Gordon McHendry
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HUNTLY
Aberdeenshire
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12th July, 1998
Dear Dr Carter
The DLA benefits to which I have been entitled for the past year (and which I had to fight hard through the appeal system last year to win) are currently due for review. I have already completed and returned the appropriate forms to the DLA benefits office and assume that shortly (if they have not already done so) they will be in contact with you for your own views on my illness(es) - hence my perceived need for this letter.
Frankly Doc, I am very concerned that your 'optimistic view' of my condition, which I have no doubt whatsoever is in error (albeit very understandable error), will, if given unchallenged to the DLA assessment officers, result in the prompt withdrawal of the DLA benefits to which I am convinced I am more than fully entitled. An entitlement I have, as you know, already had to establish through the appropriate, and rather difficult, DLA appeal system. And I have absolutely no wish to find myself having to do so all over again due to a simple misplaced optimism on your part Doc - however understandable. In fact, I would argue that your "misplaced optimism" was/is not only "understandable" but, given an ongoing lack of discussion on the matter, virtually "unavoidable" - as I now hope to show to your full satisfaction.
Please carefully consider the following:
(1) Bill plays rugby every Wednesday night and indoor tennis every Sunday afternoon. He begins to develop Slow-Onset M.E. (for whatever reason). After a time his sport sessions are making him so ill that everyone can't help but notice the drastic downturn in his general health. Finally his sporting endeavours are making him so ill, not just on the day of the actual event but even for days afterwards, that he is reluctantly forced to give up his much loved rugby. The immediate effect of this dire loss is almost miraculous. Now, with no triggering rugby session, he suddenly no longer looks like, and feels like, one of the walking dead on Wednesday nights. He is now no longer whacked out for the next few days either. Even his indoor-tennis on Sunday afternoons has improved to something like his old form and he is not nearly so knocked by it afterwards to boot!. Everyone cant help but notice the 'great improvement' in his general health levels on every day of the week. Every casual acquaintance he has is willing to swear on a stack of bibles that Bill is now looking and performing better than he has for ages now! Yet there has been no improvement. On the contrary the disease process has progressed to the point where Bill has had to finally give up his much loved rugby. Superficially however, what most people will perceive, and continue to perceive, is a very (to them) substantial improvement. Until, that is, the cycle begins again with his Sunday afternoon tennis. Again everyone will notice the unmistakable deterioration in his condition and again they will all notice the equally unmistakable 'improvement' in his condition immediately after Bill implements the gut-wrenching decision to finally give up his Sunday afternoon tennis also. And so on. Ironically, every time the Slow-Onset M.E. process destroys another big chunk of Bills life almost everyone will' see it' as an 'unmistakable improvement'. There is a perverse and very cruel inverse ratio at work at the heart of this illusion. 'They' simply cant see the great losses and the deterioration that brought them about - but they certainly can see the 'improvements'. Understandable? Yes. Mistaken? Absolutely.
Over the past eight years I have lived through the above scenario countless times. And continue to do so still. My latest in a long line of disease enforced losses is the ability to live in my new special-needs housing due to escalating problems with the Multiple Chemical Sensitivities (MCS) aspect of my overall medical condition. Yet despite being forced to live in my garden shed for the past four months I am still greeted by visiting Housing Association officials, who are fully aware of my situation, with statements like "You're looking much better today Gordon..." , because they see you sitting outside your prison-shed, in the garden sunshine, getting a suntan! They just don't see the loss or the suffering that drives it. But they do see the suntan, etc.
(2) Another great irony concerns the relatively recent official acknowledgement of my entitlement to (a) a wheelchair, (b) the mobility component of the DLA benefit and, (c) special needs housing. Now. instead of being trapped in an upstairs bedroom (with the addition of external stairs also) with no wheelchair, and unable to afford taxi's etc., I find that the much needed extra freedom offered to me by all of the above results in an ever increasing amount of illusion of the "...you are getting much better now Gordon..." variety, as neighbours, friends, (and even your GP), see you out, on sunny days, in your wheelchair and/or taxi whereas before you were, for years, largely trapped indoors. The general perception is one of substantial improvement. And yet, again, the improvement that they think they are seeing is a pure phantom. Improved standard of living yes. But not in any way an improvement of ones medical conditions. The new special-needs housing, the new wheelchair, the new mobility allowance, do not, in any way, constitute some kind of cure. They do not, in any way at all, overcome the combined effects of severe M.E., M.C.S., and, I now personally have little doubt, VDU Terminal Sickness to an extent where you can reasonably say that a real improvement has taken place. They just make life a bit easier and give you a much needed bit of freedom - that is all.
An illustrative example - imagine if you will the following: you have been driven out of your house and into the garden shed for the past few months due to worsening MCS, and are then driven out of your garden shed due to (albeit rare) scorching heat taking the garden shed temperature to over 90. Then, being unable to sit in the garden sun any more and having nowhere else to go you get your son to push you, in your new wheelchair (no mean feat in itself), the few hundred yards round to a your new community centre, there to be seen, shortly after, propping up the pool table by your very own GP. (I kid you not!)
Now I ask you, what is he meant to think having seen you bedroom bound and largely bed bound for several years previously? He is going to be thinking "Very substantial improvement..." at the very least. Yes? And yet, again , it is nothing of the kind. The fact that I have been driven out of my home and into my garden shed day and night for months by MCS is not any kind of improvement. The fact that I am then driven out of my garden shed by sheer mind numbing monotony and extreme solar-shed summer temperatures, into my garden chair does not constitute any kind of improvement either - although it almost overpoweringly looks like one. And, finally, having access to both a wheelchair, a wheelchair pusher (my son), and, best of all, a community centre just a few hundred yards down the road, and the fact that I occasionally use all three, does not, and should not, in any way whatsoever, be construed as any kind of improvement in my medical condition.
You are not, I think, aware of this, but I have also managed to make several taxi trips over the last six months to the local Ex-Serviceman's Club and/or Cheers for a game or two of snooker and/or pool and to escape the toxic environment of my home and the monotony of living in a garden shed. And every time I have been there I have lived in genuine dread of you, or one of your colleges, walking in on me mid-game. The same is true afterwards if I feel up to going into Menzies to look over the computer mags (how I miss that) -1 just don’t go (well, I did once - nervously looking over my shoulder a lot). This is simply not right.
The credibility for M.E./CFS, or MCS is very, how shall I put it, fragile to say the least. I know what kind of problems such an encounter would have for all of us but, most seriously, for me. Particularly in relation to benefit entitlement. So strong is the fear of this that (a) I use neither my wheelchair nor my mobility allowance half as much as 1 am able and, (b) when I do use them by choice, or have their use forced on me by circumstances (as above), I cannot relax and enjoy the outing as I should be able to do for fear of banging into any of you lot. I cant imagine things being that way with any other illness. With any other illness people would simply say, on seeing one out and about, "..ah, there he goes, making the best of a bad lot. Good luck to him...". But with M.E. it always seems to come out "...ah, there he goes, he MUST be getting better..". Always, it seems, there is this credibility problem to one degree or another.
(3) Supplements and Alternative Therapies. Magnesium Oxide. Hydrogen Peroxide.
Kombucha Tea Fungus. Uncaria Tomentosa. Green Walnut & Wormwood Formula.L-Glutamine. L-Glutathione Complex. L-Methionine. Coloidal Silver. Melatonin. Dimethylaminoethanol Bitartrate. Phosphatidyl Choline. Large Dose Vit-C. Evening Primrose Oil. Aloedophilus. Methylsuphonylmethane. Antioxidents. Catalase Enzyme Complex. Magnesium EAP-2. Electro Magnetic Therapy. Biofeedback. Sound/Light Machines. Positive Offset Frequency Therapy. Meditation. Positive Affirmation. Relaxation Tapes/CD's.
Some of the above made no difference to me whatsoever. Some made me much worse. And some made me much better - for varying degrees of time before going intolerant to the substance. This latter group has, in the past, also been responsible for generating much misplaced optimism - even in myself. At best they have provided me with a brief holiday in the form of substantial symptom relief. They have however, never turned the course of my medical condition(s) around. The true course continues, as is has done for over eight years now, ever slowly downward.
(4) Another factor which causes much confusion with family, friends, neighbours and the medical profession in general, is the "up" and "down" course of M.E.. This wavy biorhythm-like up-and-down course does not, however, meander across a baseline which is horizontal as one might expect (at least not for me - and I suspect not for Slow-Onset M.E. sufferers like myself). Leastwise not in the whole time I have suffered from it as the disease(s) has/have not yet bottomed out. The only really helpful baseline therefore is a downward sloping diagonal against which, so far, the only really meaningful curvy relapse-remission line can be drawn. This however is never done. Consequently the genuine "ups", as opposed to the bogus improvements already discussed, are given much more attention than they rightly deserve and when the inevitable "down" happens there seems to be a strong tendency to view the cause of that as some kind of lack of motivation on my part, or a return to unhelpful illness beliefs, or some kind of unwillingness to get well on my part, and so on.
(5) Not comparing like with like. When you say to me that you think I have made a considerable improvement you are obviously comparing how I am at that time (better) with how I was at some time in the past (worse). But it seems to me that you do not also include in that comparison the causative factors of the "worse". For example, we both know how bad I was, say, two years ago. If you do a simple surface comparison then you are likely to arrive at the conclusion that as 1 am not now bedridden and calling for emergency home visits every week or so that I must have improved. Not so. The causative factor for my abysmal condition back then was a total ignorance of my growing intolerance to drugs/chemicals. I was in such a state back then because of the medication I was taking and none of us at that time suspected that that was the case - despite the clear warning a year previous with the morphine (dfl 18) episode.
Now I contend that to make a fair comparison between "now" and "then" you would have to fairly evaluate how I would react if I were given the same drugs today as I was given then. I know the answer to that Doc. I would be much more ill today than I was then - and I was in a pretty dire state then. In fact it is my sincere belief that I would not survive such an encounter this time around. Dose for dose. Drug for drug. It would kill me this time around -1 have no doubt about that. Even relatively harmless substances like Aloe Vera Ointment and Magnesium supplements etc. make me very ill now. One simple dose of Aloe Vera Ointment on/in my ass for the infernal fungal infection that still plagues me makes me unbelievably ill? Still can't figure that.
The fact that my illness management is now good enough on both our parts to spare me a repeat of that dire episode in the past does not mean that my actual medical condition has improved. It hasn't Doc - it has actually got much worse. Only wise illness management keeps the worst of that deterioration from my door (albeit a garden shed door).
Another factor responsible, in my opinion, for this 'inappropriate optimism' is the fact that no matter how bad my relapses get now I simply no longer request an emergency visit. The reason for this is because I know that there is nothing you or your colleagues can do to help me through it. A now almost total drug intolerance sees to that. Therefore I just do my best to weather it out myself. Often, I tell you about them when you come to see me once a month but a verbal report obviously isn't conveying neither the reality nor the severity of my situation. If this is going to be an ongoing problem perhaps I should be calling out emergency doctors in the middle of the night just to witness my state and record it in my medical records? Surely then there would be a greatly reduced risk of this problem of inappropriate optimism'.
(7) One final thought on 'inappropriate optimism' and possible causes for it. When I was in the Glasgow Para's (15th) as a young man I developed, in addition to super fitness, a capacity to endure and to suffer both physically and emotionally far beyond statistical norms. Not only did I pass with flying colours the very difficult pre-para selection training but I excelled in some areas (annual award for top recruit in the area of field craft). The military will tell you that you have to be pretty tough to cut that particular mustard. Yet I have repeatedly found myself on the receiving end of condescending medical explanations of how easy it is to "focus on little symptoms and by so doing magnify them". The majority if not all of my health problems have repeatedly been put down to "making mountains out of molehills". Sort of take whatever Gordon says and divide it by 10' kind of thing. My first real disagreement with yourself, right back at the very beginning, was over a similar situation. I was trying to tell you that I was no longer able to walk down to the surgery to see you. I sat in your surgery room and told you that I shouldn't even be sitting there then. I knew that that was true by the extraordinary mental and physical effort I had to make to get there again. I also knew that probably only one person in a hundred was capable of making such an effort. But that is not what you see when you look at me sitting there at the other end of your desk. The degree of suffering which I am relating to you verbally just does not tally with what your eyes are telling you. And whole thing just got worse and worse. The more successfully I struggled with often overpowering symptoms the less believable your profession found the whole thing. It was as if you all reckoned that because I wasn't getting the desired response from you with my previous tale that I was simply dramatising everything more and more. It simply never seems to occur to anyone that rather than making "mountains out of molehills" I might actually have been making molehills out of mountains. I have been. And I still do. Dr Coleman said to me during his recent dismissive appointment with me "You always seem so 'matter-of-fact' about your symptoms...". In other words 'your manner does not tally with the claimed severity/description of your symptoms therefore you must either be lying, genuinely mistaken, or more much more likely, in need of a psychiatric appointment'. Dr MacKinnley said to me many years ago in response to hearing of my horrendous DF118 crisis and the fact that I suffered through it myself for some 9 hours or so without waking my sleeping wife, "Do you realise just how strange that sounds....the worst night of your life and you don’t even waken your wife?" He simply didn't believe it could possibly be that bad if I didn't waken her. It was. I just couldn't bear the thought of her seeing me in such a frightened, dire state. And knowing the DF118 had done it I also knew that any other medication on top of that could possibly just make me even worse - and I was repeatedly making excursions beyond my capacity to endure as it was. So I decided to ride it out myself to the very limit of my strength. Finally, when my wife woke at her normal time in the morning and learned of my state she phoned you out. The rest as they say is history. But this strange 'inverse ratio' continues to this day. Made worse by the fact that the combined symptoms of my condition are so relentless and have continued to slowly escalate over such a very long time that one get used to them to a certain extent and one learns to function through them also to a certain extent. So that what I am describing and what is being perceived by the listener grows even further apart. And if the burden gets so great that I finally collapse beneath it I am, I suspect, merely deemed to be having a hysterical fit having worked my molehill into a bigger mountain than usual.
Any one of the seven reasons given above could, on its own, easily account for the problem which I have described as 'inappropriate optimism'. But taken together the whole greatly exceeds the sum of its parts. That is what I meant at the beginning of this letter when I said that I believed your 'inappropriate optimism' was virtually unavoidable.
Please re-evaluate your own position in the light of the above information. If you wish to discuss the matter further then I would truly welcome that. If, having read and considered all the points I have made above, you still feel unable to actively support my application for the renewal of my DLA benefits then at least consider not actively hindering my application by talking of improvement' to them. Give me at least the benefit of any doubt and the opportunity to discuss it further with you. Because one mention of the word 'improvement' from you to them will, I am sure, be the only encouragement they will need to end my benefit. Time enough to do that when it is clear and obvious that I am getting well - and that is simply not happening yet.
Sorry this letter had to be so long. But this issue is of the utmost importance not only to me but the rest of my family also. I just had to give it my best shot with you. I also need to know that I can go out when able to without constantly raising the spectre of 'inappropriate optimism' and the rapid death of the benefits which I am entitled because of a limited understanding of the dynamics of my complex condition.
Please Doc, if you at all can, free me from these fears and help me to have as full a life as I possibly can with this diabolical disease. I am not a liar. I am not a con-man. I dont make mountains out of molehills. And I am not a psychiatric patient. I am simply very ill with a combination of little understood diseases. I am still getting worse and every aspect of my life has been devastated by it. There is so little security in my life now. I need at least to know that the benefits I am entitled to will actually continue to be there for me and my family until such time as I am legitimately no longer entitled to them - and not end prematurely before then.
Yours sincerely
G McHendry
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