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

 

           

 

"I never let my schooling interfere with my education"
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Multiple Chemical Sensitivity

From Personal Experience

                                         

The "Unbelievable" Crisis

Part Two

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[ Copyright © 2000-2004 Gordon D McHendry - all rights reserved ]
[ Web-page last updated: 11.02.04 ]



           

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Namaste

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Introduction
Thank you for coming
Hi          The six photographs presented below were taken in December 2002 as an update to those already online in Part One. I had hoped to have completed Part One [The "Unbelievable" Crisis] before that but the truth is I still haven't managed that and it is now August 2003. Things just keep deteriorating faster than my limited health resources will allow me to adequately record them here. However, despite all the odds against it, I am still managing to slowly make some solid progress overall nonetheless.          Originally I had intended to provide a substantial written explanation to accompany each photograph but now I reckon I should skip that, at least for the time being, and get on with the tasks of trying to finally finish part one and then to try and catch up to my present day situation which is worse now than anything in the photo's below. This will require yet another "Part 2" - this time for "The Present Situation" page.          The white t-shirt you can see me wearing below was, by then, the only item I could wear on my upper body for sleeping that would not poison me before morning. Same with the black jacket I use as a top-body duvet. Although I could get away with pulling it over me [but only for a while] I could never actualy get to sleep with it on. If I tried this I would be ill within the hour and very ill within 90 minutes. The two items covering my legs and hips cannot be used any higher on my body, no matter how cold it gets, without sending the MCS symptoms soaring.          So, in summary: gone are the wooly jumpers, the shirts, the thermal underwear, the padded grey jacket, all the stuff I could wear at night as per the photographs in the previous "part one" section . At night, in the shed, survival is only maintained by making extensive [and very expensive] use of the small two-bar electic fire. In that confined space, this also makes me very ill by morning - and often well before that. Fuel bills rocket to over £100 per month [update: now over £110]. Thank you for listening Namaste Yours Sincerely Gordon D McHendry
August 2003

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Chapter 01 Chapter 02 Chapter 03 Chapter 04 Chapter 05 Chapter 06  MCS Symptoms   S & A Technique   Medical Letters
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Chapter 01
The "Unbelievable" Crisis
Part Two
[1]    The rolled-up object at the head of the bed was the very last of my makeshift pillows. As the MCS continued to worsen with repeated, long-term exposure to triggering synthetic chemicals, even this hopelessly inadequate but desparately needed piece of bed kit starts to make me ill too. Loosing it might not sound like such a big deal but for me it was. When it finally had to go my spirits plummeted and the degree of physical discomfort climbed to new heights. "Better than nothing: A Makeshift Pillow"       [2]    What can be clearly seen in this photograph is how the loose and creaky bed-base slats drift apart. By morning, after a night 'sleeping' on them, they are all over the place despite repeatedly pulling them together throughout the night. Also clearly shown here are the folded nylon bed mat and small brown cotton sheet which I use to keep my hip off the wooden slats. Both these bedding items make me very ill very quickly if I try to make use of them any higher than hip height - and even with the restricted use I make of them they make me ill anyway after about 4 or 5 hours.
End of Chapter 01

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Chapter 02
The "Unbelievable" Crisis
Part Two
[1]    Makeshift pillow is now two loose bed-base slats atop one of the usual bottom ones. Unless you have actually tried it you wouldn't believe just how impossibly uncomfortable that is. Especially when you are feeling very ill - which is often with ME/MCS. By morning you body and face are deeply creased with long straight lines where the wood has cut into your flesh. "Better than nothing: A Solid Wood Pillow"       [2]    The "wooden pillow" situation has now been running for some eight months now at the time of writing [Aug 2003], and there is now a free short video available [in three screen resolution sizes for easy download] called "Wooden Pillow" which gives some insight into this rather harsh situation. Download links for this video [and another called "Toxic Bedding"] can be found in "The Present Situation" page, or alternatively from the homepage "Mission Statement" supplement. A link to the Microsoft website is also provided for downloading the free Windows Media Player 9.1 that is necessary to view the short video films.
End of Chapter 02

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Chapter 03
The "Unbelievable" Crisis
Part Two
[1]    This is what it looks like trying to use a wooden pillow. In use the two wooden bed-base slats drift apart with every small movement of your head and, as it's so damned uncomfortable, you tend to move your head or face about quite a lot. Often in the middle of the night the top slat falls off the bed altogether with a horrendous clatter! No happy memories here at all so forgive me if I don't appear to be a happy chappy in this one. "Finding any kind of comfort is not easy"       [2]    Pins and needles in the hands and arms are an ongoing major problem in this kind of situation. Your face gets pretty red and sore accross the cheekbone area too and your shoulders go numb repeatedly throughout the night. You have to be very tired indeed to be able to sleep at all - and even then the sleep only lasts for short periods as serious discomfort forces you awake time and time again to carefully turn over while trying not to push a hand, a foot, or an elbow through one of the thin bed-base slats. Get up time, when it finally arrives, finds you aching from head to toe and suffering badly from the chemical assault you have endured all night long.
End of Chapter 03

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Chapter 04
The "Unbelievable" Crisis
Part Two
[1]    Could you sleep like this? How you think your face, neck, and body would feel in the morning - even after just one night? Then imagine well over 200 nights like that in a straight run - with no end in sight to it even then! And I should point out here that those 200 nights are in addition to almost a further half-decade of sleeping in that same shed, in all weathers, all the year round, and while in a state of very substantial chronic ill health throughout. "Imagine having to sleep like this"       [2]    The "Medical Letters" supplement [available from the Crisis Menu above] will give a fairly detailed account of my repeated attempts to obtain some kind of medical and social services help with my extraordinarily harrowing situation - which was, and still is, to quote my largely useless [and now ex] GP - "unbelievable" [hence the title].       [3]    Said "Medical Letters" supplement presently contains about 18 documents but many more will [assuming that I do actually make it through yet another even more difficult winter] be getting added over the course of the next few months. At present the documents available there are outgoing ones. The incoming responses - on those rare events when I actually received one - will be added in due course.       [4]    When that has been achieved I will make a start on the "Other Relevant Correspondence" supplement. This will be another very substantial but very worthwhile undertaking and will show all my attempts to inform and seek help from MP's, Councillors, Social Services, Local Housing Departments, and more recently - in sheer desparation - solicitors now too. Finally, this "Other Relevant Correspondence" supplement will also cover written support from familly, friends, and neighbours, who are all only too aware of scandalous situation I am trapped in and are willing to testify to its reality in writing.
End of Chapter 04

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Chapter 05
The "Unbelievable" Crisis
Part Two
[1]    Sleeping on my back or stomach has always been just about impossible for me. I am a side-sleeper pure and simple. I also have fairly broad shoulders for a skinny six footer and that makes it all the harder to cope with that damn wooden pillow. The position you see me in above is about the best one I could find to make short bouts of sleep an eventual possibility. "About as comfortable as it gets"       [2]    Splinters are a bit of a problem when you have to sleep like this. Mostly I get them on my hands - usually on some finger or other - but I have also had them on the arm, body and even my face. Noise too. Every move - and often every breath - makes the bed-base slats creak and squeak often stretching your patience to the limit. It is not that these things are substantial in themselves but, when added to all the other problems that make up my whole ME/MCS package, they sometimes feel like they could well be the proverbial straws that finally break the camels back.       [2]    I have forgotten what it feels like to be warm and comfortable at night. I have forgotten what it feels like to sleep soundly and wake feeling snug and safe and refreshed. I have forgotten what it feels like just to breathe night air that does not feel like black toxic smoke in your chest. I often try to remember those nice things while I lie there waiting on the mercy of unconsciousness. I can still conjure up images of them - from over 6 years ago - but its like looking at scenes from a bad TV movie. I can't feel any of it. I can't remember the "feeling" of any of it. Just empty echo's - that I then try to flesh out with imagination. And sometimes, if I'm lucky, I finally fall asleep among those precious approximations - oblivious at last to the realities of my "unbelievable" situation.
End of Chapter 05

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Chapter 06
The "Unbelievable" Crisis
Part Two
[1]    The 'bedcovers' you see below represent every itme I was then able to use [even less now]. The jacket over my feet and lower legs was the most toxic to me of the three visible items and therefore had to be kept the furthest away from my face. Next comes a padded check shirt that covers my hips. Finally, a black quilted jacket covers my shoulders. And that is it. The full bedtime kit. "Putting it all together - the night begins"       [2]    When I first got this jacket from one of the charity shops [I used to haunt them like a ghost] I multi-wash/rinsed it without detergents and found that I could, miracle of miracles, actually sleep with it on! This was an almost unprecedented surprise and a pure unadulterated luxury for me. Not only because it kept me much warmer but, because it was slighly quitlted, it also functioned like a thin mattress. After three nights of blissful use however I started to get the usual MCS symptoms, mild at first, but by night five it was impossible to wear it lying down at all due to the violent severity of chemical-injury symptoms. Pulled over my shoulders though, with none of it below me, it continued to serve me well. But only for a further short while...       [3]    By the time I finally haul myself upright in the morning [or afternoon] to get dressed and leave the shed I am aching everywhere. There is a strong sensation of oxygen hunger and of having been poisoned by some kind of toxic gas. My head is filled with the sound of loud metalic ringing and feels like it's spinning and vibrating. Thoughts race autonomously and unstoppably through my brain and I have to struggle to think and function through it. If ever I was to be forcably injected with a large dose of some deadly toxic chemical straight into a main artery I imagine it would feel very much like that little lot. Getting dressed is a battle against weakness, nausea, and falling over. You feel drunk and/or drugged - but in the worse possible way.       [4]    The overall sensation is a deeply unpleasant but ultimatley unexplainable one beyond saying that it is connected to a gut conviction that your body and central nervous system are chemically and electrically "out of control" and hovering near the point of certain breakdown. Good morning campers...rise and shine...So you struggle out of the shed in fast slow-motion and into the fresh garden air gulping as much of it down as your greedy lungs can manage. You squint at the sky and try to get a handle on the weather. Another day gets ready to start - and come tonight you get to do the whole wretched thing all over again...and again...and again...and again...
End of Chapter 06

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