Laura Hillenbrand is an author with ME/CFS. Her essay, "A Sudden Illness," in The New Yorker won the national magazine award for best essay in 2003. Please read and share this compelling account of the ME/CFS experience to help build awareness. The essay is available here: http://bit.ly/a-sudden-illness.
Toni Bernhard at the doctor's office
From the Psychology Today blog
A debilitating illness leaves me no-win choices in the doctor's office.
Published on April 10, 2011 by Toni Bernhard, J.D. in Turning Straw Into Gold
I've been sick since 2001 when I failed to recover from what appeared to be an acute viral infection. It has left me mostly house-bound, often bed-bound. In effect, I've had the flu without the fever for almost ten years: the aches and pains, the dazed sick feeling, the low grade headache, the severe fatigue. It cost me my career as a law professor; it cost me the ability to be active in the lives of my children and grandchildren.
Because I meet the Centers for Disease Control (CDC) case definition, I've been given the diagnosis, Chronic Fatigue Syndrome (CFS). Although there have been some promising developments (a possible connection to a retrovirus; the presence of unique proteins in the spinal fluid of CFS patients), as of this writing, there's no proven cause and no cure. This is not surprising, given that so little money is allocated for research into this debilitating illness. Why? One reason is the absurd name. As others have pointed out, calling it, "Chronic Fatigue Syndrome," is like calling Emphysema, "Chronic Cough Syndrome," or Alzheimer's, "Chronic Forgetfulness Syndrome."
My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V.
When doctors ask what's wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor's office.
Option #1: If I say, "I have Chronic Fatigue Syndrome," I'm likely to be discredited as a witness to my own condition. I've had doctors tell me there's no such thing as Chronic Fatigue Syndrome. One doctor said: "Just drink some coffee."
Option #2: If I say, "I contracted a serious viral infection and never recovered," it goes down better, but by saying this, I'm undermining the effort to bring legitimacy to the illness. Legitimacy means research money. By avoiding the phrase, Chronic Fatigue Syndrome, I'm also undervaluing the lifelong work of many doctors, including Nancy Klimas, Dr. Anthony Komaroff of Harvard Medical School, Dr. Charles Lapp of the Hunter-Hopkins Center, and Dr. José Montoya of Stanford University School of Medicine, all of whom have dedicated their careers to CFS research and patient care.
A few weeks ago, I had an appointment with a doctor regarding something unrelated to my illness. The New Patient Form asked, "Are you in good health?" I checked "no." Next question: "If you checked ‘no,' please explain." How many times have I faced "please explain" on a medical form and had to choose between those two unsatisfactory options? I've lost count. I needed the best care I could get from this doctor so, playing it safe, I reluctantly took option #2 and wrote, "Contracted a serious viral infection in 2001 and never recovered."
On the back side of the form was a list of symptoms with instructions to put a check in the box next to any that applied. Looking down the list, I reached: "Fatigue." What's a person with CFS supposed to do with that choice? Most of the people I know say they're tired. But the fatigue of Chronic Fatigue Syndrome? The CFIDS Association of America calls it bone-crushing fatigue. I call it bone-crushing and sickly fatigue—that flu without the fever. Laura Hillenbrand, bestselling author of Seabiscuit and Unbroken, and a CFS sufferer herself, put it this way: "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."
Given no alternative but "Fatigue," I checked the box and moved on.
In the exam room, the doctor looked at my form and asked: "What's this viral infection you never recovered from?" Without using the phrase Chronic Fatigue Syndrome, I succinctly explained the different theories regarding the cause of my continued illness. He listened and then said: "What's the diagnosis?" I was cornered. "Chronic Fatigue Syndrome," I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we'd just met and said: "What have you come to see me about today?"
On March 3rd, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.
Millions of us share your dream, Dr. Montoya.
From The Telegraph, By Elizabeth Grice
10 Dec 2008
A succinct article on how ME/CFS manifests and changes lives in those who have very severe cases.
This is only the third telephone conversation Emily Collingridge has been strong enough to receive this year.
She can manage to hold the phone but it is painful against her ear and her mental processes are stretched to the limit to sustain a conversation. Either her brain is racing far too fast, or running too slow, she explains. “It is as if there is a huge wall in my head. I am on one side and all my mental skills are on the other. I hope one day I will scrabble up and climb over the wall…”
Losing her cognitive ability is only part of it. Collingridge has been bedridden for three years and ill for as long as she can remember.
At 27, she is in nappies, totally dependent on her mother and is fed mainly through a peg in her stomach. She looks at the door of her darkened bedroom in Dulwich, south London, wondering if she will ever be able to walk out of it – or even towards it.
With help, she can now sit up for a few minutes a day but her legs feel dead. She asks: “Will they ever be able to support my weight?”
Her hearing has become so hypersensitive that the faintest noise registers like a fracas. Her mother brushes the carpet on her hands and knees because the sound of a vacuum cleaner is torment.
Even the hum of the central heating makes her feel ill. When Emily was at her worst, skeletal through lack of food and in terrible pain, she says that to hear people breathing in the same room was akin to being beaten up. “It was like an assault on the body.”
Unknown to them, she could hear doctors talking in whispers on the other side of her hospital room. “They were saying they thought my heart was going to fail.” For a while, she was blind because her eyelids would not open and the eye muscles were too weak to focus.
Somehow or other, Emily pulled back from the brink to which myalgic encephalomyelitis (ME) had driven her. But for two weeks last summer, unable to speak, eat or move, and feeling as though someone had slit open her back with a knife and poured acid inside, she contemplated assisted suicide.
“Every few minutes, there seemed to be a new symptom until I couldn’t stand any more. I’d read about euthanasia and wondered what it would be like, but I was incapable of asking my parents because I had no voice.
“Then by a miracle, when I was at my lowest, it started to let up a little. I turned the corner. It was truly the darkness before the dawn. If that dawn hadn’t come...”
Some years ago, when she was working for the Association of Young People with ME (AYME), Emily heard of the case of Lynn Gilderdale, the East Sussex girl bedridden for 17 years whose mother, Kay, has now been arrested on suspicion of helping her to die.
“I feel so lucky compared with her,” she says. “I had three years of nothingness, of hell, but this slight improvement has given me hope. The first time I washed my face, it was as big an achievement as when I was two years old. I can clean my teeth again.
Once it was too painful and made me sick. But I can live only in the here-and-now. If I look backward, it’s hell and if I look forward, the future is uncertain.”
Her mother, Jane, understands the Gilderdales’ hopeless anguish because she and her daughter have come close to it themselves.
“They were a brave mother and daughter and what they went through is just awful,” she says. “I have myself sat with Emily when she could do nothing and was in great pain and, for a short time, I thought her life was not worth living. It seemed so relentless. At times she did not even recognise me.
“This is such a poorly understood condition. It’s not just chronic fatigue and extreme pain, but it embraces cognitive problems, too. Emily feels as though she has lost a grasp on expressing herself. It is painful for her to be touched but I find it awful not to be able to give her a cuddle.”
Emily probably contracted ME when she was seven and started to suffer a sequence of minor illnesses, but she was not diagnosed until she was 14.
At school, she struggled and eventually had to be educated at home. Three years ago, she suffered a major relapse.
She is 5ft 8in tall but her weight had dropped to six stone because she could no longer swallow. When a feeding tube was inserted in her stomach through which she could be fed, her body went into violent spasms.
“It was terrible to see her in that degree of pain,” says her mother. “She suffered post-traumatic stress as a result.” She also contracted septicaemia and there were fears for her life.
The ability of ME to defy definition and treatment and to manifest itself in ways unimaginable to non-sufferers has made it one of the most intractable of modern illnesses.
It is a condition that still baffles and divides doctors. Emily describes how she was visited by her GP, the doctor who delivered her, when she had relapsed and his response frightened her.
“I could see I was unrecognisable to him. I could sense the fear in him. When your doctor is afraid, what can you do?”
As Dr Max Pemberton explains above, the term Chronic Fatigue Syndrome (CFS) has gradually replaced ME and the perjorative term “yuppie flu”.
But, according to Katie James, of AYME, the underlying cause of the condition has split the medical profession, patients and support groups. But there is at least no longer any doubt about its existence or its “devastating and debilitating effects”.
Sylvia Penny, who is her daughter Michelle’s sole carer, was a victim of this professional division when a paediatrician in her home city of Cardiff, and another in Durham, could not agree on her treatment.
Michelle was subjected to Graded Exercise Therapy (GET), one of the two treatments with scientifically proven value for ME (the other is cognitive behavioural therapy) for six months in 1999. But in her case, it was disastrous and her mother says she has never really recovered. She is unable to hold a pen, or feed and dress herself properly.
A widow, Sylvia looks after her 24-year-old daughter without medical or social services support. “Michelle is isolated. She has lost her youth and lost her friends. She is exhausted by visits. She used to get through five novels a week but now she struggles to read what I call trashy magazines. Her concentration has gone. This is a very cruel illness because it takes your life away and your family’s life away. It is like living in limbo.”
In most cases, parents ungrudgingly give up their lives to help their stricken children in the hope that there will be remission or even, one day, a cure.
With no self-pity, Jane Collingridge remarks in passing that she and her husband cannot travel or have holidays or even go out together as other retired couples do. That doesn’t concern them.
“The very worst thing,” she says, “is seeing Emily suffering. Life’s out there and she can’t live it.”
The Canadian ME/FM Action Network is asking for submissions for a collection of stories they are putting together. If you would like to contribute, please go to their site at www.mefmaction.net.
The following is the story that I submitted.
Priya, Canada; June 2011
I always travelled by bike. Everywhere. I enjoyed concerts, being politically active, camping, dance, gymnastics, my work, playing guitar, painting, cooking. I was the only kid in my whole public school that got the ‘Award of Excellence’ for physical fitness.
I have a history of travel in India, South America, North America, Europe and the Caribbean. In India, 1996 I came down with an un-diagnosed malaria-like illness, gastroenteritis and four flus. I think this set the stage for decreased immunity and gut problems, though it didn’t hinder me that much from my activities. Upon my return to Canada, I had my amalgams removed by SW who did not use any precautions, and had me swallowing and spitting out hunks of mercury fillings when he was done. He now denies I was ever his patient. I have only received one vaccination past age 10 - for meningitis - forced upon me at school when I was 19. I believe all the above came together to burden my immune system, setting the stage for what was about to appear ...
On New Year’s Eve, 1997 I was in NYC eating Indian Food at some joint on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu.
Yet, I sensed it was somehow different. Turns out it was, as it never resolved. I was 26 years old. Within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 93.3) about 3 times over. Within 5 months I became unable to work as co-owner of Canada’s largest health food co-operative, nutritional consultant/herbalist, and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, though I felt ‘wired’ all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway and showed up at doctors’ appointments on the wrong day. In 2001, I lost my father, my home, my income, my cat, my vehicle - all within weeks, but I remained stable, functioning at about a 5/10.
I did not want to be back living with my mother, and I wanted to pursue my spiritual path in a more focused way, so I signed up for a 6-month stint at a Tibetan Buddhist monastery in Cape Breton, NS. Then 9/11 happened and I started feeling worse, but I was determined to go ... It was perfect and I loved everything about it, though I was having difficulty with the daily schedule. I was told that I should leave to benefit my health. I was stubborn and didn’t want to hear it. I was undergoing immense stress from just trying to cope enough to stay. Some of us, including myself, came down with wicked flu. After this flu my neurological problems started happening in a severe way with increased sensitivity to noise, inability to book a hotel room, etc.
Somehow, I made it back to Toronto in 2002, not well at all. I had an MRI: negative for MS. I had an EEG, which caused a seizure and dirty looks from the lab tech, but showed ‘no epilepsy’. I moved in with my aunt and uncle in the country but got much worse inside of 2 months, I believe, due to the 2 cell phone/radio towers that border their property. I couldn’t speak much; couldn’t listen to speech or music, and started having seizures provoked by overstimulation (e.g. someone whistling, or hearing a radio play). My uncle drove me to Toronto to see my ME specialist in May, where I had a seizure from people talking in the waiting room. I then ended up at my mothers’ by default, bedridden. I tried to walk, but my whole body became spastic. Within the year I became paralyzed.
I have spent 97% of my thirties bed-bound. From my own experience of ME/CFS, I would describe it as feeling like I've been hit by a Mac Truck, the worst case of the flu, and 20 cups of coffee while having been made to stand for 3 days straight after running a marathon, without being allowed to sleep. For a few years after diagnosis I was moderately ill, unable to work but able to go to restorative yoga, drive, take a few vacations, go for short walks and take care of myself. I did all the right things and yet things went downhill...
At my very worst I was totally paralyzed for 8 months, unable to speak or put a few words together in my mind; I couldn't process any incoming sensory stimulation, so nobody could talk to me. I was in the most unbelievable neurological pain, convincing me that hell realms existed and that I was in one. Opening my eyes to look at a blank wall was impossible. My brain hurt and my body felt crazy, like all the subtle infrastructures suddenly went haywire. I recalled a the story of a guy who took 100 hits of LSD and was tripping for a year. His life sounded like a wonderful dream compared to mine.
I remember trying to look at the clock beside my head, trying to take my heart rate for 10 seconds as it echoed in my pillow, but it was impossible. If I ever needed to dial 9-1-1, that also would have been impossible. Liquid food was poured down my throat, running down the sides of my face as I couldn't use my facial muscles properly to manage a cup or my hands to wipe it up. I was given nutritional IVs, yet they made my blood sugar rise to levels that only diabetics can achieve, and I'm not diabetic. I was constantly fighting to get enough 'food' into me to keep my blood sugar from dropping; I knew the strain of hypoglycemia on one so weak was serious: the last time my blood sugar plummeted, the stress caused a huge crash which resulted in my inability to stand up anymore ... followed by the paralysis of my legs ... followed by the paralysis of my arms. Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether. I wasn't able to have my hair washed anymore in the bed sink; nor was I able to tolerate having bedsheets or my top changed. My mum yelled at me because I stunk. She used to throw my 85-lb. body onto the commode beside my bed until a bladder infection relegated me to the bedpan. I motioned to the scissors with my eyes (a major feat) and had my mum cut off my hair, as it was too heavy on my head and caused distress. I hoped the OT, nurse or doctor would figure out to flex my feet to avoid the excruciating 'foot-drop' that occurs when movement in legs is lost. But they didn't. They also didn't inform my mother that I needed 'turning' every 1 1/2 hours to avoid extra pain. I had a wash twice a week through CCAC, a community caregiving service. I stunk because I could not wipe myself after using the commode, and I did not want my mother doing it. When I had my period, I just bled onto a ‘blue pad’, but didn’t receive any extra care to clean me up. I felt gross in every way imaginable. I waited through unbelievable pain each day for the night, when I might get a short reprieve and sleep. My mother and close friends thought I was dying. I felt I was. My quality of life was in the red. It was an effort just to breathe, get food down my throat and land on the commode.
In 2005 some grace entered my life. I was put in hospital, treated for a bladder infection with Macrobid and somehow I stopped crashing. I was relieved to be away from my mother, who was not coping as my caregiver. Slowly I could move my toes and hands, then I was able to get a kleenex out of the box and blow my nose. My speech was weak, but it started to return. I became able to chew certain foods. After almost 3 months of physiotherapy I was able to walk up to 24 meters once a day (on a good day) with a walker if I spent at least 20 hours of the day in bed. I was transferred to a rehab hospital (big mistake, but the ‘rules’ required it), and started going downhill because I was ashamed to ask for help when I needed it and my physician there didn't believe that ME/CFS existed. The six psychiatric diagnoses from the previous hospital were not helpful. Everyone who didn’t know me thought I was lazy and choosing to ruin my life by not being able to get out of bed except for the 1-2 hours a day I would sit in the wheelchair.
One day, some installments and major cleaning were being done in my hospital room, leaving it with an unusual and extremely strong chemical smell. This VOC exposure caused a major crash, leaving me unable to feed myself, brush my teeth, stand, walk or talk. I was devastated. Yet, the doctor told me I didn't walk because I didn't want to. The Patient Care Manager forced ‘tough love’ on me, telling the PSWs not to feed me or brush my teeth; that I just had to force myself to do it. Politics played in here, as she let it slip that the she couldn’t get the PSWs to do certain tasks, as they wouldn't understand my needs because they 'weren't educated', so I’d just have to do them myself. Finally, when my Care Manager was away on holiday, my friends spoke to her replacement and she demanded the PSWs help me with tasks I could not do myself from that day forward.
They eventually moved me to the Long Term Care floor of the hospital for residents awaiting transfer to nursing homes. I was the youngest one there in the history of that unit at age 34. Here, the PSWs would not let me sleep, as they owned the rooms and saw fit to party, gossip and use their cell phones in them all night long. In the morning, I recognized one who was whooping it up in my room the night before, and asked her why she wouldn’t let me sleep. Her response: ‘Life’s a killer, baby. These people, y'all just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody.’ After the myriad stresses of 20 months in the hospital, the stress of not being allowed to sleep was too much. I did not have the energy to even receive a wash. My adrenals were totally exhausted, and I was fading fast.
In November 2006, I left in an ambulance without being discharged to save my life, once again ending up at my mum’s. The hospital kept calling, asking my mum to bring me back, at least so they could discharge me. They just didn’t get it. If I had to be moved one more time in that shape, that would’ve been the end of me. Bureaucracy always trumps patient well-being in the health care system, so I understand their efforts at trying. Too bad they didn’t understand why I refused. Too bad so much of their buraucracy is not in the
I have recovered some, but at a pathologically slow pace, encountering many set-backs. I have not been able to stand up or sit up independently since 2005. Now it is 2011. On good days, I can use the computer, read, meditate, chew certain soft foods and feed myself. Sometimes I can brush my own teeth, which is a pleasure I cannot even begin to describe. I use the bedpan during the day and diapers at night. I still cannot sit up independently, stand up or walk. I can’t tolerate movement, so I’m not able to be transferred into a wheelchair, or to go outside. On bad days, I can’t roll over in bed or speak. I have caregivers through an agency, though find many of them lacking the necessary skills to take care of people in my situation. The system doesn’t have the money to pay for workers with skills.
It is a job in itself being very severely ill and having to fight the system for the basics of care at every turn.
One day I will write my story the way I want to. Until then, thank you for reading the first draft.
Emily is the author of The Essential Severe ME Handbook. Here is her story, in her own words.
I was a very happy six year old. I loved school and my boyfriend; I could spend hours in a swimming pool and always wanted to climb everything in sight;
I couldn't wait to have a proper bike without stabilisers. Life was out there and I was going to live it to the full. Then mumps hit my class.
My peers continued to run around the playground, but I was in bed for weeks. In time I went back to school, but gone was my childhood vigour. I would return home so desperate to sleep that sometimes I wouldn't make it past the downstairs floor where I would lie still for a couple of hours. I had mysterious pain migrating round my body and was driven crazy by an 'irritable' bladder. I struggled to hold a pen and my eyes wouldn't focus properly. My sharp brain became increasingly fuzzy - teachers were confused to hear their consistently competent and confident pupil repeat 'I can't do it, I really can't'. I was a shy, sensitive child and these mysterious symptoms were so strange, so inconsistent, so confusing that I was embarrassed - and even ashamed - of them. When doctors didn't show any significant concern, I began to hide everything that I was experiencing and struggled on alone. My mother knew that I was "different" from other children, but it was not until my symptoms became hard to conceal that anyone realised that something was very wrong with my health. By this point I was nearly ready for secondary school.
It was now the early 90s and ignorance about ME was still widespread. With no obvious cause to my constantly deteriorating condition and still no support from doctors, I was forced to pursue as normal a life as possible. For me normal meant being physically dragged from my bed in the mornings only to collapse at school and be sent home or, worse still, carted off to hospital in an ambulance. It meant standing at the foot of the school stairs crying at the thought of having to climb them. It meant my best friend carrying my school bag because I was too weak to do so myself. It meant being bullied and ostracised for having an as yet unlabelled but crippling illness. It meant painful self doubt which soon turned into self hate - if I wasn't ill, then clearly I was a defective human being. Most of all it meant isolation and misery - was I going to suffer like this for the rest of my life?
By the age of 14 both school and home tuition were a physical impossibility. With little and sometimes no functioning in my legs I was now in need of a wheelchair. At last my doctors paid attention; at last they realised what was wrong. ME. A chronic neurological condition triggered by a virus. In my case: mumps. My relief was incredible. I wouldn't have to fight against my pain and ignore my disability daily any longer. And surely if it was an illness it would one day go away. It's hard to imagine how I would have felt if I'd known that fifteen years later I would not only still be waiting for that elusive recovery, but would be far far sicker.
The decline continued and at the age of 16 I found myself housebound. But I was now absolutely determined that ME would not ruin my life. The Association of Young People with ME (known as AYME) was looking for volunteers and I embraced the opportunity. My career aspirations had long been charity PR and I was amazed to find myself fulfilling them despite my circumstances. And I was not disappointed in my choice of occupation. The next five years were extremely rewarding and I felt honoured that my achievements were twice recognised by the Whitbread Volunteer Action Awards. But my disability was now profound. I needed someone to bath me and at times to dress me, feed me and help me to the toilet. I worked from bed. At the end of each day I lost the ability to speak and the pain was so bad at night that my mother had to get up to provide additional care. This was not going to stop me from moving on into the wider world though. At 21 I commenced what were to be a satisfying three years working (still from bed) as a project adviser for various charities, including the UK's leading family support organisation Home-Start.
But in 2005, when I was 24, life was to take a very cruel turn. For some time my doctors had not known how to manage my extreme pain and I was once again pushing myself too hard; I now found myself spiralling into a level of illness that was both shocking and overpowering in its severity. I had no idea that modern medicine could allow such suffering. I knew that my family and doctors felt as helpless, desperate and afraid as I did. I lost the ability to swallow, to speak, to see, to move. I was doubly incontinent, often paralysed, tube fed and in unbelievable pain, only partially relieved by high dose morphine. My nausea was so extreme that it had to be treated with drugs normally reserved for patients undergoing chemotherapy. I could bear no stimulation - even though I couldn't open my eyes and was in a blacked out bedroom, my eyes had to be covered at all times, I wore earplugs for 23 hours per day and someone's mere presence in my room was like an assault. At times I didn't recognise my own mother and was confused about where I was. In 2006 rare complications meant I came close to losing my life. For much of 2007, as the misery dragged on, I regretted the life saving treatment and yearned to be released from the hell that was my life. But I was incredibly fortunate. By the end of 2007, when I truly felt I could keep going no longer, my body rallied.
The improvement came slowly. The first major milestone was washing my own face. Eventually I progressed to having my curtains open. Then being propped up in bed and later sitting on the edge of the bed - my family and I could not stop beaming with excitement at my managing to place my feet on the ground without agonising pain or blacking out. In time I started taking a few wobbly steps with a walking frame, having a bath thanks to an electric reclining bath lift, going downstairs with the aid of a stair lift and even managing to go outside in the sunshine for a few minutes now and again using a super duper reclining wheelchair. At last I could spend time with my loved ones - my parents and I began to have weekly family film nights which, though difficult physically, were an almost unbelievable joy and I got into a routine which allowed one phone call to a treasured friend each week. I even - and on reflection I do not know how I managed this as I was still so very ill - wrote my first book, "Severe ME/CFS: A Guide to Living" which was well received by my fellow sufferers, carers and professionals, with orders flooding in from around the world within days of publication. My dreams seemed to be coming true; finally I felt I could dare to imagine one day having a life that was not dominated by crippling illness. I was so full of hope and love for life. But such happiness was not long lived.
A difficult and unavoidable hospital admission in 2009 brought with it a crushing blow: devastating relapse. There are not words for the disappointment I felt. I was thrown back into the indescribable hell that is ME at its worst and I did not know how I would stand it. I was once again trapped in a body that was torturing me 24 hours a day and there was no way of escaping. In the first six months of 2010 I was hospitalised four times as my body struggled to survive the intense symptoms. I spent a total of nine weeks as an inpatient during this period; it should have been longer, but the hospital failed to meet my needs during the last admission and I was forced to discharge myself before irreparable damage was done. Some of my days in hospital were amongst the most frightening of my life - and all because the hospital did not provide a care environment appropriate for someone with severe ME and thus my condition was magnified a hundred times over (it was so bad that I don't know how I stopped myself from screaming - I certainly could not hold back the sobbing). I was given a central line for long term intravenous nutrition and medication, but it had to be removed when I developed a serious infection; this in itself was another significant blow as other methods of delivering the symptom relief so vital to me are not so effective and complications have made tube feeding dangerous for me. All I wanted was to be able to turn the clock back a year. The old cliche that the simplest things in life are the best is true. I yearned to feel fresh air on my skin, to eat a meal, to enjoy the sensation of clean hair... But most of all, to feel less ill. Of course, nobody could make this happen for me. Somehow I had to find the strength to accept the nightmare I was stuck in and to have faith that, in time, my health would start to improve again.
So what is my life like now? Thanks to the strong drugs delivered round the clock by syringe driver and injection that currently keep certain symptoms reasonably stable, I am managing to stay out of hospital. However, it would take very little to change this and so my family and I constantly live with the worry of when my next health crisis will strike. It is impossible to describe how ill I feel every minute of every day - many people would find this hard to believe, but it is becoming worse than when I was in a High Dependency Unit, my body in shock and my organs failing. It really does seem incredible that I am not actually dying. I sleep for up to 20 hours a day and the only people ever to enter my darkened room are my mother (who is my 24 hour carer and as such is virtually housebound herself) and the community nurses who support us; I have no direct contact with anyone else, not even my father - despite living in the same house - as I'm simply not well enough. I am mostly cared for in silence as I myself can only whisper and hearing other people talk can make me feel even more horrendous. But when my mother comes in the room my head fills with all the thoughts, feelings and ideas that I would like to share with her and not being able to do so is beyond hard; even worse is having to spend so much time lying here alone because just having her company can intensify my symptoms to an unbearable degree. I desperately miss communicating with friends - I keep hoping to send them messages, but I never find the strength. I have not been washed properly for months - it's just not feasible. We've had to make the very emotional decision to cut off all my hair as my inability to cope with having it brushed meant that it had matted together into a huge, tight lump which was horribly uncomfortable. I have to wear nighties that button up at the front so that my mother can roll me into them, but I still have to leave a couple of weeks between changing as it is such a strenuous task (this despite the fact that they are frequently soaking wet due to the horrendous sweats I have on an almost daily basis). The sheet on my bed is often left unchanged for weeks as when it is my body's reaction is extreme: seizures, breathing difficulties, tremors, spasms, hideous pain and nausea. I struggle to cope whenever my mother changes my incontinence pads and find myself dreading those times. I always have to lie flat and have pillows surrounding my body as I cannot support myself; just lifting my head up for a few seconds, if possible at all, can leave me on the verge of losing consciousness. For hours each day my body is so hypersensitive that contact with bed covers can send me demented with pain. I require a drug which is one hundred times the strength of morphine just to be able to manage some ice cream and even then the swallowing exacerbates my pain and many of my other (100+*) symptoms. Having once been dangerously underweight, I can now do nothing to stop my ongoing weight gain caused by a restricted diet, medication side effects and the illness itself. I worry constantly about my teeth as brushing them isn't possible - it would make me dramatically ill and could send me back into hospital (and I dread to think of what would happen to my body if I was put through another admission) . The basic necessities of daily life are so far past my physical capabilities that my overall condition is steadily declining through the accumulative effect of chronic over-exertion. It always seems hard to see how I could get any worse and yet I do; it is impossible not to be frightened by this. The highlight of my day - my only real distraction - is going through the lovely post that kind and thoughtful friends keep me supplied with; some days I just can't manage this though and often when I do the effort involved results in a fever.
Mine is a tough life filled with constant physical pain and almost unbearable suffering, but I try not to dwell on it. Amazingly I am not currently depressed though I inevitably have my low days and I do get angry when I think of the huge negative impact that doctor ignorance and mistreatment has had on my body. I still have the intense passion for life that I had when I was that healthy little girl all those years ago and I can't wait for the day when I can get out of bed, walk out of my room and embrace every opportunity that comes my way. Sadly, I cannot see this happening before my 30th birthday in the spring of 2011. It's hard to believe that I am approaching such a landmark date. Everyone questions where their twenties have gone as life flies by so fast, but I really feel that mine have been stolen from me. And not just my twenties, but a large chunk of my childhood and teenage years too.
ME has taken so much from me and inflicted so much pain. After 23 years there is still no end in sight. It truly is a hideous illness.
N.B. Much of this was written prior to my relapse. Recounting what has happened since my relapse has been a huge undertaking which has taken 15 weeks of writing a sentence at a time and had a significant impact on my symptoms. However, I feel it to have been a very important task. ME is extremely underestimated. If there is a chance that describing my current life as well as my past experiences will help people to understand the enormity of this largely hidden illness, inspire health professionals to improve the care offered to sufferers or provide the small comfort of knowing one is not alone to others who are struggling with severe ME, I am pleased to do so no matter how difficult.
Pain: muscle/joint/bone/neuropathic/vein (anywhere and everywhere in body), headache/migraine, abdominal, pelvic, toothache, earache (and itching inside ears) Muscle: pain, weakness (despite natural strength remaining evident at times), fatigue, tightness, stiffness, spasm (inc. dystonias), twitching, tremors, rigidity, hand/foot clawing, transient paralysis, inability to open eyes, collic, extreme problems with sustained muscle use
Joint: pain, stiffness Flu like: malaise, exhaustion, aches, (post exertional) low grade fever (approx. 37.5-38.0 deg), sore throat, tender/swollen glands
Sensory: light/sound/touch/smell/chemical/taste/vibration/movement/medication (e.g. antibiotics)/weather hypersensitivity, extreme reaction to sudden noises/movements (e.g. doorbell or door opening), extreme pain response to only slightly painful stimuli, extreme pain response to painless stimuli, sudden sensory overload, inability to filter unnecessary sensory information (leading to significant restriction of cognitive abilities and increase of ill feelings) strange sensations (e.g. pins and needles), loss of sensation, inability to judge position of limbs.
Gastrointestinal: nausea/vomiting, acid reflux, icrease or decrease in appetite, severely impaired motility leading to constipation, paradoxical diarrhoea, bowel cramping/pain, flatulance, digestion difficulties, faecal incontinence
Urological: difficulty emptying bladder (leading to frequency and leaks), painful spasms, pain on urination, bladder ache, incontinence
Cognitive: impaired memory (inc. temporary loss of significant information from the past, forgetting things I've been told recently and stopping speech mid sentence as a result of being unable to remember what I'm saying), (occasionally) inability to recognise familiar people, poor concentration, brain fatigue, impaired intellect, confusion/disorientation, sense of disconnection from environment, brain "freezing", cognitive slowing, difficulties normally associated with dyslexia/dyscalculia/dysgraphia/dyspraxia, difficulty learning entirely new information, difficulty or inability to understand speech (often sudden onset), reading difficulties (inc. word blindness), using wrong word in writing or speech, difficulty/inability to make decisions (trying to make decisions can cause overwhelming ill feeling and brain paralysis, sometimes leading to panicky feelings), difficulty multi tasking (despite natural ability!), loss of meaning of time, difficulty with telephone conversations
Eye: blurred vision, "floaters", other visual disturbance, pain, twitching, inability to open, watering
Sleep: hypersomnia (up to 20 hours sleep in a day), insomnia (up to about 60 hours without sleep), frequent waking, disruption of circadian rhythm, difficulty getting to sleep, light/unrefreshing sleep, dream changes
Temperature: extreme temperature fluctions (largely unrelated to environment), cold hands and feet/poor circulation, (post exertional) low grade fever (approx. 37.5-38.0 deg), sweats
Other: excessive thirst, salt cravings, dizziness, vertigo, orthostatic intolerance/difficulty standing still, fainting, myoclonic jerks, clonic seizures, absence seizures, hallucinations, palpitations, raised resting heart rate/tachycardia, swollen feet/ankles, extreme pallor, cyanosis, tinnitus, panicky feelings (associated with degree of illness rather than thoughts/circumstances), difficulties with speech, difficulties with chewing/swallowing, allergies, poor fine motor skills, difficulty with physical tasks requiring a sequence of movements/actions, clumsiness/poor coordination, problems with balance, episodes of feeling high/hyperactive thoughts/behaviour, weight gain independent of calorie intake, hypoglycaemia-like symptoms, breathing problems, mouth ulcers, bacterial or fungal skin infections, menstruation changes, painful menstruation
Emily Collingridge, 2010
"Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
(Permission to re-post)
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook grouphttp://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See alsowww.severeME.info.
These videos are created by PWC, Daniel, who has been ill for about two years. He is a twenty-year old living in Toronto relating his experiences with ME/CFS.