ME/CFS, MCS/TILT, HRS, Alternative Health, and Networking Resources - Scotland, UK

 

           

 

"One should count each day a separate life."
Seneca [B.C. 3-65 A.D.]

Multiple Chemical Sensitivity

From Personal Experience

                                         

The Present Situation

[ Part One ]

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[ Always growing...  Always evolving... ]
[ Copyright © 2000-2004 Gordon D McHendry - all rights reserved ]
[ Web-page last updated: 14.03.04 ]



           

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Introduction
Thank you for coming
Hi          Originally the first 'Unbelievable' Crisis section [ie; Part-1] was my present situation - and it was my intention then to get all of that "unbelievable" stuff recorded online before my rather incredible situation produced either some kind of major health collapse or even actually killed me. This it could easilly have done already several times over [ via chemical poisoning, hypothermia, electrocution, fire ] and, for the record, despite my GP's dangerously ignorant and persistently closeminded 'view' with regard to the actual chemical and physical realities of the MCS illness - could do still.          Then, I reasoned, with "my story" safely in place in the public domain, I would invite the national press to cover the seriously taboo subject of this new worldwide, corporate-made, chemical plague by volunteering my own particularly dismal situtation with it as an ideal example, hopefully triggering [finally] some form of life-saving action from the social services for myself before winter [as I wont make it through another]. Hopefully exposing in the process the scandalous and comprehensive failure of our medical, scientific, and political bodies to even acknowledge the physical reality of this terrible new plague of so called 'modern' civilisation [let alone actually do anything remedial about it].          Even digging real deep and working on it real hard - through some incredibly harsh domestic circumstances, coupled with fairly severe levels of poor health - I still couldn't get "The 'Unbelievable' Crisis" page together quickly enough to reach the longed for 'sanctuary' of the finish-line before it all became hopelessly out-of-date. Time and time again it would all just slip further and further away due to the sheer severity of my ever worsening situation. And often, at those times, all sense of hope would just seem to slip away with it.          The chemical sensitivity problems just keep getting worse you see ... because I can't get free of the ubiquitous triggering chemicals long enough to stand any chance at all of recovering from their toxic effects. The worse it gets with this deadful illness combination [M.E. and MCS] then the worse it gets, in a slowly accererating, health destroying, self-perpetrating loop, that spirals only ever downwards, and always in ever decreasing circles.          In addition to enduring the toxic effects of my house by day, and enduring a different set of toxic effects courtesy of my enforced shed-life by night, for a long time now even all my clothes have been making me disablingly ill too. Some quicker and more severely than others - but all clothing doing so sooner or later. Even my old safety net of second-hand charity shop clothes no longer comes to my rescue now. Please, take a minute or two here to just try and imagine what all that lot must actually feel like physiologically and psychologically as an ongoing and inescapable real life experience that runs relentlessly on and on 24/7.          Summer is almost over again and I have still not caught up. So, "The Present Situation - Part 2" will now also be a necessity. On the upside Satori-5 is now much more developed as a website. If I can just get up to date with my situation, finish "The 'Unbelievable' Crisis - Part 1", get the rest of the "Medical Correspondence" stuff uploaded, the "Other Relevant Correspondence" stuff too, and the new "Articles" section furnished with the latest and best on ME, MCS, and HRS, then that would be enough for me to feel satisfied that all the basics where in place to argue my case well. As I continue to become increasing less able to do this personally the quantity and quality of my work here at Satori-5 becomes increasingly more important to me - in a wicked kind of crushing inverse ratio. Thank you for listening Namaste Yours Sincerely Gordon D McHendry
May 2003: Updated August 2003

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Chapter 01 Chapter 02 Chapter 03 Chapter 04 Chapter 05 Chapter 06 Chapter 07 Chapter 08 Chapter 09 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17 Chapter 18 Chapter 19 Chapter 20 Photographs 01  Photograph 02   Photograph 03   Photograph 04  Photograph 05 Photograph 06 Photograph 07 Photograph 08 Photograph 09 Photograph 10 Photograph 11 MCS Video-1 MCS Video-2  MCS Symptoms   Medical Letters  Other Letters
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Chapter 01
The Present Situation
Part One
[1]    I am trapped in a deadly Catch-22 type situation. Firstly, my toxic-chemical sensitivity situation here is rapidly destroying the already poor health of both my ME/CFS burdened body and ME/CFS burdened brain. Secondly, pushing hard through severe levels of both the ME/CFS and the MCS/TILT illnesses, under long-standing and incredibly harsh 'living' conditions, to create this website, when everything in you is constantly crying out to just stop, to lie down, to rest, to sleep - even just one cosy, restful nights sleep - this too is destroying my health. And the catch?       [2]    The catch is this: You simply cannot, while trapped without savings on inappropraite levels of welfare benefits, get free of this invisible, 24/7, lethal health-loop unless you can somehow convince enough 'key' people [ie; GP's, Consultants, Social Services, Welfare Benefit Agencies, etc, etc, etc] of: (a), the physical reality of ME/CFS and MCS/TILT and (b), the reality of your own genuine and particular situation with regard to them. Consequently, you simply have to keep on writing, and fighting. So, for me Satori-5 became the very heart and soul of that multifaceted and accumilative fighting effort.       [3]    However, and this is the real spirit-sapping bite of this whole diabolical dilema: the harder you try to wrestle with their negative, set-in-stone attitudes to MCS - via numerous letters, appeals, photographs, etc, which their very own close-mindedness on the subject have generated in the first place - the less inclined they become, in yet another savagely cruel kind of inverse ratio, to give you and the physical reality of your chemical induced illness any sort of credence at all. And the more you push for proper and appropraite recognition the more they start to back away from you.       [4]    However, as this kind of "pushing" effort is the only possible hope of a way out that you have then you have absolutely no choice whatsoever but to keep right on fighting - whenever able - in precisely those kind of "pushing" ways, in the desperate hope that sooner or later the Truth [with a capital "T"] will finally out and at long last finally begin to dawn on them. And while you fight on, in the hope of somehow surviving the devastating effects wreaked on you - not just by these harrowing illnesses themselves but also by the "status quo's" illusory beliefs regarding you and the ME/MCS illnesses - that same "status quo" then goes on to project its own entire "illusory beliefs" package about ME/CFS and/or MCS/TILT out onto you - the illness sufferer - who is then unceremoniously cast out medically speaking; becoming in that dire process the scapegoat for their dismal sins. This, of course, then allows "them" to go comfortably on perceiving you as the one obsessed with "illusory beliefs", thereby adding considerable insult to the already substantial physical and psychological injuries their ignorance and arrogance have already inflicted - and mercylessly continue to inflict - upon you.       [5]    Furthermore, all attempts by you to either educate yourself with regard to discovering and trying to understand the true underlying chemical and physiological "Realities" of the MCS illness [since they seem to have absolutely no intention of ever doing so themselves], or to defend yourself against the many harmful effects of their apathy, their psychological "projections", and their dangerous incompetence with regard to this illness - are all invariably seen by them as yet further obvious "evidence" of yet more "obsession" with "illusory beliefs". All of which, of course, make you - in their hopelessly misguided eyes - into one of those terribly difficult and even dreaded "heart-sink" patients. Seemingly, its a case of "heads" you lose - "tails" you lose. Or perhaps even more accurately "heads" they win and "tails" they win - or at least so they think. But as they say - in the good ole US of A - "It aint over 'till the fat lady sings".
End of Chapter 01

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Chapter 02
The Present Situation
Part One
[1]    Last year, in sheer exasperation and a growing state of desperation, I threw down a medical gauntlet at the feet of my GP in response to his often repeated contention that there are no "tests" for proving the physical existence of MCS. In addition to providing him with copies of recent scientific research carried out in America that proves that there is a physiological basis for MCS [ ie; Sheila Bastien Article ] my challenge to him was basically this; set me up with a Toxicologist who would be willing to subject me to a full double-bind placebo based trail wherein I would be wired up to the full range of modern physiological response measuring equipment, [EEG, ECG, Blood Presure Monitor, Respiration, etc], and be subsequently subjected to a double-blind, randomised range of both inert placebos and a claimed range of known MCS triggering chemicals, all under strickly controlled and scientificly valid conditions, upon which I would, I promised, consistently provide measurable and medically relevent physiological responses to my claimed MCS triggering chemicals - on their full range of medical measuring devices - with a perfect accuracy rate of 100 percent.       [2]    I made the further promise to him that I could produce such "proofs" not just for the one full trial either but that I could consistently repeat that perfect test result time after time - for as many repeats as they needed in order for them to be utterly convinced that the Multiple Chemical Sensitivity illness [particularly in its severe form] is a very real, very disabling, and potentially lethal physiological illness.       [3]    To his considerable credit [update: or so I thought at the time - more on that soon in the "Medical letters" supplement above] my GP accepted the challenge and duly wrote to a "Toxicologist" based in Aberdeen Royal Infirmary about the matter, enclosing, I believe, a copy of the American MCS research I had given him earlier. Desperate months passed for me in torturous slow motion. Finally I open a copy of the brief letter my GP had finally received back from this Toxicologist [again available in the "Medical Letters" supplement soon] to find that I, my situation, and my offer, had simply been dismissed in no uncertain fashion.       [4]    So, seemingly you just can't win no matter what you do. Like I said earlier its "heads" your lose and "tails" you lose. However, that gauntlet is still lying there folks - should there be some other Toxicologist out there willing to pick it up and, like me, put their money where their mouth is.       [5]    Meantime... like I said earlier in the previous chapter - I'm trapped in a Catch-22 type situation. I can prove my MCS illness is physiologically real - but they wont let me. And that folks serves the status-quo very well.
End of Chapter 02

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Chapter 03
The Present Situation
Part One
[1]    As you may already have gathered it has often been my unhappy experience to observe first hand how the realities of the MCS/TILT illness seem to spontaneously generate no end of "credibility problems" in most people who encounter it. The ME/CFS illness too - though thankfully to a much lesser extent nowadays. These ubiquitous "crediblity" problems are so destructive and problematic for the typical and genuine ME/CFS and/or MCS/TILT sufferer, in an all-encompassing and multi-level way, that I have decided to devote an entire separate section of this website to just that very thing - called, rather unimaginatively, "Problems of Crediblity". So, excuse me for the time being if I skip lightly over those particularly thorny 'problems' for the moment and instead focus breifly on just the extremely frustrating "Catch-22" one here.       [2]    The major "credibility" problem with this, for many it seems, go's something like this: "How can someone who claims to be so ill manage to write so many long letters? Or create a substantial website? Or make mini-video's? Or shop in the supermarket? Or [simply fill in whatever particular scenario happens to take your own fancy here] ?". The list, it seems, just goes on... and on... ad infinitum and, quite frankly, ad nauseum. I remember precisely this kind of thing coming from a respected journalist of a leading broadsheet newspaper back several years ago regarding the often devastating ME/CFS illness. Can't remember the exact words now but it ran along the following lines: "Isn't it strange just how often these completely exhausted ME sufferers manage to find the energy to write long indignant letters to the Times?". He just couldn't get it. Sadly, neither can many like him.       [3]    The answer to his question is really very simple. We often write letters, Mr Disbelieving Broadsheet Journalist because our lives continue to be devastated by your trivialisation of our illnesses and the ongoing ignorance, apathy, and doubt premoted in your readership with regard to our plight by your influential but totally erroneous view of our true medical condition.       [4]    We "write" because we are driven by both a natural instict to survive and a great humanitarian responsibility to fight you and your ilk as hard as we can. For whether you believe in the physiological reality of MCS or not - the stark and revolutionary reality here is this: it is physically real and not just our health but our very lives are at real risk because of it. And, incidently, so too is yours - but more on that as we go along.       [5]    If our "letters" are long it is because our medical condition is physiologically paradigm breaking and consequently complex. And if at times our "letters" are a little indignant it is because an unholy alliance of certain commercial, medical, and political forces is quite literally destroying our lives. This entitles us to be indignant.       [6]    We know that if we are to survive this devastating illness, and you and your loved ones are to stand a reasonable chance of not joining us, then this particularly diabolical status-quo "illusion" simply must be challenged - constantly. That, Mr Disbelieving Broadsheet Journalist, is why we "write" - even amid the considerable constraints imposed ruthlessly upon us by these new corporate-made plagues of so-called 'modern' civilisation - from which we continue to suffer greatly and in stigmatised isolation.       [7]    We know that if we keep on writing and fighting, especially together, albeit against the odds however seemingly staggering - that we do have a real good chance now of bringing positive changes to our dismal chemically poisoned lives, for our numbers are already legion and growing rapidly worldwide; so too, therefore, are our voices. Most important of all though is that we know we have Truth [with that all important capital "T"] on our side. I truly believe that at least something of that Truth comes across in our words, in our writing, and resonates in the hearts of the honest and open minded. Because our words are True they will have that unmistakable "Ring of Truth" in them. And that is one of our greatest weapons in this struggle - a weapon the "Mr Broadsheet Journalist" brigage just don't have no matter how clever and witty they sound.       [8]    We know if we keep writing and fighting, especially together - then we are able, in no small measure, to put our chemically devastated lives to some vital humanitarian good by helping more and more hearts and minds awaken to the staggering global implications of our MCS blighted lives and the medically and politically sanctioned invisible killers in our midst that have created them - and are creating them still. For our chemical induced illnesses of today are your chemically induced illnesses of tomorrow. And fighting for the full recognition of all these things, even amid the great suffering and adversity imposed on us both by these devastating illnesses themselves and by society's equally devastating treatment of us also, is now, ironically, the only really worthwhile 'life' many "invisible illness" sufferers have left.
End of Chapter 03

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Chapter 04
The Present Situation
Part One
[1]    Continued development of Satori-5 - albeit in soul destroying slow-motion - plus the prospect of supporting national press involvement [hopefully in the near future] are now my only hopes of somehow surviving my longstanding [and for many "unbelievable"] ME/MCS health crisis. I really just don't see any other way of triggering both the possibility of some kind of a toxic-chemical free life for myself, and simultaneously drawing public attention to the plight of God knows how many other ME/MCS sufferers out there [and the numbers are growing alarmingly worldwide all the time across all social classes, ethnic and age groups] who are suffering the same kind of incredible ME/CFS and/or MCS/TILT health challenges as I am - with the same thoroughly shameful absence of anything even remotely resembling the desperately needed effective medical and social services support.       [2]    I am a fairly tough and resourceful individual; that is the ONLY reason I have made it this far. I know, however, that I simply cannot withstand much more of this almost constant toxic-chemical asssault inflicted on me by my present situation. I only survived last years late winter and early spring due to fairly surprising bouts of relatively mild and merciful weather. For me these short, unseasonally mild bouts of weather were quite literally eleventh hour life-saving miracles. Largely because of them I somehow managed to survive.       [3]    Despite last years rough winter passage and its extremely detrimental effects on my already very poor health I still have to push on even more than ever now - and to the very limits of my strength to boot - while I still possibly can because time, and my ability to go on enduring, is rapidly running out. To make matters even worse I need to keep pushing hard like this at every single available opportunity because every time my ability to endure collapses, as it does increasingly often now, to the extent that I am rendered unable to do anything at all for extended periods of time, I never know for sure if I will ever recover enough - under the often impossibly difficult ongoing circumstances that have prevailed over me for such a long, long time - to be able get back up once again and have yet another go at it.       [4]    Each and every time I go 'down' now it feels more and more like it may well be my last. Time is a luxury I simply do not have now under the present environmental circumstances that have me imprisoned. So, if I am at all able, even while cripplingly ill by any reasonably normal standards, and even if all I can manage is two or three small paragraphs of Satori-5 work at any one time, or an important letter - or even just part of one, spread out over an entire difficult day and night, or often over several very difficult days and nights, then I dig real deep, grit my teeth, endure, and push on - well beyond all statistical norms [thank you sincerely Glasgow's 15th Para] to achieve even just that small measure of advance.       [5]    So, I push that hard and that often because: (1) - it seems that my only hope of survival truly depends on it and, (2) - the exposure of the underlying, covert realities of MCS into the public domain are so just monumentally important to the welfare of all of us [and quite literally every other form of life on the whole planet too] that it demands absolutely nothing short of one's utter best. So, fueled by both of these very powerful personal and transpersonal incentives, by some extremely helpful alternative health measures [some from the very cutting edge of bio-electrics], and the grace of God - I have somehow managed to make it this far.       [6]    My situation now, however, is such an utterly impossible one that unless I can somehow trigger drastic change in my intolerable and utterly inhumane situation soon - via my story here at Satori-5 and/or supportive national press involvement - then, quite simply, I am a dead man for sure. Satori-5 will then quite literally become both my headstone and my postumous contribution to the cause of all those still suffering on from the preventable, corporate, man-made living death that is Severe Multiple Chemical Sensitivity, and still fighting on too for the full and proper medical recognition of the true organic nature of the devastating MCS illness.       [7]    For the record I am not afraid of death. The dying process perhaps - particulary if it might be slow and very unpleasant - but not actual death itself. A spontaneous Out-Of-The-Body-Experience [OOTBE] when I was only 13 years old, and the equally spontaneous spiritual awakening process that was kick-started into transformative life within me in tandem with it, eventually dissolved the fear of death in me completely a long time ago.       [8]    The ensuing - seemingly accelerated - spiritual journey that followed on from that very first of a great many OOTB's [now spanning over 35 years] has taught me, beyond all shadow of doubt, that the present chemical/mechanistic paradigm so valued by modern allopathic medicine and all of our orthodox sciences, and that initially served us so well by exorcising the magical and mythical from the purely factual, is now little more than a pale pathological shadow of its former noble self. The moment when science, drunk with the power of its own truly staggering achievements, ceased to be satisfied with its rightful role of "weighing and measuring" the physical world and finally decreed, with incredible arrogance, that anything that couldn't be "weighed and measured" was now no longer really "real" - it went, quite literally, mad.       [9]    Healthy "science" then became pathological "scientism" - and as if that were not disaster enough in itself this sickly, pathological scientism then swaggered on to become diseased almost to its very core by the cancer of exceedingly powerful and utterly ruthless political, military, and commercial forces. Today it still fanatically and desparately clings on, with a truly fundamentalist zeal, to its double-whammy pathology amid the onslought of those paradigm breaking tidal-waves called "Quantum Physics" at one end of this unprecedented evolutionary storm - and the immanent "Intergral" revolution at the other. Fortunately, this mad "sickly science" is already belly up and floundering in those powerful, turbulent, but ultimately healing waters. The evolutionary forces that carry human consciousness forward towards ever greater levels of inclusive, wholistic, and intergrative awareness have already blossomed, for the first time in human history, within the beings of a very substantial percentage of our modern western societies [Graves, Beck, Wilber]. It may take a while yet for the 'clockwork robot' of sickly-science to finally stop clanking destructively about and, like the seemingly unassailable Berlin wall, come mercifully crashing down - but the old chemcical/mechanistic paradigm, as a viable longterm worldview, is aleady dead - it just doesn't know it yet. The crucial question though at this pivotal and unpresidented juncture in human evolution is this: "Will we allow it to drag us all down with it when it goes?". Optimistically assuming not; then soon we should all at last be able to shout with newfound joy: "science is dead - long live Science!" - for Science then will finally have come of age as one of humanities greatest friends and loyal servants - instead of its present unenviable position as one if its most powerful, self-serving, and lethal enemies.       [10]    Meantime, back at the old ranch: One particularly unfortunate example of this "sickly science" pathology is the way it never fails to mistake trans-rational states of consciousness [such as genuine OOTBE's, authentic meditative states, and true mystical experience] for unhealthy pre-rational states - simply because both are non-rational. Depressingly, orthodox science and medicine - as least as they are presently - seem doomed to endlessly do exactly this kind of thing by default because for them there simply are no "trans-rational" states of consciousness! For "sick science" the whole issue simply does not even arise in the first place because its own very limited model of reality, while just about perfect for dealing with the physical world, does not even allow for the slightest possibility of such a thing as a trans-rational state of consciousness! Thus, sadly, the "sick science" pathology of scientism just runs blindly on and on totally oblivious to its most major limitations - with the destructive and dehumanising fruits of this everywhere apparent. Not only does it arrogantly consign all organic illness that it does not understand, like ME, MCS, GWS and so on, to the the convenient catch-all realm of "mental illness" but it does precisely the same kind of thing with all forms of authentic consciousiousness which transcend the purely [and merely] rational. Hopelessly lost in it's own delusions of grandeur scientism truly does believe that it - and it alone - holds the real monopoly on "Reality".       [11]    All that stuff, however, is another extraordinary story for another time. If I survive this winter [and all my fingers are tighly crossed], which is now only a little further down the road, I hope to be able to get deeply into - and thouroghly explore - all that fascinating "consciousness and spirituality" type stuff on another website dedicated to just that very kind of thing over at www.onegreatspirit.com [and mirrored with the ".co.uk" extention too] - so, for the time being, enough said here then on all that kind of thing. Must push on...       [12]    I should perhaps point out that much of the material following on below had already been written before much of the material written above. Given my extraordinary prevailing circumstances this was probably inevitable. When you have a brain that feels like a bowl of cold porridge infested with stinging ants then structuring you ideas is never going to be easy. Often I just have to plunge in whenever and wherever a starting oportunity presents itself. Sometimes working forward, sometimes backward, sometimes even working out from the center towards the edges - but always, hopefully, nearer and nearer to an accurate and satisfactory result that is well presented aethetically - and in a way that is at least partially evocative of our true nature as spiritual beings.       [13]    The ME/MCS riddled brain is very prone to mistakes of all kinds. It gets things the wrong way round and often upside down as well. It confused dates, times, places, names. It completely forgets the most important of things altogether while seeming to remember trivia in minute detail and with remarkable ease. Having searched high and wide for both I can honestly say that there seems to be neither rhyme nor reason to it. I freely confess to making all of those "ME/MCS brain" type errors and a fair share of more normal mistakes too - almost all of the time even, especially here in the pages of Satori-5. However, I also expend a lot of valuable time, energy, and precious health resources correcting loads of these ubiquitous "wrong bits" - so please make kind allowances and bear with me - it will all, I promise, be made as right in the end as is humanly possible for me to make it.       [14]    Meantime, even as I type these words, I am almost at the very bottom of that downward spiral I talked about in earlier pages - and my body tells me constantly these days [and especially nights] that my time is quickly running out. So, I dig even deeper and press on even harder while I still possibly can - with ever decreasing degrees of physical, emotional, and mental resources - towards the omega point of a national press "invitation"; which I will issue on the very day I reach that longed for stage where I feel that I have finally achieved a sufficient standard of quality information here at this website for Satori-5 to tell my ME/MCS story for me - and hopefully tell it reasonable well. I just hope and pray that I can somehow sustain the required effort and actually last that long - because, at the end of the day, you never get a second chance to make a first impression.
End of Chapter 04

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Chapter 05
The Present Situation
Part One
[1]    Unlike a few of the other vices vanity has never really been much of a problem for me. Having said that I must stick my hand up here and admit that I wasn't too keen on sticking the small ugly photo below [what do you mean which one?"] out into the big public domain. But needs must as the devil drives - so up it went! On the bright side however I can now report that my spiritual journey towards complete ego transcendence has subsequently been advanced no end as a result :) Anyway, I hope you will try my little quiz below: Is this... ...the same man as this... ...hmm? Well?       [2]    These photographs were taken 18 months apart - but yes it is actually. If perhaps you didn't think so though then you certainly wont lose any brownie points from me. Quite honestly, when I looked in the bathroom mirror on that particular morning, having just staggered into the house feeling weak, exhausted, and utterly poisoned from yet another extremely long, difficult, and toxic night in the garden shed, I didn't even recognise me either!       [3]    That was why I immediately forced myself through the motions of taking this quick at-arms-length picture of myself. Believe it or not but the 2nd of the two photos above [taken around the start of January 2003] actually flattered me quite a bit because in reality I actually looked and felt much worse than the photograph would suggest. Unfortunately, the anger, determination, and the time taken to get the camera, set it up and take the snapshot, washed away most of the ghastlyness. I still felt terrible - but most of that never made in onto the photograph. And they say the camera never lies.
End of Chapter 05

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Chapter 06
The Present Situation
Part One
[1]    Without the small 2k electric fire shown above I would have frozen to death a long time ago. But its use also triggers a whole sliding scale of MCS symptoms ranging from the fairly mild to the possibly lethal. The longer the fire is left on the worse the MCS symptoms get. When it is simply to cold to put the fire off at all, which is often when you have to sleep on bare wood bare chested and with nothing in the way of bedcovers to speak of, then a constant physical state of chemical torture plays out with ever increasing savagery as the night progresses. "Cosy Poision?"       [2]    The two short videos below [chapters 15 & 17] will give you some small idea of what that is like. They will not, however, convey anything much at all about how long and terrible even just one night of those conditions can be. Or how horrible the chemical poisoning actually feels through the long night and, especially, in the morning when you are in a bad way and have to decide whether or not to risk another half hours poisoned but direly needed semi-sleep - or drag yourself out reeling into the garden straight away in case futher exposure to the chemical torture your body is still enduring pushes your whole system beyond its ablitly to cope and actually kills you.
End of Chapter 06

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Chapter 07
The Present Situation
Part One
[1]    The partially open shed door shown below, like the small electric fire shown in the previous chapter, is very much a double edged sword. On the one hand the fresh air it provides is quite literally a life saver - and on the other hand it makes the shed often impossibly colder. I doesn't do a lot for ones sense of security either. The fresh-air gap you see in the door is one of two lockable open positions - the second, which is absolutely necessary for strong winds and/or driving rain, hail, sleet or snow from the south, is only half the gap-size visible in the photograph. "Always Open"       [2]    This kind of situation quicky teaches you that you have only three choices with regard to the night ahead. One: you can enjoy relatively fresh air - and freeze to death. Two: you can be relatively warm - but get chemically poisoned to death. Or three: you can juggle the first two variables about so that their miseries alternate and you only half freeze then get half poisoned, in a repeating, rotating, and very unpleasant loop. Although such nights can be excruciatingly long somehow you keep getting through them - and you survive to see the dawn - albeit, more often than not, in a terrible state with God knows how much more damage engraved into what is left of your health and wellbeing.       [3]    As you might have guessed - every night I choose to live under the deeply unpleasant but survivable cirumstances of option no three. And every single night, hail, rain, sleet or snow, you get to to do it all over again, repeatedly - for as far into the future as you can bear to look. The burden of this prospect - just by itself - is a hard one to shoulder.
End of Chapter 07

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Chapter 08
The Present Situation
Part One
[1]    As if everything wasn't bad enough already with the severe and worsening MCS and ME/CFS illnesses [and deteriorating domestic circumstances] there were also a long series of dental infection problems too that greatly exaberated everything healthwise in a very substantial way. In addition to having to eat loads of antibiotics for breakfast, lunch, dinnner, and tea for a long, long time these seemingly never-ending dental problems involved a lot of lengthy and painful root canal work too - in addition to the straightforward extractions. As I suspected -especially at the time of taking the "ugly-ill" photo of myself above - there was to be a lot more of the same to follow. "Dental Problems"       [2]    The six teeth shown above were lost in as many months and spanned 5 different dentists, 2 retired, 1 quit NHS work, 1 was due to leave the practice just after I joined it and, finally, his replacement makes up dentist no-5 [and this one may only be a temporary allocation!]. Four of the six teeth shown were root-canal filled first [ouch] in a brave but vain attempt to hold on to them. The final tooth of the six to be pulled was a real bitch. As the dentist finally yanked this little beauty out there was a sudden loud "crack" as it parted company with the rest of my head and came away leaving behind a substantial piece from one of its stubborn roots still buried deep in the bombsite of my gory gaping gum :)       [3]    Eventually he finally managed to get hold of it [groan] after much poking, prodding, pushing, and tugging with a whole range of rather unpleasant implements - and at last it came free. You can see both the infamous tooth in question and its evil root fragment positioned on the far right in the photgraph just above.       [3]    But what have dental problems got to do with MCS and ME/CFS anyway? Well, much more than you might think actually. Of course there are the usual pains and general unpleasantries associated with dental problems and their treatment. Then for the ME/CFS and/or MCS sufferer there is the additional fact that the dental problems themselves also greatly exacerbate the unique, disabling, and ongoing ME/CFS and MCS symptom burden [see supplements]. Couple both of those realities to the fact that, in my own particular case, a round trip journey of over 100 miles was [and still is] needed to visit the nearest NHS dental practice these days [no, really - thank you Mr Blair!] - and you will immediately begin to appreciate just how dental problems can and do impact, often quite dramatically and, on occassion, in an utterly devastating way, on the life of the MCS and/or ME/CFS sufferer.
End of Chapter 08

To Crisis Menu

          

Chapter 09
The Present Situation
Part One
[1]    The photograph below depicts my bedding situtation as it has been increasingly for the past few months [early spring 2003]. This is now my standard nightly sleeping situation. I have finally given up on trying to find a replacement makeshift pillow as everything I try only makes me very ill very quickly after my face goes anywhere near it [see the Satori-5 supplement "MCS Symptoms"]. "Shed Bed"       [2]    There are only so many consecutive times you can try that sort of experiment on a nightly basis before your mind and body quite literally start to scream for relief from the repeated chemical poisoning and the sheer physical, emotional, and psychololgical stress that kind of situation never fails to produce. I reached that point with makeshift pillows time and time again. A permanent pillow made of solid wood is no joke folks. The incentive to go on repeatedly trying anything to avoid it is very considerable. But you just can't keep on doing it for very long regardless of that incentive. If you went on trying beyond a cerain point then the increasing toxic chemical overload would simply kill you. So now, until I can finally track down genuine chemical free kit [if such a thing still actually exist these days ] - bare wooden slats are my permanent default pillow, and have been for a quite some time now.
End of Chapter 09

To Crisis Menu

          

Chapter 10
The Present Situation
Part One
[1]    The photograph shown in this chapter and the three others following on below illustrate the now seemingly permanent loss of any kind of upper body 'sleep-time' clothing. I had thought things were grim before - but this really does take the buiscuit now. How did things get this bad? Well, there is one particular rule of MCS that seems absolutely set in stone and it goes something like this: The worse things get - THEN THE WORSE THINGS GET.       [2]    I have been trapped for years now in a very chemically hostile environment. In fact as far as so-called 'normal' modern-day life is concerned it is hard to imagine a more chemically hostile environment than that of a brand spanking-new house [sick building syndrome]. For me this brand-new rented bungalow [that, incidentally, and ironically, was allocated on health grounds] has pushed the baseline of my health in general, and my chemcial sensitivity in particular, into a slowly accelerating downward spiral of ever decreasing circles. And although there have been [and still are] peak and trough fluctuations in this overall downward spiral the baseline effect is ever one of less and less chemical tolerance coupled to more and more severe MCS symptoms.       [3]    Where do things go from here? Bare arsed next too? With even less chemical tolerance than before? Of course the worse it inevitably gets, and the further it all runs inescapably on, then the more seriously psychiatric you start to look and sound ["Honestly doc - my underpants really REALLY are making me very ill now - you've gotta believe me doc, you've just gotta!"]. "Rendered Topless"       [4]    Every item of clothing that I now possess rapidly makes me alarmingly ill if I try to lie down and sleep in it for any length of time. Buying new stuff is now pointless. I used to be able to multi-wash the manufacturing chemicals from new clothing and finally get to wear them - but that stopped working some time ago. Probably because nowadays it takes substantially less of any given MCS triggering chemical to make me disablingly ill [ the worse things get - THEN THE WORSE THINGS GET ].       [5]    Secondhand clothing from charity shops [and I have bought a ton of this] used to be of great help to me after a good multi-washing - but only rarely now. Probably for the same reason as the new stuff. I suspect that this is probaly because the charity shops, as their high street profiles become more and more profitable and professionally managed, may now be chemically treating their second hand clothes in some way. Can't have fleas jumping off the goods onto scratching customers I suppose. Whatever the reason though I have not been able to sleep in any charity shop clothing for many months now. And I can sincerely tell you that the gradual dawning of that particular realization on me was a very painful and hope strangling one. Ever decreasing circles...       [6]    After well over half a decade of more-or-less constant exposure to an ever widening range of MCS triggering chemicals - "the worse things get - THEN THE WORSE THINGS GET" remember - I have now almost arrived at what seems to be that inevitable single pin-prick point at the very bottom of that downward spiral - where bare chested shed-sleeping is now absolutely mandatory. Freezing winter weather, however, often sees the regular sub-zero temperatures force me mercilessly into wearing items of clothing and/or bedding over the top half of my body that are very MCS antagonistic and, consequently, only endurable for short toxic periods - just enough to avoid the ever present additional danger of hypothermia. This turns the very uncomfortable and freezing night into a kind of toxic living hell.       [7]    In practice what this kind of harrowing nightly situation actually amounts to is that you are either freezing or enduring the torture of severe chemical poisoning by turns - repeatedly - throughout the night. Suffering first the one then the other, with a short period of overlap during which you get the joys of both together. This often takes you to the very outer limits of your endurance physically, emotionally, and mentally, in a relentless and nightmarishly alternating fashon. Jumping endlessly from the frying pan into the fire then back again in a spirit crushing and merciless health destroying loop from which there is neither the means nor even the hope of escape. To where?       [8]    This 'new', even more "unbelievable", and utterly scandalous situation has developed fairly rapidly over the past 6 months or so [at the time of writing] - becoming a constant default in early February of this year [2003].
End of Chapter 10

To Crisis Menu

          

Chapter 11
The Present Situation
Part One
[1]    First the nylon mat is pulled up over my legs. This constitutes bedding strip number one of three. If I try to use this nylon mat any higher up, either under or over my body, I am quickly rendered alarmingly ill by it [see Satori-5 supplement "MCS Symptoms"] due to some kind of MCS triggering chemical [or chemicals] that are present in the nylon mat itself. "Bedding Strip 1"       [2]    Even keeping this mat as far from my face as is shown above it still makes me alarmingly ill anyway but, at the distance shown, it currently takes most of the night to do so. Of the few items of 'bedding' that I am still presently able to tolerate this nylon mat is the one that is the most toxic to me. I would dearly love not to have to use it at all - but beggars can't be choosers. Without it I would soon succumb to hypothermia. So, no choice really.
End of Chapter 11

To Crisis Menu

          

Chapter 12
The Present Situation
Part One
[1]    Next comes the middle strip of bedding. As can be seen in the photograph above this middle strip of bedding is nothing more that an old padded check shirt which I deploy upsidedown. This bedding item too is chemically toxic to me - but less so than the nylon mat shown in Chapter 11 above. "Bedding Strip 2"       [2]    The old check shirt keeps much needed warmth around the hips and torso area. I used to be able to wear it properly at one time but, unfortunately, this is just no longer possible now without triggering a severe toxic chemical reaction. And you have no idea just how cruely frustrating that is when you are feeling very cold for long periods.
End of Chapter 12

To Crisis Menu

          

Chapter 13
The Present Situation
Part One
[1]    Finally comes the 3rd strip of makeshift bedding. The item in question is an old, slightly padded, cotton/pollyester jacket with front zip and a nylon lining. I use it inside-out and upside-down for maximum warmth.       [2]    Each of the 3 strips of 'bedding' have to overlap a bit otherwise it is impossible to maintain a sufficient amount of body heat. As you can no doubt imagine the combination of thin and easilly broken bed-base slats, a pillow that is made from 2 of the same loose bed-base slats, and 3 items of makeshift bedding in 3 slightly overlapping strips, would all conspire pretty efficiently to make a cold winters night a deeply unpleasant experience - even with the small electric fire on [very expensive to run on welfare benefits] and even if you were in perfect health to begin with. When feeling very ill however, due to chronic and severely disabling illness, even just the simple act of merely turning-over in bed under such difficult bedtime circumstances becomes, in itself, something of a nightmare.       [3]    Having explored every avenue open to me, and having tried every item of bedding and clothing in my possession in every combination, what you see above represents the only alliance of items I could find that struck a survivable [though still deeply unpleasant] balance between avoiding serious hypothermia on the one hand and avoiding being chemically poisoned to death by morning on the other [see "MCS Symptoms" supplement]. "Bedding Strip 3"       [4]    The true story being told in these photographs, and the short videos offered below, is not one based on emotional hysterics. Neither is it one indicative of any kind of psychiatric, psychological, or phychosomatic problem. What these photographs and videos do show you are the tragically inevitable manifestations of a severe physiological sensitivity, often unavoidably developed not just by me but also by an ever growing army of sufferers worldwide, to a wide range of man-made synthetic chemicals - that is being mercilessly and ruthlessly downplayed by the highest levels of our political and medical establishments due to the staggering ramifications of this chemical-industry generated holocost.       [5]    Please, do not simply buy into their lies - nor the misguided opinions of the honest medical professionals that have themselves been hoodwinked by them. Give the matter the benefit of some personal research and some serious independent thought. Yes there are people claiming a chemical sensitivity problem that have little no physiological basis at all to their complaints - but - don't let the suppressors of the truth hide a mile under that inch and blind you to the enormity of what is really going on.       [6]    Remember, we are not just talking here about MCS [EI, CI, TILT]. The toxicity of ubiquitous and, let's not forget, very profitable synthetic chemicals generate or substantially aggravate many serious illnesses - like cancer, ME/CFS, MS to name but a few.       [7]    More on all that a little later though...must move on now to my own 2 homemade video clips which try to show just some of the dire night-time realities of trying to survive in the UK today with severe MCS - in the wake of a dangerously clueless medical profession.
End of Chapter 13

To Crisis Menu

          

Chapter 14
The Present Situation
Part One
[1]    The two short videos that follow - entitled "Wooden Pillow" [Chapter 15] and "Toxic Bedding" [Chapter 17] - display perfectly using "Windows Media Player V9.1" [WMP-V9.1]. They may play fine in other media players too but unfortunately I can't vouch for any others at this time. If you don't already have it you can download WMP-V9.1 from the link given below. Its a very attractive media player, its free - and seems to be very good at doing what it does :) Download the free Windows Media Player 9.1 from Microsoft       [2]    Some practical techy stuff to say here about the video material below: Firstly about the "Large", "Medium", and "Small" resolution versions available. The "Large" file is definitely the recommended one for those wishing to gain the most accurate insight into something of what it is like to have to sleep half naked in a garden shed, on bare wood, in the winter time, while in poor health - often in very poor health. Fortunate broadband visitors will of course manage to download its 13.9 meg size in a blink or two.       [3]    If you are not a happy Broadband browser however and you don't feel up to the "Large" download time then go for the "Medium" version. Quality is reasonable and download time is negligible but, be warned, you wont really get the full impact of the video. Regarding the "Small" download version - unless you have an old slow modem and PC and/or a really bad/slow Internet connection then avoid it like the plague. For one thing the text overlays will be too small to read, as will the useful information screens at the end of each video, and for another the intended sound of a winter storm will have its quality considerably reduced.       [4]    If, despite my trying to put you right off, you still decide to download the smallest of the 3 video files then the "small text size" problem that comes with that can be worked around, after downloading the file, by increasing the video viewing size in your multimedia player from 100% to 200%. This effectively doubles the viewable screen size. The end result of this will be a bit pixelated - but at least the video text overlays, credits, and contact information screens will then be easily readable.       [5]    A quick word here concerning the video sound track: I would recommend the use of headphones with the volume turned up comfortably loud. If your volume is not turned up comfortably loud then you will miss out on experiencing something of the oppressive impact that a real howling storm has on a person suffering chronic illnesses under such scandalous and inhumane conditions.       [6]    Finally, I also recommend "Right Clicking" on your chosen video download. This will give you the menu option of saving the file to your desktop where you can subsequently view it at your leisure, at the proper screen size, hopefully in your favourite viewer [if not then WMP-V9.1 for sure], without ever having to wait or download it again. :) Simply left-clicking on it however may only produce a pretty useless postage-stamp version of the video embedded in the lower left-hand corner of your web browser. And that is absolutely useless and definitely not recommended.
End of Chapter 14

To Crisis Menu

          

Chapter 15
The Present Situation
Part One
[1]    The "Wooden Pillow" video provided below and the "Toxic Bedding" video provided in Chapter 17 both try hard, under very difficult circumstances, to convey to you something of the harsh long-term realities forced onto the author by severe versions of both the ME/CFS, MCS/TILT, and HRS illnesses - and the apathy, suspicions, or sheer disbelief of my local GP's, councilor, MSP, Social Services, and the DLA Welfare Benefit Agency with regard to these very poorly understood modern day plagues.       [2]    However, the illnesses themselves and the almost complete failure of our orthodox medical professionals and social institutions to properly acknowledge, understand, and appropriately respond to them are, it seems to me, nothing more than symptoms of a much deeper, much more fundamental and alarming cause that may represent a possibly unparalleled pathology at the very heart of modern human civilization itself, namely: the almost complete impunity with which very powerful trans-national chemical companies [TNCC's] are 'allowed', by an unholy alliance of bad science, bad politics, and utterly ruthless commercial forces, to pollute almost every single aspect of our lives, our living, working, and recreational environments - perhaps even our entire planet - with extremely toxic, but staggeringly profitable, synthetic chemicals. Video 1 Title Screen Size File Size EDT* Quality Download "Wooden Pillow" 640x480 13.9mb 45 mins Good Save Large 320x240 1.8mb 3 mins Basic Save Medium 160x120 1.1mb 2 mins Poor Save Small [ * Estimated Download Time using 56k modem ] Needs Windows Media Player 9.1       [3]    It seems to me that one of the main strategy's employed to great effect by these TNCC's, at a grass roots level via our medical training establishments [which, I believe, they largely bankrole], to maintain that almost "complete impunity" with which they continue to very profitably poison us, is the vigorously premoted and vigorously defended 'idea' that there is no physiological basis for the "wrecked-health" complaints, emanating ever more loudly [like here], from the growing armies of toxically injured MCS sufferers worldwide. The endlessly repeated mantra here from these TNCC's is that the complaints of genuine MCS sufferers are "all in their head". In other words - that the claimed synthetic-chemical induced physiological MCS symptoms are, instead, actually psychiatric and/or psychological and/or emotional based health problems. In fact they are happy to point the distracting finger of blame anywhere at all - as long as it isn't pointing at them where it belongs. The idea that their toxic chemicals - particularly in completely untested synergystic combinations such as those that we all encounter repeatedly in our everyday lives - might be responsible for MCS [to say nothing here of various kinds of cancer and a whole host of other serious "modern" illnesses] is of course instantly and ruthlessly dismissed by them. Surprise! Surprise! Deja-vu Gulf War Syndrome [GWS] anyone?       [4]    Please, don't get me wrong here. As I have said before I am not for one single moment trying to say that there are no unfortunate people out there who's 'physical illnesses' are indeed "all in their head". There may in fact be a large number of such people. And, I imagine, not just with regard to MCS or ME/CFS either. It is probably true to say that most, if not all, serious illnesses find themselves the focus of these unfortunate people with this particular kind of mental and/or emotional health problem. But, sticking exclusively with genuine MCS here for the moment, to go way beyond that reasonable acknowledgement and take the rather extreme view, as the vast majority of our allopathic medical 'professionals' seem to do today, that all MCS sufferers are in this "mental and/or emotional health problem" category, despite an ever growing body of sound scientific evidence to the contrary [see the "Hot Articles" supplement], simply reeks of either mere passive acceptance of the bought-and-paid-for findings of mercenary cigarette science [funded by you-know-who], or deliberate and dangerous criminal negligence.       [5]    Life is then so much easier of course for the accepting, trusting, and often incredibly busy supporters of this "its all in their head" scape-goat view of MCS that serves the powerful chemical industries so well. These "scape-goat supporters" then have no need whatsoever to find increasingly ellusive time to make any real personal enquiry into this enormously important issue - or even to think about it very much at all. Their choice, if it even occurs to them in the first place that they actually have one, is as simple as it is comfort shattering: Stick with the cosy, don't rock-the-boat official view and be respected, or wake up and smell the decaff - but immediately run into professional hostility and ridicule and all sorts of difficulties with God knows what kind of end results [loss of funding, loss of peer respect, the sack, etc...]. So the vast majority, it seems, simply keep their heads down and their mouths shut - and toe the corrupt official UK party line.       [6]    In response to their suffering patients despairing insistence that all is not at all well - the "its all in their head" supporters simply curl up in their militant, armour-plated ignorance - with seemingly inpregnable skill - and, in the lions share of my experience, remain there with what seems to be a truly fundamentalist zeal. From that point on nothing - AND I MEAN NOTHING - the genuine MCS sufferer can say or do will change that cosy status-quo illusion of theirs one little jot. All paid for by the genuine MCS suffer in terms of shattered health and shattered lives and in many cases - paid for with life itself.
End of Chapter 15

To Crisis Menu

          

Chapter 16
The Present Situation
Part One
[1]    The motivations of these TNCC's to keep right on endlessly repeating their "its all in their heads" MCS mantra are not really hard to find once you actually start looking. How about these just for starters:       * To maintain the status-quo of their staggeringly lucrative multi-billion [or is it multi-trillion?] Dollar/Pound per-anum industries.       * To avoid being sued for "severe damage to health" compensation, totalling more money than even they have ever made - by half the entire planet?       [2]    Much as I would love to I won't stray here from MCS [except perhaps with regard to ME/CFS] into other serious illnesses like MS [aspartame], and Cancers [huge list of know carcinogens], etc, otherwise I would now have to get into possibly the greatest motivation of all driving the evangelical denial that spews from these TNCC's with regard to the devastating health impact they are having on humanity. Namely, the fear of criminal charges of corporate mass murder [and probably on a scale that beggars belief!]. However, here is neither the time nor the place for opening that particular Pandora's Box [see the "Hot Articles" supplement]. Sufficient to say here that there is no shortage of very good reasons why the TNCC's would want to fund our medical training establishments. This gives them great infuence over the spin that is put on everything that is taught in them, and probably also allows them to determine a substantial part [if not all] of the actual syllibus.       [3]    These same TNCC's also fund the lions share of all health related 'scientific research'. This allows them to largely dictate what avenues of health research will get funded and explored [patentable and profitable], and which avenues will not [the unpatentable - like narural herbs, nutrition, environmental health factors, and any research that might end up showing "them" in a bad light]. And please remember this; these TNCC's include the pharmaceutical industries - who make a royal mint [and then some] medicating us through the diseases caused by their non-medical sister companies.       [4]    Between its medical and non-medical halves the TNCC's have a largely unaware humanity trapped in the most immoral and staggeringly lucrative financial pincer-movement in whole of human history. Think about that for a moment. No matter how unbelievable or frightening that rather breathtaking statement might seem - somehow enough of us have to wake up to its terrible reality. And not just in the negative sense with regard to the enormity of its past and present horrors but also to the extrememly positive and wonderous paradigm-shifting potential that this baptism-of-fire