ME/CFS, MCS/TILT/CI, HRS/EI, Alternative Health, and Networking Resources in Scotland, UK

 

           

 

"The recipe for perpetual ignorance is a very simple and effective one: be satisfied with your opinions and content with your knowledge."
Elbert Hubbard

Multiple Chemical Sensitivity

From Personal Experience

                                         

The 'Unbelievable' Crisis Part 1

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[ Copyright © 2000-2004 Gordon D McHendry - all rights reserved ]
[ Web-page last updated: 18.01.04 ]

                                         


           

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Introduction
Thank you for coming
Hi          "To stand a ghost of a chance of telling this MCS story like it really was, and still is, I knew this website section would - of sheer necessity - have to be big. Given the prevailing and quite extraordinary health challenges, the rather incredible domestic circumstances, and an almost total lack of effective medical, physical, emotional, psychological, and spiritual support, this knowledge was something of a last hope killer. When you mostly dont have what it takes to walk to the end of your own little cal-de-sac and back then how the hell can you possibly hope to climb a mountain? Yet having realistically surveyed all my very limited options my only real hope of survival seemed [and still seems] to lie somewhere on or near the summit of that metaphorical mountain - if, that is, it actually lies anywhere at all."          "Franky, the journey required to that possible sunctuary on my metaphorical mountain peak was, on the face of it, an utterly impossible one from where I was standing. And, because I am not yet rendered completely stupid by ME/MCS brain damage, I did know that right from the start. But not to begin the journey at all held the sure-fire promise of a fate quite literally worse than death. So, taking Dylan Thomas's advice to heart I decided to "Rage, rage, against the dying of the light" for all I was worth and so I took the first climbing step, then the next, then the next...and every day, it seemed, sufficient manna fell from Heaven to somehow get me through that days climb."          "Often just producing several paragraphs of Satori-5 material would take an entire day and night of repeated mini super-efforts through a disabling riot of ME/MCS/HRS symptoms. For the most part though you would never guess any of this when reading the final result. Like right now as you read these very words. This is a very big part of the problem with the ME, MCS, and HRS illnesses - the lions share of them are, for the most part, quite simply invisible from the outside. And if you can't see much wrong on the outside then it can't be all that bad on the inside. I mean - not really bad.  Right?  Wrong!"          "What you always have to remember with sufferers from ME, and/or MCS, and/or HRS is that in many ways they are like that archetypal second-hand car that may well be absolutely immaculate on the outside but, in reality, is an utter burnt out wreck beneath the pretty bonnet and engine shell. This kind of car is a complete and utter pig - we all know that - but people buy into them and drive them happily home [if they actually make it that far] every day of the week. Why? Because it simply looks soooo good on the outside that there just can't possibly be anything really seriously amis with it?  Right?  Wrong!"          "If the succession of GP's that I have had over the years applied the same stupid criteria to a second-hand car purchase as they consistently and condescendingly applied to me with said llnesses - and still do despite the ever mounting personal and worldwide evidence to the contrary - then they would all end up spending far more time at their local garage than the local surgery. On reflection though that might not actually be such a bad idea. Do you know that statistical research done on countries where doctors have gone of srike show that while they are out on strike - the death rate actually falls! But I digress..."          "As the written and photographic material for this particular webpage slowly grew, bit by painfully-small bit, it soon became dreadfully obvious to me that some form of efficient web-page navigation was badly needed. After some thought I decided to do "Quick Links" kind of thing for every single paragraph. This I knew would be ideal for ill people, like myself, who perhaps could only read in small amounts as it would allow them to stop and start reading the whole document much more easilly at their own pace. On a purely personal level however the practical "need" for all this was a real sickener. By the time I finally realised the need for such a web-page navigation system it was as if I had finally managed to drag myself on my belly a substantial way up that impossible allegorical mountain only to realise that I had forgotten something absolutley fundamental to even a ghost of a chance of ever making it to the top - making it necessary to go all the way back down to the bottom and restart the whole endeavour from the ground up. This was a devastatingly low point in my journey. If it had all seemed utterly impossible before it now suddenly seemed doubly so."          "In addition to this there was the ongoing need to write all sort of letters in connection with my 3rd and 4th DLA welfare benefit appeals. Often these would take everything I had from the all to frequent "none-to-little" I began each new day with. And I hated that. A sense of moving forward, however slowly, with the story of how scandalously ME/CFS and MCS/TILT sufferers are treated in the UK today is what sustains me. Even a single day without that "moving forward" feeling makes that days considerable burdens all the harder to bear. Winter is coming round again. The clock is always ticking and no matter how tough you are it is simply impossible to go on and on enduring the unbelievably harsh realities generated by the combination of these illnesses amid severely aggrivating health and financial circumstances. Time is quite simply running out - fast. Yet there is still a long way to climb in order to reach that 'peak' - and with no guarantee of sanctuary even then."          "Ater a while, as this section continued to slowly develop, the paragraph link idea too soon began to creak and groan under the strain. There came a point when it just no longer cut the mustard. After passing the 100 paragraph mark the whole thing began to get far too clumsy in both "look" and "feel" - and a sinking feeling of deja-vu crept back into the pit of my stomach. Then, as if to underline the problem, the Google Search Engine finally discoverd Satori-5 and suddenly I was getting between one to two hundred visitors a week. This was the whole point of Satori-5. To bring my scandalous story - and the unsung story of so many other ME/MCS/HRS sufferers - to the unaware public. But I needed them to actually read the material when they finally found their way to Satori-5 - and simply presenting them with a huge wodge of text was not the way to achieve that. Finally I had to confront the cruel and sickening realisation that I would have to go back to the starting line yet again and try to fix the presentation problem from the foundations up."          "I knew that this time it had to be even more fundamental than the last time and, this time round, should really include all the aesthetic upgrade changes that I had in mind too - but had been largely ignoring by concentrating on the written content. This not only made it necessary to descend to the foot of the mountain yet again but also seemed to make the very mountain itself grow even bigger. So back down I went with the idea of splitting the considerable autobiographical material into webpage "chapters". That I reckoned would finally do the trick.!          "At this point I finally give up the last vestiges of worry about whether or not I actually make it to the top of that effort-mountain and now just concentrate instead on simply doing as much as I can, for as long as I can, with the best that I have. The end result of this latest descent has taken some 6 weeks of mild [and very valuable] summer weather [my best MCS time] to realise. It gives me a modular method of website development and navigation that is both efficient and, to my own mind at least, aethetically pleasing - in that slightly "different" kind of a way that I always wanted for it. It has demanded much from little but I am happy with the result. And, more importantly, I hope you are too."          "Despite my best efforts, progress has been torturously slow. This has meant that even before I have finished writing about a situation it has invariably became out-of-date due to further deterioration in my health and/or circumstances. It just doesn't seem to be at all possible to get on top of the situation. So far this has produced two updates in the form of "The 'Unbelievabe' Crisis - Part 2" and "The Present Situation" but again the latter is in need of updating [another "Part 2" probably]."          "Finally, the production of two short ME/MCS awareness videos, showing my ridiculous personal night-time situation [in a garden shed] with these illnesses, used up a great deal of precious health and energy resources and Satori-5 development time throwing all sorts of time based plans right out the window. But I think the end results were worth all the sacrifices and effort. These free videos are available for download either via the Satori-5 "Mission Statement" supplement [accessed from the homepage Quick Links menu], or directly from "The Present Situation" page. In either event they are best viewed after reading all the predceeding material and viewing all the preceeding photographs as context and a sense of circumstantial development is important to understanding the important and devastating realities they struggle to portray."          The text quoted above was written by me in April 2002 and updated/revised in August 2003. After achieving the presentation and navigation goals outlined above I then finally figured out a way to end the one major remaining problem that had bugged me from the very start: text readability on a textured background. As the amount of written material grew so too did the strain on the eyes trying to read the text - even with the "Chapter" and "Paragraph Numbering" ideas in place. The solution I finally came up with offered me the best of both worlds: attractive textured background AND crystal clear easy-read text!          The solution was nested 3D tables. First I had to learn how to html-code them. Then I had an offline test-drive or two with existing bits of Satori-5 - and the results where excellent compared to the best of what I already had in place. After I had experimented a bit more I realised that my solution really was an ideal one for the style I wanted; but the price was unthinkable - it would require having to go all the way back to the very start - yet again - and, once again, rebuild everything from the ground up.          Outside of the actual content itself this "3-D Tables" upgrade would, I knew, finally give me everything I wanted and needed for Satori-5 - if I could only somehow manage it. Eventually, and don't ask me how, I did manage it. The webpage you are looking at now is an example of the end result. It's the best I can do. I hope it is enough. Will you please read my story? Namaste Yours Sincerely Gordon D McHendry
January 2004

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Part One
The "Unbelievable" Crisis
Chapter 01
[1]    The information you are about to be presented with springs out of a very powerful Multiple Chemical Sensitivity [MCS] situation which began in December 1997. This particular and temptingly "unbelievable" tale began in earnest with the provision of a Grampian Housing Association tenancy of a brand new bungalow, custom built for the disabled, with wheelchair access throughout [extra wide doors, bathroom door that opens outwards, etc], and fitted with electrical sockets and light/wall switches at a height easily reachable by a wheelchair bound person [which I'm not]. Suffering particularly badly from Severe M.E. at the time I had experienced and endured some truly terrible reactions to certain medicinal drugs and been made pretty ill by exposures to even small amounts of alcohol, or the fumes from any solvent based products [particularly gloss paints], but I had never even heard of MCS, as a distinct clinical entity, at that particular point in time. However, moving with wife, son, cat and dog, into our newly built brand-spanking-new bungalow was to change all that - and change it big time!       [2]    With the house-moving process finally behind us the chemical off-gassing from the new building materials and new interior decorations of our brand new bungalow caused me one hell of a time both physiologically and psychologically. As the duration of exposure to the chemical cocktail grew so too did the frequency and intensity of the appalling physiological and neurological symptoms I had to endure as a result. Having nowhere else to go I found myself locked into an ever escalating spiral of increasingly powerful, wide ranging, and extremely unpleasant chemical-induced symptoms. At several points the sheer savagery of the physiological/neurological symptoms produced by these off-gassing chemicals got so bad that I knew, without a shadow of a doubt, that if my exposure to the toxic off-gassing chemicals continued for much longer then I would be in very real danger of actually being killed by them.       [3    The realization that the toxic-chemical cocktail in our brand new home would actually kill me if I didn't somehow manage to do something to stop it was a truly horrible one. I was trapped in a building that was destroying my health in a constant and most unpleasant way. With no help at all coming from either the medical profession or the social services, with nowhere else to turn and nowhere else to go, I could only grit my teeth, do everything in my power to minimize the impact of the toxic chemical off-gassing on my system, and hope that the toxic chemical off-gassing process would finally run out of steam before I did.       [4]    Life then became a tactical endurance contest geared towards simple survival. I tried everything I could possibly think of to minimize the drastic impact on my physical health [from the round-the-clock toxic-chemical off-gassing] in the hope of riding the situation out. Leaving all the windows permanently open [not at all pleasant in winter]. Leaving all the internal doors open. Changing the position of my bed. Changing my bedroom. Turning off the gas central heating completely [do you know that radiator paints are deadly?]. Repeated trips to the garden, in all weathers, for that most basic of all needs - fresh air. All these things helped a little and bought me some extra time. But then the 'knock-on' effect of the constant exposure to the remaining chemicals in the floor boards [flame-retardants], wall panels, and so on, plus having to sometimes close windows and doors and run the central heating again to thaw as all out, would soon have me right back in the lethal zone gain.       [5]    Every day - and particularly every night - was physical, emotional, and psychological torture. I am not exaggerating at all about this here. It was prolonged and ongoing torture - pure and simple. No other words for it. And a potentially lethal form of torture at that. These are strong words I know. Can I substantiate or justify them in any way?       [6]    The yardstick that I use to measure any of life's difficulties was given to me by Glasgow's 15th Para over a quarter of a century ago. Having largely grown up on the working class streets of Glasgow to pass 15th Para's gruelling pre-paratrooper selection tests in West Germany when I was 21 - with some rare distinctions along the way - I can assure you that I am no shrinking violet. Measuring up to that particular and incredibly arduous yardstick takes you well beyond the capacities and abilities of the statistically 'average' or 'normal'. Most people will have no difficulty at all in accepting that - as they will have a fairly reasonable appreciation of just how difficult such military training is. This is important here because it gives us a common ground for communication that I can use to convey to you something of what it actually feels like to experience a severe M.E and/or severe MCS attack. As a common point of reference this "pre-para yardstick" [as I shall refer to it from now on], will help make that possible - and later on I hope that it will make a few other important things possible between us too.       [7]    In approaching the challenge of this 'pre-para yardstick' you immediately find yourself plunged into the realms of super-effort. If you then discover, as a great many do, that you are unable to produce super-efforts from yourself either physically, and/or emotionally, and/or mentally, then you simply do not cut the mustard - and you either quit, or they ship you out. If you find that you can produce these multi-level super-efforts but that they don't quite meet the high and exacting standards of the pre-para selection training process - then you don't cut the mustard and they ship you out. If you find you can produce these multi-level super-efforts from yourself and meet the high exacting training standards - but - can't sustain and improve on those super-efforts and high standards over long periods of training time to the actual pre-para selection testing process itself then, once again, you don't cut the mustard and they ship you out.       [8]    The failure rate is understandably very high because the standards they set are very high. As a result, the calibre of soldier produced is also, correspondingly, very high. Nothing puts that 'high standard' into context better than the stark military statistics that show that the SAS recruits more men from the Para's than from all other sources combined. This is all relevant to my M.E/MCS story because it is important for you to know here that I not only cut the mustard all the way through the pre-para selection course - and the long and arduous training that led up to it - but I even excelled in a few areas along the way as well. And afterwards, when I had successfully completed the selection course and returned home from West Germany, I was, without ever having asked for it, invited [in writing] to test for the SAS [also Military Intelligence]. In the end I refused the offer(s) - but here is neither the time nor the place for getting into all that.       [9]    The reason I am labouring all this Para's stuff a bit here is not to blow my own trumpet - but simply to underline, hopefully with a little more street-cred now than before, that contrary to what most of our so-called 'health professionals', [who sadly can't tell their arse from their elbow when it comes to the actual realities of either M.E., MCS, or HRS], would mistakenly have you believe of me - and probably most if not all of other sufferers too - I do not make illness mountains out of illness mole hills. I never have. And I am neither a liar or a con man. Nor do I suffer from any form of learned helplessness> or psychiatric illness. Therefore when I tell you here and now that many of my M.E./MCS experiences were - and still are - pure and potentially lethal torture - you can quite safely believe that they were - and still are - exactly that.       [10]    It is, in fact, these same 'health professionals' themselves who often do a full 180 on that woefully inaccurate "mountains and mole hills" allegation by inappropriately and indiscriminately applying their psychiatric/psychological models [eg; Learned Helplessness] on people, like myself, for whom it simply does not apply. And then, having made that cruel and very damaging 'category' error, they go on themselves to ardently and repeatedly make negligible little mole hills out of the genuine and often very substantial mountains being endured by the 'true' M.E suffer. A similar and perhaps even more confused 'arse-for-elbow' situation also exists among these same 'health professionals' with regard to the even more poorly understood MCS illness - undoubtedly to the great advantage and relief of the very powerful and influential chemical industries. But more on that later...
End of Chapter 01

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Part One
The "Unbelievable" Crisis
Chapter 02
[1]    Using the pre-para yardstick I spoke of earlier I can tell you now, with hand sincerely on heart, and in the full sight of God, that a bad M.E relapse is much more of a trial and tribulation than pre-para selection training. If you add onto that the horrific MCS symptoms of a severe and sustained toxic chemical exposure then, by comparison, the physical, emotional and mental super-efforts required of you to sail through the extremely arduous pre-para selection training and testing processes seem very small indeed. I know this because I have experienced and successfully negotiated both. The combined effect of a bad M.E and MCS relapse crisis is, quite simply, hell on earth. It turns your situation into something that can only be described as 'torture of the living dead'. I know this too because I have experienced it on many, many occasions. And I still do on a regular basis - for the long-term want of the most basic of things that most of us quite simply take for granted.       [2]    As the first M.E/MCS combo crisis gathers pace you quite rightfully start fearing that you are surely going to die from it. Soon however that fear changes as the crisis rapidly develops to an even more powerful fear - and that is the fear that you are not going to die with it. If that doesn't make much sense to you right now then congratulations - because you have obviously managed to get this far through life without suffering to any really great extent - and long may your good fortune with that continue. If, however, you knew exactly what I meant back there then you have my sincerest sympathies - and I know in my heart that I already have yours.       [3]    Life then became a tactical endurance contest geared towards simple survival. I tried everything I could possibly think of to minimize the drastic impact on my physical health [from the round-the-clock toxic-chemical off-gassing] in the hope of riding the situation out. Leaving all the windows permanently open [not at all pleasant in winter]. Leaving all the internal doors open. Changing the position of my bed. Changing my bedroom. Turning off the gas central heating completely [do you know that radiator paints are deadly?]. Repeated trips to the garden, in all weathers, for that most basic of all needs - fresh air. All these things helped a little and bought me some extra time. But then the 'knock-on' effect of the constant exposure to the remaining chemicals in the floor boards [flame-retardants], wall panels, and so on, plus having to sometimes close windows and doors and run the central heating again to thaw as all out, would soon have me right back in the lethal zone gain.       [4]    There comes a point during a long series of repeated and extended toxic-chemical exposures when it becomes crystal clear to you physiologically that continued exposure will soon kill you. You simply 'know' that your body just cannot withstand any more chemical poisoning without either suffering some kind of major collapse - or actually being killed by it. I finally reached that 'knowing' point after somehow managing to tactically survive in our toxic new bungalow for some 3 months.       [5]    The horrendous symptoms I was being subjected to by then were almost constant and their severity was reaching new intensities, almost by the hour, that were going beyond the endurance capacities of our common point of reference - the pre-para yardstick. I knew that if I could not find a way to somehow make it all stop - and soon - that I would die. It was as crystal clear and as simple as that. I reasoned that if I did not actually die right there in my new toxic home then I probably would soon after being removed to that chemical-cocktail factory better known as a modern hospital. I further reasoned that if the actual hospital environment itself didn't finish me off then some kind of well-meaning medicinal drug intervention they would probably want to give me while I was in there, [in their almost total ignorance of M.E/MCS], would more than likely do the trick instead. I realized then, in a very deep way, that there is no safety net - of any kind - when you find yourself walking the high, lonely, and very dangerous, tight-rope wires of the severe M.E and MCS illnesses.       [6]    With no help coming from either my GP or the local Social Work Department - despite repeatedly telling them of my plight and asking, even pleading, for some, I finally decided to blow the last of our savings on the purchase of garden shed from our local garden center and, in sheer desperation, feeling totally poisoned from head to toe and very ill indeed, I crossed my fingers, had it erected in my back garden, and moved straight into it - right in the middle of a freezing early spring. That was in 1998 - and I have been sleeping there, all the year round, and in all weathers, ever since. Often having to spend large parts of the day and/or evenings there too.       [7]    I had thought back then that a few months of sleeping in my new shed would see an end to all the nasty chemical off-gassing that was poisoning our new bungalow. It was, of course, rather unpleasant having to sleep in a garden shed - especially in sub-zero temperatures. Suffering from severe ME/CFS and rapidly growing MCS problems I had been house bound and often largely bed bound for several years previous. To say I was therefore not in the best of health at the time would be something of an under statement - especially given the additional health impact of the chemical poisoning business since moving into our new bungalow. But at least I had a warm bed back then and plenty of warm bedding materials to go along with it, so, relatively speaking, it didn't seem too bad. After weeks of experiencing all the varied miseries of severe toxic injury, night and day, it was just such a relief to be able to lie down and breathe fresh uncontaminated air throughout the entire night. I can't tell you just how good that felt.       [8]    These mini toxic-chemical 'holidays' gave my whole system such a desperately needed break that I found I could then tolerate being indoors for a few hours at a time through the day without being made too ill by it. I knew then that, with the big fresh air break at night, all night, spending most of my time indoors sitting at the open windows, and going out into the garden every hour for 5 or 10 minutes of fresh air, that I should be able to soldier on through the disabling toxic-chemical-soup of the day. My wife and son both hated the thought of having to move house again [4 houses in less than 5 years by then], especially from such a nice new house and, frankly, so did I. The prospect of that had hung over us like the sword of Damocles all through those first desperate months as I struggled like mad to find some way of coping with the relentless chemical onslaught to my whole system. The garden shed - and my sleeping in it - was the only answer to that I could find to that. At the time I had reasoned that if I could just somehow make it through the freezing early spring to the summer then all would finally be well. Boy, did I get that wrong!
End of Chapter 02

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Part One
The "Unbelievable" Crisis
Chapter 03
[1]    Due to the life-saving chemical free nights in the garden shed, [and the numerous fresh-air strategies I employed throughout the day], I was now managing to cope much better, relatively speaking, with the toxic-chemical cocktail that was still constantly off-gassing from our new home. I was, however, still getting to the end of every single day feeling badly poisoned and very ill.       [2]    Often, in fact, the toxic strain of my ME/CFS day would just be so great that I would have to retire for the night to the sanctuary of my garden shed in the early evening, sometimes even in the early afternoon, simply because of the escalating intensity of the MCS symptoms [as previously described] and their often devastating knock-on effects on an already fairly severe ME/CFS illness. And God, how I hated having to go out early into that garden shed. Often I would literally collapse onto my shed-bed and lie there, sometimes in the foulest weather, [which always seemed to magnify the oppressiveness of the situation], and wonder how it was possible to physically go on at all - even if I somehow managed to maintain the will for it.       [3]    At those times, and there were many of them, lying on my isolated bed in the garden shed, too weak and poisoned to get undressed and into bed properly, it often seemed like I had entered another world entirely - a world that seemed, due to the incredibly isolating nature of the M.E and MCS illnesses, to have a population of just one. This strange other-worldly effect was often considerably enhanced when it was raining hard - particularly with a strong screaming wind outside. The sheer volume of the combined noise from the strong wind, heavy rain, and the creaking and groaning from the garden shed, would really have to be experienced to be believed. The whole shed would be buffeted about to such an extent, with it's walls repeatedly bending concave then convex as if it were actually alive and breathing, that I was always amazed afterwards when, once again, it hadn't simply exploded [or imploded] where it stood, or taken off with me white-knuckled and prostrate still inside it.       [4]    I wont go into the whole catalog of chemical related disasters which repeatedly befell me over the first two years or so of life in the garden shed - except to briefly mention a pair of really exceptional events. The first of these involved my wife trying to remove black mildew - on the inside of the shed roof just above the head of my bed - using neat disinfectant! In the end, some two weeks or so of sheer hell later - I had to call in an emergency joiner to fit a whole new shed roof. Second event involved a small garden storage shed which had been moved temporarily closer to my live-in shed. Even though about 6 feet away tins of solvent based products started bothering me - but only when the wind blew from the south. Took ages to finally figure that one out. Both events caused me sheer hell - for long extended periods - and took me to the very limits of my endurance.       [5]    Two and a half years later - in the summer of 2000 - I am still sleeping in the garden shed in all weathers - all the year round. Every time I attempted to move myself back indoors the end result was always the same. I would have to get up in the middle of the night, wake my wife for help, and move myself and my bed/bedding back over into the garden shed due to the sheer intensity of the chemical poisoning symptoms.       [6]    My ancient mattress finally gives up the ghost at this point. I had been sleeping more or less on bare metal springs covered by blankets for quite some time by then and finally it just all got to be a bit too much. So, in the end, I had no choice but to replaced it with a quality new one. Then I discover that despite airing the new mattress like mad - even baking it in the sunshine outside in the back garden for a whole day - I still couldn't withstand lying on it even for a mere 90 minute period! It is at this point that "Flame Retardant Chemicals" make themselves known to me in a new and very major way (neurotoxins - more on that later).       [7]    So - old mattress gone and new mattress totally unusable. Just when I was beginning to think that life couldn't get much worse I find myself having to try and fashion a makeshift mattress out of old sleeping bags stuffed with old blankets and duvets. The end result, while usable, was not very comfortable - and not very warm either. The makeshift mattress was only 2 foot wide and my single bed base was 3 feet wide. This gave me 6 inch channels down each side of the bed that functioned like wind-tunnels when the duvets where pulled over them. All this of course made an already rather difficult and uncomfortable situation considerably more difficult and uncomfortable.
End of Chapter 03

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 04
[1]    Next followed a long series of chemical laundering incidents that, chunk by chunk, deprived me of every single bit of 'safe' bedding that I had [and to this very day I still have none]. First up involved a big late summer laundering of the lions share of my bedding - duvets, blankets, sheets, pillow cases. My wife had washed them in our old washing machine, as usual, and everything was hanging on our large whirly back garden clothes drier in the warm early afternoon sun of late summer.       [2]    At some point in that early afternoon sunshine I had walked from the house to my shed to fetch something and was on my way back when a gusty breeze blew one of my duvets out from the whirly drier smack into my face. Instantly I was engulf'd in a powerful chemical stench that was so overpowering it cut the breath from me. My head instinctively spun away and I rushed on past. In a few quick steps I was back in the kitchen doorway and turning to look back thinking "What the hell was that?".       [3]    Dreading that the chemical stench had actually come from my bedding I headed straight back to the whirly drier which had just stopped turning in the gusty breeze. I grabbed anxiously at the first duvet to hand and sniffed at it cautiously - nothing? I moved along it a bit sniffing as I went - nothing? I spun the whirly drier round and grabbed at the next duvet still sniffing cautiously and my heart sank as I hit a faint but distinct chemical smell. I moved across the duvet sniffing as I went and suddenly hit the chemical stench full on. I swung my head away - my fears now realized. The chemical stench was indeed coming from my precious and newly laundered bedding. Feeling slightly numb I had a clean breath or two then continued carefully sniffing at the remaining bedding laundry to discover that there were bits of chemical stench here and there on several other items too? It seemed, for all the world, as if someone had just sprayed my newly washed bedding with some powerful chemical of some kind? I was dumb founded and, having a good idea of what now lay ahead of me as a result, sicken'd to the pit of my stomach.       [4]    I shouted back into the house for my wife and, as she walked into the back garden to join me, I held out part of the worst affected duvet and asked her to smell it. She too drew her head back quickly after having a sniff at it. I said "Do you smell that?" and she said something like "Yeah, what the hell is it?". There then followed a rather heated exchange while all the possibilities were explored - and mostly discounted. Had she accidently exposed my bedding to something after taking it out of the machine? No. Could her laundry basket have had something in it then? No. Had there perhaps been anything unusual washed in the washing machine prior to doing my bedding in it? No. And so the questions went on - as did the list of negative replies. I questioned everything I could possibly think of. In the end, since it seemed impossible for it to have occurred accidently, there seemed to be no other explanation than that 'someone' had done it deliberately?       [5]    With the post mortem over we gathered up the chemically contaminated items in uneasy silence and I put the worst affected of them [the biggest and warmest duvet] into a bathtub half full of water to steep and rinse the item as best we could. The chemical stench suddenly got much worse when the contaminated duvet was completely soaked in water. Even with the bathroom window open and the extraction fan on I had to keep walking out of the room every minute or so for fresh air - shutting the stench in by closing the bathroom door behind me to try and stop the stench spreading through the rest of the house. Soon, however, my wife was banging on the bathroom door shouting that the whole hall outside was stinking with it too.       [6]    I was feeling pretty ill by then and left for the fresh air of the garden while my wife carried on rinsing the chemically contaminated duvet. God alone knows how many times we both filled the bathtub with fresh water to rinse that duvet. It took a long time before the stench was finally reduced to a faint smell. Then the duvet was transferred to the washing machine and subjected to a further barrage of wash and rinse cycles. In the end neither of us could smell a damn thing from that duvet but, nevertheless, every time I tried to sleep with it thereafter it would always make me very ill - very quickly.       [7]    I still have that damn duvet [and many other items now too] sealed in a black bin bag up in my house loft [lethal atmosphere thick with carcinogenic fibreglass particles folks]. So, if there happens to be a kind chemical lab out there would like to volunteer their services and do a full chemical analysis of my contaminated duvets - to try and find the chemical stuff that just doesn't belong in there - then please, just drop me an e-mail from the Satori-5 webmaster link at the bottom of any web page here? I sure would love to hear from you.
End of Chapter 04

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 05
[1]    Then some 6/7 months ago most of my bedding was rendered useless due to more 'clumsy laundering' by my wife. Finally, some 4/5 months ago the remaining bedding went under similar circumstances. Pillows, makeshift mattress (stuffed sleeping bag), the lot. Then batches of my clothes started to become unwearable due to some kind of chemical and detergent contamination? It is at this point that life truly became unbearable. A full blow-by-blow account of just what that quite extraordinary situation is like throughout a mere one-night period can be found further down this page.       [2]    Meanwhile, all my bedding is finally 'gone'. Most of my clothing has 'gone' too. The small 2-bar electric fire I now have to use in the shed, to prevent myself from quite literally freezing to death, also begins to make me ill (?). With no help forthcoming from any quarter that could end my misery, I finally decided to go public with the whole thing.       [3]    At first I simply started writing (again) to everyone (and their grandmothers) about my plight. Doctor. Social Work Department. Housing Association. Welfare Benefit people. The 25% Severe ME Group. 2 MSP's. I talked about it to anyone who would listen. Local Councillor. Friends. neighbors. Other 25% Severe ME Group members. Some were very supportive and kind. Some seemed just to be going through the motions of what might seem to be required of them. And some were simply not interested even in the slightest. (Special thanks though to Justin, Ray, Julie, Tessa, Sue, Crystal, Elspeth, Jan, and of course my son John, - a big "God bless" to all of you).       [4]    At my request my wife took the photograph of me shown below and identified as "Image No-4". I wanted SWD, and MSP,s to see my utterly scandalous nightly situation. Within several hours of taking that photograph however, and within some 36 hours of my GP complaining of a strong chemical smell in the house during one of his regular home visits, AND at a time when everything was at its very worst, my wife choose too suddenly leave me, in the middle of the night, and without any kind of warning, bringing to an abrupt end some 25 years of marriage.       [5]    While it is now seemingly true that long-term steps are finally afoot :) with regard to solving the "brand-new-house" chemical problems, ie; I am about to be considered for re-housing in an older, chemically inert, house, it is even more true that nothing whatsoever is being done to end the chemical poisoning I endure each hour in the house by day, and each hour in the freezing shed (with no bedding) by night.       [6]    The ongoing toxic assault, night and day, for weeks on end, that then turns slowly into months, takes you foraging well into the realms of the unendurable. Despite this, and despite informing Doctors, Social Work Departments, Consultants, Housing Officials, Local Councillors, MSP's, some many times over, I am, as usual, simply being left to get right on with it, by all parties, until some far away re-housing solution can be finally, and hopefully, worked out, or 'something' can be identified by the Environmental Health people, (who are now being brought in by my Housing Association). And while I am grateful that the Environmental Health people are being called in - thanks to a home visit by my MSP who was shocked by the strong chemical smell present in the house (took him ages he said to get the taste from his mouth), what I desperately need NOW is not to be poisoned and very cold TONIGHT, and TOMORROW NIGHT. I desperately need that basic relief and I need it YESTERDAY. This great need, however, just falls repeatedly on deaf ears. Well, I'm sorry, but I, and many many others like me, have had more than enough of all that.       [7]    I intend to be compliant, silent, and long-suffering about all this Toxic Chemical Injury stuff no longer. I intend now to shout out about the whole thing from as many roof-tops as I can find. And I intend to shout as loud as I can for as long as I can. Not just for myself now but also for the silent and ever growing army of innocent victims who suffer, like myself, from this "Toxic Chemical Injury", at the hands of those vast and life destroying money making machines we call the chemical industries.
End of Chapter 05

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 06
[1]    Like great numbers of people before me and the even greater numbers of people who must, as a result of the ignorance and apathy of our medical professions and governments, consequently and inevitably come after me, I have found and fallen headlong into an incredibly cruel and rather disturbing gap in our commercial, medical, welfare, legal, and housing provision structures. This 'gap' is being deliberately and systematically maintained and sustained, directly in some cases indirectly in others, by the worse kind of mercenary 'cigarette science,' funded by the enormously powerful chemical industry in all its guises, from the truly staggering amounts of money it makes from pumping truly staggering quantities of toxins into every single aspect of our priceless and precious environment. The air we breath. The water we drink. The food we eat. The houses we live in. The furniture we sit on. The clothes we wear. The beds we sleep in. Toxic chemicals are added to all these things. And the list doesn't stop there but goes on and on and, even more worryingly, keeps getting bigger and bigger...       [2]    The men in 'white coats' tell us that these toxic chemicals are 'safe' when used as directed. Individually perhaps - but I doubt even that. Ask them however for the reassuring safety research that shows these declared 'safe' chemicals to be safe in combination - as per the typical daily toxic chemical cocktail we are all exposed to every single day and night of our lives - and what research will they give to you in response to that? None matey! Why? Because the strange truth is that there just isn't any. Incredible - don't you think? Given the enormity of the possible health problems that just might emerge from such ongoing 24 hour consumption of this ever present toxic-chemical cocktail that most of us have no option but to drink. You would think that the matter just might be a little bit important? Just a little bit worthy of at least some honest and decent scientific research? But no research at all? Now - I wonder why that is? Couldn't be that there is a rather gigantic can of very ugly worms there that they would just rather not have opened - could it?       [3]    Do you know what really sticks in my gullet here though? Do you know what really gives me the big time hump about this whole toxic chemical business? It's the knowledge that at one end of this unbelievably scandalous state of affairs we have the incredibly lucrative chemical industries who are poisoning every aspect of our environment and, therefore, us and our children also, making truly staggering amounts of money in the process, and at the other end of this scandalous state of affairs we have their pharmaceutical branches making even more staggering amounts of cash 'medicating' us through our varied toxic-chemical induced illnesses. What a nice 'little' earner! - as Del Boy might say. This Midas-touch loop is so mind bogglingly lucrative and so mind bogglingly immoral that it simply beggars belief.       [4]    Accepted and, paradoxically, often highly respected as essential parts of modern life, toxic chemicals have become largely invisible to us. And, as a result, the insanely greedy chemical industries responsible for all this stuff continue to poison us, and our children, with almost complete impunity. Guess who funds the lions share of all medical scientific research? Guess who funds the lions share of all our medical training establishments? And guess who is largely responsible for determining the content of what is taught in them?       [5]    With the catechism of the pharmaceutical companies deeply engraved in their young, eager, and impressionable medical minds our front-line medical professionals leave the high churches of the chemical industries with their 'training' complete. Clutching a brimming up-to-date drug catalogue in one hand and a prescription pad in the other they sadly function nowadays as little more than soul-less chemical vending machines for the pharmaceutical industries. Calling "..next.." every few minutes they endlessly service the ever growing armies of the 'modern' sick - in ever shortening, efficient, and cost-effective packets of very lucrative but zero-quality time.       [6]    Consequently, what this means for the unfortunate MCS sufferer of today, particularly in the UK, is that unless he or she is 'fortunate' enough to have fallen into a large vat of sheep dip, or some other similar high profile scenario, which is subsequently verifiable by blood testing [and therefor undeniable], you are most unlikely to get any kind of Chemical Injury diagnosis from today's medi-chemical profession.       [7]    If your Chemical Injury has come about slowly by the insidious drip-drip method via countless mini-exposures to countless 'hidden' chemicals in everyday use, in your food, your water, your clothes, your home and so on, where no clear chemical substance can be identified by blood testing, then the diagnosis you are almost certain to get is a psychiatric one - at least in part. And since the vast, and ever growing, majority of the Chemically Injured fall into this latter category the chemical industries can sleep relatively soundly in their evil little beds at night rubbing their monstrously greedy hands with glee in the sure and certain knowledge that the only offer of 'medical' help that the "drip-drip" Chemically Injured will receive, if they receive any at all, will be that of the pharmaceutical industries psychiatric drugs of one kind or another.       [8]    And they also know that once you have that psychiatric label foisted onto you and your medical records then it is almost impossible to get rid of it - and while you have it they know that nobody will ever put much credence on anything you have to say. You know the movie scenario - the hero regains consciousness to find himself dumped in an asylum for the insane by the bad guys, and how, from that point on, it doesn't really matter what our hero says to the sane and 'expert' staff there simply because he now has that "psychiatric label". He finds he has suddenly become a kind of non-person who's every word, gesture, and action is reinterpreted through some kind of psychiatric coloured glasses. Normal communication becomes impossible and no-one believes a single word he says. In short - his life becomes a nightmare.       [9]    Now, I am no hero - that is for sure, but apart from that the analogy holds true. And it is my sincerest hope that the story and photographs that follow on from here will go some way towards giving you some real insight into my living nightmare, because it is also largely the unspoken nightmare of so many other ME/CFS and/or MCS/TILT sufferers too. On the surface our details may differ - but the underlying fundamental realities of our abysmally misunderstood illnesses will be remarkably similar. So, welcome, in what follows below, to something of our nightmare... We need you to know what is happening to us.
End of Chapter 06

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 07
[1]    Sleeping in the shed below, in temperatures as low as 15 degrees below zero, ice quickly forms on your pillow [which in my case is an old jumper] and quickly spreads through your beard and moustache, out over the shed wall in front of your face, and across the entire inside surface of the large 'solar-shed' windows. Your breath, as it billows in great white clouds from your cold mouth, coats everything nearby in a thin sparkling cover of freezing wet ice.       [2]    Soon the ice begins to spread across large portions of the shed roof - on the inside - just above your head. You can actually watch it happening. A little later your water glass, on the nearby file storage cabinet that doubles as a bedside table, soon freezes solid too. Often you just lie there simply numbed. Not by the absolutely freezing cold itself but by the sheer unbelievably cruel reality of your utterly scandalous here-and-now situation. This, you fearfully realize, is simply yet another one of those incredible, stark, and barbaric realities of ME/MCS in so called 'Great Britain' today. "Shed Bedroom in Deep Snow" Photograph 01  Return To Crisis Menu        [3]    To stop my eye-balls freezing solid in my head there came a point, long time ago now, when I had to start wearing a thermalon hat to bed. I would pull it onto my head then roll it down over my eyes and upper face so that only my mouth and chin stuck out the bottom. This solved the "freezing eye-balls" problem and created the "no nose-breathing" problem. For me this was an essential trade. Prior to making it I would wake between 3 to 6 times a night to thaw my eyes out - and urinate.       [4]    I don't know if you have ever experienced the 'joys' of urinating in sub-zero temperatures? And I'm not talking here about the kind of situation where one simply nips outside for a quick pee, from inside a nice and cosy environment, and then nips gratefully back in to the warm again. I agree that that would surely be unpleasant enough but, no. What I am talking about here is being confined to the freezing sub-zero temperatures for a long time before, during, and a long time after the penny-spending. And not just once or twice either. If you have ever experienced this kind of thing - then you have my sincere sympathy and, I'll bet anybody a pound to a penny, I already have yours. If not then let me tell you that, in reality, it is even really much more unpleasant than it sounds.       [5]    My 'willie' and I have endured 5 winters of it - going on 6 now. During that time I have come to strongly suspect that 'willie' has somehow managed to develop awesome powers of tactical evasion - often avoiding all attempts at capture with what sometimes seems to be incredible Ninja like abilities. Some kind of accelerated evolutionary development perhaps due to long term exposure to the cold in that damn shed. While I would grope away in there like a madman, up to my elbow in multiple layers of clothing, dreading the deadly chill every bit as much as 'willie' himself but desperate to 'go' nonetheless, and hissing great billowing white clouds from my breath in a mixture of sheer frustration, exhaustion, and growing desperation, it often just seemed impossible to spend that damn penny without freezing the both of us to death in the process.       [6]    More seriously though, this whole thing would be a pretty grim and humourless affair even if I were 21 again, in perfect health, fighting fit, and back with Glasgow's 15th Para. But struggling to cope with all that kind of thing when you are in your late 40's, disabled with severe chronic illnesses, particularly on the many 'bad' days and/or nights that just keep coming around, is completely beyond any kind of joke. Certainly not something I would recommend to, or wish on, anyone - except, perhaps, for certain members of the chemical industries, the medical profession, the benefit agencies, certain benefit appeal tribunal members, and most members of our so-called government [past and present].
End of Chapter 07

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 08
[1]    As you can see from the picture below my shed-bed base is composed of numerous individual, and rather narrow, wooden slats. With a mattress on top they would, I suppose, do their job just fine because the mattress would distribute ones weight fairly evenly across the thin wooden slats underneath. Without a mattress however the whole situation becomes a very difficult one indeed. And a deeply unpleasant one too. "Mattress of Bare Wooden Slats" Photograph 02  Return To Crisis Menu        [2]    The first time circumstances forced me to try lying down on this bed one of my hands just went straight through one of the wooden slats! On another occasion it was my elbow that did the damage while trying to slowly turn over in the middle of a freezing cold night. Every time you move, even just a little, and no matter how carefully, the slats still creak and groan like an old timber ship at sea.       [2]    Just breathing in and out causes the 2 or 3 slats immediately under your rib cage to rub together with the most irritating squeaking sound for every single in-breath and every single out-breath. But possibly the worst thing of all is that the slats slowly drift apart so that drafts of freezing air constantly breeze up onto you from the small gaps between them.       [3]    Pretty unpleasant - I'm sure you will agree - even for the healthy and able bodied. How about potentially fatal?  Surely Not!  Well, I'm not so sure.  On one particulary grim winters night the breaking of one of those damn bed-base slats could quite easilly have been fatal for me - but more on that later.
End of Chapter 08

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 09
[1]    In photograph-03 below what you see on the bed is my entire bedding kit as it was throughout the whole of the 2001/2 winter [see "The Present Situation" section for update]. The black and white striped object in the bottom right of the photograph is a rolled up woolen jumper that served as my only pillow. I could find nothing else to add to this inadequate item to improve on it nor could I find anything to replace this item with that didn't make me violently ill within the hour.       [1]    The striped makeshift pillow is at the foot of the bed because that is where the shed door is and I have to sleep with my head as near to the partially open shed door as I can get for that extra bit of fresh, uncontaminated, air. If I didn't sleep with the door permanently open, and my head very close to that crucial fresh-air gap in it, then I simply wouldn't be able to remain in the shed throughout the night at all due to the escalating severity of the combined ME/MCS symptoms generated by the small amounts of laundry and manufacturing chemicals present in the only sleeping clothes I could wear for any length of time. "My Full Bedding Kit" Photograph 03  Return To Crisis Menu        [2]    The full bedding kit available to me (half naked now - see "The Present Situation" section via the FPE Menu) was comprised of the following items below:   Cotton Y-fronts.   Cotton vest.   Short sleave'd thermal vest.   4 pair of thermal long-johns.   Cotton shirt.   One neat fitting pair of denims.   One loose fitting pair of denims.   One neat fitting army jumper.   One loose fitting woolen jumper.   Two pair of cotton track-suit bottoms.   One hooded cotton track-suit top.   One grey sightly padded jacket.   One thermalon hat.   A Green sleeveless less body warmer (as duvet for legs).   One black and white striped woolen jumper (pillow).   One thin cotton bedspread (only real item of bedding).       [3]    The clothes list above might seem a lot and seem more than adequate for keeping you warm in even the coldest of weathers but its not really nor does it keep you warm when lying still in the one place for long extended periods. Up and walking about outside it would be just fine - even excessive - but lying still in a small freezing shed with the door permanently open is, I assure you, an entirely different kettle of fish. If you don't belive me about this then try it out for yourself. You'll find I'm right. If you die of hypothermia though don't say I didn't warn you :)
End of Chapter 09

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 10
[1]    What I would like to try and do here is convey to you something of what it is like to have to spend just one single winters night in a garden shed, in sub-zero temperatures, when you are ill, often very ill, with Severe ME/MCS. If, while reading what follows, you are tempted at any point to shake your head in disbelief and think that I must surely be exaggerating the reality of the situation, then please, let me reassure right now that, in truth, the opposite is actually the case.       [2]    I am not mentally ill either or in any way psychologically umbalanced - although looking at the picture above, and considering the claimed reasons for the extraordinary conditions I am living under, you would be forgiven for quite easilly thinking that I was. This is a big part of the whole ME/MCS nightmare; due in no small measure to the highly influential and incredibly arrogant UK psychiatrist Prof Simon Wessley and his "school" of misguided followers [for a damning critique of Mr Wessley's 'work' see the 2nd Professor Hooper link at the end of this paragraph ]. ME/CFS and MCS/TILT are REAL physiological illnesses - pure and simple. No matter how much time, money, and effort the "Wessley Scholl" and its paymasters put into trying to convincing you otherwise these illnesses will continue [for many but not all] to remain REAL physiological illnesses. Don't let them sucker you into believing otherwise. Please read the following articles: Sheila Bastien Ph.D. "Multiple Chemical Sensitivies (MCS): ..." Prof Malcolm Hooper: "What is ME? What is CFS? Information for Clinicians and Lawyers" Prof Malcolm Hooper: "The Mental Health Movement: Persecution of Patients?"       [3]    In America, where record numbers of people across all social classes, ages, and ethnic groups are going down with the MCS illness, they call us the new homeless. The multi-national medi-chemical companies responsible for this modern man-made plague - along with the various government officials and departments that allowed this to happen [and do so still] - will go to no end of trouble and expense to convince you that illnesses like ME/CFS and MCS are nothing at all to do with the very profitable and largely untested proliferation of their toxic chemicals: that any such complaints, even about their completely untested synergystic effects, are "all in the head". Do not let these pseudo white-coats and treacherous authority figures sucker you into believing any of that utter nonsense. What follows below are some of greatly suppressed real-life physiological realities of their staggeringly arrogant, incredibly lucrative, and health destroying lie. "Like a Homeless Tramp" Photograph 04  Return To Crisis Menu        [4]    My words here can never hope to convey either the breadth or the depth of the intense second-by-second misery produced by the ongoing Severe ME/MCS experience embodied in Image No-4 above. Even if I had Steven Speilberg like talents and could skillfully present to you the realities of Image No-4 via film, in full technicolour with Dolby Surround-Sound, and a substantial special effects budget for portraying to you something of the startlingly vivid, bizarre, and strangely disturbing dreams which, [when you are eventually fortunate enough to achieve sufficient length of sleep to produce any in the first place], often accompany severe and ongoing chemical poisoning of the brain, while I would indeed be able then to take you much closer to the actual reality of the situation being described here, the huge gulf between mere film (however good) and actual experiential reality would of course still remain. That said, lets give it a go...
End of Chapter 10

To Crisis Menu

          

Part One
The "Unbelievable" Crisis
Chapter 11
[1]    Outside the world is white with snow again and, to make matters worse, the wind is getting stronger. The falling snow has now largely turned to hail stones which are being pushed into noisy drifts in the various corners of the back garden. It is late evening and the day has been a typically long and difficult ME/MCS one. Soon it will be time to brave the blizzards again and head over to the back garden shed for another cold, uncomfortable, and poisonous night of regularly broken sleep. As usual your heart sinks at the prospect. "Freezing Shed Bedroom" Photograph 05  Return To Crisis Menu        [2]    You think back over hundreds of long and very difficult nights, many of them just like last night, that punctuate almost half a decade of sleeping in that shed and, knowing you have it all before you again tonight, wonder just how many more nights you can possibly survive like that. Waves of sickening MCS symptoms and intense ME/CFS fatigue wash over you more powerfully than ever now and the strangely poisonous flu-like aching in your whole body absolutely insists that you must lie down now. But you know that simply isn't possible just yet.       [3]    Because of the freezing winds today the house windows and doors have had to be kept more tightly shut than usual. Consequently the total burden of both MCS symptoms and ME/CFS symptoms are considerably greater and much more intense than 'normal'. You feel unable to breathe properly. Substantial changes in the usual rate and rhythm of your heartbeat force themselves into your awareness through the permanent background fog of ME/CFS and MCS symptoms. You know you can't stay on your feet for much longer now so, driven by sheer necessity, you start the usual pre-bed rituals as best you can - toilet, locking up, closing windows, and so on. The almost permanent ringing in your head suddenly becomes much louder and your brain, despite feeling exhausted and burnt out, rapidly begins to get more and more 'hyper' and agitated as your exposure to the toxic, indoor, new-house chemicals starts taking you, once again, over your body's tolerance threshold and well into the red.       [4]    Feeling pretty weak and ill now you know that you can put off leaving the warm but toxic house no longer. You simply have to get outside now and well away from the cocktail of toxic new-house chemicals and past experience urges you to do that - fast. You desperately need fresh uncontaminated air, you desperately need to lie down, and everything in you screams of the need to do those things - now. There can be no more stalling. No more fighting against it. No more putting it all off. That dreaded time has finally come again, like it does every single night, for you to head over, regardless of how bad or ill you feel, to the garden shed once more - for yet another long, cold, poisonous, and very uncomfortable, winters night.       [5]    As you open the house door into the freezing back garden you already feel very weak, poisoned, and a bit faint. The biting cold wind hits you fresh in the face like a sharp smack and as you look across the deep snow and hail of the back garden - to the shed - something turns over deep down in the pit of your stomach at the mere thought of spending another night in it under such harsh winter and health conditions. But there is nowhere else to go - so you know you must.       [6]    With an empty plastic milk bottle doubling as a portable toilet tucked under your arm, you grit your teeth, step out into the freezing night snow, and trudge your exhausted way over the buried pathway to the back garden shed. A foot and a half of drifting snow and hail covers the bottom of the shed door again and you have to slowly dig it free with your feet. Then you find that the metal sliding-bolt locks are frosted onto the shed half-and-half doors again too. So, using your fingers and a small screwdriver you carry for just such difficulties, you have to struggle in the bitingly cold wind to free them before you can finally haul yourself gratefully inside - ill, shivering, and weak with ME/CFS exhaustion and the effects of prolonged and ongoing chemical poisoning.       [7]    It isn't freezing in the shed now because you came over about 2 hours earlier, through a blizzard of snow and hail, and switched on the small 2 bar electric fire. Even so it is still not exactly what you would call warm either - [with such a large area of window glass for such a small shed the heat just dissipates almost as quickly as you generate it]. Sitting down very gently on the bare wooden edge of the shed bed base, still shivering, you note that your boots and the bottom of your trousers are covered in snow so you slowly brush as much of it off as you can manage. The shed floor around the door where you just entered is also covered in snow now too - but there is nothing you can do about that.       [8]    Still shaking with the cold, feeling weak, exhausted, and chemically poisoned, you huddle over the small electric fire. With head in hands you try to rest as best you can while you wait to heat up. And while you wait - you hope. You hope that the sickening waves of ME/CFS fatigue will soon pass. You hope that the swimming, jittery, hyper feeling in your ringing brain will soon pass, and you hope that at least some of the myriad of ME/CFS and chemical poisoning symptoms will pass too. And amid all your hoping you also know, only to well, that you have to try and get at least reasonably warm again before trying to lie down on the almost bare wooden bed base - otherwise you might never really heat up to bearable levels at all - all night long. So you keep still, and you wait, and you hope.       [9]    After a while the intensity of your aching and discomfort starts to slowly and mercifully diminish and, huddled as close to the small electric fire as you can get without spontaneously combusting, you begin to feel comfortably warm again. So now, finally, it is time to start getting into bed - or more accurately onto the bed, as there is nothing really to get in-to. And you know, without a shadow of a doubt, that it is going to be yet another long, cold, poisonous, and extremely uncomfortable ordeal of a night that lies ahead. Again, something deep in the pit of your stomach turns over.       [10]    Day clothes are now slowly and mechanically replaced by the night ones [see clothes list above - related to Image No-3]. This can often be an exhausting and time consuming business with frequent 'rests' being needed both on removing the day clothes and in redressing in the night ones. Pauses are also needed, during this nightly undressing/dressing procedure, for quick re charges of heat at the small electric fire. Footwear is replaced by several pairs of thick woolen socks. Finally, with your bed-jacket and hat on, you begin to lie down - very carefully - along the outer edge of the bare wooden bed base. This accomplished you then sort of gently roll inwards towards the middle - hoping as you go that bits of you don't crash through the bed base slats as they squeak and creek like mad with every move you make.       [11]    Already you can feel the cold take hold on your face because you are no longer very close to the small electric fire that now glows reassuringly, if not very warmly, in the semi-darkness of the snow covered shed. The bed base slats creek threateningly above the sound of the wind as you gently fidget this way and that trying to squeeze every last modicum of relative comfort from a seriously comfortless situation. When the fidgeting and the creaking finally stop a strong wave of physical relief runs through your exhausted and chemically stressed body at your sudden motionlessness. Gratefully you ride with it as an involuntary gasp of "aaahhh" escapes from your mouth before you can catch it - leaving you wondering if any of your near neighbors heard it above the sound of the freezing night wind.       [12]    As transient as a shooting star the welcome feelings of physical relief, produced by your sudden and long overdue motionlessness, are soon completely gone, and the full burden of your daily accumulated ME/CFS and MCS symptoms close around you again like a thick toxic fog. Slowly, and with awareness, you take several long, deep, and rhythmic breaths. You know, in as much as this is possible under such scandalous circumstances, that for sleep to become a possibility both body and mind will have to be substantially stilled now from the ME/CFS and MCS storms that are presently rampaging through them. Made worse, seemingly, by the sudden darkness and relative quiet of the night - in which the myriad of miseries that plague you often seem to expand alarmingly, completely unhindered and undilulted by any of daytime's numerous and often merciful distractions.       [13]    As you lie there on the hard and fragile bed base in the semi-darkness, padded out with clothing so much that your blood flow is constantly being restricted to both your arms and hands, you can feel the wind and the occasional bouncing piece of hail on your face as you look up and out through the partially open top half of the garden shed doors - into the cold and windy winter night weather. </