Is M.E simply ‘fatigue/feeling tired’?
Here’s my first-hand account of developing acute M.E in 2004 by being encouraged to physically exercise out of ‘fatigue’ symptoms. Eventually, this resulted in overwhelming neurological dysfunction/breakdown, severe Liver congestion and infection by Epstein Barr Virus to a near fatal case.
Thereafter, I endured this torture in isolation for many years alongside widespread projected social and medical scepticism.
Extract from: Book 3 ‘Embracing Adulthood as a Skateboarder’ Chapter 2 ‘The process of depletion’.
‘Poison Years’ i
…the next 3-4 years of my ‘life’ were simply an unimaginable hell; but I will do my best to describe my harrowing experience, for those who even give a damn. With Helen forced to keep going to work full-time, and absolutely no day-care or support from my immediate family or ‘friends’ (who in the case of the latter completely disappeared altogether after projecting a whole manner of ‘imagining it all’ accusations at me) I was simply left alone at home completely bedridden with acute and severe neurological dysfunction, internal organ congestion/marked dysfunction and constant, disseminated muscle pain and weakness, day-after-day, month-after-month, year-after-year; all of which were severely exacerbated by the smallest amount of physical or mental exertion. The constant migraine headaches (that never ceased for a moment for years on end) were intense to the point where I honestly felt like my head was going to split open; as if someone had lodged a pickaxe in my skull and left it there. My brain literally felt like it was constantly being compressed in a vice.
The unrelenting blurred vision, chronic dizziness and intense tinnitus (ringing in the ears) made my days a complete misery, alongside the hypersensitivity to noise, sound and motion that accompanied them, and the loss of balance function that made me feel completely ‘legless’. I became hypersensitive to all forms of electromagnetic energy and radiation; the television, computer, hi-fi system, lights, cordless phone and worst of all, the seemingly endemic health hazard that is ‘mobile phones’ pierced right through me and easily interfered with the function of my brain. Indeed, in the case of the latter two ‘convenience appliances’ they literally sent my brain into complete meltdown with immediate effect, and I turned into a complete gibbering wreck, who could no longer make sense of anything, maintain any sense of emotional equilibrium, communicate clearly, or even barely stand up straight; needless to say, they were banned from our home altogether. In the end I had to even wear a personal energy harmoniser, natural crystals, and have the house ‘energetically harmonised’ to keep myself from being absolutely ravaged by the external energy pollution now endemic in our environment; a reality M.E sufferers become very ‘sensitive’ to.
In terms of my actual brain function, I could hardly make ‘head nor tail’ of what Helen was verbally communicating to me; experienced complete memory loss/dysphasia, and many times my words became muddled, slurred, and confused. Accordingly, I was unable to communicate clearly at such times or comprehend exactly what was being said to me. My once sharp intellect and academic intelligence went completely AWOL, and I found it nigh impossible to make sense of the most simple of books or literature, reading every word through a continuous haze of blurred vision, cognitive dysfunction, and disequilibrium. My emotional balance when complete haywire outside of and beyond my conscious control, and throughout the course of the day, I sank to the lowest depths of despair, to highest point of exhilaration, with no external impetus, psychological cause, or medicinal stimuli; after all, I was in complete isolation. I had constant disturbed night’s sleep, as I writhed in excruciating pain, despite hardly being able to even get up out of bed, and feeling akin to a corpse; but all I could do was lie there for hours on end, stare at the ceiling or four walls, desperately hoping I would ‘drop off’ somehow. The overall muscle pain and weakness I suffered everyday was unlike anything I’d ever experienced before to the point of being severely excruciating and relentless; as though I’d been trampled on by a herd of angry elephants and had a million ‘pins and needles’ everywhere; I could hardly even stand up, move from one room to another, or get out of bed altogether; I had to just lie there and endure, in complete silence and isolation.
My abdomen was so severely swollen and congested that it looked like I’d been on a non-stop eating marathon, and my eyes, skin, and urine remained as yellow as a banana skin (a marked contrast to my previously ripped and muscular physique) and the latter became like acid, as opposed to water. My finger and toenails turned completely green and yellow, and slowly, fell off; clearly my immune system had been adversely affected which allowed pathogens to proliferate throughout my body unchecked. My internal abdominal organs were locked together like a vice whilst intense cramping pains and nausea (to the point of vomiting) besieged me without end; as if life itself was being completely compressed out of me; although unthinkable at the time, they remained like this for many years to come. My heart irregularly palpitated horrendously, whilst my lungs felt blocked solid and my breath was very shallow. I sometimes spontaneously bled profusely from various orifices due to the intense internal pressure caused by the liver congestion, which was an absolute horror to endure as blood flowed out of me like water. I became acutely and adversely allergic to all forms of sugar and alcohol which severely exacerbated the abdominal and neurological symptoms to a very dangerous level; sugar and alcohol literally became like poisons to me (a truth some people again, simply refused to believe and accused me of ‘being neurotic’).
The function of my internal digestive organs, lungs and heart was severely impaired, and even the most basic of meals immediately caused me serious indigestion, abdominal swelling, sickness, and nausea. My body’s temperature regulation went completely haywire, whereby I either felt absolutely red-hot, extremely thirsty and sweated profusely, or felt freezing cold, whereby I shivered intensely for hours on end. At the same time, nearly every gland in my body became swollen and painful, and even the slightest chemical in the air or food made me feel like I had been directly poisoned. I could no longer tolerate deodorants, shower gel or shampoo, and even vitamin and mineral supplements stimulated severe, prolonged and acute chronic dizziness and abdominal congestion and swelling. My whole perspective of time changed as well, simply due to the almost overwhelming amount of pain I was constantly experiencing; an hour seemed like a day, a day passed as if it were a week, a week felt like a month, and a month passed as if it were a year. Many times, RIDE’s lyrics to ‘Birdman’ resounded in my head and painfully cut me to the bone in the truth of the matter: ‘The heat can make your head explode, the cold can numb you to the bone; it cuts you through so that you know, in pain the minutes go so slow.’ Without a doubt, ‘in pain the minutes’ did ‘go so slow’. My eyes turned completely black underneath, and any form of physical or mental activity increased the dark circles. For the great majority of the time, I couldn’t even find any release in watching TV or reading anything, as any form of mental or physical activity immediately and alarmingly, increased all the symptoms to the point where they were overwhelming in severity for hours and days on end, thereafter.
My weight dropped to a mere seven stone, and I could barely manage to eat anything other than the most simple of meals such as vegetables and whole-grain rice. For several years, and without day-time care, family support or medical guidance, I literally became like a living corpse confined to a bed in a darkened room in complete isolation, often falling into the deepest of sleep after the most minor of physical or mental exertion; but no amount of rest or sleep eased the overwhelmingly intense symptoms that continued to crucify me in an unrelenting and all-encompassing manner, the like of which, I’d never experienced before or imagined possible. The marked contrast between the young skateboarder, the highly physically active youth, and hardworking University graduate who’d been highly active in one form or another for the greater part of his life and had even excelled in sport and physical exercise, to the young man who lay completely crippled in total isolation and complete unrelenting agony, was distinct, profound, extremely unnerving and striking, to say the very least. My experience of developing acute M.E was of an illness that left ‘no stone unturned’. Moreover, the psychological and emotional stress that these events caused Helen was untold; after all, she not only had to keep working, but returned home each day to the man she loved, who now lay completely crippled and devastated at every level, by an unseen neurological condition that endured for years on end and kept him trapped in total isolation. As such, our lives, dreams, and relationship, was adversely affected at every level. Clearly, M.E is not simply ‘a psychological condition requiring a change in perception,’ ‘hysteria,’ ‘female neurosis,’ ‘feeling tired,’ ‘seeking attention and sympathy,’ ‘trying to get out of going to work,’ ‘people needing to pull themselves together,’ or ‘being fatigued’; these overly simplistic generalisations are blatant misinformation, philosophical delusions, and very dangerous lies that have, and still can, cost people they’re lives, but for no valid reason, whatsoever.
Despite such a dire situation, I tried desperately to get better through Complementary Therapy. With Helen’s help, care and continued support, I literally dragged myself like a living corpse to see practitioners in and around Bristol, who for the most part were completely ignorant of the neurological reality of M.E and simply kept repeating the ‘Chronic Fatigue/feeling tired’ moniker, which was infuriating and patronising and caused me more unnecessary suffering as scant regard was given to how severe my neurological dysfunction was. Each appointment took a tremendous amount of effort and courage, as I put myself through complete torture to attend each and every therapy session, which often only left me completely bed bound in crippling agony for days and even weeks thereafter, not to mention the cost involved. I tried herbs, mineral and vitamin supplements, Homeopathy, Shamanism, Kinesiology, Nutritional therapy, Western and Chinese Herbalism, and more. In many cases, the supplements only increased the neurological symptoms, sending my brain completely haywire, whilst severely exacerbating the abdominal and liver congestion. At one point, I even put myself through the hell of having the dental mercury amalgam fillings removed from my teeth in the hope of a cure; which didn’t prove to be a success, and caused me even more pain and suffering during the process. In short, and as with so many other unfortunate sufferers of this horrendous condition, for years, I had to just lie/sit there and take it head on with no escape or release to be found anywhere, alongside little understanding or support from ‘friends,’ family or GP’s.
Indeed, in the case of the latter, and despite an open admission that clearly, I wasn’t just ‘reactively depressed,’ beyond filling in the ‘Incapacity forms’ and despite the Consultants in-depth and clear definition that I had virally induced M.E with a wide range of adverse, acute and constant, neurological, muscle, internal organ and nervous system dysfunction, they cruelly persisted that: ‘M.E doesn’t exist, what you have is ‘Chronic Fatigue’ (even in front of a medical student I might add) or ‘so you just feel tired,’ and even worse ‘most doctors don’t even regard headaches as an illness’ (despite the fact that on-going, unrelenting, head-splitting migraine headaches for years on end without relief, is simply clearly abnormal and a sign of serious underlying illness). What’s more, the clear ENT diagnosis of ‘Canal Paresis’ explaining the complete loss of balance function was omitted from my actual medical record completely, and I was told by the GP that ‘the term is not an actual diagnosis for anything’. Even worse, they refused to put the Consultants exact diagnosis for M.E down on my medical history (but left on the earlier incorrect ‘reactive depressive’ misdiagnosis) and said the term used is ‘Chronic Fatigue,’ which of course completely overlooks the true neurological basis, severity and dangers of M.E as clearly presented before their very eyes. They disgracefully collectively colluded through medical denial and deceit to create a false impression of the reality of M.E on my medical history…’
Ten years, 40,000 pounds invested in continuous ‘complementary’ treatment creating some progress, and an incredible amount of personal will, perseverance, dedication and pain later, M.E currently still persists (as does my perseverance and determination to never give-up on treatment in the hope of further recovery).
‘I still haven’t found what I’m looking for’ ii
i Bob Mould ‘Poison Years’ Virgin, 1989.
ii U2 ‘I still haven’t found what I’m looking for’ Island Records, 1987.
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‘… an inherent flaw exists in all types of historical documenting; the use of the written word as a means to express direct experience. Writing and reading about human experience can at best only allude to what the writer is attempting to express to an audience. It’s difficult (and arguably even impossible) to fully express the intensity of the complex human experience we call ‘life,’ particularly in relation to ‘energy-in-motion’ (emotion); words can only serve as a reference point to such experiences. Nevertheless, the written word is largely all I have to document my experiences, and I have done my level best in an open and honest manner…’