You may like to read Emily's story in her own words below:
From 6 to 30: A life with ME by Emily Collinridge, author of The Essential Severe ME Handbook
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.
My Symptoms
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, forgotting 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
