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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The importance of sleep, wisdom from nature

I think, yet again, that we can take our lesson from nature.

A marigold, not yet seen the light of day. © Corina Duyn 2014

"Sleep, is a relaxation during which tissues are repaired", states the Rev. Charles A. Hall in his 1926 book Wild flowers and wonderful ways, Peeps at nature. If we don’t sleep, or as many of us dealing with ME/CFS don’t have a restorative sleep, we don’t have the time to repair our tissues, and can be further harmed.

A marigold, slowly unfolding. © Corina Duyn 2014

Rev. Charles A. Hall explains: “Plants, like animals, need their periods of rest, not only the great rest of Winter, such as is seen conspicuously in many trees, but regular hours of what may be likened to sleep. Both leaves and flowers take up sleeping position, which is not generally so apparent as in the case are dainty little Wood Sorrel (Oxalis Acetosella), sometimes called Shamrock.” I see the same in the marigold flowers… and I took some photos to show you what I mean.

A marigold, with petals soaking up the sun. © Corina Duyn 2014

“The sleep of plants, like that of animals, is a relaxation from certain activities during which tissues are repaired in preparation for work it to be accomplished. During sleep we protect ourselves from the cold by covering ourselves with blankets, but plants secure the same results by the sleeping position of the leaves, in which the surface is exposed as little as possible.”

A marigold, going to sleep for the night. © Corina Duyn 2014

In the same little book the Rev. explains how Charles Darwin showed by experiment that “leaves, when compelled to remain in their stretched out the position, were injured by cold, whereas leaves of the same plant allowed to take up their sleeping position were not harmed.”

Sleep tight!

From: Wild flowers and wonderful ways, peeps at nature. Edited by the Rev Charles A.Hall, F.R.M.S. 1926 Page 33 and Page 44

the very book I read during my stay at Annaghmakerrig

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homehelp in Ireland

This article has also been published on thejournal.ie  Friday 23 May 2014

there are some great comments from other people dealing with issues with HSE 

please read, it make your heart boil.

Early April a request was made for home help and carers allowance. As of today, the 20th May I hadn't heard anything from either of those application. I rang the public health nurse who had made the application for home help on my behalf. Apparently she had received a letter on 24 April that my application had been refused. That is all, the letter said. Refused. She had assumed, rightly I think, that I would have received a letter too. Not so.
I am furious and disappointed that nobody bothered to tell me that I was not going to get homehelp. 

Does the HSE think that it is a novelty to get home help? That it is easy to acknowledge that one cannot look after oneself any longer? Let me tell you is the worst thing of being chronically ill. To acknowledge that you have lost your independence. To acknowledge that you need help with the most basic daily needs. To have strangers coming to your house. Does the HSE think that anybody in their right mind in Ireland would request homehelp and willingly go through this humiliating experience just for the fun of it?

Being ill is hard. Having to fight for every basic human right is much, much harder. You hear heart wrenching stories everyday on the radio.

It feels a bit like there is somebody sitting in an office with a pen and just decided to tick the box 'refused', without any further explanation necessary to the person who made the request, and who needs the help. Maybe this is not a fair assessment of the public servant, but that is what it feels like.

Having a home help is not a novelty. It is an unfortunate necessity.

I'm furious that the government for not looking after the very people who need the care of the state the most. I nearly screamed at the television when I heard the news that the government was talking about 30 million being spend on a sports stadium in Cork, money given to the GAA. Don't have enough money already? Both Enda Kenny and Eamon Gilmore were so proud to make this announcement. They were glowing. 

In the meantime people are losing their medical cards, they don't get homehelp, carers allowance is harder and harder to get, young children in wheelchairs which they have outgrown, are being told that there is no money for a new wheelchair, or physiotherapy, or for speech therapy... To to attend a daycare.

Having people on trolleys in A&E is becoming the norm. Waiting lists to see a consultant are months, even years. It took me nearly two years and several letters, and degrading tests to receive a mobility scooter from the HSE. At least this time round they didn't say that 'a motorised aid would make me lazy'. That was a plus!

I am nearly sixteen years in this 'game' of dealing with the so called 'health' board, and have seen a deterioration in the care provided by the state.

I am not looking for easy handouts. I am too proud to be able to look after myself as best I can, but there are times I, like many others, do need the support in order to take our meaningful place in society.

This article has been published on thejournal.ie 

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"Re-Emerging" sculptures

'Happy to re-emerge'
16x16x15cm
© Corina Duyn 2014

'Happy to re-emerge'
16x16x15cm
© Corina Duyn 2014

"Happy to re-emerge" is available for €145, but with the understanding that the sculpture is available for the exhibition and book launches in September 2015

To reserve it  please email me

'Emerging'
17x11x19cm
© Corina Duyn 2014 

'Emerging'
17x11x19cm
© Corina Duyn 2014

"Emerging" is available for €145, but with the understanding that the sculpture is available for the exhibition and book launches in September 2015

To reserve it  please email me

Once a day I try to work on my sculptures. Twenty minutes at the time.

Even within these short times, there is stills something to show for in the end.

If you are interested in any of these sculptures, please do get in touch.

Both stones were brought to me by friends. Thank you!

And these were the sculptures I made during my stay at Dechen Shying and are in their collection.

all together at the edge of the Atlantic, outside my glorious conservatory at Dechen Shying

'Sinking'
15x19x11cm
© Corina Duyn 2014

'reaching for the light'
10x10x11cm
© Corina Duyn 2014

'Emerging (one)'
11x12x19cm
© Corina Duyn 2014

The sculptures found there place on the window sill at Dechen Shying

For images of my weaving, please see here
Artworks which were on show at the Seeders Exhibition see here 

commissioned stone-sculpture. Stone supplied!

ps. 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!