{"id":7870,"date":"2026-01-30T11:18:57","date_gmt":"2026-01-30T11:18:57","guid":{"rendered":"https:\/\/www.corinaduyn.com\/site\/?page_id=7870"},"modified":"2026-05-05T11:20:14","modified_gmt":"2026-05-05T10:20:14","slug":"me-me","status":"publish","type":"page","link":"https:\/\/www.corinaduyn.com\/site\/me-me\/","title":{"rendered":"ME &amp; me"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\"><strong>Artist in care &#8211; Living with severe ME<\/strong><\/h3>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-scaled.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"702\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-1024x702.jpeg\" alt=\"\" class=\"wp-image-8158\" style=\"aspect-ratio:1.4581355610404405;width:428px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-1024x702.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-300x206.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-768x527.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-1536x1053.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-2048x1405.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\">Image from <strong><a href=\"https:\/\/www.corinaduyn.com\/site\/invisible-octopus-video-poem\/\">Invisible Octopus<\/a><\/strong><\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"has-text-align-center wp-block-paragraph\"><em>\u201cA personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.<br>An honest reflection, among years of creative metaphor, on what remains possible when life becomes very small.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Corina Duyn \u2014 May 2026<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Preface<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Thank you for your visit.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">When we were updating my website as part of my \u2018Little Wings\u2019 Creative Archive at R\u00e9alta, Centre for Arts+Health, and publication of all my books on ISSUU, it was suggested that I create a page about ME: what it is; what is life with severe ME really like for <em>me<\/em>, not hidden in my usual metaphors of puppetry, art, or poetry. Which, frankly, is much easier.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This writing has taken me six months, one reason is that life in full-time residential care with severe ME is as complex as a large flock of birds. With help I am trying to identify each of those birds individually. This piece shows perhaps just a few feathers on one wing of the bird called ME. &nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If wish you can explore each \u2018feather\u2019 individually, or read the whole piece. Over time I will (probably) add more \u2018feathers\u2019.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>4 May 2026:&nbsp;<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Living with ME;<\/li>\n\n\n\n<li>Home;<\/li>\n\n\n\n<li>Post-Exertional Malaise (PEM);<\/li>\n\n\n\n<li>Artist in care;<\/li>\n\n\n\n<li>What I miss\/what I value;&nbsp;<\/li>\n\n\n\n<li>Living by limits.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Living with ME<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Living with Myalgic Encephalomyelitis (ME) is not simply about being tired. It has completely reshaped the landscape of the life I once knew, and it continues to do so.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I went from being an independent person\u2014running a successful arts business, caring for a home, and being part of my community\u2014to being unable to perform simple tasks, like cracking an egg or opening a tube of toothpaste. This happened, seemingly overnight, twenty-seven years ago on a summer\u2019s day.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">In medical terms, Myalgic Encephalomyelitis (ME) is a severely debilitating, complex, acquired, multi-systemic neurological disease with pathological dysregulation of the nervous, immune, and endocrine systems, and dysfunction of cellular energy metabolism, with cardiovascular abnormalities, leading to profound exhaustion, widespread pain, as well as mobility and cognitive dysfunction.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A complicated description, a complicated life. There is much ongoing research to isolate the cause and find treatments. For now, it is about management of symptoms. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">There is a kind of forced intimacy in having to truly know and acknowledge my body.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Over nearly three decades, ME has moved through many stages. The early years were marked by severe illness: bed-bound, house-bound, but also with hope of recovery. This was followed by a period of relative stability\u2014still ill, but managing to a degree. I could walk about twenty minutes with walking aids, and make art again. Followed again by severe relapses and partial recovery.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>This illness is not static.<br>It is not linear<\/em>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Every severe relapse, at best, brings partial recovery but never a full return to the previous baseline.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-scaled.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-768x1024.jpeg\" alt=\"\" class=\"wp-image-8170\" style=\"aspect-ratio:0.7500047329660552;width:389px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-768x1024.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-225x300.jpeg 225w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-1152x1536.jpeg 1152w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-1536x2048.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2492-scaled.jpeg 1920w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/a><figcaption class=\"wp-element-caption\">Image from \u2018<a href=\"https:\/\/www.corinaduyn.com\/site\/in-bed-i-cut-words\/\"><strong>In bed I cut words<\/strong>\u2019<\/a><\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Home<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A major turning point came after a month-long trip to the UK in 2018, where I spoke about puppetry and disability. It was an extraordinary and deeply connective experience, one that informed much of my later puppetry work. But it cost me dearly. It marked the beginning of a further decline, leading eventually to increased care needs and my move into long-term care in 2021, aged fifty-nine.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201c\u2026 <em>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\u2019t. It isn\u2019t. I tried. For sure. Friends have since told me that I was \u2018imprisoned\u2019 in my bedroom, and \u2018shackled\u2019 to my house.\u201d<\/em> (From 2021  <strong><a href=\"https:\/\/corinaduyn.blogspot.com\/2021\/05\/my-tree-house-moving-into-long-term-care.html%20\">blog<\/a><\/strong>)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This week marked five years in care. I left my home for what was meant to be a two-week respite. I never came back.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nine months ago, I was transferred to another nursing home. I am grateful to have the opportunity to experience a care system I find easier to navigate: solid, clear, and based on respect and equality for staff and residents alike.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I have another beautiful room, this time overlooking fields, trees, and mountains\u2014something like home, like my real home.&nbsp; My life is lived mostly on my bed, with windows open I can see and hear the birds at the feeders outside. Even the swallows flew by my window yesterday, just like at home.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Staff often say they like my room because it is peaceful and airy. Birds, mindfulness and creativity are frequent topics of conversation.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Before I was transferred, I thought perhaps this new home might become a kind of writer\u2019s retreat. I had forgotten that thought until I began rereading these notes.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-scaled.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"978\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-1024x978.jpeg\" alt=\"\" class=\"wp-image-8202\" style=\"width:334px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-1024x978.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-300x286.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-768x733.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-1536x1467.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_8857-2048x1955.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\">Broken body &#8211; <a href=\"https:\/\/youtu.be\/sBFMabTxprI?is=deoZ6x3iTUBfVrZ9\"><strong>see exhibition visit <\/strong><\/a><\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\">  &nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Post-Exertional Malaise (PEM)<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The cardinal symptom of ME is called Post-Exertional Malaise (PEM): \u201ca severe, delayed worsening of symptoms after minor physical or mental effort; a pathological inability to produce energy. .\u201d For ease of communication with staff, we call it a crash, and can happen hours, or even a full day after any exertion.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A crash can be triggered by noise, sitting upright, strong scents, bright light, using a screen for too long, talking, visits, an emotional event, infection, new medication, medical intervention, showering, or travel in my wheelchair, even after beautiful events. It\u2019s endless.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">One of the least visible aspects of severe ME is how profoundly the body can react to ordinary surroundings. Loud noise can feel like someone is drilling into my skull without anaesthetic. I do use noise-cancelling headphones as it is now impossible for me to write or draw when there are sounds in the background, not even quiet meditation music. Silence is key.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If noise, heat, and strong scents occur all at once, my body completely crashes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Visits are precious to me. I love seeing people I care about, yet even wonderful, creative conversation can come at a cost. If two people visit, it may take a day or more to recover. Sometimes I crash while the visit is still happening. But the value outweighs the crash.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">When I go beyond my limited energy supply, adrenaline kicks in and I can keep going for as long as necessary. I can look fine. But I start to speak quickly, as if my words have to leave before I crash; it feels as though my brain splits in two. My speech slurs. I turn pale. I need to lie down immediately\u2014flat, curtains drawn\u2014and remain motionless until the pain eases. My ability to communicate becomes impaired, and my swallowing worsens.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">During a bad crash, I need to be cared for in bed, as I do not have the capacity to transfer to my wheelchair to go to the bathroom. On a few occasions, a hoist (patient lift) has been used to transfer me from my chair to the bed.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Recovery may take hours, days, weeks, longer\u2014or remain incomplete. Each step backwards always brings the question: is this temporary, or permanent?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"890\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965-1024x890.jpeg\" alt=\"\" class=\"wp-image-8156\" style=\"aspect-ratio:1.1505767432193703;width:380px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965-1024x890.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965-300x261.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965-768x668.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965-1536x1335.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_0965.jpeg 1851w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\">View from my bed &#8211; the trusted Robin <\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>What I miss\/ What I value<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">ME has brought huge losses, including my much-valued independence; my home and beloved garden, where friends often stopped by for a chat or were able to stay with me. I am grateful to my family and to friends of decades who still travel\u2014even from abroad\u2014to spend time with me and stay in touch via social media.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I value not having to look after a home anymore; in that regard, my life is simple. I value being safe and having access to care, and can still observe bird from my bed.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I miss my studio\u2014not just as a place to create, but as the beautiful shared space it became when I was teaching (<strong><a href=\"https:\/\/youtu.be\/eIq9MkAdZO4?is=K50rwSngTrl0adx8\">see Nationwide video<\/a><\/strong>). I also miss sharing my work and life through lectures, in person or via video link. I am grateful these lectures were recorded and are still <a href=\"https:\/\/youtu.be\/j5cFBtk5Oao?is=Y_ix-aSLHn3Di1Mj\"><strong>shared<\/strong><\/a> and I hugely grateful for the creative support I have while in care, from R\u00e9alta\/Waterford Healing Arts, and Creative Waterford.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I miss being able to write when I wish, and the ability to use a computer for my work; to read a book; to watch a documentary; to listen to music, but value silence.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I miss the ability to walk, to have a bath or a shower, to be brought on a drive through the countryside; to visit a city, a gallery, a bookshop\u2026<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I miss the simple pleasure of having a shower\u2014the sensation of water on my skin. I do not miss the extreme pain that feels as though it wants to come out through my skin afterwards.&nbsp; I value that the current weekly routine is still called a \u201cshower,\u201d even though it involves hair washed over the sink, assisted washing, and feet in a basin with Epsom salts. I\u2019m still floored after, but I value being clean.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>And yes.<br>I miss eating<\/em> \u2014 <em>Food holds many memories.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The increasing inability to chew, swallow, and digest is difficult, as I now rely on bottles of oral nutritional supplements as my main source of nutrition, which have, I must say, eased the digestive pain. With my niece Vera, we invented \u201cfood memories\u201d to bring a little fun back into the reality of life on supplements.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Recently, I have been prescribed powerful symptom-control medications for pain and sleep, in the hope of restoring some quality of life. The peculiar mix of previous medical procedures, stronger medication, little to no food, and a good home has brought some measure of ease back into my life and enabled me to work on this \u201cflock of birds,\u201d lying flat in bed.<\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"847\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044-1024x847.jpeg\" alt=\"\" class=\"wp-image-8214\" style=\"aspect-ratio:1.2089864393820136;width:410px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044-1024x847.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044-300x248.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044-768x635.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2044.jpeg 1160w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\">A little drawing <\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Artist in Care<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Moving into, and living in care in the \u201cTreehouse,\u201d as I called my room, was explored creatively with my co-artist, Caroline Schofield. This resulted in the groundbreaking exhibition <em>I Brought the Dream of Flying<\/em>, which showcased much of my puppetry work, telling a new story, as well as the award-winning book of collages <em>In Bed I Cut Words<\/em>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">My creative spirit still wants to fly, but my body cannot come along. It is like an ache in the muscles that once shaped clay, now barely able to pick up small pieces of paper\u2014a puppet without hands.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Here, in my \u201cwriters\u2019 retreat,\u201d I ponder and try to give meaning to the world I live in. I write in my diary or on my iPad when my brain and hands allow. I have also recently embraced how AI can aid me\u2014not to write for me, but to, in a sense, hold my hand. It helps me identify each \u201cbird in the flock,\u201d to find paragraphs of previous writing on a specific topic\u2014like I did here about ME. It\u2019s a bit mind-blowing, but remarkably useful in allowing me to write again.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I have learned that I can speak my thoughts into the app, and within seconds a transcript appears. I can return to these musings when I wish to create a poem.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">And yes, the question of what \u201chome\u201d means in terms of life in care, persist. Perhaps home is not a place lost, but a feeling, a memory; I endeavour through my observations and writing to gain a deeper understanding.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">ME, like any long-term illness, is both a challenge and a teacher, continually asking for acceptance\u2014not just in the logical mind, but deep within the body, where truth lives. I can understand intellectually that I live in care, and the challenges of illness, but emotional acceptance is a different journey. It requires patience, commitment, and honouring.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Grief and gratitude, though they seem like opposites, often sit side by side. So do hope and joy. This is one layer of a life still unfolding.<\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-scaled.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-1024x768.jpeg\" alt=\"\" class=\"wp-image-8258\" style=\"width:452px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-1024x768.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-300x225.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-768x576.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-1536x1152.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-2048x1536.jpeg 2048w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7664-1-640x480.jpeg 640w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><figcaption class=\"wp-element-caption\"><strong><a href=\"https:\/\/youtu.be\/cYK3cAjbDwU?is=Wz3AeHc5I1MYi1Vr\">P\u00f3ilin<\/a><\/strong> <\/figcaption><\/figure>\n<\/div>\n\n\n<p class=\"wp-block-paragraph\"><strong>Living by Limits<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Life is governed by rhythm, pacing, and the careful use of limited energy.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I use my powered wheelchair to travel the few metres to the en-suite bathroom. As I am not always in time, or able, I use incontinence wear.  I hold on dearly to this small level of independence, yet I am also deeply dependent on staff for personal care, given with respect and ease. This includes help with washing, toileting, and medication. I use these moments of support to learn about the lives the carers have left behind to care for us.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I eat my breakfast in bed at about 9am, and in the late morning I receive personal care and get dressed. I then move back to my bed and lie on top of the blankets. During the morning, I may have short sessions of creative work, such as writing on my iPad or doing some drawing or colouring.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">In the afternoon, I try to visit the inner garden to connect with nature. As this is my first spring and summer here, I watch it unfold, noticing what hidden treasures are in this well-established garden. Last week I saw two beautiful butterflies: the Small White and the Small Blue. How special.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">By late afternoon, usually between four and five, I am helped into night clothes and back into bed. I try to write a few words in my personal diary. In practical terms, my day is over then. I no longer have the capacity to read, write, draw, or colour. That leaves several long hours before my night medication arrives.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">They can be the most difficult hours of the day. I am tired, vulnerable, and aware of where I am. I am 64 years old &#8211; I live in care &#8211; I want to \u201cgo home\u201d;&nbsp; memories of life lived come rapidly. As I need peace and silence in order to settle to sleep, it is inevitable that others need or create noise.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">At night, I make my own small rituals. I say goodnight to <a href=\"https:\/\/youtu.be\/cYK3cAjbDwU?is=OyFhipN6Bt8mFUoR\"><strong>P\u00f3ilin<\/strong><\/a>, the only puppet I still have. She travelled with me on that memorable trip to the UK in 2018, which irrevocably changed the course of my life.&nbsp; She sits on the windowsill in her travel case. In some ways, she is another version of me: witness, survivor, and keeper of memory. Even staff speak to her.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">As I settle for sleep, I fold my hands to the little Buddha on my table and stroke the small toy cat on my bed. I lie on my side, and hold a stuffed toy bunny, which comforts me and muffles the noise against one ear.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">At about 9pm, the night nurse comes with my medication and turns off my dimmed light.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u201cGoodnight, Corina.\u201d<\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"639\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-1024x639.jpeg\" alt=\"\" class=\"wp-image-8225\" style=\"aspect-ratio:1.6013821453039827;width:459px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-1024x639.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-300x187.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-768x480.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-1536x959.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7680-2048x1279.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/figure>\n<\/div>\n\n\n<ul class=\"wp-block-list\">\n<li>See Home page <strong><a href=\"https:\/\/www.corinaduyn.com\/site\/ \">https:\/\/www.corinaduyn.com\/site\/ <\/a><\/strong> to read about the Artist Corina Duyn, and links to art, books, blog, YouTube, art archive at R\u00e9alta and ISSUU.<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The \u2018Home\u2019 letter which was read on radio weeks before I moved can be heard here: <strong><a href=\"https:\/\/www.rte.ie\/radio\/radio1\/clips\/22527468\/\">https:\/\/www.rte.ie\/radio\/radio1\/clips\/22527468\/<\/a>\u00a0<\/strong><\/li>\n\n\n\n<li>Read more about ME on <a href=\"https:\/\/meadvocatesireland.blogspot.com\"><strong>https:\/\/meadvocatesireland.blogspot.com<\/strong><\/a><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-large is-resized\"><a href=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2.jpeg\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"598\" src=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-1024x598.jpeg\" alt=\"\" class=\"wp-image-8221\" style=\"width:668px;height:auto\" srcset=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-1024x598.jpeg 1024w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-300x175.jpeg 300w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-768x448.jpeg 768w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-1536x897.jpeg 1536w, https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_7662-2-2048x1196.jpeg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Artist in care &#8211; Living with severe ME \u201cA personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.An honest reflection, among years of creative metaphor, on what remains possible when life becomes very small. Corina Duyn \u2014 May 2026 Preface Thank you [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"ngg_post_thumbnail":0,"footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-7870","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ME &amp; me - Corina Duyn<\/title>\n<meta name=\"description\" content=\"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.corinaduyn.com\/site\/me-me\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ME &amp; me - Corina Duyn\" \/>\n<meta property=\"og:description\" content=\"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.corinaduyn.com\/site\/me-me\/\" \/>\n<meta property=\"og:site_name\" content=\"Corina Duyn\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CorinaDuyn\/\" \/>\n<meta property=\"article:modified_time\" content=\"2026-05-05T10:20:14+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-scaled.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"1756\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@CorinaDuyn\" \/>\n<meta name=\"twitter:label1\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"13 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/\",\"url\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/\",\"name\":\"ME &amp; me - Corina Duyn\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/IMG_2271-1024x702.jpeg\",\"datePublished\":\"2026-01-30T11:18:57+00:00\",\"dateModified\":\"2026-05-05T10:20:14+00:00\",\"description\":\"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/#breadcrumb\"},\"inLanguage\":\"en-GB\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/#primaryimage\",\"url\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/IMG_2271-scaled.jpeg\",\"contentUrl\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/wp-content\\\/uploads\\\/2026\\\/05\\\/IMG_2271-scaled.jpeg\",\"width\":2560,\"height\":1756},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/me-me\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"ME &amp; me\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#website\",\"url\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/\",\"name\":\"Corina Duyn\",\"description\":\"Artist in care\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-GB\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#organization\",\"name\":\"Little Wings\",\"url\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/wp-content\\\/uploads\\\/2016\\\/12\\\/hi-res-shadowfeathercombined.jpg\",\"contentUrl\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/wp-content\\\/uploads\\\/2016\\\/12\\\/hi-res-shadowfeathercombined.jpg\",\"width\":370,\"height\":271,\"caption\":\"Little Wings\"},\"image\":{\"@id\":\"https:\\\/\\\/www.corinaduyn.com\\\/site\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/CorinaDuyn\\\/\",\"https:\\\/\\\/x.com\\\/CorinaDuyn\",\"https:\\\/\\\/www.instagram.com\\\/corinaduyn\",\"https:\\\/\\\/ie.linkedin.com\\\/in\\\/corina-duyn-36034092\",\"https:\\\/\\\/www.youtube.com\\\/user\\\/flyingonlittlewings\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"ME &amp; me - Corina Duyn","description":"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.corinaduyn.com\/site\/me-me\/","og_locale":"en_GB","og_type":"article","og_title":"ME &amp; me - Corina Duyn","og_description":"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.","og_url":"https:\/\/www.corinaduyn.com\/site\/me-me\/","og_site_name":"Corina Duyn","article_publisher":"https:\/\/www.facebook.com\/CorinaDuyn\/","article_modified_time":"2026-05-05T10:20:14+00:00","og_image":[{"width":2560,"height":1756,"url":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-scaled.jpeg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_site":"@CorinaDuyn","twitter_misc":{"Estimated reading time":"13 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/","url":"https:\/\/www.corinaduyn.com\/site\/me-me\/","name":"ME &amp; me - Corina Duyn","isPartOf":{"@id":"https:\/\/www.corinaduyn.com\/site\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/#primaryimage"},"image":{"@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/#primaryimage"},"thumbnailUrl":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-1024x702.jpeg","datePublished":"2026-01-30T11:18:57+00:00","dateModified":"2026-05-05T10:20:14+00:00","description":"A personal essay by Corina Duyn on life with severe ME in residential care: illness, creativity, loss, adaptation, and the search for home.","breadcrumb":{"@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/#breadcrumb"},"inLanguage":"en-GB","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.corinaduyn.com\/site\/me-me\/"]}]},{"@type":"ImageObject","inLanguage":"en-GB","@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/#primaryimage","url":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-scaled.jpeg","contentUrl":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2026\/05\/IMG_2271-scaled.jpeg","width":2560,"height":1756},{"@type":"BreadcrumbList","@id":"https:\/\/www.corinaduyn.com\/site\/me-me\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.corinaduyn.com\/site\/"},{"@type":"ListItem","position":2,"name":"ME &amp; me"}]},{"@type":"WebSite","@id":"https:\/\/www.corinaduyn.com\/site\/#website","url":"https:\/\/www.corinaduyn.com\/site\/","name":"Corina Duyn","description":"Artist in care","publisher":{"@id":"https:\/\/www.corinaduyn.com\/site\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.corinaduyn.com\/site\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-GB"},{"@type":"Organization","@id":"https:\/\/www.corinaduyn.com\/site\/#organization","name":"Little Wings","url":"https:\/\/www.corinaduyn.com\/site\/","logo":{"@type":"ImageObject","inLanguage":"en-GB","@id":"https:\/\/www.corinaduyn.com\/site\/#\/schema\/logo\/image\/","url":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2016\/12\/hi-res-shadowfeathercombined.jpg","contentUrl":"https:\/\/www.corinaduyn.com\/site\/wp-content\/uploads\/2016\/12\/hi-res-shadowfeathercombined.jpg","width":370,"height":271,"caption":"Little Wings"},"image":{"@id":"https:\/\/www.corinaduyn.com\/site\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/CorinaDuyn\/","https:\/\/x.com\/CorinaDuyn","https:\/\/www.instagram.com\/corinaduyn","https:\/\/ie.linkedin.com\/in\/corina-duyn-36034092","https:\/\/www.youtube.com\/user\/flyingonlittlewings"]}]}},"_links":{"self":[{"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/pages\/7870","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/comments?post=7870"}],"version-history":[{"count":72,"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/pages\/7870\/revisions"}],"predecessor-version":[{"id":8276,"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/pages\/7870\/revisions\/8276"}],"wp:attachment":[{"href":"https:\/\/www.corinaduyn.com\/site\/wp-json\/wp\/v2\/media?parent=7870"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}