Who am I?
The ME/CFS Page
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Welcome to my Web site!
My Life has lately been dominated by an illness called ME (Myalgic Encaphelitis) in the UK or CFS (Chronic Fatigue Syndrome) more commonly in the USA
The dominant symptoms are profound tiredness, mental confusion, and for me, severe headaches
I was first affected in 1985 and it took a year before I could do a full week's work. I managed to work until 1997 but another attack in March has left me too ill to work since then
This is a brief résumé of the way this illness has affected me.
1985: The First outbreak: A year of near despair
1986-1997: A period of low-grade headaches; relatively successful jobwise but with a steadily lowering lifestyle and expectations
1997-now:Incapacitated with ME/CFS
2012 - an addition: Diabetes II
The "Coping Strategies" Section gives a brief explanation of my personal responses and coping strategies to this illness with the hope that it may be of help to others.
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CFS/ME Personal History:
I became ill in January 1985 with ‘flu type symptoms and extremely severe headaches. Unlike ‘flu however, it did not get better in a few days; rather it got worse. I was confined to bed, dosed with antibiotics and very strong painkillers. The bathroom was downstairs. I had to rest on the stairs both going down and coming back, I had no energy at all. After four months I was able to get up for a few hours and began attending a consultant for tests.
All through that summer the pattern was that I went to hospital; they would do some tests and arrange an appointment in 3 weeks to discuss the results; they would ring me about 10 days later to say that the tests indicated severe damage to.. e.g. my kidneys .. and demand that I attended the next clinic; there they would do more tests. I say ‘e.g. my kidneys’ because each time it was something different, each time, whatever had been the problem last time was OK, each time the problem was somewhere else. Also; all through this summer I had ‘good’ days and ‘bad’ days in terms of severity of headaches and energy levels but it just so happened (read into it what you will) that my hospital attendances were on ‘good’ days.
Eventually, in November, I attended a clinic on a ‘bad’ day. The consultant then admitted that until that day he had not really believed I was ill; that I had what was called ME. (myelalgic or myalgic encephalitis); that it was untreatable and that he could do nothing for me.
I, of course, read up all I could find out concerning ME, post-viral-fatigue, etc. Generally; that it is an illness that occurs in geographical clusters, that no-one has any idea about its causes, but that it has been known for decades under various names. There is a catena of symptoms, which always include excessive tiredness; – often in particular parts of the body, that may or may not work properly, mental confusion and diminution of mental speed and ability; and pain, often localised and sometimes headaches. There are many other things that can be wrong.
For instance for me, apart from the tiredness where I just cannot climb another stair, I can get intense burning pain in any muscles that I use even reasonably but for too long. How long is 'too long' depends on the day and can be as little as a couple of minutes. I have lost control of the corners of my mouth and anal sphincter muscle. Many people talk about ‘brain like porridge’ – I’d prefer to describe it as 'brain like custard' – you can be stirring custard and the track of the spoon is there – but quickly fades out. I lose track of what I am saying in mid sentence. I cannot feel anything much below my middle. I can react to my own body proteins – a shaving ‘nick’ can come up like a bee sting. And the headaches are permanent. (like I can remember an afternoon in August 1996 when I did not have a headache) At the time I am writing about the headaches were low-back of head and upper neck, continuous low-grade pain with occasional really bad front headaches where I could not think or drive. I say they were low-grade headaches but that was because I had learnt to exercise considerable mental control over them.
One of the things that was then ‘received wisdom’ was that this illness was not progressive, patients did not get worse, in fact most slowly got better. Certainly I was either getting better or managing to cope with it. I had managed to do a couple of day’s phone support in the July, about a week’s work in September and by November was working at something in spells of two or three days at a time with two or three days in between.
In February 1986 I managed to do 3 full weeks work but then had a rest of about two weeks before I could do anything else. I decided to try and work from home (actually in a caravan on a friend’s land about 2 miles away from home) and was slowly building up a living; mostly doing phone-line support for the old 8-bit Superbase and testing the new 16-bit Superbase. As that was released late 86 into 87 I became almost full time as the support person. In 1988 the firm (PSL Ltd) took me back on the staff full-time. I say ‘full-time’ but what I mean was that I was working about 18 days out of every 20 – a day off here and there. I was better than 1985 but did not seem to be able to improve beyond a certain level.
About this time ‘yuppie-flu’ happened and its sufferers were often said to have ME – but they almost all got better within 6 months. This did not help public understanding of the illness. I remember sitting in a pub on holiday listening to the landlord talking about his doctor. “He’s got ME. It is a social disease if you ask me, too ill to work but not too ill to party” – party, I’d have given my eye-teeth to have the energy to go to a party – it was just about all I could do to struggle to work more often than not – but only just more often than not. Also about this time, in the UK, two psychiatrists reviewed many recent cases and decided that ME was caused by depression. They did not see a single patient, merely their records. They failed to distinguish between people whose illness was caused by depression and those who were depressed because they were ill; in fact they eliminated the second possibility - for them, depression was the sole cause of the symptoms. This review unfortunately coloured the perception of this illness for more than a decade.
As I said above, the ‘perceived’ wisdom was that this illness was not progressive, most got better, but even if you didn’t get better, you didn’t get worse. I had another ‘flu-like’ illness in 1989 and although I recovered more quickly than in 1985 I didn’t recover as far. It looked as though I had got worse. I had to work out again the levels of activity I could sustain. I was very upset and struggling to understand what happened. Then I read a paper which said that while most people (about 87%) did recover slowly: of the group who did not recover about 12% ( that is about 1.5% of all sufferers) experienced new attacks and as a result, increased diminution in ability and a reduction in the lifestyle they were able to maintain. I was so pleased to realise that I wasn’t alone that I burst into tears – (emotional lability is one of the symptoms of this illness) Since then I have had a few other smaller downturns and one major downturn.
The firm for whom I worked was purchased by an American company (SPC) in 1991 and I was part of the take-over. Over the next 3 years company records show that I averaged 5 weeks work out of 6 – rarely a full week off, more a day out here and there. I must have been worth it though for during this time I became the world-wide support person for Superbase and with responsibilities for testing programs and training, both in-house and outside too.
In 1997 I had a severe downturn. Basically, after recovery from the attack itself I was left with the fact that the severe front headaches which had been sporadic became the ever-present permanent headaches. After the zombie period of about 5 months; when I had achieved some control, I find that I can no longer concentrate for long enough to do any real programming or read philosophy or do many of the things I would have considered to be 'me'… I have not been gainfully employed since then. As an example of the limitations I did a computing job for a friend for which I would have charged 2 days work prior to 1997. It took me about 7 months working an hour here and there, maybe not touching it for a couple of weeks. During bad periods my reading is limited to children’s book – my favourites are the ‘Little House’ books and ‘Narnia’.
In the USA the illness – or a similar illness was called CFS – Chronic Fatigue Syndrome. It is also called CFIDS - Chronic Fatigue Immune Deficiency Syndrome. In the mid 1990s there was a movement over here to change the name of ME to CFS. The reasons for making this change were that very few people had either myelalgic or encephalitic damage (I happen to have both) and thus the name was not accurate. I was among those who opposed this move. My reasons were threefold.
About all else I need to say about this illness is that I was involved with a Chronic Illness Forum on the web and more recently with the CFIDS self help group. The book published by the latter group is the best thing I know on the subject of this illness and they run a regular online course that has helped me enormously. To visit them click CFFID-SelfHelp Website
The particular impact of the 1997 attack on my personal life includes the fact that the headaches not only continue as a permanent feature of my life but became very much more intense and painful and are noise sensitive. They now have effectively reduced my ability to think critically for periods long enough to continue as a professional programmer – or even to enjoy reading as I used to. I still read a lot but not books that demand so great a level of concentration as before. There are times when my reading is restricted to children's books - usually I can concentrate sufficiently to read for maybe 20 minutes before falling asleep; how many pages that is is also a variable, it may be as high as 75 but is usually half of that. This later attack also increased the frequency and duration of the periods of lassitude with which I am afflicted. I can no longer guarantee any particular date and time up ahead in the future. My friends have got used to agreeing to meeting me with a ‘ring up first and check if it is still OK’ clause in their diaries. One of the things that has changed over the years is my ability to survive people, in the mass, as it were. Basically it costs too much in the way of resources and payback to make meeting more than a very few people except for those times where it is unavoidable. (see section below)
As a result of a great deal of help from the pain-clinic I partially control my headaches proactively by talking 1000mg of aspirin every 6 hours and reactively by using codeine when the pain gets really bad. Of course, ordinary aspirin at such quantities could damage my stomach but I use a form of buffered aspirin which I get from the USA and I have had no bad effects, so far. Of course, taking that amount of aspirin does mean that I have to be careful with things like insect bites and grazes as my blood doesn't clot quite so well as it used to do. I dislike taking the codeine because of its tendency to cause constipation so only take it when I really need it. It doesn't actually remove the pain, it is just that nothing matters very much. Fairly regularly - maybe every 15 months or so I do stop using the aspirin for a while just to make sure that it has not become a causal factor for the headaches.
The main way I control the headaches is mentally. I have no idea how I do it, but I know that if I stop the control then they are unbearable. A lot of tests have been done to make sure that I am not storing up trouble for myself by tensing other muscles in my head and neck which could then lead to tension headaches. I also know that sometimes when the pain is very bad that I am using so many resources to control the pain that there are not enough left to keep me awake, so I fall asleep, not for long, but I do fall asleep. The pain clinic tell me that this is a known response for some people.
It has affected us in one particular way that I found very hard to come-to-terms with. I was brought up that it the husband's duty to look after his wife and family. I have had to learn to let go of this and to accept the fact that Jill has to work to earn what we eat. I make all the bread for the family. (jokingly) This is my response to that fact: I am no longer the bread winner, but have become the bread maker.
However, my illness does not mean that I am completely incapable of work. I have typed up material for other people and acted as an editor on papers (extended essays) that have been privately published. I also helped edit a major theological work. For some years I have supported the an address-system application at L’Abri-UK which I wrote for them. I have recently ‘sorted out’ (i.e. rewritten) a small accounts system for a local church and I have created and maintain my own web-page - which is what you are reading now! The common factor in all these activities is that I can work at my own pace from home and if I have to take a couple of days or even a week off through tiredness or incapacity it does not impact the results which have not been time critical to that kind of degree. The ‘Accounts System’ is a recent example. I would estimate that ‘in the old days’ it would have cost two, maybe three days of my time. (I used to be charged out at £600.00 per diem, not that I got that myself! and when self-employed I used to charge myself out at £250.00 for single day of consultancy) This recent ‘sorting out’ took about seven months of lapsed time working by email with one the church officers concerned.
The strategies and ideas outlined here are the result of some years of experimenting and above all of keeping records.
A caveat: These things have worked for me. I do not say they will work for anyone else. We are all individual and different individuals have different needs, capabilities and abilities. Also, we may not ahve the same illness!
Firstly: some groundwork.
Secondly: some strategies that work for me.The main keyword here is flexibility Be flexible
I have to plan both longer term and day-by-day and I have to have contingency plans.
2006 Update A particular 'be flexible' Do not be surprised if things change. In my experience from 1985 to 2005 that has always been another downturn; a need to re-learn lower limits. But never sink into bad expectations. Entirely beyond my expectations 2006 has been a year when I have had more energy and been able to commit to more activity. Yes, I still have to plan; yes, I still have to rest, yes, I still have to have be obedient to the rules above, but I have been able to do more. I have taken responsibility for tutoring a theology class. I have even (for the first time in 20 years) preached once to my own church. But it is still only once. I am still limited and I still struggle to work within those limitations - but the horizons are broader than they were and I praise God for this.
2012 Update I have recently been diagnosed
with Diabetes Type 2. The reason that I am placing
this note here is that the warning symptoms for the
onset of age related Diabetes are very similar to the
normal state of health of someone with CFS/ME:
tiredness suring the day; loss of feeling in the feet;
etc etc. things I have had for 25 years. In other
words the CFS/ME masked the symptoms of diabetes.I
would reccomend anyone with CFS/ME to make sure that
they get regular blood sugar checks. When diagnosed I
was further down the line than is expected for newly
On the church front: Jill
and I are now members of the IPC and I have found
energy to preach about once every 3 months and also to
organise the church's web site www.ipc-liss.com