Today, we honor the millions of people around the world living in darkened rooms where sound and light and touch are beyond reach, where eating, bathing and standing have become impossible.

Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME), and, today, we take time to honor the 25 percent living with the most severe form of this disease, and remember those who have died from ME.

August 8th marks the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, which was started in 2013 by the 25% ME Group as a response to the death of Sophia Mirza from the UK. Sophia was accused of seeking attention, her family were accused of enabling her, and she was sent to a psychiatric facility where her health declined rapidly. Sophia died of severe ME in 2005 at the age of 32. The coroner’s report showed that Sophia had massive spinal cord inflammation at the time of her death, and that she died as a result of acute renal failure arising from the effects of ME.

Today, August 8th, is Sophia’s birthday.

Most recently, the community has rallied around 17-year-old Jehan “Gigi” from the UK who was hospitalized with severe ME, and threatened with being sectioned  – forced institutionalization – against her will to a psychiatric ward for her inability to eat, speak or walk due to severe ME. Gigi’s family was told to stop “colluding” with their daughter.

In the hospital, Gigi was put on an open ward, the doctor told her to sit up for long periods of time and remove her eye mask for dark glasses, and she was continually pressured to undergo physiotherapy – all conditions that can harm someone with severe ME whose body cannot tolerate such stimulus or forced exertion. Gigi lost the ability to speak or move independently during her hospital stay, which her family suspects is from the staff’s insufficient knowledge of the care required for people with severe ME.

The ME community is relieved to hear that Gigi recently returned home to her family where they can care for her in a safe and loving environment.

To honor people with severe ME today, we asked the community to submit their stories of what it is like to live with severe ME. Forty-five people sent in their stories. Below are some excerpts that broke our hearts, and have galvanized us in our fight to educate the world about the etiology of ME. Read all the stories below.

Finding Hope and Community

There is immense courage, humanity, humor and strength in the stories below, but we also grieve at the immense amount of suffering and loss that our community experiences from decades of neglect and stigma. We find hope in the incredible work that our researchers, clinicians, patient advocates, allies and organizations are doing to search for treatments to alleviate the pain, and advocate for this disease.

We are heartened by the ongoing, robust research, and the efforts of our entire community to educate medical providers about ME. (Get involved in this effort by joining our Postcards to Doctors campaign to send educate doctors across the U.S.)

We are also building a stronger community to find solace, friendship and support in our common experiences. We have dozens of groups, including our Living with ME Support Group, Seniors group, Caregivers Group, People of Color group, Christian group, LGBTQ group, Severe ME group, Men’s Forum – the list goes on. Find them all here.

If you find yourself needing crisis support at this time, please reach out to someone to talk to here.

NOTE: If you are looking for resources on living with, or caring for, those with severe ME you can find some here and here.

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Living with Severe ME

I have had ME/CFS for 28 years. I was 22 when I was diagnosed and with each passing year my condition has worsened. Since turning 40 and having my second child, I have been bed-bound / housebound. Every year since then has been worse than the last. I just turned 50 years old, and I worry about the future because I am so weak that I cannot walk from the living room into the kitchen without major difficulty. Last year I bought a mobility scooter, which is a necessity, because I cannot stand up for very long or walk very far. I finally won my disability case a year-and-a-half ago, but stopped working part time as a therapist 5 years before that due to severe exhaustion. It goes without saying that at this level of disability I have had to give up almost all of my hobbies. I cannot do anything physical. No more horseback riding, bike riding, swimming, hiking, dancing, or even taking short walks. Worst of all, I cannot be the mom I want to be for my kids. This disease doesn’t kill you, but it robs you of your life.

 

 

 

Inside I’m dancing.  Inside my mind, I imagine my body dips & flows with beats & rhythms. 90s rnb tunes play on the tv,  so many old favourites, classics, still love; Memories flash & linger,  Good times with friends, Jjs. Pink Coconut. Park End. Institutions of my youth. Bodies weaving, drinks flowing, boys flirting.  My body swings & moves, glides on the tips of drum beats,  I love to dance. Since a child. It fills me with a deep joy, energy rushes & tingles, hairs stand.  it feels sacred. Joyous. Healing. Connected.  & as my body lies here exhausted, depleted, aching, held hostage by illness;  I remember, she remembers,  & inside,  I dance.

 

 

Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement. She suffered with horrific pain but never lost her big beautiful smile. She died just 10 days after her 21st birthday, following an inquest her official cause of death was M.E.

 

A life with severe ME is like a non-existence. I’m alive, yet not really living. My life is on hold – I’m in limbo. I’m trapped inside a damaged body. I’m isolated, alone in my own world. It feels like there is a war raging within me. A battle I cannot control or win. I feel like I’m hanging precariously off a cliff, desperately holding on by my fingertips, knowing that at any moment I could fall into the abyss. I’m in a constant state of confusion – in a daze. It’s like I’m looking at my life through frosted glass. My senses are heightened, yet oddly I feel disconnected from reality. I feel hungover and drunk at the same time. I feel like I haven’t slept for a week and I’ve just run a marathon. Everything hurts, it even hurts to think. I feel like I no longer belong to the world I once knew so well, but not just that, it feels like that world is now my enemy. ME is relentless and unforgiving. It’s a devastating illness that steals lives. But the most frustrating part about this debilitating condition is not being believed, and not having a voice. Please help amplify our voices, so the world can hear our cries.

 

 

There is something so tragic about a life, once brimming with vitality and passion which – whether overnight or after a period of time – vanishes into the abyss like it never existed. This is life for us – the living dead -we are the real-time zombies of the 21st century. We breathe the stale air of our homes; are confined to the walls of our bedrooms – closing in on us each day. We are familiar with ridicule, have grown accustomed to being forgotten by those who claimed to care; we have fought to be heard, tried so many a time to feel like ourselves again. To ponder the past brings melancholy, to dream of a future brings despair. The only time that matters for us is this day. This hour. We struggle through the pain, we are often lost in the fog that was once our mind. To do anything requires EVERYTHING. We long for freedom from this state of captivity. But this day, this moment is ours for the taking. We live again like children with eyes wide open. We cherish those we love. We exploit every second to be grateful, to surrender to laughter. And even if we can’t speak or eat or open our eyes…we are still here. We are not zombies – we are the brave.

 

Yo ya he llegado al estado grave y no puedo con mi vida, estoy con depresión neurótica y pendiente de 2 intervenciones ( prótesis de rodilla y de cadera, ambas de la misma pierna) la verdad tengo miedo, sé que los dolores se agudizan, pero bueno, hay que seguir adelante.

 

 

 

 

 

My ME now keeps me mostly housebound. I live by myself and am finding it hard to prepare meals and feed myself. I stopped showering daily a long time ago as it uses up energy and now only manage to shower just once a week. I’m trying to accept that I’ll probably be unable to stay in my own home for much longer and need to start thinking about being in some sort of care place. I’m very scared of what the future holds for me. I’m 57 and previously worked in the NHS, a job that I really enjoyed, but had to retire early on ill health grounds in January 2017 due to the severity of my ME. I used to love swimming and would be at the pool 3 or 4 times a week. I now spend most of my day lying on the sofa and each night when I go to bed I hope and pray that, just maybe, tomorrow I’ll feel a bit better.

 

 

 

 

I was an active, healthy 20-something with a job I loved and a great social life. When I was 27, I woke up too sick to go to work one morning and never recovered. I tried to push through my symptoms; at first I could manage my job but all non-essential activities were stopped. A year later, work had to stop too. Three and a half years from waking up that morning, I’m now mostly housebound. I only leave the house for appointments and spend the majority of my time on the sofa or in bed, and I can’t go out without my husband or my mum to support me. I use a wheelchair; I have four different hospital specialists; I take a cocktail of medication just to keep my functionality passable. I need help with showering; I can’t cook or clean, and I rely on my husband for everything. I’m only 30.

 

Full time only – Darkness, horror, pain, invisibility, loss, fear, anxiety, depression, tingling, fizzing, dizzy, head spins, just a tiny fraction of your daily life. Applicants need not apply, you will be randomly selected when you least expect it. Also needed – a wicked sense of humour and a Warrior mentality. Welcome to the tribe.

 

 

 

 

 

We are in this together yet alone in our struggle.

Patricia

 

 

Unless you have it, you can’t understand it. Every day the world around me goes on; I hear it through my windows, I see it out the car door when I am being taken to medical appointments, I see it on tv and on the internet. I dont feel a part of that world. I live within the walls of my house and often the walls of my bedroom every day. I am punished physically and mentally by my illness when I try and do normal every day things. Its a world of isolation and abuse. The abuse comes from the lack of recognition that this is a serious illness that deserves funding for research. The abuse comes from the lack of knowledge and subsequent dangerous advice from medical professionals. It is a living nightmare with no cure.

Tammy

 

 

I hate M.E. It has ruined my life. It has taken away everything from me and there’s nothing I can do about it. I have spent the last 5 years bedbound/housebound and unable to be independent. I feel like I’ve tried every supplement every type of alternative medicine (as no western medicine is available for M.E). I’ve done all I could to get better and nothing works. I feel hopeless and everyday wish for it all to end, everyday I scream and cry and ask “why me”. I was 25 when I first got sick and now I have missed out of the rest of my 20’s. I am all alone no friends, my siblings don’t talk to me anymore. I see my parent once a week but other than that I am completely isolated. I will never be one of these inspirational disabled people who are positive and hopeful. It has changed me, not just the illness but the way people treat you with this illness, the lack of understand and help offered to those is incredibly disheartening

Carly

 

At my worst, I was fully bedbound, i,e, 23 hours a day. I only had enough energy to make it to the bathroom exactly twice a day. This meant that I had to limit my fluid (water) intake and plan my bathroom “trips” carefully. Too many times, I found myself in tears because I forgot to do something in my previous “trip”.

Anonymous

 

I have had ME for decades now, though it has only became severe a few years ago. I find everything is difficult once you’re severely sick. Most times when I’ve telephoned the doctors to find there are no pre-bookable appointments I am told to, “ring at 8am tomorrow or just pop down to the surgery by 8”. They’re just not aware that severely ill people aren’t awake at 8am. And that severely ill people haven’t ‘popped’ anywhere in years.

It’s similarly difficult to deal with other areas of life. The local authority’s social services team, the adaptations team serving the local authority’s council stock, ATOS Healthcare and the DWP: all of these people have had me appeal in writing for something that I needed and was entitled to. The only thing I seem to have done for the last 2 years with my functional hours is appeal decisions that have gone against me albeit using dictation software.

Some of the 25% have very little support. It’s barely believable but because of my difficulties with Social Services I currently only have minimal self funded care, a cleaner and a family member who drive 35 miles each way to see me and cook and do further cleaning for me.

Mostly I just barely get by. I live on snack food like protein bars most of the time as ME sufferers are advised Paleo-Keto adherence (though not by the NHS who still seem far behind the researchers). I can’t sit up for long enough in my powerchair I use, to get a meal assembled or microwaved & on a plate with some cutlery! My blood pressure is going too low a lot of the time. That or the ocular migraines are making me nauseous or the postural orthostatic tachycardia syndrome is making me light headed even though my BP measures tolerably. And I haven’t even got to the pain of the ME, the extreme clinical fatigue and my co-morbid fibromyalgia.

Many people do not even know that ME can become this severe. They don’t appreciate that fighting the condition makes it worse either. I’ve had all sorts of duff advice from lay persons who tell me I just need to “keep at it”. Yet the government, keep expecting me to find some tiny amount of energy to fight all their covert austerity measures that are enforced through the means of targets and local authority budget scares.

Basically I’ve become dependent on people to do the right thing and help me. Though sometimes I find I have to fight from my bed for that help. I do know that whilst I’m only 40years of age I might not have many years left. If I continue to deteriorate and to struggle with the gastroparesis that already affects me regularly I could find myself on a feeding tube and at high risk of heart failure.

I don’t know what everyone with ME wants but I don’t believe that it’s sympathy. I know that sympathy won’t get research moving further or get the government to rein ATOS in with their attempts to make severe ME patients tolerate low rate PIP or face the appeal system. I’d like people to realise just how severe ME can be, how it leaves me with no quality of life and how limited research means I question how realistic it is for someone like me to have hope that any effective treatment will come in time.

I’ve never been married or had a long term partner, nor children. I’ve not been able to complete a degree, even as a mature student going a through part-time distance learning option. I’ve not travelled apart from some 1 or 2 week holidays, mostly as a child and a few city breaks my mum took me on when I was less symptomatic than I am now. I’ve no real friends because it turns out all I had was fair weather acquaintances who don’t like to have to deal with the sickly looking sight I am now (also those who used to beat me up may have some guilt issues about whether it’s contributed to my poor health – my opinion: it has, it did, I am angry). Yet I continue to try whilst knowing that like many other severe ME sufferers it may come to a time when I want to pull the plug on my existence.

So please, make yourself aware, consider donating to a charity that funds research and avoid making ill informed comments or using those placating clichés as much as you possibly can. No-one deserves to live on and on with the equivalent of end stage AIDS. Severe ME is that bad, it’s not a choice, nor psychiatric. ME is a neuro-immune, multi-system failure of the body. There’s only a 5% recovery rate for ME. The likelihood of being someone who recovers decreases the more severe your ME becomes. Basically severe ME is nearly always non-recoverable; unless perhaps researchers find effective treatments. It is that serious.

Anonymous

 

 

I have had M.E for 9 years. I had a major flare up in 2015 and have been getting progressively worse since. 2019 has become the year my disease took my freedom. I am now housebound. My social life is the family I live with and my housekeeper who comes once a week to cook and clean. My 11 year old daughter helps with tasks when home from school and I feel guilty my illness is taking her childhood as well as my life. I am only 30 and have hope that M.E may be understood and maybe even treatable in my life time.

Amy

 

 

MUERTA EN VIDA. SIN AYUDAS NI PENSION NI ILUSION. SUMIDA EN UNA PROFUNDA DESESPERACION ENTRE LAS 4 PAREDES DE MI TRISTE HABITACION. ODIO MI VIDA LLENA DE DESASOSIEGO ENFERMEDAD Y DESMOTIVACION. NECESITAMOS UNA SOLUCION A NUESTRO CALVARIO SIN APARENTE RAZON.

 

 

 

 

 

 

 

Having been diagnosed for over 10 years, my symptoms have gotten progressively worse year on year. February of this year saw me reach a new low. I have mostly become bed bound now.

I can not get to the bathroom without using my walking stick. And I am confined to pretty much living in the spare bedroom as upstairs is our only toilet. I fatigue after the smallest activity very quickly. I get out only once or twice a month, in a wheelchair and never on my own. All but one friend have abandoned me, even one who has ME herself but is much more able. How can someone not feel sadly bemused to be so misunderstood from someone suffering the same? I feel like I am in solitary confinement.

All the things I loved in life are out of my reach – teaching primary school, going for a walk with my husband and dog, going swimming, going to London for day trips, belly dancing, gardening, cooking and baking, being sociable. I would even love if I could clean my home, and I hate cleaning. The worse has been as each year has gone by, my Christmas celebrations have lessened to the extent of last Christmas I couldn’t even manage to get any decorations out. That was incredibly depressing.

The brain fog and easy mental exhaustion is now taking away my love of crochet as I can’t manage to read and understand the patterns like I used to. I have always had a love of learning but brain fog makes that out of reach too.

I could go on with more difficulties that I suffer being in bed all day, every day but instead I try to focus on the silver linings. I recently realised I was going through the cycle of grief and that has helped to try to face the sunshine of my life. Most importantly is my amazing husband, Anthony. He accepted the ME straight away and has done everything in his power to make my life as best as it could be and never questioned my fatigue. Consequently, my room is filled with anything to make me as happy as possible – my favourite photos and pictures, plants, flowers, a kettle and tea things, cute cuddly toys, books, tv with access to various channels, yarn when I can manage small crochet projects. My son is equally supportive whether he’s home or away at uni, when he will make sure he keeps in touch by messages or video.

How long this will last? Will I improve? Will I get worse? I try not to dwell on these questions but my life seems pointless and there are no answers out there as yet to this awful illness. Hope seems to be all there is to hold on to and I know that I am luck enough to be able to do it with love from my husband, my son Ethan and my fantastic friend, Kay, who never abandoned me.

LaurieAnn

 

 

Severe ME has almost made me forget about the dancer in me.

Former professional ballet dancer.

 

 

 

It’s a bit of a long story. During secondary school I was never good in the mornings. My mother was from time to time being reminded that my time keeping wasnt exceptional so to speak but I was doing ok & playing plenty of sport. In college I found it difficult especially with travelling home & working or playing at the weekend & really feeling like the batteries werent recharging. I first started collapsing when I was 15 but it was rare enough until uni. In first year in I had a bad collapse. I went to a neurologist who said I’d a slight touch of epilepsy & started me on medicine (bad idea). Over time my collapses began to increase & with that the medicine increased. Wind on 10 years & I was in a very bad way. Essentially I was like rip van winkle. I’d sleep for 20 hours get up for an hour then sleep again for days on end. Finally I changed neurologist & he brought me in for a number of tests. The first was he hooked me up with iv steroids & said I’d feel brand new instantly. I slept through the whole thing even when they hit a vein & left a bit of a mess. It was some sight when I woke up. Good fun. Between that & a sleep study that they got plenty to study the specialist said epilepsy wasnt the issue but suspected it was chronic fatigue. He referred me to a specialist & that was flicking the switch for me. According to the specialist I was the worst case hes ever seen (I dont do things in half measures). He said I’d severe debilitating chronic fatigue syndrome & put me on a course of action. I’d been back playing football for a year or two (having been a half decent goalkeeper when I was fit before) but I was making so many mistakes & sleeping before & after training/games. I stopped the epilepsy medicine & that made a huge difference. I was on modafainil/profigil (brilliant) and initially I was tested by trying an anti depressant fo rule out depression (specialist said that majority of cases that appear are related to depression), that medicine didnt work, so we pressed on with something manageable. Slow & steady wins the race as they say so I went back to basics, diet, sleep, exercise all built up from scratch. It made a big difference. Within 2 years I went back to college to build myself up for work. It wasnt plain sailing (not the greatest accommodations for exams) but it took 5 years to do a 4 year course (I was v sick during one set of exams so deferred them, then picked up a bug during the resits, bad luck). Light at the end of the tunnel, got my degree & I’m working for a very understanding company who let me work from home & set my own hours. Theres no accommodations for people with chronic fatigue in Ireland so I was lucky that they understood the hours I work I’ll put some serious work in & give more productivity than others in that time. But it will be in bursts & with need of a few extra breaks. The job gets done & done well & I may have bad days during the week but I’ll make up for it. It’s a nasty illness & a pain in the arse, and very easy to get down over but when you start moving in the right direction never lose sight of where you came from. A bit like cycling up a hill really slowly & having to walk a bit. You can beat yourself up a bit but if you look back from time to time you’ll realise how far you’ve actually come. I used to sleep on the stairs or the floor because I hadnt the energy to get up the next step. I couldn’t walk down the road without having to sit down. My bad days now would be dream days back then. The most important thing is getting a handle on the issue & working hard then to get back on the right track.

Eoin

 

 

 

“I have forgotten your love, yet I seem to glimpse you in every window.” Pablo Neruda

Life with severe ME/CFS

 

 

 

 

 

CROWSKIN

Slowly, I come to.

First fingers. Then arms, legs and toes.

From somewhere a torso appears, topped by a head.

The pain takes a little longer to arrive. But when it does
the body is gathered in a cocoon of ringing muscles and
tightening skin.

Eyelids flicker. Hands reach for water to wet a dry mouth.

The sun continues to rise.

moth trap
I beat my wings
into the void

Andy McLellan (published in Bleached Butterfly magazine, June 2019)

 

 

 

I became ill on April 15, 2017. I had to quit my job, but was able to maintain a reasonably active life. In 2019, though, my health has consistently deteriorated, in spite of my efforts to protect and maintain it. I have been bedridden for the past three weeks. I was a nurse before becoming ill. Will I now be the one who needs a nurse? How far will my health decline? Will I become completely unable to care for myself? Will I become unable to eat, to speak, to write down my thoughts as I have done here? How far into the darkness will I descend? Where does this end?

 

 

 

It isnt enough that I lie here motionlessly. I also must maintain this state of motionlessness with little to no effort.

Thane

 

I first became ill at age 21. The diagnosis at that time was “fever of undetermined origin”, then CFS, then CFIDS, then ME. I am 74. I am housebound for the most part. Still doctors and the general public have not heard of ME. So sad to have been on the sidelines all these years watching others ‘live’ in the world.

Sonia

 

Highland Council are bullying us into forcing me to go to school when I have severe ME. They are taking my mum to children panel and Sheriff. Social worker told me that he didn’t care if I didn’t learn anything at school and slept through it as long as I was marked present. I am too ill to go to school and my Mum has spent a year proving I am ill but reporter for children panel refuses to drop the case. Please wish us luck at the court case.

Anonymous

 

I’m 19, and I’ve had ME for roughly 17 years. I have no memories where I’m not in pain. But for my entire childhood, my illness was denied. I was told by teachers, family, doctors, and psychiatrists that I was not in pain. Torturously, I was forced to exercise and resist rest, until I lost the ability to walk at age 15. All the overexertion damage had accumulated and hit me in one crash. I became bedbound, horizontal for 23 hours per day. I was taken a little more seriously by doctors now, despite my pain being at the same level as it had been for years. I suggested that I had ME, and doctors shrugged and said maybe, but failed to diagnose me, because my symptoms ‘might’ be caused by depression. I am still not receiving any actual treatments. 4 years later, I’m in the same situation. I have severe constant pain, and 50 regular symptoms. Some of them are quite scary, including paralysis, myoclonic/sensory seizures, vomiting, bleeding, memory loss, episodes of screaming pain with vision/hearing loss, muscle failure, tachycardia (up to 200bpm), light/sound intolerance, and extreme intolerance to being upright.

 

 

 

 

13 años con síntomas, 5 años sin vida, 2 años en Severo con parálisis constantes y sin atención médica ya que no creen en esta enfermedad. Necesitamos más investigación y ayudas sociales. No hay profesionales preparados en España para atendernos. Echo de menos mi trabajo, echo de menos mi independencia, echo de menos dedicarle tiempo a mi hija y no caer agotada y en parálisis por el sobre esfuerzo que una mínima actividad me causa. Necesitamos ayuda. Millions Missing.

Goliath

Is there justice somewhere in your agony?
If so, it must play out on a much vaster scale
Than my heart can encompass.

This is not a child’s game you are engaged in.
(Some mistake must have been made.)
Your opponent should have long ago been called for cheating.
Had there been a rule against it.
Had there been a referee.

There are no trophies given out for your kind of courage,
No reporter has been present
To record your days and nights of effort
Against this dark cloud
You are nameless, faceless to the world.

But I want someone to know
How many times you have overcome a beating,
Stumbled on, soul-wounded,
Asking no handicap for age or inexperience,
Giving your all to a game you never asked to play.

I want someone to know
How you faced the fully armored foe
With nothing but your hands to shield yourself,
And no replacements in the wings.
Even David had a slingshot.

Lynn, written about her son who developed severe ME when he was 12

 

The Spring Aspen

I watch the window-framed pictures
of the Spring Aspen tree,
standing still.

Still standing.

Newly formed leaves
busy,
humming like a bee hive
suspended in the wind.

Behold!
Lime green diamonds
sparkling in the light,
quaking sunshine.

A moving prayer
of gratitude,
play-fully dancing
praise be to Delight,
in you, with you,
Now.

Erica

 

I feel old before my time. Have had this for 28 years, i am tired of being in pain and so tired. I want to sleep all day, cant sleep at night. You dont just get over it, you have to live with it EVERY DAY.

Beth

 

One day I woke up to get ready for work and I was so exhausted and In so much pain that I actually couldn’t move my legs, I couldn’t stand up, i tried to pull myself up but my legs couldn’t hold me, I fell down. I was in so much pain that I couldn’t feel my legs anymore. This is what happens when you try and “be normal” with M.E. I had just picked up a few extra shifts that week.

Maxine

 

Severe ME is…

Days and nights alone in bed.

Curtains closed, house quiet.

Breathless, heart racing.

Body pulsing, trembling, shaking and aching.

Pain stabbing, shooting, and radiating.

Skin tingling and itching. Limbs going numb.

Insides turning and burning, digestion exhausting.

Sounds hurting, light draining, so disabling.

Conversation nonsensical. Memory fading.

My experience ignored and misunderstood.

Neglected by those who are meant to do good.

Physically weak and feeling awful.

Despite all this, still chronically hopeful.

 

 

Question

“But what do you do all day?”
“I am sick.”
“Yes. But what do you DO all day?”
In my cotton woolly brain I answer:
I fall down, I spread my liquid self out on the floor
until I can pull myself up by pressing into the seat of a chair
I doze for England, I curl up like a cat and get drenched in sunbeams
I swim in unworldly pools under my duvet
I gaze at artex-studded skies until my eyeballs gently melt
I hibernate for whole months in one day
I shut out the noise-crazy brightly obnoxious world
climb up to the attic of my imagination
daydream there and never tidy up
leave shiny trails of shredded self between bed and bathroom
and sink below everything there is to mine for treasure darkly
“Nothing,” I say.

Keren

 

Myalgic Encephalomyelitis
V. Hippocratic Oath

The darkness is my shelter,
It shields me from the harm of light,
The scorching, burning, pain
Is relieved only by the night.

My spine is like an iron rod,
Full of spasms and pain,
Muscles like barbed wire,
So weak and quick to fail.

My Hypothalamic-pituitary axis is utterly disrupted
By Myalgic Encephalomyelitis,
Still a mystery to doctors.

M.E is a Neurological disease,
Affecting cellular mitochondria,
Brain-stem, spine and muscles,
It is not feigned hypochondria.

It is also systemic,
And occurs in pandemics,
What we need is a polemic
Shift, in the view of medics.

Yet worse than all this suffering,
Is the disbelief I must endure,
The constant accusations,
And the fact there is no cure.

I am told that I “play dead”,
And that “it’s all in my head”,
And “I can if I try”,
And “perhaps I’m in denial”.

I wish that they could see,
Through the eyes of M.E.

They only wish they could lie in bed,
Though my life is of the waking dead.

Miriam

 

I’m 13 years old.
I’ve been Ill for 2 years , bedbound .
Disbelieving professionals destroyed me.
I suffer daily with extreme pain head, spine and all joints .
I suffer reflux and stomach issues. Racing heart just to sit up .I can do little for myself and feel exhausted all of the time even after sleep.
Some days I’m to exhausted to talk or eat . ME is not a life it’s an existence, I want my life back so I can live it and do all the fun things I used to do.
I would also very much like not to be judged for being so ill and to be believed
I hate ME and what it has stolen from me, I want to be well .

Elspeth

 

Abrí mis ojos, y a penas sentía mi despertar,
era muy temprano para mí, pero muy tarde en realidad.

Ya casi a la media hora, aún no era capaz de moverme,
el sonido hacía de mis oídos, unas partes muy presentes.

Pero esto no era suficiente, pues mi corazón tampoco ya palpitaba lentamente.

Mis manos parecían pesar,
y mis piernas no parecían estar.

Ya otra vez casi me dormía,
pero ese ruido me ensordecía.

Giré mi cabeza a ver que veía. dentro del cansancio que sentía,
pero era sólo el abanico de siempre, que sonaba más que cualquier día.

Al cabo de unas horas ,con ayuda ya había hecho varias cosas,
Aún en la cama, tal vez más cansada.

Comenzando el día cuando parecía que anochecía,
ya es muy tarde, y es hora de dormir.
Tal vez mañana, mejor me pueda sentir.

 

I’ve been fighting ME and the government to recognize and help ME for more than 9 years now. My life is gone, my capabilities are gone, my friends are gone, my dreams are gone, my thirties are gone, even my dignity is gone. I’m watching my life passing by without being able to participate in it. This is living hell. Being a Iiving death. I am a surviver. Hope is the only thing left to hold on to. Praying for truth and justice to come out. Can you see and hear ME now? Hear my whole story.

 

 

This is how I now spend half my life, stuck in a dark bedroom. This isn’t living. This is waiting, in pain… until things get better one day. A day when there is finally proper biomedical treatment. Until then I wait.

 

 

 

 

 

 

 

 

I’m 33 years old. I’ve had M.E for 10 years approximately. I was diagnosed with M.E. 6 years ago, but due to a clerical error i wasn’t told until 2018. Last May I suffered a severe relapse leaving me bedbound for 12 weeks. I am still virtually housebound and use a wheelchair.

Due to inappropriate housing, I am still mostly bedbound as my house is too small for my wheelchair. I had to fight more than a year and go through appeals to recieve correct benefit support, the assessor wrote I could walk, despite being in a wheelchair the entire assessment.

My children do not live with me. I cannot work. I lost everything. And when my local M.E service finally assessed me, they said there was nothing they could do, as already bedbound, they could only recommend staggered activity and rest for M.E. sufferers, but I already “Rest” 20 hours a day.

I am 33 years old. I have M.E. my life stopped at 23, and all I can do is wait for it to end.

Rebecca

 

Taylor’s Story
Taylor was a very fit, energetic and vibrant 20yo young woman when she set off alone for an extended trip backpacking around the world. After 14 months away she became very ill while trecking in the South American Andes and was forced to come home to recuperate. Nearly a year of extensive testing and continued deterioration found no underlying disease and she was diagnosed with ME/CFS. We were told there was no treatment, and rest was the best course of action.
I became a full time carer to support Taylor through this particularly stressful period where each day brought a new symptom or pain and her body was continuing to get weaker. Over time, daily one hour walks became shorter to the point where they were impossible. Then it became half-hour wheelchair outings until the pain became unbearable and she was forced to remain at home, only leaving the house for medical appointments. These too became impossible because she was so weak that the 15 min drive to the clinic left her unable to speak or communicate in any way with the doctor. Recovery from the “crash” caused by these outings took weeks and she never really returned to the same level afterwards.
Taylor became bedbound nearly 2 years ago and her world became much smaller. Her only source of social contact is limited use of social media for about an hour or two a day. Face to face contact has become impossible because of the amount of energy expended, friends are not able to visit, phone conversations are impossible and we now communicate with texts instead of personal contact. Noise and light are constant enemies and her door is always shut. Taylor now rarely leaves her room, and only if there is no-one else in the house. She often crawls on the floor to go the bathroom or to get a little exercise. Showering is limited to once a week if she can manage it – once a fortnight if she can’t. She lies on the floor of the shower because it takes so much precious energy to stand or sit. If we are lucky we get together with Taylor for about an hour each 3-4 weeks to have a cuddle and a face to face chat because any more regular contact sends her into a crash.
As a patient or carer it is very difficult to find reliable information about ME/CFS. Doctors are largely unaware of the condition, and are unable to spend the time necessary to perform research so they are of little help in providing advice as would happen with other medical conditions. Specialists are non-existent. Unfortunately the internet is full of uninformed and out of date information.
Taylor has found support and hope in the ME/CFS websites and facebook groups where she connects with others in a similar situation. There are possibly 3,000 Australians with severe ME/CFS like Taylor who are forced to hide away from the world due to this horrible illness. The ME/CFS websites provide a lifeline to these people when the Health System and other Government Departments have abandoned them.

Trevor
Father, Carer and ME/CFS volunteer.

 

Dark. Physically stuck. The light I crave. Causes me to crash. The sounds you don’t hear. Hurt me to the bone. Each scrap of energy planned. The ability to move by day’s end, never guaranteed. Isolation. Most too scared to come near. Those that do struggle re-learning Slow and Low. Stop talking. Your superfluous words rob me. I Start talking a new language. Visual cues necessary. Primal. What Eye focus on grows. My spirit and soul soar. The truth is helping M.E. helps you.

 

 

 

 

 

 

My name is Jackie, I’m 19 years old, and I have severe to very severe ME, along with literally dozens of other diseases and chronic conditions (such as dysautonomia, chronic migraines, IBS, neuropathy and paresthesia, chronic infections from my immune dysfunction, asthma, curvature of the spine, chronic pain syndrome, etc). Although I’ve had some health issues from a much younger age, I’ve had ME and most of my other acquired illnesses since shortly after my 16th birthday. For whatever reason, my particular case has been quite rapidly progressive so I’ve went from mild/moderate to severe/very severe within a couple years, and I continue to worsen (not being taken seriously by almost all healthcare professionals and therefore having extremely limited access to medical treatment certainly doesn’t help). I’m also being investigated for some other conditions.

Some of the most debilitating symptoms that I deal with on a daily basis are constant severe pain of dozens of forms, muscle spasticity, neurological and cognitive dysfunction, immune dysfunction, fatigue which is sometimes so bad that it literally immobilizes or paralyzes me, PEM, weakness, dizziness and balance/equilibrium issues, lack of coordination and motor skills, sleep dysfunction (sleep rhythm dysfunction, chronic insomnia, chronic nightmares, chronic sleep paralysis, etc), bladder dysfunction (mostly from my muscle spasticity, like is often seen in MS patients), orthostatic intolerance (even sitting up is often too much work for me), tremors, sensory sensitivity/intolerance, digestive dysfunction, heart problems, breathing problems, temperature regulation problems and temperature perception problems, temperature intolerance, tinnitus, and sinus/respiratory/ear/throat symptoms from my chronic infections. However I manage literally hundreds on a regular basis!

Due to all of these symptoms, I’ve been housebound and about 85% bedbound on a “good” day for so long now–close to a year, I think (and I was mostly housebound and mostly bedbound for a very long time prior to that). I rely on my mom for just about everything; I’m unable to walk for more than a few steps without help (on the very rare occasions that I am able to leave the house, I require my wheelchair), can’t cook any meals for myself, can’t take my weekly shower without my shower chair and my mom always helping me bathe, etc. I can’t even read a book or go for a walk, nevermind do something like go to college, have a job, or have a social life. Maybe it’s actually a blessing in disguise that I don’t go out in public and talk to people anymore, because I know I sound like such an airhead whenever I speak (I constantly stutter, slur, mispronounce, completely forget what I’m saying repeatedly, can’t think of the right words, etc), especially in comparison to how smart and academic I used to be. This isn’t exactly where I thought I’d be at age 19! But I try my best to be thankful for what I do still have, for however long I have it for. One of the few positives about being this ill is that it’s taught me to really appreciate the good things in life (even when they’re kinda miniscule in comparison to the negatives). The good things don’t necessarily make the crappy parts of my life any less crappy, but taking time to appreciate them has offered me a small glimmer of inner peace. My mom, niece, nephew, and cats always know how to make me smile 🙂 I’ve also been really appreciating things like nature, music, and TV/films when I am able to tolerate the physical and mental stimulation.

However I should be provided with more than just my own self sustained inner peace and the support of my family to get me through my diseases. I, along with all the other ME patients out there, need and deserve proper recognition, treatment, and health equality. It is just not right to be treated so poorly and to be suffering so severely. We will never stop mourning the people we once were and the people we could have been before ME robbed us. And of course, in the most serious cases, sometimes people with severe ME die because of it. Yet we still are not taken seriously, not given proper funding and proper treatment, and looked down upon and mocked within the medical community. How many more of us have to die?

I’d like to take a moment to thank ME Action for providing us with this platform to share our stories, and I’d like to thank everyone who took the time to read this. This is not my full story of ME or even close to it, but the cognitive dysfunction, pain, and fatigue makes it very hard to write (I’ve just passed out by accident because that’s how exhausting this is for me lol, now it’s past the deadline and I’m not sure this will be accepted). I’d also like to take a quick moment to apologize for how jumbled and confusing my wording may be at certain times. I did my best, but speaking both in real life and online is very difficult and taxing on me. Thank you so much and I’m sending lots of healing energy to you all!

 

 

So for the last 5 years my daughter has been bed bound 80% of the time with zero support for the last two years from ANY doctor. We have struggled every step of the way to get financial support as I had to go part time at my job to support my daughter. There are no doctors that seem to specialise in ME and this has impacted greatly on her mental health. This illness without a doubt is life changing and for sufferers like my daughter there is little hope. She has zero friends, social life or any real quality of life. As a mum it breaks my heart that I can’t make her better. Thank you for listening. Good luck

Anonymous