My old school, Armitage Street Junior
& Infants, Manchester, 1955.
My M.E. History.
In the beginning was the darkness...
Born into the slums, and amid the dark, Satanic mills, of Manchester, I think it’s fair to say that, from early childhood, I’ve never been well. Around the age of 2, simultaneous whooping cough and measles conspired to wreck my lungs, the upshot being that I had about 50% normal lung capacity on a good day when growing up, much less on bad days, and a massive susceptibility to respiratory infection. Had it not been for the arrival of antibiotics I wouldn’t be here to bitch about it, as I got pneumonia the way other kids got colds. As it was, it was a close-run thing. The antibiotics, of course, may well have been a factor in my ME, 30 years on.
My old school, Armitage Street Junior
& Infants, Manchester, 1955.
When I was 10, my parents were told that they had to get me out of the smogs of Manchester, or I would certainly die. We moved to Bootle, north of Liverpool, but little did we suspect that it was soon to become the bronchitis capital of the North-west – talk about out of the frying pan into the fire...
As a result of my respiratory problems, I became unable to work in 1982, and apart from a blip or two, have been unable to work since, especially since the onset of ME.
A little back-story...
I was a keen gardener and, in 1972 got myself a greenhouse, from where I kept the garden filled with flowers and veg. Why is this relevant? The pesticide I used for over 10 years – though I didn’t know it then – was organophosphate-based, and has since been banned.
Someone up there trying to tell me something?
In the summer of 1983, hill-walking in North Wales (I was extremely fit - within the constraints imposed by my respiratory condition - pre ME, I was a keen hill walker and backpacker, and I’d been a biker for 20 years, riding 52 weeks a year, whatever the weather), a storm rolled in off the sea, totally without warning, and minutes later I was struck by lightning. Imagine the universe, blazing with white-hot incandescence, dropping on you at the speed of light – it’ll give you some small idea how it felt... A mercifully brief moment of unsupportable agony. It literally fried my feet, so that the fatty pads that should cushion the soles vanished, since when, with nothing under the bones of my feet but a thin layer of flesh, every step has been like walking with a boot full of ball-bearings. It also damaged most of my joints and badly affected my central nervous system. Luckily, I believe it was just the lower-voltage leader stroke that hit me (though lower is relative – 20,000 volts or more ain’t fun); had it been the main stroke – which, for a brief moment, is hotter than the surface of the sun – I’d have just been a greasy patch on the hillside.
One of the biggest problems is that my feet were so badly damaged (and as I've got older most of my joints have followed suit), that for many years I’ve only been able to walk at all by wearing walking boots and heavy trekking socks, to totally cushion my feet.
Bizarrely, there wasn't a mark on me at the time - there is always a "fern pattern" burned into the victim somewhere, but one doctor I spoke to years later said that it can be internal, and the only way it'll show up is at an autopsy - and getting a doctor to accept you've just been struck by lighting with no physical proof is quite impossible.
As impossible as getting them to accept I was so ill, later,
with what eventually turned out to be ME...
ME genesis...
So, I actually first became aware of what was to become ME in the autumn of 1985, when for several days I developed agonising pains in my thigh muscles – not spasms, just pain – completely and utterly disabling. This persisted for about a week, then suddenly stopped. It’s never come back on that scale, but my right thigh, to this day, is painful and often flares into agony totally without notice. Either that or it becomes completely numb – I know which I prefer. This first happened about three weeks after I contracted gastric ’flu, on holiday in Austria.
Mercifully, in the spring of 1986 I had a spectacular remission and a staggeringly fast return to total fitness – it was absolutely amazing and I’d never felt better. I was able to give my wife the care she needed and she, too, began to improve, but it was a painfully slow process. A few months later I crashed in flames and, until very recently, that’s how it remained.
However, also in 1986, I went blind for maybe 10-12 hours, and only regained my sight slowly and erratically over the next few days. My GP at the time became convinced that I had MS, and fired me off to the Neurological Unit at Walton Hospital.
That was a complete waste of time. I had a confrontation with the neurologist over his treatment of the nursing staff - behaviour that out in the real world would see him dragged outside and beaten bloody - with the end result that he, and his colleagues, simply went through the motions. Do I actually have MS rather than ME? I haven't the faintest idea.
During the early 90s I was so brassed off with the almost universal dismissiveness - and convinced that unless I was taken seriously I may well be pushed into another breakdown (as I had been, earlier), that I may not survive. Something needed to be done, and done quickly. I set out to write a comprehensive case history, my intention being to demonstrate that I did, indeed, have MS, and I damned well wanted it taking seriously. At this time, though, ME was coming to prominence in the media; The Observer devoted an entire colour supplement to it, and to several case histories, and I realised, to my surprise, they were describing me, and that my case history was a classic description of ME.
I badgered my GP into referring me to the ME clinic at the Royal Liverpool University Hospital, where it too them less than an hour to reach the same conclusion I had, and at last I had a diagnosis. The downside was that, after a decade of neglect (the diagnosis of ME, in October 1995, was almost 10 years to the very day that the first symptoms appeared), the chances of a cure were, effectively, zero, and so it has proved.
For much of the nineties, and up to 2002, I was entirely dependent on my electric wheelchair (or, rather, a series of them, as the build quality of these things is abysmal).
The pain of ME is absolutely horrendous – there is little that doesn’t hurt, often very severely, at all times. Every joint feels full of broken glass, and my muscles feel as if they’re wrapped in red-hot barbed wire. I have managed to take the edge off this – but very little more than that – with a combination of anti-inflammatories, analgesics and magnesium, but it’s not much fun. I also have Syndrome-X, a sort of pseudo-angina, though how “pseudo” it is when it responds to angina meds, I don’t know. My problem, though, is that I simply don’t know how much of my pain is due to ME, and how much to the lightning strike.
The drugs don't work - not just in song, but in real life too. SSRIs turned me from a normal, easy-going guy into a rabid, aggressive bag of rage, always on the lookout for an argument. Luckily, I noticed in time, before anything serious happened, stopped taking them and was back to normal pretty quickly. Then there's the pain, which goes with me wherever and whenever I go, 24/7 - I even dream about pain. These days I take lots of Codeine, Paracetamol and Naprosyn, a powerful anti-inflammatory without which, in a matter of days, I'm almost immobile. More potent opiates I can't take, because of the depressive effect on my respiration - something I simply can't afford. I take a low dose of Amytriptyline at night to help me sleep; sometimes it even works. The drugs I can actually take for ME are also limited by the drugs I have to take simply to stay alive (sorry if that sounds melodramatic, but it's true); I can't afford the risk of any adverse drug interactions.
Brain fog – which was so severe it came close to driving me to suicide – has, mercifully, mostly faded into history, and I believe the credit must go to a combination of Siberian ginseng and Coenzyme Q10, and I sincerely hope it never comes back. It’s not entirely gone – there are still times when I find myself typing (and talking), scribble, but that’s usually when I’m over-tired. (Update, August 2006 – CoQ-10 doesn’t work , the effects were entirely psychological.)
And over-tired goes with the territory. I had a dreadfully small window of activity during the day - maybe 3-4 hours, after which I'd crash. Over the years I learned that by juggling my meds (I have to take a 14 different drugs), and my supplements, I could stretch that to maybe 5 - 6 hours – even a whole day when things are going well. And this is what many people, sadly, a lot of them in the DWP, can never understand. I take the biggest single dose of meds and supplements at 5 in the morning then, if all goes well I'm ready to face the day by 7 or 8. Or not. Sometimes it just doesn't work, or the timing goes haywire and my energy levels max out around midday, or even not at all, and then I have no alternative but to just slob out for the day, and hope for a better one tomorrow. This is not a recipe for going out to work at the same time every day.
Like almost everyone else, it seems, I went through the usual process of denial by doctors. Even my GP, who knew I was a keen backpacker, wasn’t interested in knowing why I could walk only with the aid of crutches. It took 10 years, almost to the day, before I got a diagnosis of ME, and that only happened because I made so much fuss my GP sent me to the ME clinic in Liverpool, presumably in the hope that they, too, would blow me off. He seemed quite hurt when they didn’t. By then, though, it had already come close to costing me my sanity, and did cost me my marriage.
Like almost everyone, except quacks who know they have the answer, I don’t know for sure what triggered my ME. Was it a life-time’s consumption of antibiotics, the lightning (increasingly, I believe yes), gastric ’flu or the o-p insecticide? Or all of them – or none? Honestly, after all this time, I don’t think it matters. One thing has become clear as time has moved on, and it's that there is a very real possibility that I had ME for as long as 10 years earlier than I thought. No real evidence, but it would account for so much that was wrong in my life during that period.
Recovery? Er, no...
This is me during my remission,
December 2004, at Appledore, Devon.
I started to go into remission in 2001 and, in 2002 I decided it was time to try to wean myself off my powerchair and trying to improve my fitness. Over two years I built up slowly, with one or two setbacks when I overdid it, but finally reached a point where I could walk 5-8 miles. Admittedly, very slowly, and with considerable pain, but it was still a massive improvement. Then I got the idea that I could manage a gentle backpacking trip, so I waited for a suitable opportunity to come along, which it did in the form of a weekend trip to Monyash, in the Peak District.
The Peak District is an area I know very well, having spent an awful lot of my leisure time there when I was fit, and I knew there was scope for several short backpacks from Monyash – I just had to decide which I fancied most. In the event, it didn’t matter. After the train journey, and the 2.5 mile walk from the local bus-stop to Monyash, I thought I was dying. That weekend I never moved off the campsite, except to potter down to the pub to eat, which was a major challenge, but it was that or starve. I still haven't recovered, and my walking ability is still severely limited but, hey, now I have a car, so it doesn’t matter as much as it did.
Update, April 2007. I was prescribed DHC Continus (sustained release dihydrocodeine), in December 2006, with disappointing results. The big problem, initially, was that, at first, on 120mg - the prescribed dose - I was stoned, so much so that I tripped over my own car, which takes some doing. Anyway, I reduced the dose to 60mg, and stuck with that for a couple of months, supplementing it with 500mg of Naproxyn, an anti-inflammatory, in the evening. Bedtime meds were 2 30/500 co-codamol, and 20mg of Amitryptilline.
Eventually I managed to progress to 120mg in the morning. with
no side effects other than constipation, and there things rested, until today
(April 16 2007). Getting fed up with being constipated, I thought I'd give DHC
a miss, and hit the laxatives. All morning, I felt absolutely appalling, fighting
to stay awake. I was waiting for a delivery - new telescope - so I couldn't
go back to bed, and I was watching for the van on the security camera - and
hallucinating vans that weren't there...
It finally filtered through that maybe I'm addicted to DHC, and what I was experiencing
were withdrawal symptoms, so I took a dose and, an hour later, I was almost
back to normal. Hmm... It also explains why I feel better next morning when
I take 60mg at night. I knew addiction was on the cards, but I'd hoped it would
take longer, especially as I'm only taking half the prescribed dose (120mg in
the morning, instead of twice a day). I don't suppose it matters, as I have
to take them - the only worry is that I'll need an ever-increasing dose to get
the same effect, and that does seem to be happening, albeit slowly.
Diet...
My diet, for a long time now, has been as wholesome as I can
make it. I don't eat processed food, with the exception of some canned items
which have been subjected to the minimum of interference. And ketchup (which
is good for you – it contains lycopene).
Cooking has always been a passion (still is, but I don’t often get the
chance to indulge it – cooking for one’s self just isn’t the
same). I was a veggie, with the odd excursion into veganism, for about 18 years.
I didn’t have any particular moralistic position on meat-eating –
I just felt that the whole meat production system was so contaminated that I
wanted as little to do with it as I could get away with. These days, though,
I’ve pretty much reverted to a normal diet – I feel no better and
no worse, it’s just much more convenient. I also believe that assembling
proteins from vegetable amino acids is harder on the body's energy resources
than processing flesh, and that eating meat and fish eases the burden somewhat
- an advantage in ME, I think. I've never seen any medical evidence to support
this view, but it makes perfect sense if you think about it as a mechanical
problem - it's faster to build a wall with large concrete blocks (complete proteins),
than it is with bricks (amino acids). Empirically, too, this is born out by
how much better I feel after eating meat or fish than I do after a veggie meal
If bread is the staff of life, why is someone beating me up with it?
Most people get through a fair amount of bread without ever giving it a thought. I discovered, though, that after my lunchtime sandwich, I'd crash about an hour later, and would be drifting in and out of consciousness (it wasn't anything as pleasant as sleep), for a couple of hours. I put this down to ME and, while it was a huge nuisance, thought no more about it.
Over a period, though, I began to notice that when I didn't have bread for lunch,
I didn't crash, so I began to look for a cause. Talking to my GP accomplished
nothing, and the dietician to whom he referred me had no more idea than I did.
Eventually, I emailed Dr. John Briffa, the dietician who writes in the Observer,
and he suggested that I was probably wheat intolerant.
So I set about eliminating wheat from my diet. I tried a variety of commercial breads, some with reduced wheat, some with none. I got the best results with a well-known brand of sourdough rye bread, but found it depressingly leaden. Despairing of finding a commercial loaf that was both wheat-free and actually enjoyable to eat, I set about making my own, and have been doing so for over two years now. My standard loaf if 60% Spelt and 40% Rye, both organic. I won’t go into detail here, as this is covered on the Bread pages of this website.
Update, April 2007
Currently I'm trying to lose weight, which means no bread at all, and if possible just one meal a day. I know from past experience that I can lose weight doing this, but ME is such a dismal illness that dieting seems to be just one pain in the backside too many, and at those times I'll skip a day. Do I feel guilty? No.
And there, for now, things remain. On the whole, I’m getting worse rather than better, but I choose to believe that this may not always be so. Self-delusion? Well, maybe, but without hope, life with ME becomes pointless and intolerable. So I choose to hope – I can do no other…
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