,

and there is no need to get changed into a swiming tugs, you don't get wet!

I swam among the fishes and coral reef to inspect the treasure chest

left on the bottom of the sea.

Touching the red coral will bring you to the Da Vince garden.

Didn't go there this time...

... I came for a rest!

My towel was waiting for me on the lovely sandy beach,

with the relaxing sound of a crackling fire.

Life is good!

My summer holiday

I know I have gone on a bit about Second Life (SL), but where else would you go for a quick holiday, where the only costs is the energy needed to click the computer mouse...

... After a mishap in a canoe tour - where I (Yona Spearsong) was chucked out into the water - I decided to explore the da vinci gardens- whale watching centre. I had 'found' a landmark card (or whatever the term is) in a treasure chest in the sea near the Murdoch Institute, during a swim with fellow avatar Dianne last Sunday.

After a 'water dance' in which I truly felt free in my body (the power of suggestion?) I took a spin on a seahorse. How magical. OK, I admit, I do have a brain which accommodates magic and fantasy rather freely, but still. Where else do you get it? I started to enjoy myself, and felt the tension from the A&E experience last week and the subsequent exhaustion and illness, float away...

... so, I played a little piano to celebrate. Under the sea. At the south Pole, apparently. Where else? Unfortunately I didn't have any money on me to give the dancer a tip...

I 'teleported' to dry land again and met some families out having fun. To my delight Magic was in the air here as well. There was a huge feather waiting for me to go on a 'tour-de sky'.

I finish my adventure holiday in a treehouse. Climbing the rope ladder without any difficulty, I relaxed by a crackling fire, overlooking the sea, and having the company of a squirrel, an owl and.. a bottle of wine!

I never ever thought I could get excited about the computer's possibilities, but I have to admit, visiting SL at times, does the job, and in a way has given me 'fuel' to get on with Real Life.

Thanks again Kirsty and Dianne, and the creators of these magical worlds at our fingertips.

Is M.E. for real?

A day of contrasts... to say the least.
I received a book in the post "Lost Voices- from a hidden illness". A book about young children and adults severely effected by M.E. Later I went to the library and was given a DVD that was made in 2004 during the launch of the Fit to Fly DVD. Re-living that day, made me swing from pride to distress and back again.

To add some fun to the day, I brought a visit to the M.E. centre at Second Life. After reading about an autobiographical novel written by a person with M.E. 'The state of me' I went looking for the beach to relax. On my way, I came across a trampoline.
There I was jumping to my hearts content, (without getting pains all over my body that would last for months, as after my last real trampoline adventure) another avatar joined me. She didn't jump, but asked for an introduction.
I was asked if I was a lecturer, or a visitor. I told her about M.E. and that I come here to do the things I can't do in real life.
To my absolute horror, she responded "is M.E. for real?"

I did get an apology, but it still leaves me rather horrified...

Meeting of the Jelly Bellies

This morning I remembered (in time) that there was a meeting at the Murdoch Institute for M.E./CFS in Second Life. To my delight the meeting room was full of people, or I suppose the correct term is avatars? (I 'googled' the term: An avatar is a computer user's representation of himself/herself or alter ego. ) So, the room was full of avatars, in all sorts of wonderful and fantastical outfits. My top rating goes to 'Dianne', dressed as a fairy! Wonderful! I am a little jealous, as I have just about managed to change into a t-shirt and trousers.... as for my shoes... I (Yona Spearfoot) am now walking on what I can only describe as 'shoes with halos'. (Help to change them, gladly accepted!)
Getting the hang of this second life is almost as challenging as living in the first one, but at least you are only one click away from ''quit' and, presto, Yona Spearfoot has gone to 'virtual sleepyland' for a while.

But, my goodness is it fun to be there.
Walking into doors and walls, which I had given up in my first life, I relived here in full flow, BUT it does not hurt. It just makes me laugh! The time I tried to 'have a drink on M.E.' at the exhibition (see earlier post)... will I tell you?... I obviously clicked the wrong button as I ended up standing on the table, next to the bottle of wine and the glasses,... and that was even without a drop of alcohol in my avatar body.

Second life is also fulfilling my dreams. It is possible to FLY (at last, Fit To Fly!) A wonderful experience in which my (then dress) fluttered in the wind. The landing it even more fun, as one lands rather ungraciously on the ground. One time I landed in the sea and found myself walking among the fishes.
By chance, I found a hot air balloon waiting for me to fly in.

Yes, there have been some embarrassing moments too. One that I recall is when I was creating a sculpture in the sandpit. Again I clicked on the wrong button and found myself sitting in the sandpit, in my knickers... So glad that nobody else was there!

Of course there is a serious side to this M.E. Centre in Second life. (SL)
'Kirsty Bearfoot', who's mother has M.E., became passionate to make the condition more understood, and to alliviate the fact that so many people with M.E. are isolated. Many are housebound or even bed bound. Kirsty received funding from the Australian government to research if a group on SL, would alleviate some of the isolation that people are experiencing.
I think she has succeeded.

SL is a place to be well, to have fun, to have a body, an avatar, that is healthy. It is a place to relax, to meet other people, to sit by the sea, or a crackling fire.

There are regular meetings where people can meet others with the condition/or their family members or friends, and talk about their treatment, about their isolation, about anything really.

Today there was quite a big group and the discussion was about the Soy Kefir research. Dianne, a regular visitor to SL, (who has brought me around exhibitions and sat with me in the sunshine), said that there was a slide show about the research in 'the other room'. It was decided that we move there. I had to laugh when we all stood up, and manage to loose our guide. There we were, this wonderfully weird looking group of avatars wandering aimlessly in the hallway.

All gathered again, the discussion continued about treatment. At some point someone ('Petra' ?) asked 'does anybody have a bloated belly?' Many responded with a yes.
Dianne wrote on her message The Meeting of the Jelly Bellies.
I thanked her for given me the title of my next blog!

Murdoch University is a good place to visit, for anyone with M.E./CFS (warning: do set a time limit!) or for anyone interested to learn more about the condition. There is lots of information available there and a quite touching exhibition of works and words created by people with M.E.

Thank you 'Kirsty' for inviting me to this world, and for 'Dianne' to be my guide and companion.
I wish you all well!

Life's peculiar habit (of making sense)

Until very recently I was quite happy with my presence in the virtual world. I had (still have) a website, on which I share my art, writing, photography, write the occasional bit of news, and even have a page on the art in Lismore and the women I admire. I also have a page about M.E.
Last night I realised that it was quite a generic page, not about me with M.E., but the bare facts and a few links. Have people go somewhere else to find out about the illness...

I think the need to change my presence on the web stemmed from a very challenging time I had in March.

I love life, at times a bit more than my energy allows. So, just after my birthday, celebrated with friends for lunch and a monopoly game (which I gloriously lost ) at night with other friends, I felt that I needed time off. Time for a breather. Time to slowly get back to a routine of writing and pottering in the garden.
As it happens I had made an appointment for reiki, although this turned into a treatment with the Scenar. This treatment, which in short works on the nervous system, knocked me into a breakdown. The day after the treatment, I was so incredibly ill. I was in a huge amount of pain. Physically and mentally. I was told to be in a 'healing crisis' and received treatment the following day, to counteract the effects. This helped to the extent that the pain became bearable.

For weeks I slept, cried, rested, wrote, and tried to figure out was this treatment a good thing... A time of absolute confusion. I felt so ill, was so incredibly tired, looked terrible, but... can this treatment really be as good as suggested and that it really is a way into recovery? Is there really so much 'stuff' from my past in my body that, if it is 'scenar-ed' out, I will be well?
I continued with the treatment and continued to feel ill, and in a lot of pain.

I talked with various friends and a cousin from Canada. To her it sounded that I was being 'bullied' and that I was defending the illness to the therapist. This made sense. And yet it didn't... Maybe I needed this treatment, yet it felt so wrong. Maybe I needed this 'kick up my behind' to go forward.

Around the same time, the Journal from the 'Creative for a Second' Project came to my house. A wonderful project where people with M.E. from all over the globe, have the opportunity to write-draw etc in a journal for a two week period. The journal then moves to the next person on the list. The work I created (see Facebook link) received a lot of positive feedback. AND I felt hugely honoured to be among these wonderful creative beings who happen to have M.E.

I was also invited to exhibit my art at the M.E. Institute in the virtual world 'Second Life' (see earlier post). I had NO idea what this Second Life was all about, but I agreed. Kirsty, the woman behind the project, (to help people with M.E. make contact and have a place to visit when housebound) became a very important person to me. I became a member of Second Life and visited the Institute many times. There again I found myself among other creative people with M.E. and came to the realisations that 'we can't all be mad', M.E. does exist.
Again the comments on my work were heartwarming. Thank you all!

I realized that I have something to share with the world, and that I was finally able to embrace the fact that I have M.E. I was ready to add my voice to make other people aware about the effects of this illness on ones life. You might say I have done that in the past, but now I felt ready for it. Reached the point of acceptance (again! as they come in many forms...)

I felt that my work and voice needed to be 'out there' in a more coherent way. I asked Shannon to 'sort it all out for me'! She did. Thanks Shannon! She suggested that I needed a blog. To which I agreed. She knew what was good for me! And a new website... I must admit that for me this has become a NEED, not so much a want anymore!

The thinking about how I would like my new website (which is in the making!) to look, and the creation of THE blog, or maybe the events of the past few months made me see 'where I am in life' and 'who I am in life'. What are my hopes? What would I like to share? What is important to me?
Nature. Creativity. Writing. Friends. Life!

Last night I wrote the first draft for the M.E. page for the revamped website, and ... it is about what M.E. means to me. The good and the difficult.
I'll let you know when the new site is up and running.

Thanks for 'listening'!

Ps. I did stop the treatment and feel the better for it.

A Real Virtual Exhibition!

I have been invited to exhibit my artwork at the Murdoch Institute, in the virtual world Second Life. (If you are a ‘Second Lifer’ See it here. )

The exhibition features creative works in all forms authored by people with ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome).You will see paintings, illustrations, line drawings, sculpture, digital art, poems, prose, song lyrics and more. Every contributor has a story to tell. The exhibition is being launched on International ME/CFS Awareness Day in order to promote awareness of this misunderstood, under-funded and under-researched illness. Despite having ME/CFS, contributors to the exhibition have demonstrated an amazing wealth of talent.