Saturday, May 22, 2021

My Tree House - moving into long term care

 Soo much to say. I tried to make it as brief as possible.


After two years of discussions with friends, family and in my own mind, I made the very big decision to move into a nursing home. It has been the right move but it certainly did not come easy.

Signing up at Signacare 

As you might know I have struggled over the past three years to get adequate and sufficient care to enable me to continue to live independently at home. See ME Advocates Blog for the back story.

The inadequacy of care landed me in emergency accommodation, a day after Christmas 2018. It was not a good experience. I vowed this would never ever happen again. A few weeks later I ended up in hospital and the conversation about what/if/when I could no longer cope at home began in earnest. My main drive to engage with this very uncomfortable topic was to be part of the narrative. If I had to move out of my beloved home, I would be the one making that decision and choose my location.


In mid-December 2020 I was facing an emergency placement again as the care agency no longer had carers available in my area. My two amazing carers had resigned from the agency, one for a permanent job and the other for personal reasons, shortly before. A frantic hunt was conducted by Disability Services to find a replacement care agency and keep me at home. On the 22nd of December I heard that I would have care from the 23rd by a new agency.

The stress of this was immense. More than I can express in words.

It brought me to apply for the Nursing Home Support Scheme, which if / when I had to move out of my home, would provide me (if approved) with financial assistance. The hardest application I have ever made in my life.

The continued stress of being dependent on care agencies to provide suitable carers, intensified during the past few months. There was absolutely no consistency in who came into my home. The more I expressed to the agency that consistency was an absolute necessity within the challenges of living with ME, the more I was responded to with “you don't have to keep telling us that”. But they didn’t listen. The more I expressed how some carers were a perfect match to my needs, the more these carers were removed from my schedule. This brought me to tears. Daily. The main topic of conversation with friends was about the bullying attitude of the agency. Even writing it now, brings distress. I could no longer correspond with the agency, as I feared that the most suitable carers would be removed further from my schedule.


Initially my application for the Nursing Home Support Scheme was declined. Understandably, as the application in no way reflected my circumstances. Is it written for the over 65’s and/or those living with dementia.

With the help of a friend I wrote an appeal. It took weeks to write and edit as I am slowly losing the ease to write. (This narrative here has been weeks brewing in my head ... but I need to write it ... for you, for others in my situation and for me...) My appeal was accepted. Within days actually. (Mid-April, I think it was.) 


Over the preceding months I had researched many care and nursing homes in two counties, as well as independent living situations. I kept coming back to Signacare; Signacare have four locations with one in Waterford city. Their ethos spoke to me. The HIQA (inspection) report was positive. But what got me most was that this location was a renovated old hotel/Manor House. The photos I researched on Google showed me that there were many trees.

Trees means birds...!


After approval I rang the nursing home and had a very positive conversation with the manager Anne. She was very aware of the challenges of relocation, especially at a young age (59). She listened and provided me with answers which brought some peace to my frazzled mind. She suggested I needed to come and visit.

A day later a friend who was aware of the need for proper care, offered to fund the trip to the home by taxi. A few days later my friend Pascale and I visited Signacare Nursing Home in Waterford. An hour from my previous home.

We were greeted by Anne, and shortly after, the resident cat welcomed me and made all my worries ease. I laughed from relief. We sat under the tree I now see from my room. This memory makes my legs tingle. All was right at that very moment.

The cat.

While in the garden Anne pointed to the room she would show me. I said “that IS my room!”

And it became to be.

A week later Anne came for a home visit. To do the intake, but also to see who I was in my own environment.

A week later I came to my room for three-weeks respite.

But, it all felt right. Well, most of it. Funding came through a week after I came here. I stayed. My room felt like a Tree House and I named it as such. 

I was home. 

Tree House


Over the past year I had been sorting my house (See previous posts ). Probably in anticipation of this move. I had such a need for simplifying my life. I felt no longer able to manage my home and surroundings without consistent care. I struggled soo much. Family and friends expressed concerns. I realise now I was continuously trying to adapt my home, garden and studio to make being at home possible. It wasn’t. It isn’t. I tried. For sure. Friends have since told me that I was ‘imprisoned’ in my bedroom, and ‘shackled’ to my house. 

Two main reasons for the move were the ever-increasing demands of this illness ME (Myalgic Encephalomyelitis), as well as the failings of the care system to keep people with illness or disability under the age of 65 safe in their own environment. In charge of their own care with all the support required.


I am sad. 

I am happy.

I am grateful that I took the initiative to stay part of the narrative. 

I landed in the best possible place for me, right now. Yet it is a bizarre twist to never have a normal home again. Ringing the County Council to cancel my rent, my home, a few days ago was incredibly distressing.

But here I am supported to remain me. To find ways to re-gain my creative spirit.

I am valued for who I am. My views and questions listened to and respected.

I have the most beautiful room with a big window and watch nature from my bed.

I no longer have to manage a home.

I can go outside for a few minutes a day into the big spacious courtyard and just enjoy being in nature. And not have to organise maintaining my once so beloved garden.

I have access to 24hour care. I am left in peace when I need it.

My room is decorated with pieces of me. I tell myself that I have a lovely tiny apartment which happens to be in a nursing home. It makes it easier on the mind to deal with the immensity of this move. And the seemingly unsuitable location.

Carers tell me they love coming into my room as it is peaceful.

I am home. I am safe.  

Something I could no longer say at my house.

The universe came together and gave me my Tree House.

View from my bed

Thank you for having joined me and continue to join me along this adventure. This never-ending story. 

Thank you all who made this move possible, especially my friends who are sorting out my house without me having to witness the destruction, the de-construction. It would be much too stressful.

Thank you to some amazing carers and staff here who have made me feel welcome and so supported.

Care and support 


The Tree House

(Address emailed on request)


This was an incredibly difficult decision to make. One which was years in the making. Please respect my choice. And try not see it through your eyes. Thank you.

Monday, March 29, 2021

It takes time, and trust, to accept change

To follow on from the last post of letting go of my studio,  I have to say that ‘it’ all makes sense in the end. (It always does...)

Work in progress on scrapbook-cover
From the comfort of my day-bed in my ‘new’ (studio) room

But first of all: Thank you for those of you who reached out and shared their thoughts on the continued changes illness demands. Also interesting to hear and read how, yes, these changes are incredibly hard, but that it is my strength to not shy away from them. That I don’t ‘freeze’. That I go along with these changes.

True. And thank you. But boy are these changes hard on the soul.

Long time ago

I have to admit that my OT (Occupational Therapist) suggested in early 2018 that maybe I should bring my studio indoors. She was not the only one who suggested this. But at that time I just couldn’t imagine how this could be done. There was so much stuff in my studio. How on earth could I bring this in and not totally clutter up my lovely home. I wasn’t ready.

As you read, I did make many changes over the years. Maybe that is what I needed to do. One tiny (or big) step at the time. Nuggets of change. Trying to go with the flow- although I ‘swam against the tide’ as much as I possible could. 

Yes - I remain stubborn.

So now - March 2021.

I have to admit that the move to bring the very much reduced selection of art and craft materials indoors was right. During the sorting out it was paper and some fabric which got my attention. I did save some paints too, but not sure yet why. When it came to the box of puppet eyes and hair for some reason there was “No Way!” I could let these go. The reason? I haven’t the foggiest idea!

What makes me admit that the move of having a (reduced) studio in my room where the ‘day-bed’ is was right thing to do, is the fact that I can do a tiny bit of something creative most days. While comfy on this bed.

Photo album-scrapbook

Over the past while I have started to sort photos (again). And I like cutting paper. These two activities combined made me cut up photos. Both I can do while in bed, on recliner or on my day-bed. 

I am hoping over the coming year (leading up to my 60th) to make collages from these photo cuttings. I decided to do this on A3 heavy good quality watercolour paper. In landscape format as they fit perfectly on my over-bed and over-chair tables. (One has to remain practical). 

After a lot of thinking and planning, I came up with the idea to adapt an Lever-arch folder to hold the sheets. With help from friend Pascale this was created two weeks ago. And how lovely it was to have a creative person here to help me, versus just carers coming in. (No offence to carers!) A bit of normality. (Keeping Covid restrictions and precautions in place of course.)

My brains, combined with her brains and ability, the basis for the cover was made. The possible covering for this has already seen many a change: from red leather to handmade paper, to fabric, to adding a photo, to adding the wooden tree from the shadow puppetry time, to embroidery...


This process of thinking is so incredibly useful to divert the draining energy around ongoing care issues and decline in health. As always I find it so powerful to be able to focus the mind to something positive and constructive. It still takes energy, but is more balanced in a way.

Having access to some fabric, scissors, treads, paper, etc etc in my ‘day-bed-room’, dare I call it my new ‘studio’?, makes it possible to do just a little bit of trying out at various times during the day. This would Not have happened if my material was still in the real studio. There! My OT and others were right all along. I just needed time to get there...

So, watch this space to see what will come of this photo-album-scrapbook-cover, and inners.


What is also very beautiful is that my idea to do this project has inspired two other creatives along the way. One fellow creative whom I had initially asked to make the cover for me and my friend Pascale. The significance for me is that I truly thought my creative mind had ‘died’. That I had reached the point of being unable to access it. It hasn’t. And am very grateful for that.

Tuesday, March 23, 2021

Letting go of my studio

A deja-vu moment 

... as two years (2001?) or so into the illness I also de-constructed a studio. A small amount of art materials were saved and stored in boxes in the shed of my new home. Over the years they came out when I became able to sculpt again, and later do art projects with the kids in my street.

Move forwards a decade or so and once again I had a fully fledged studio in the garden of my (again) new home. It was/is a thing of beauty. (See photo at bottom of page)

With help I made this puppet-hospital bed for the 
‘Invisible Octopus’ project. (2019)
A year later my day-bed was put at this spot in my studio.

It was a place for me to create - to be in the garden and close to the birds. My ever inspiration. Many a sculpture and puppets were created - all at twenty minutes at the time. Each piece taking months to make. But I had time.


After facilitating the ‘Life Outside the Box’ puppet project I started teaching in my studio. A place where stories were created and shared. I am looking back at this time with great privilege and gratitude. 

The last class of three students finished in early 2018. After this I moved to online teaching. When supporting my students online was no longer possible either the course is now accessible as self directed course. Sharing decades of learning, with videos recorded in my studio.

One of my student’s work (Lorraine Shanahan) 
Trying out a Mohican hairstyle 


In 2019 I had to acknowledge that my studio wasn’t so accessible for me anymore. My dear friend Heike reconfigured the space and we did a good clear out. That same year I received a mentoring bursary from Arts & Disability Ireland to explore how I could still tell my story creatively. ‘Invisible Octopus’ was the result.

With mentor Emma Fisher
(and Aram who did some film trials) in my studio
Before studio was reconfigured in 2019

However I was only in the studio - in this beautiful place - when I had practical support. I could not make what my mind designed. I was never in my studio on my own. 

A tidy and more accessible space.


Last summer I very symbolically sold my work table and again (with carer/PA) did a further clear out. A reconfiguring of space. I now had a day-bed by the window. A place to rest instead of create, The space did retain its creative feel. My puppets, dolls and other people’s artworks were all around me. I was granted some beautiful moments of being part of my garden from the comfort of this bed.

The table gone - a day-bed in its place

But it wasn’t always safe for me to take the few steps to the studio. Two steps down from my kitchen door - about 7 to the next easy steps. At times I couldn’t get up off the bed. Also I realised that the place was too cold during autumn and winter.

The most recent re-configuring (2021)

Taking into account that I am less mobile and spending more time horizontally, a big BIG decision was made to move the day-bed into front room of my home.

The studio had its biggest clear out yet of art and craft books, and most materials. Even my puppets and dolls were brought into the house, and are now stored away. (Will share their stories one day - for now see Instagram)

A work in progress.
Seeing this broke my heart, but at the same time is ok...

The ‘right-ness’ and ‘odd-ness’

The good thing is that lots of materials have found other creative minds, young and ‘old’. At least they are being used! The very mixed emotion is that it is kind of ok to clear my space (I like the sorting), but at the same time sitting in this deconstructed space makes me cry. It feels too ‘odd’. Thinking about it makes me swallow rather hard. It is tough. It is an other letting go. Another acknowledgment that illness is very much in control.

New creative space?

Very few art materials survived the culling and are now in the same space as my day-bed. This space has also seen a major transformation, from study (where my books were created) to a space where I did my shadow puppetry last year, to a place of rest. My ‘Breakfast at Tiffany’s’ room, as one carer calls it is also a place where I can eat in silence and not be around the inevitable noises of the kitchen. (Story for another day)

I have no idea if I will use any of the saved art materials but it does feel good to hang on to the possibility. 

The studio space... my garden room... is in the process to being cleaned properly. The paintings will remain on the wall. Maybe it will be a place where I can have my lunch some days. Who knows.

It is ok, and it is very very ‘odd’.

The remainder of my art materials.
A studio in a few baskets.

My studio (photo from before the garden
 makeover two years ago)

Monday, March 1, 2021

Early retirement?

 My dear friends

I am playing around with little ‘Paper-me’ used
in the shadow puppetry, but without the projector. Just ‘raw’, as it is.

Thank you for stopping by at my blog. A friend alerted me that I hadn’t entered any post since the 7th February. I do have thoughts about writing, but often they don’t get past my own brain or at most into my personal diary.

The past few weeks have been a rollercoaster of sorts again. With help from many hands and minds I made great progress to letting go of my books, art prints and postcards. As well as the work created for the exhibition, which never really was.

It is good to let go

Many books went to charities and organisation looking after the ill. Including ‘Jack and Gill’ foundation, local care home and the Irish ME Trust. 

I received some beautiful heartwarming emails and orders from all over the world.

It brings great joy to know what my words, images and thoughts have been set free from closed boxes and into the hearts and minds of many.

Thank you all

The online bookshop will close on the 10th March 2021. Of some books I only have few copies left, so if you like to avail of the almost no cost books, and Art Packs, please see my SHOP page 

The page to book the puppet making course will remain live after this date.


Last night in bed I thought about the reality of my current situation: being more depended on care, and finding it quite a challenge. Since my care was moved to a new agency, there are a lot of different carers coming in, sometimes three in the one day. 

I have to admit that the inconsistency of care led to a big struggle to ‘keep it all together’. Much more is asked of me than I am able to give. I have sought support on how to deal with this. Including from Greg and Linda Crowhurst, from Stonebird, who wrote this excellent document partly inspired by our communication. Their Carers book for people with severe and very severe ME is on the counter in my kitchen. 

Old sculptures and puppets

In dealing with the reality of a decline in health and the immense need to make life simpler, the clearing out continues. When I am able for it I ask my carers to bring in my sculptures and puppets in from the cold unused studio. It is actually quite an emotional journey to connect with my works, some created nearly 50 years ago. Some more recent, but with a much bigger story to tell me...

Reconnecting with ‘Johnny Dwyer’ from ‘Life Outside the Box’
He told me he had NO intention to go back into his box...
A great dilemma for me.

One day I will document their stories here, but for now I have written short thoughts on my Instagram page. Please head over there if you can? 

Some of the older works are ‘up for adoption’. Please enquire if one gets your fancy (as shared on Instagram page). I am hoping to build up a fund for future care needs from these sales.

Creatively - I have taken early retirement. On health grounds

That thought made me giggle last night, as for the past 22 years my art was mostly about the state of living with illness... The challenges, the hopes, the fears and moments of gratitude.

During the sorting of materials from my studio, it is paper which gets my most attention. I will play with this notion for a while. Play. The all important word: Play. Having fun. Bringing ease.

Will try to check in here again.

Thank you for joining me.

Much love and stay well and stay in touch, please.

Corina (1st March 2021)

Sunday, February 7, 2021

Thank you

 My dear, dear friends.

I hope this finds you all well in this utterly strange time. 
Life is ever changing. Life is never linear. But who would have imagined a year ago that the world would change beyond recognition. For me personally, in the strangeness of life with chronic illness, not a whole lot has changed. At least not in the way of being housebound. That simply continued as before Covid. However, unfortunately my health has taking another bit out of my life and I am making changes accordingly. Life is never linear.

As some of you are aware, last year I explored the art of shadow puppetry. This proved to be an amazingly accessible art form. I didn’t require any practical help to create. What a beautiful revelation. I could make a world in miniature by cutting a little ‘paper-me’ as well as the birds and the tree in my garden. Projection them (using an overhead projector) onto the opposite wall brought me and others into regions of my mind I had not yet explored. Over time I edited the ‘Invisible Octopus’ poem and created a very short video-poem, the shadow images as illustrations.

“Here is a poem, a story, an animation, of a life triumphant under the weight of a debilitating illness M.E., of a woman whose words are her lifeline, an inspiration to others.” Dolores Ronayne, Poet.


These images were also part of an exhibition - which never really was due to Covid. Art about isolation - in isolation ... See video of the exhibition on the POEM page.

Since this time I have not really been able to have access to my creative mind. I think this will return in some shape or form after I make further changes to my lived environment and adapt to new care support.


I have a great desire to make life much simpler. It is a need, not just a desire.

As part of this process I sorting through my collected books, course material, writing files etc etc. But also sorting through my own published books, prints, cards and bookmarks. This led to the decision to greatly reduce my online shop. 

As part of this my remaining books are now available by paying for postage cost only (or as some people are kindly doing - adding a small donation of their choice - how beautiful.)

The cards and prints etc are available as ‘Art Packs’ which have an eclectic mix of material - each pack being different. Currently I have 12 general ‘Art Packs’ packs left, and 6 of the ‘Invisible Octopus Art Packs. All at hugely reduced costs.



I am indebted by the huge support I have received over the two decades (and more) to enable my creative mind to voice the challenges, joys and moments of gratitude of life with illness. Support from friends, family and the general public. But also from funding institutions, whom have been more than generous in their encouragements as well as financial support. 

My deepest gratitude.


I am sure I will find some way to continue to use my voice. To tell my story.  But again to make life simpler for me, I have decided to go back to my Blog writing, instead of creating email content/ and longer Facebook post. I would like to ask those of you who’d like to stay up to date on my ‘adventures’ to sign up for Blog updates.

You can do so by visiting the web version of this Blog which will show a sign up option on the right hand side of the screen. (On a mobile device, scroll down to the bottom and click on ‘view web version’.)

Many, many thanks for being such an important part of my journey. I can not thank you enough.

Much love to you all


February 2021