Arts Designs and Lifes

Lisa C - Artist and Designer with M.E. living and working in Northern Ireland.

[lisacatherwood]

Me and M.E.

Fatigue as a word doesn’t begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E.

I was 14 in 1979 when I contracted a virus known then as glandular fever. I was seriously less than chuffed… I was an 800 meter runner. I was a member of my town swimming club, doing competitive swimming and planning to do scuba diving training (I desperately wanted to be a Marine Biologist). I played hockey and went on my bike to the athletics club on a Saturday. I had a lot to do, but I had friends who had had the illness, a cousin who had been very ill and had had a long recovery over some weeks, so we knew what to expect, and I wasn’t too worried.

I had a high fever and then a low grade fever and felt really rotten and it simply didn’t go away. It’s such a simple thing to write down but the reality was and is horrific for my family as well as for me.

I was finally diagnosed with M.E. (myalgic encephalomyelitis) when I was 22 years old. In the intervening time I had had nearly two years off school. I got O’ levels, at 16, doing two year’s work in a year but was then so poorly during my 6th form that I largely blew my ‘A’ Levels at 18. I spent some time in the metabolic unit at my local hospital as they tried to work out what was wrong, with no success. It was frightening and disappointing for me, and for my family. I was so exhausted, confused and miserable that I couldn’t even fill in the university applications never mind thinking of packing and going.

A pattern developed which has persisted until now. I would start to rebuild my life out of the illness and then catch a bug or even just overdo it a little and be destroyed by it. The illness seems to be something to do with a defunct immune system. Some bugs, colds, flus etc. I catch and get over the same as other people, some I catch and it’s like my immunity fails. I can’t get rid of the bug and the symptoms persist for months and months. In my body it feels like the immunity starts to triumph in one part of the system, but is overwhelmed in others. Like chasing dry rot round an old house. The painful joints start to feel better and then it flares in my digestive system and I have nausea and other digestive symptoms. Or the headaches die away and I feel so physically weak, I can’t stand steadily, lift a kettle, turn a tap on, hold a pen. Not just tired, but sore and stiff and lacking control. I have had long periods of being incredibly fatigued cold and hungry. Mind numb, sluggish forgetful, time concertinas, days, weeks pass in weird disjointed forms, sometimes I can barely speak. Summer days spent in low light indoors with two duvets and a hot water bottle, the central heating on, the fire lit, still freezing cold.

The terror of finding you can’t roll over in bed on your own, the humiliation of having to have your personal care taken care of by someone else, the days when all the radios in the world are on in your head, all light is too bright, all sound is too intense, the indignity of being questioned like a criminal in benefits offices and doctors surgeries. I think I can now write openly about all of this because I have nothing left to lose.

I think I had always tried to hide the damage the illness does to my mind because I was afraid of a diagnosis of mental illness. I had an acquaintance who had the same symptoms as me when we were in our twenties, she ended up on a ward in our local mental hospital. They took her drawing materials away from her. They wouldn’t let her write. I fear this kind of thing more than anything.

I have not been idle. I have not been a scrounger. I have a tiny design business. I work as much as I can and now employ two people part time. I am an artist and designer and love my work when I can do it and I do it as much as I can. Just at the moment that isn’t very much. But I live in hope.

I don’t have any children. We sat down and thought about it. It seemed that to bring a child into a house where their mother could spend long periods unable to look after them was a bad thing to do. We made the choice some years ago and given how my health has been subsequently we were right. We made an adult choice and we live with that every day. It doesn’t mean it wasn’t and isn’t painful. I say 'we' but my marriage broke up after 23 years due in no small part to the effect of my illness. When we married I was 25 and the prognosis was that the illness would lessen and in at worst 7 years it would be gone. I'd grow out of it.

I am writing now because I feel awful, my hands ache the tears of weariness and anguish are running down my face. My next major birthday I am 54. I have not learned to scuba dive. I didn’t become a marine biologist. In some ways it would not be over dramatic to say this illness has ruined my life. Certainly it has ruled it, changed it, made it unpredictable, difficult, at times nearly unbearable.

I saw a child on the TV the other night, recently diagnosed with ME/CFS, he is lying there, another little grey shape in a bed (we all go that way) and I saw the desperation in his mother and recognised myself and my mother. The silent scream of horror I had at seeing it all happening again was from the depths of my being.

That the scream was silent is partly because I don’t have the strength to scream and partly because I have no words. It is not just me – the English Language has not got the words.

Reposted now because I’m supporting #meawarenesshour and the attempts to get the #millionsmissing heard. I had a bad flare which put me in hospital in Oct 2018 and I’m still housebound dealing with the consequences.

Originally Written September 2012. 

Updated 2022 - still housebound and ill after the 2018 flare but remaining hopeful. 

#meawarenesshour

[lisacatherwood]

Grieving for Loss of Life: The Untold ME/CFS

In silent darkened rooms where millions lie, the world turns unaware of profound loss of life. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is not just a disease it takes lives. While the stories that make the headlines often feature young, beautiful women whose promising lives are cut short, there is a vast ignored population of older sufferers whose lives have been equally devastated for much longer. Their stories too, deserve to be heard and acknowledged.

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

Ruth’s Story: A Lifetime Stolen

Ruth will turn 60 next year. As a runner and cyclist with dreams of becoming a marine biologist, her life was irrevocably altered at the age of 14. After contracting glandular fever, her future became decades of debilitating illness. For 45 years, Ruth has endured the relentless grip of ME/CFS, a fluctuating disease not only widely misunderstood but often dismissed as psychosomatic. Her journey through the healthcare system is marked by disbelief, misdiagnosis, and neglect. From being prescribed antidepressants to treatments like Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) that worsened her condition, Ruth's story is the reality of systemic failure of a system that millions of ME/CFS sufferers face.

In 2018, at the age of 54 Ruth's condition deteriorated to the point where she could no longer sit up or eat, or to tolerate light or sound. Hospitalized, she received no meaningful treatment or advice. Sent home, her plight continued in isolation, a common reality for many with ME/CFS who are forced to endure appalling symptoms alone, away from a medical profession that often gaslights and stigmatizes them.

The Contrast: Young Faces in the Media

The media gravitates understandably towards stories of young, beautiful women whose lives are suddenly and tragically halted by ME/CFS. The striking before-and-after images of vibrant dancers, skiers, and fashionistas transformed into small, grey shapes confined to darkened rooms evoke immediate sympathy and empathy. These narratives are powerful and poignant, and shed light on the severe impact of the disease.

However, this focus leaves out a significant part of the ME/CFS community: the older women and men who have battled this illness for decades, whose stories are equally heartbreaking but never told. They were once young, vibrant people too, with dreams and aspirations that were crushed by ME/CFS. Their lives should not be diminished in value by age.

A Collective Grief

Ruth is not alone. Her story is typical of the unseen majority who retire to darkened rooms. Most sufferers learn to avoid seeking medical help, having learned first that there is none and second that disbelief and cruelty are often the response to their suffering. Decades of terrifying symptoms are borne in apparent silence. The energy required to protest or even ask for help is something many sufferers do not have. The advent of the internet has provided a valuable platform for shared experiences and hedge treatments. The voices of the voiceless are now there to be read.

The loss experienced by those with ME/CFS is colossal. Not only do they lose their health, but they also lose the ability to participate in life’s joys and important milestones. Birthdays, weddings, and funerals pass without their presence, replaced by their daily struggle for survival. Families grieve for the lost potential of their loved ones. Alongside the loss of life of the carers who devote time, energy and resources sometimes for decades.

Ruth lost the children she decided not to have as she was not well enough to look after them. She lost her career in marine biology as she was not well enough to go to university. She lost friends, a husband, and even a sister who eventually said, "I believe you believe you are ill." This is a profound loss of a life.

The Scandal

This is not just a medical issue; it is a profound scandal. Benefits are often withheld, and those with ME/CFS are left to navigate their debilitating condition with little to no support. Their poverty causes further physical suffering.

Dr. Nancy Klimas, a renowned expert in the field, says: “There’s evidence that ME/CFS patients experience a level of disability equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis. The only difference: NO treatment for ME/CFS!” How much clearer could the need for recognition and action be made?

The Call for Justice

Forty-five years after Ruth became ill, and even after a global pandemic highlighted the long-term consequences of viral infections, the architects of neglectful policies are often unchallenged. Even when they wilfully ignore NICE guidelines. Meanwhile, lives continue to be lost in the shadows, as those affected by ME/CFS and now Long COVID endure their lives half-lived.

The parallels with other public health disasters are striking. Like the Horizon scandal, the contaminated blood scandal, and the Grenfell tragedy, the plight of ME/CFS sufferers is a humanitarian crisis that demands accountability.

Conclusion

As we grieve for the lifetimes lost to ME/CFS, action must be taken. It’s time to bring this tragedy into the light, to demand that the medical community, society, and policymakers address the suffering of millions. Only then can we begin to heal the profound wounds inflicted by decades of disbelief and neglect. The loss of life caused by ME/CFS is a tragedy that must no longer be ignored.

Published in The Canary UK August 2024

Grieving for loss of life: the untold ME/CFS - from silent, darkened rooms

Ruth has lived with ME/CFS for 45 years. While the media focuses on the tragedy for younger people, her story is just as devastating

[lisacatherwood]

Sisters

In the middle light and the gathering dust there was another one. Through the weary fears and the aches and pains it sat. This one, was one too many, and her sister reached out to her as she saw the shine in her hand and heard the catch in her breath.

All day they had worked together, lifting and clearing up mess in the wake of the devastation - this needed done, It had all been put off for far too long.

There had been a visceral ripping as he tore away leaving pain and chaos and dread.

Strong families shaken to their core, unable to come to terms. Ripped apart by the actions of one man in peacetime.

In the void she had built again, a new life a new home. The days had started dark but lightened and strengthened as her brushes swept, sweet colour arrived with spring in the third year and she decided it was time.

He had left everything ever given to him. In his wake, hopes and books, faith and footwear, dreams and paraphernalia all lying together, the wreckage at the tideline of his final retreat.

As women do they had appointed a day, the mess needs addressed, so in the morning they rolled up their sleeves and rolled away the doors. The darkness rose and tumbled out towards them making her cry but together they began.

The sediment of a life lifted with care, gathered, dusted, placed for transit, put to rest. A rhythm developed, as women do, their hearts sang softly together as they shared a smile or a sigh as the order was made.

These were the things from the life of a man - saws and crowbars, a new chainsaw blade, lead battleships and kerplunk, laser sight, ladders, a yacht and some kites, socket set and a sander, the tools and toys of a boy and a man and everywhere were screws.

In every box and packet they found them, bright screws and nails, all new. A worthless horde, filling spaces, gathering dust. It became a thing, as they gathered and sorted, tiny shiny things, not pointless but useless without anchor or purpose.

The Sun was setting as they swept the last, and there it was, a loose screw in the detritus about to be swept into the bin. As she stood with it in her hand the sisters looked at each other, grimy, with cobwebs in their hair. Golden light shining into the farthest corners of the now neat and tidy space. There was a moment. One muttered about having a screw loose and the last of the darkness was banished as they laughed together, it wasn't even funny but the magic happened and it was over.

They locked the door and went together towards the light.

***

I wrote this for my sister in April 2018 because we had lived this day, she helped me through a terrible time with actions and words she was amazing and I was so grateful I didn’t have enough words I still don’t.

In October the same year I got out of hospital after a very bad ME Flare I was bed bound and very scared she resentfully made me food very late that day and when I asked what was wrong she screeched that it was ‘all about you again’ I tried to console to understand to apologise to explain. She said she was a terrible sister I said she wasn’t and I meant it. I was so unwell it was a living horror. She left. I didn’t see her again. She came in every six months but she was a bitter stranger. Strong armed into ‘attending’ by our Mum.

Nothing in my life ever hurt as much.

It’s 7 years on, I was bed bound for a few months and have been housebound since, struggling with this awful illness and I have seen her maybe 4 times a year. My beloved Sister who I saw every week and to whom lines of communication were always open, sharing all our lives in texts, books, music, tv - family news and stories has gone and I don’t know why. She shattered me and our family and had it continue for all of us through lockdown.

When I once asked, she doesn’t want to talk about it.

[lisacatherwood]

In tears, Anthony Bourdain is dead. Suicide they're saying. A wild torrent of a man, I read his book Kitchen Confidential when I was ill. I was recovering from meningitis and he was a breath of air in the darkness - full of passion and humour he brought a sense of adventure into my sick room. His energy and passion, his wit and cheek, and all those strange piratical souls who gravitate to the world he lived in. I still live in the dark static world for a lot of the time, I have had M.E. for almost 45 years and he became a talisman for me proof that the kind of energetic, passionate, intelligent life I long for does exist out there. I may not be able to live it, but if it exists, and in Anthony Bourdain it surely did, then there was always hope.

Today I feel like hope is gone. This dark shallow existence of mine is truly pointless. That hope, joy, creativity are really just tilting at windmills. Today I understand suicide more than ever.

Written 9 June 2018

[lisacatherwood]

I always say I didn't go to Art College therefore no one ever told me there was anything I couldn't do and that is true but strictly speaking my artistic career began when I was in Mrs Latchems class at school in Lisburn. I was 8 or 9, teacher was off, and we had a series of temps - one of whom was an artist called Lawson Burch.

He seemed to me to be a giant of a man and in a very buttoned up corner of buttoned up Northern Ireland he was the soul of Bohemia. He had shoulder length curly hair, my Mother offered to send him a ribbon for it, and twinkly eyes behind heavy silver glasses frames. He wore a jacket and jeans unheard of in a teacher, only rubbidubs wore jeans at all. He smelt of linseed oil and cigarette smoke and whiskey and was the kind of man I only ever heard about in books.

He was too bright and too large for our tiny neat classroom. At the teachers desk, he pulled the chair out from under the desk to the centre of the front of the room and placed it with a rattle spin and flourish in front of the class and sprawled. I was breathless, in my lifetime of experience teachers sat neatly with ankles crossed behind the teachers desk. There was complete silence. When he spoke it was a honey coloured growl.

He showed us post impressionists and explained about painting light, he got us to screw up our eyes and look again at the world, to feel the sensations of colour, to listen to the sound of shadows. He told us we were unique, that the marks we made on our pages were special because in the whole history of everything this was the first and only time they could be made. He told us we were finite but because we were stardust we were also infinite.

I remember his teaching often as I live and paint and create. I wish everyone could feel and understand the lessons he taught and could pass them on to children at the right moment in their lives.

My thoughts on the incomparable Irish Artist Lawson Burch.

[lisacatherwood]

#duet with @melodywritessongs This is powerful. 🥲 #jesuswasadragqueen #jesus #leastofthese #ally #allypastor #pastorsoftiktok #progressivec

[lisacatherwood]

Happy Spring, everyone! 🌸🌷🌼 As the world awakens from its winter slumber, it's time to embrace the beauty of nature and all the colors that come with it. And speaking of color, I am thrilled to announce that I have some new artwork for sale that perfectly captures the essence of the season. 🎨🖌️ From vibrant florals to playful abstracts, these pieces are sure to brighten up any room and bring a fresh energy into your life. So why not treat yourself or a loved one to a beautiful piece of art that will remind you of the joy and renewal of Spring all year round? Let's celebrate this season of growth and transformation together! 💐🌞 #SpringArt #NewArtworkForSale #ColorfulLife #InspirationalArt #Renewal #FreshStart #ArtForTheSoul https://www.instagram.com/p/Cp5dA-fofrD/?igshid=NGJjMDIxMWI=

[lisacatherwood]

[lisacatherwood]

Where’s Your Head At?, 2021 Work on Paper 14 x 22 cm Available through #artistsupportpledge DM me if you’d like more information about this piece. #artistsupportartists #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CeB791HDI1C/?igshid=NGJjMDIxMWI=

[lisacatherwood]

More #molskine madness. TFI Friday, back in the studio tomorrow and I’m feeling some turquoise and gold leaf. #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CdyypfiDZa5/?igshid=NGJjMDIxMWI=

[lisacatherwood]

In the rhythm of life the beat goes on. New work on the way at this joyous time, just making decisions and playing with colour palettes 🎨 I hope your spring brings you all the joy you deserve. Thanks to @walkitoffni for the photo, her visit to my workspace is always inspirational. #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CcuhlWsD1_x/?igshid=NGJjMDIxMWI=

[lisacatherwood]

She’s so shiny ornamenting the gate this morning. #ladybird https://www.instagram.com/p/CcnB6PejIqI/?igshid=NGJjMDIxMWI=

[lisacatherwood]

So sad. #ukraine https://www.instagram.com/p/CaYNRBgjBB6/?utm_medium=tumblr

[lisacatherwood]

Beauty Is In The Eye, 2020 Work on Paper 23 x 30.5 cm for sale as part of the Artist support pledge. #artistsupportingartists #artistsupportpledge #artforartists #pride #artforwalls #artforsalebyartist #artforsale @artistsupportpledge #artistssupportpledge #buyart #carandache #watercolour #affordableart #originalart #artwork #instaartist #makerssupportpledge #artcollector #instaart #lgbtq #loveislove #loveislife #artlovers #originalpainting https://www.instagram.com/p/CXM5S96IvxO/?utm_medium=tumblr

[lisacatherwood]

Happy Saturday all. Painting painting, new work in process. It’s always such a journey a new painting. #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CT-YyncIyK5/?utm_medium=tumblr

[lisacatherwood]

Happy Friday everyone. My paintings ‘Lady of the Vanir’, Raspberry Moon’ and ‘Volcanic Sunset’ are off on an adventure of their own. It’s a bit like sending your kids out into the world, wish them luck for me and if they are successful I won’t shut up about it 😁🎨🤞 Have a really great weekend and thanks for the messages and craic. #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CR87KtsD3yd/?utm_medium=tumblr

[lisacatherwood]

#wip, I love Saturdays for painting. Some working on my imagined flowers and some burning I’ll show you when it’s further on. How has your day been? #Instalove #art #artist #aert #ig #instagram #artistsupportpledge #artistsupportpledgeuk #creativeart #photooftheday #iphonex #iphoneography #iphone #iphonesia #instamood #webstagram #instagood #love #bestoftheday #igdaily #picoftheday #belfast #ireland #original #belfastart #artcurator #irishartistsoninstagram #artwork https://www.instagram.com/p/CQmO23Ah0dS/?utm_medium=tumblr