#mecfsartist

[lisacatherwood]

Me and M.E.

The Horror

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

I was 14 in 1980 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, forty years later. 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.

Every year or two Something happens which knocks me down into bed for months, sometimes years. After the initial sickness illness the convalescence is unending. I have described it as being like the worst flu and hangover you have ever had combined and lasting for months – the problem with this description is that I don’t think it really explains it, people don’t really remember what that level of awfulness feels like. The brain has a gift for not really storing the memory of physical symptoms – pain discomfort etc. We remember as an intellectual exercise not as a visceral experience. Even if you can vaguely put together a sensation of what that might be like it doesn’t really scratch the surface. (Try thinking of what a strawberry tastes like – really imagine it, hard as you can. Now eat a strawberry. See?)

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 particularly 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 website design business. I work as much as I can always from home and now employ two people part time. I am a self taught 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. The brain fog is ghastly and I feel so alone and isolated. 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.

I had a really bad flare which put me in hospital unable to walk in Oct 2018 and I’m still housebound/bedbound dealing with the consequences. Applied for disability benefit got a home visit and didn’t score a single point even after 40 years I am not believed. Too ill to fight for it and terrified about the future. My incredible Mum stepped in again to take care of me when this latest flare happened. I have no words to express my combined gratitude and shame for being this kind of endlessly needy daughter. l when, at this age I should be taking care of her.

Originally Written September 2012.

Header Artwork originally by me aged 15.

Added to in 2015 after my marriage broke up.

Updated July 2018 and again Feb 2020 for #MEAwarenesshour on Twitter every Wednesday share relevant content with the hashtag to help raise awareness.

Reposted July 2020 to send to @OxMEDiscovery

[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]

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

[terapiadehilos]

Today is M.E./C.F.S. awareness day. A while ago, @prillytee from the @chronicmarketplace asked the M.E./C.F.S. community what would we do if we were well tomorrow, and proposed we create a piece of art with out answer. Many artists have poured their hopes and wishes to create their answers in different mediums, which you can see in the video I shared in my stories and The Chronic Market has shared in their feed. This is mine.   Let me preface this by saying that I am one of the lucky ones. I can function, I can work, I can get out of home if I need to, I can lead what to outsiders may look like a normal, ordinary life.  And yet... Of all the things this illness has taken from me, the one I really wish I had back is the ability to be the mom my kids deserve to have. The mom that goes to all the functions. The mom that walks them to school. The mom that plays with them on the floor. The mom that can listen to a full recount of their day, even if it lasts forever. The mom that is there. What I miss is not who I was, but who I could have been for them were it not for ME-CFS. Mom guilt is overwhemingly real, and when dealing with a chronic illness even more so. It's the side effect I wish most away.  If tomorrow I was well, I would be the mom my kids deserve to have. And you, my fellow M.E./C.F.S. warriors? What would you do if tomorrow you were given back all the energy that chronic illness has taken away? #mecfsmom #mecfs #mecfsartist #mecfsawareness #mecfsawarenessday #chronicillness #chronicillnessandme #motherhood #spoonie #spooniemom #spoonieartist #ifiwaswell #momoftwo #embroidery #embroideryisart #embroideryhoop #hoop #bordado #fatigacrónica #diamundialdelafatigacrónica #encefalomielitismialgica #myalgicencephalomyelitis https://www.instagram.com/p/COx-utyLzb6/?igshid=1eeiigmejet5x

[lisacatherwood]

I do Designs for MEawarenesshour on Twitter using my art.