Wednesday, April 13, 2016


One of the weirdest and most frustrating aspects of this whole nasty adventure for me is the area of food intolerance.

I have been dealing with ME/CFS for more than eighteen years now, though it was not until the third year that my food intolerances really kicked in. And it began in kind of a strange way.

I was dealing with a relapse, it was probably the year 2001, I was struggling. I got a cold which I could not shift. Someone suggested that dairy products can contribute to the formation of mucus, at that time I had wheezing and a heavy cough that I could not seem to recover from.

I was eating normally at that stage, dairy, wheat, gluten, the usual stuff of a European diet. I gave up dairy for a month, went on to soya milk and margarine. It didn’t really help my chest, so I started eating cheese and milk again.

Within a day or two I noticed some bad stomach symptoms, diarrhoea or constipation, cramps, bloating. I eased off on the dairy, and the stomach symptoms improved. I tried on a number of occasions to reintroduce milk and cheese and butter into my diet, but each time I had the same experience.

My mistake, in retrospect, was to try and return to my previous diet straight away, without building it up slowly. If I had just taken a little butter, milk and cheese the first week that I returned to it, I could probably have gotten away with it and gradually returned to eating dairy as normal.

Instead, what happened was a kind of avalanche. I soon found that my digestive symptoms returned, and after a process of elimination I realized that it was bread that was causing them. Soon it wasn’t just wheat, but all gluten that was implicated. Then this was linked to yeast and corn, and in fact anything that I had previously consumed with dairy products. It was as if some trigger had been turned on, and now I was hypersensitive to certain foods, and also liable to react to certain others.

And that has been the case for the last fifteen years. I still cannot eat any real quantity of dairy or gluten, though I can get away with a slice of apple tart occasionally, or some dairy mixed in with a soup. Yet they continue to cause me digestive problems (though in general food doesn’t seem to effect my energy levels and general health).

I also then began reacting to certain medications and supplements. To this day I cannot take D-ribose or any of the detox supplements like Spirulina. Any time I start a new supplement, it has to be on a tenth or a twentieth of the normal dose or I get extreme digestive reactions.

The next major food area that I began to lose was an unusual one. I began to have real trouble digesting oils. I had been living in Portugal for the three years previous to my falling ill, and had taken to using olive oil on salads, potatoes, and even bread at times. I used it a lot. Within a few years I found that olive oil was now out too, it caused me a lot of discomfort with only a small amount.

So I branched out. I ate a lot of salads as I was trying to eat healthily, and so tried a succession of cold pressed oils in salad dressings. Hazelnut oil, pumpkin seed oil, sesame oil, rapeseed oil, avocado oil, I was able to use some of them for a while, but I always ended up becoming intolerant to each one.

The processes by which these intolerances developed were so bizarre that I still have to question whether they were real. For some oils, like avocado, as soon as I tried it I reacted to it, and was never able to eat it. In the case of avocado oil, after I tried it and reacted to it, I also found that I was reacting to avocados themselves, something I had never had a problem eating before.

Others seem to become “infected” by other problem foods. Once or twice someone else cooked something in olive oil without me realizing, and I used whatever oil at that time I was not intolerant to, let’s say sesame. It I used enough of it, and if it mixed with an already problematic oil like olive, then I could develop a sesame intolerance too, and this would never go away. One instance of eating an oil in conjunction with another problematic substance could leave me intolerant to that oil for life.

The last way of forming an intolerance is connected to taking a break from the particular food for a while, and then trying to eat it again. This first happened with dairy, as I explained above, I didn’t eat it for a month, then when I started again, bam! intolerant.

This has happened in the last two years with my last two cold-pressed oils. A couple of years ago I went to Spain for six days. At that time I was eating Hazelnut and Walnut oils on salads. I took some walnut oil with me on holiday, though not hazelnut. When I came back, I tried some hazelnut oil on a salad, only a very small amount. Immediately I reacted to it, bloated stomach, cramps, diarrhoea. At that stage I hadn’t eaten the hazelnut for about ten days, including a couple of days before the holidays. And that was that, having eaten it regularly for years, once I laid off it for a week and a half, as soon as I tried it again it was like swallowing acid.

And so two weeks ago I lost my last oil. Again, holidays in Spain, eight days. I took some walnut oil with me but was eating out a lot and so didn’t use it at all. I came home, tried a couple of drops on some food, then tried to increase it that week and….Bam! again. Bloating, cramps, diarrhoea. Ten years of eating walnut oil and now I can only stomach tiny amounts.

So now I am having dry salads. Vinegar is a problem for me too, so there is really nothing left I can put on lettuce, tomatoes, cucumber. I suppose I can try lemon juice. At least I have found goat’s butter, so I can cook with that at times. But this business of losing foods is absolutely infuriating. It is one of the things that has most depressed me about this fucking plague, among a long list.

The thing is, I thought that I had improved, in terms of intolerances. In recent years I have been able to stomach small amounts of previously very problematic foods. I can cook with small amounts of olive oil (I think it is the cold, raw oil that gives me more problems), and can also eat small amounts of dairy and wheat, though not without a little discomfort and not in anywhere near the same quantities as before.

And I have not developed a new intolerance to anything for a while. Until now, of course, until losing my last cold-pressed oil a couple of weeks back. I have been doing well in general, working close to 70% or 80% of a full week, still struggling but less than in the past. But the shadow of food intolerance is always there, just as the condition as a whole is constantly lurking behind a seemingly normal life.

Losing the walnut oil depressed me for a few days. It is the finality of the experience that is so hard to take, all of these foods that I have become intolerant to in the past have never been able to reappear in my diet. As far as I can see, once a food gives me symptoms then that’s it. I may be able to sample small amounts in the future, but as for eating it regularly, that’s no longer an option.

It is all so fragile. My painstakingly constructed semi-recovery is real, but it is not secure, and it does not exempt me from this bizarre, dispiriting experience of finding – for no good reason – that something I have eaten and enjoyed for years is now doing me harm. 

Saturday, December 26, 2015


I have recently passed my eighteenth sickiversary (copyright, the anniversary of the date that I mark as the beginning of this long, arduous adventure with ME/CFS.

With luck, if you have to experience anything for eighteen years, you are going to learn something. And here, in no particular order, is some of what I have learned in those almost two decades. I have to stress that everything I am talking about is related to my own particular experience, and I am not expressing any kind of general statements on the condition. Though of course much of this may make sense to others in the same situation.

A. Doing too little is almost as bad as doing too much

Again, to stress, this is my experience. 

Like with a lot in life, the trick is to find the golden mean, the happy medium, the balance between overdoing things and resting too much.

I have experienced this necessity for balance again and again. One area is sleep. At the beginning of my ME/CFS saga I was sleeping fourteen hours a day, as I was so exhausted I thought that I needed this much sleep. Of course all of this sleep was contributing to the exhaustion. This was pointed out by the first ME/CFS doctor that I saw. Once I regulated my sleep pattern, started going to bed at a regular time, and forcing myself to get up at 8a.m. every morning and not sleep during the day, I began to feel human again.

On many occasions during a relapse I have been so paranoid about making things worse that I have ended up sleeping during the day, and taking every opportunity to lie flat and rest. And over and over again I have found that as the relapse has gone on I have become worse, not better, often taking even more time to rest, even more time to lie down, and have done less and less until it seemed impossible that I could do anything at all.

It was only when I returned my sleep to a normal rhythm and stopped lying down at every opportunity that I was able to get out of the hole I was in and get back to some slight activity. It is clear to me that something about shutting down all activity has a very negative effect on my central nervous system, and somehow causes it to slow down even more.

Of course a return to activity has to be careful, gradual, bit by bit by bit, but it is necessary if I want to make any kind of progress. Doing too much, being too active, pushing myself at the wrong time, these are all dangerous to my wellbeing. But doing nothing, being over-careful, over-resting, is almost as bad, and has led to a kind of spiral of increased disability in the past. 

Getting the balance right is very difficult, but it is important. 

B. Sleep is vital (to feel well, and as a marker)

Naturally, if someone has any medical problem, sleep is important. What I have found though, is that it is important to have a rhythm to my sleep, and to maintain this. In other words, to go to bed at a similar time each night, and get up at a similar time each morning. If this is broken for any reason, then things are going to be that much more difficult.

If sleep is disturbed for any reason (and this has happened on a number of occasions over the 18 years), then I know that something is wrong. Recently, I stopped using the rebreathing mask that had been increasing my levels of carbon dioxide, and which had been helping me for a while.

I stopped it after a particularly heavy relapse that I fell into about six months ago. The mask was only making me feel worse at the time and I thought I could do without it. I did manage to recover, and get back to some work, but I was a long way off where I had been before. My chest was constantly wheezing, and I woke most nights for an hour or more.

Then I went back to the mask, and the sleep improved immediately. The state of my sleep is a pretty reliable marker of how I am, and if I need to change anything.

The other point, as I have already mentioned, is that it is possible to sleep too much. Anything over seven and a half hours is probably excessive, and stops being something positive and becomes more of a drag on my whole system.

I had sleep problems for a long time, and one of the ways I solved them was that I stopped trying to sleep eight or nine hours and instead settled for between seven and seven and a half solid hours. Quality and quantity is important, where sleep is concerned.

C. The importance of Carbon Dioxide (CO2) and Oxygen (O2)

My last two years have been a rollercoaster of relapses and recovery. A lot of it has circled around my use of a rebreathing mask and breathing exercises, both of which increase the levels of available CO2 in my system.

I have written a lot about this before. The CO2 is essential in the process of energy production which also involves oxygen, but the oxygen is useless without the carbon dioxide. From experience I am discovering how vital having enough CO2 is, for me at least. Since restarting wearing the mask I have improved steadily, and am now relatively active, working two thirds of a week and able to go on holiday.

For now at least I have a kind of handle on the CO2 situation, am increasing my use of the mask and still improving slowly.

D. The Autonomic Nervous System (ANS) is key

There seems to be two main systems of the body involved in ME/CFS in general, the immune system and the central nervous system. I don’t really know what role the immune system is playing in my condition, but the autonomic nervous system, the part of the central nervous system that controls the automatic, unconscious elements of the body’s function, is absolutely central in my particular case.

The ANS controls breathing, pulse, heart rate, blood pressure, sweating, body temperature, all of the things that you have little or no conscious control over. If any of these elements are out of balance, it is the ANS that is effected.

Nearly everyone with ME/CFS has some of the following: difficulty standing, palpitations, nausea, sweating, poor temperature control, fast or slow pulse, shallow breathing, light-headedness. These mark a problem with the ANS. It is easy to say this, but harder to figure out why, or to fix what is wrong.

The rebreathing mask, and the increase in CO2 that it produces, is one way that I have been able to tackle the ANS disfunction. In the Breakspear clinic, where I have been treated, my doctor called it “dysautonomia”. Other people have tackled this by meditation, mindfulness, or even HOT.

This last approach is Home Orthostatic Training, and involves retraining yourself to be able to tolerate being upright or standing. It is something I hope to start in the new year, and something I will write further about.

E. Do not despair.

This is the last one, but not the least. And is one of the hardest things to do.

I know how hard it is not to lose hope, as I have despaired on more than one occasion. About four and a half years ago I had a pretty severe relapse and entered into a deep depression. I had had pretty much all I could take, and had lost the ability to keep on coping with what seemed like a totally intractable, insoluble condition.

I just wanted it all to stop, to be honest. The strain of, what was then 13 years of illness had taken its toll, I had lost everything, and couldn’t see a future for myself. I was irrational in my despair, but that was understandable, as I had made so little solid progress in such a long time. In fact it felt like I had just got worse.

The thing was, there didn’t seem to be any way to fix or improve things. And yet, with time and some luck, and the support of family, with patience and perseverance and determination and more luck, I have made progress.

I have just come back from Spain, where I went to do some travelling, spending some days in Malaga and then on to Cadiz. One morning in Cadiz I rented a bicycle and cycled around the edge of the city there, went to the castle and walked around, cycled back to where I was staying. This was all limited by my condition, but with careful management it was possible. I am home now, and feel ok, managed to enjoy Christmas with my family, and have survived the busy last few weeks pretty well.

During the academic year I am working at about 60% or 70% of a full week and have a life of sorts. None of this is easy, none of it is without sacrifices or compromises, and none of it is guaranteed to last, but for now I am more active than I could ever have imagined in the pit of my despair, four and a half years ago.

It is easy for me to say, of course, from my fortunate position as someone who has managed to put some kind of life together. But I do think that it is important to hold on to the hope of improvement, even in the darkest times. Four and a half years ago I was sure that I was done, finished. But we really have no idea what the future will bring, and how things can change.

It is not always easy, but it is necessary to hold on through the dark times, and keep the despair at bay. This much, at least, I have learned. 

Friday, August 28, 2015


I read a lot, but it is not often that I come across a book that changes my whole way of looking at my life.

I was listening to a TED talk on the TED radio hour. Most people may know what this is, a series of talks by people who are innovators or experts in their field, in all areas of human endeavour and investigation.

This talk was by a woman called Susan Cain. She was talking about her own experience with being an introvert in a world built for extroverts, and the power and value of introverts. I found the talk fascinating and identifiable, and looked for her book immediately after the programme finished.

Her book is called, Quiet: the power of introverts in a world that can’t stop talking. She goes into her own experiences, and how it took her decades to learn about herself and how her need for solitude, her quiet, undemonstrative manner, her discomfort with noise and fuss, were not negatives, as she felt society portrayed them as, but actually strengths, if used correctly.

To actually define this introvert/extrovert dichotomy, an introvert is generally someone who looks inwards, who is “predominantly concerned with their own thoughts and feelings” to quote the OED. An extrovert, on the other hand, is “an outgoing, socially confident person….predominantly concerned with external things.”
(If you want to discover if you are an introvert or extrovert, you can take her test here)

A main point in her book is that the introversion/extroversion dichotomy is actually physiological, to a certain extent. It is about what kind of central nervous system you have. There have been more and more studies in this area recently, and they have thrown up some interesting findings.

One is that introverts are what is called high-reactives. That means that, when tested as babies, they react strongly to even mild sensory stimulation, like noise or play or someone talking to them. They tend to wave their limbs around and adopt very expressive faces in reaction to outside stimuli.

Extroverts, on the other hand, even as babies, tend to stay placid and unresponsive to stimulation. Of course the studies had to follow these babies into adulthood and retest them then to discover if they were introverts or extroverts. But the correlation was quite close, babies who grew into introverts were highly-responsive, extrovert babies needed a lot of stimulation to give a response.

The indication is that introverts’ central nervous systems are wound that little more tightly. They are very sensitive to even small amounts of outside stimulation. This is why they can feel overwhelmed easily, and need to retreat to a quiet, calm place where they can be on their own.

Extroverts, on the other hand, are energised by activity, people, noise, sensory experience. Their nervous systems are set so that they need a lot of stimulation, they are “low-reactive”.

The following I found interesting:
“Once you understand introversion and extroversion as preferences for different levels of stimulation, you can begin consciously situating yourself in environments favourable to your own personality – neither overstimulating nor understimulating….. you can organize your life….. in what I call ‘sweet spots’… Your sweet spot is the place where you are optimally stimulated.”

Introversion brings with it certain other characteristics. Introverts tend to have “an aversion to novelty”. It takes them a while to deal with newness and change. They tend to be sensitive to nuance, and will pick up on subtleties that extroverts will miss. They also tend to have a complex emotionality, which makes sense for someone who is prone to self-examination.

Anyone who has any experience with ME/CFS will possibly – as I did – notice a certain correlation here. Introversion sounds a lot like many people’s experience of this condition, heightened sensitivity to external stimulation, a tendency to feel overwhelmed easily, a frequent need for rest, quiet and solitude.

In the book the author talks to a university professor, Professor Little. He got a reputation as a fascinating and entertaining lecturer, but in fact this putting on a show in his lectures was a strain on him as he was fundamentally an introvert. He developed pneumonia, and became quite ill. One of his observations on this is quoted – “Professor Little believes that prolonged acting out of character may also increase autonomic nervous system activity, which can, in turn, compromise immune function.”

It was here that the penny dropped for me. Again, if anyone knows anything about ME/CFS this would resonate. This was the first time that I had thought about introversion or extraversion, and about what that would mean for me and my experience with this condition.

It became clear to me that I have strong introvert tendencies, and did have even before contracting ME/CFS. I have never really had any problem being alone, in fact I have always needed it. I am reflective, don’t really care about fame, wealth or attention. I am risk-averse, dislike conflict and am sensitive to stimulation.

This does not mean that I am antisocial, or dislike people. I am in fact quite a social person, and enjoy being with people I like and feel comfortable with. Being an introvert does not necessarily mean that you are a loner with no friends. It just means that you relate to people in a different way than extroverts do.

And yet, recognizing these introvert tendencies that I have, I realize that I have spent a good portion of my life fighting against them.

Pushing yourself to a certain extent I think is a good thing, the “comfort zone” is a fairly recent concept, and it is always mentioned in the concept of “getting out of your comfort zone”. It is good to stretch yourself, to try new things, to put yourself in unfamiliar territory. Yet I don’t think that I really recognized what my comfort zone was in the first place, and somehow felt bad about myself for even having a comfort zone.

Teaching is a case in point. I have been a language teacher for about 20 years now. At first I found it a struggle, as being up in front of a class felt unnatural and a strain. But it is something that I am actually good at, and do enjoy, and it got a lot easier.

When I started teaching full time, I was in my twenties and working with a lot of people my age. A lot of the other teachers would go out socially after work – we often taught till ten o’clock in the evening, teaching night classes in English – and I went out a few times, but always ended up feeling drained and unable to converse on even a basic level. This was when I was perfectly healthy. The day in front of people had sapped me, left me unfit for anything but going home and being on my own.

And it was only when I started teaching full time, back in 1994, that I started getting constant infections, colds, flus, I was always ill. This constant illness led to increased stress, more illness, and finally to post viral fatigue that didn’t go away, and from there to ME/CFS.

I am not saying that being an introvert caused my ME/CFS, but it was one element in a complex interaction of causes that contributed. Or rather, my not facing up to the reality that I am someone who needs solitude at times, someone who can only deal with a limited amount of stimulation was one of the factors. I remember many occasions feeling so bad about myself for not living up to the outgoing, charismatic person that I felt I wanted to be, that I thought I should be.

I am still teaching now, and still having relapses, some of them severe. Even though my teaching load is much reduced compared to what I used to do, it is still a strain, and still drains me more than most other things. It has only just dawned on me that I am in the wrong profession for dealing well with this condition. I have begun to look into other avenues of making ends meet, like translation and editing, and have even got a little work in this area.

In fact I find that I can do five hours work on an editing or translation project a day, when an equal amount of teaching would flatten me. I am alone, not dealing with people, have my environment under control and so it takes much less out of me.

This book by Susan Cain has changed the way I look at myself, my life, my condition and my past. At forty-four, I am still learning vital things about myself. I suppose it is never too late. 

Sunday, March 1, 2015


I've written a lot about the topic of breathing in the last year or so. It began for me when I was tested in the Breakspear Clinic in England, and shown to have a lack of carbon dioxide (CO2) in my system, and a lack of oxygen (O2) getting to my tissues.

I have done some more investigation myself about this. It seems that you need oxygen for energy production, and for all the basic processes in the body, especially the central nervous system. And yet the way that O2 gets to the various parts of the body requires a certain level of CO2 also, the chemical process involves an
exchange between the CO2 and the O2 before the oxygen can be picked up by blood cells and transported. Without sufficient CO2 your tissues can't get enough O2.

This is how I understand it, how it has been explained to me, though it is no doubt a little simplified, and may not be 100% scientifically accurate in all the terminology. But the central point remains, we need carbon dioxide to function properly, and to get proper levels of oxygen to the parts of the body that need it.

I have also written about a rebreathing mask that Breakspear gave me, a mask that I wear for about five hours at night in bed. The mask traps the CO2 that I breathe out, and so increasing the levels that I breathe in, thus upping the levels of CO2 in my system. I have had a few hiccups with it, but in general the mask has made a definite difference in my life. I have a little more energy and stamina, have been able to lead a slightly fuller life than pre-mask days.

A while after starting the mask, I began doing some breathing exercises. They were recommended to me by someone who called himself a "breathing expert". I was initially skeptical, - as anyone self-describing as an "expert" of any kind I think should be taken with a pinch of salt. Yet I gave it a go. He gave me an apparatus to breath into, and connect to my laptop, and software that would measure my CO2 levels as I breathed.

The exercise was very simple, it was all about slowing and deepening my breathing. What you do is slow your breathing so you are breathing six times a minute, in other words ten seconds per full in-and-out breath. In for four seconds, Out for six.

The idea is to build up a rhythm, and to keep it going. It wasn't easy at first, but it got easier. I started at five minutes a day, and built up to twenty, and could gradually see on the screen my CO2 levels rising.

This was early last year. I was doing ok, with mask and breathing exercises, increasing activity, living a life. Then in March I had a car crash, and in May had a relapse of sorts after a stomach bug. So for a period of four or five months I really struggled.

And somehow I gave up the breathing exercises. I had a month or so of feeling really unwell during the summer, and if felt like a lot of work for something I wasn't even sure was having any positive effect. Eventually I pulled out of the relapse, but found, in the autumn, that I was still struggling, that my energy was mediocre, and I was having intermittent chest problems, wheezing and coughing.

It took me until December to figure out that I needed to start the breathing exercises again. I had given the apparatus back to my "breathing expert", so I had no way of measuring what my CO2 levels were, but this didn't matter. It was just about timing. I went to the stopwatch on my phone and timed my breaths. In four seconds, Out for six. The lungs are supposed to be emptied fully on the out-breath, and then the In should be smooth and un-forced.

I immediately felt better. Even on just a couple of minutes a day, to start off with. Eventually I built it up to fifteen minutes of breathing exercises a day, and slowly began to regain the activity level I had reached before my accident last March. My chest problems cleared up pretty much within two weeks, and my energy became much more solid and resilient.

It is another lesson to me, if one were needed, of the vital role that simple chemicals play, at least for me, in the central nervous system. In slowing and deepening your breathing you increase the amount of carbon dioxide you inhale and retain in your system.

The exercises also train you not to "over-breathe", which is the key term in techniques like the Buteyko method. Buteyko is a therapy for asthma, but it is also put forward for CFS, though I did a course on it about ten years ago and didn't feel any benefit. Over-breathing means breathing too fast and too shallowly, which in turn increases anxiety and makes you over-breathe even more.

And so the trials that people with ME/CFS often go through because of their illness can throw the autonomic nervous system off even more than it already is, worsen breathing and so set up a vicious cycle, reducing CO2 and O2 and reducing energy, increasing anxiety, worsening breathing...etc.

Certainly for me the autonomic nervous system (ANS) seems to be key, I have mentioned that before. And breathing is a key area of the ANS, and effects how the body works in many ways. CO2 and O2 levels are vital for me in trying to stay at least semi-healthy and semi-active.

In fact they are so vital I am considering getting an oxygen concentrator. This is a machine that increases the concentration of oxygen in the air, allows you to breath it in through a cannula in your nose, thus increasing your O2 levels. I want to spend a month or so with the breathing, and the mask working together, see how far I can get and then reassess.

It is so rare to find any kind of answer in the battle against ME/CFS. And at least for me, the oxygen and carbon dioxide question is a key one in my attempts to inch back to normality. I know Dr Paul Cheney, an ME/CFS doctor in the States, prescribes a rebreather mask and O2 at the same time to his patients, and this seems to have a good effect. 

The breathing exercises would be something I would try, if I were in a situation where I was frustrated and had come to an impasse with my health. It would take a month or two to notice a difference, I would say, but it may be worth a try, all you need is an accurate stopwatch, something that is on most phones now. It is free, and can be done at any time. It can be surprisingly difficult initially to hold a breath for four seconds in, and six out, but it does get easier quite quickly. If four in and six out feels too hard at first, it would be possible to begin with three seconds in and five out, and build up.

I can't believe that if it has helped me, that there aren't others out there that it could help too. 

Friday, November 28, 2014


I have often wondered what role a person's personality plays in the development  and management of ME/CFS.

I heard an "expert" on Irish radio speaking, about eight or nine years ago, about Fibromyalgia (FM), a condition that is related in many ways to ME/CFS. He mentioned that it primarily effects the personality type IMP, which stands for Intense, Meticulous Perfectionist.

This, of course, is a gross generalization, and seeks to reduce the explanation of a complex problem to a simple key. But it did get me thinking. I am not that intense, I am fairly meticulous, but not obsessively so, and have some perfectionist tendencies, but am a long way from an IMP.

That said, I can see the rationale behind linking certain aspects of personality to conditions like ME/CFS and FM. In my own case, there are two definite elements that have contributed to the ups and downs of my condition.

The first one is Fear of Missing Out (FOMO). If I look back I can see that this stems from way back, from my childhood at least. I always hated it when my friends - as a group - got to go to see a film I really wanted to see but had to miss for whatever reason, or if my family went on a trip while I was sick at home.

I had a lot of bronchitis as a kid, and was sick quite often, so I think that this contributes to my horror of being on the sidelines.

In 1978 the Pope came to Ireland, and there was great excitement throughout the whole country, which at that time was quite obsessively religious. My mother and aunts had planned to go and see him at an open air mass he was giving for hundreds of thousands of people, and I, at seven years old, insisted on being taken along.

I knew little or nothing about the Pope, but I saw all of the preparations, and the excitement, and absolutely refused to be left behind. Of course it was a miserable experience for me, we ended up having to walk for miles because there were so many cars parked there, it was raining and I was exhausted and bored to tears when we finally got there. My mother had told me what it would be like, but I was insistent on going, just in case I would miss something.

I would spend days or weeks stewing over some fun event that I missed for whatever reason. The reasons for my hatred of feeling left out are probably complex and would need therapy to dig out, but it is something that has always been with me. It is anxiety that the world is having a great time without me, coupled with an intense regret that I didn't take a different course.

Of course this is lethal with ME/CFS. On many occasions I have pushed myself too far at the wrong time, just because I couldn't bear to miss anything. This is usually after a cold or infection, when I should be resting, yet once I start to feel a little better I can't wait to get back to normal life, and often end up crashing.

It is a pattern that has repeated itself over and over again, despite my knowing what will happen if I don't take care. It happened just last week, in fact. I got this cold, streaming nose and heavy chest, and took a few days off. I soon started to feel up to more activity, and although I thought I was taking it easy, I always forget how much rest I need after an illness. By last Wednesday, after I had gone back to work on Monday and Tuesday, I got out of bed that morning and was dizzy and nauseous, and spent the next two days in bed, utterly drained.

I am still recovering now, two and a half weeks after the initial cold. The irony is that in pushing myself to get back to activity, afraid that my life was passing me by, afraid that I was going to miss things, I ended up missing much much more than if I had just taken my medicine and gotten over it earlier. Plus I would have missed less work and lost less money.

Linked to this, I believe, is an Exaggerated Sense of Responsibility (ESR). It could be connected to being the first born in my family, a lot of my friends are also the eldest in their family and share this sense of responsibility and duty.

I am involved in a local voluntary cultural organization, and also organize a series of night classes, both of which I have built up largely on my own in recent years. So when I get sick, it is very difficult to let other people teach my classes, or run events that I have planned. I hate cancelling classes with my private students, and having to let people down.

Somewhere, of course, this is tied to self-esteem and self-worth. I don't want people to think less of me if I have to cancel things, and I am not good at delegating decisions or work to others. I don't want to be the guy that lets people down, misses things, is unreliable. And of course that is exactly what ME/CFS makes me, someone who may have to let people down, may have to miss things, may have to be unreliable.

So these twin factors, FOMO and ESR, are central to my personality, they lead me to push myself when I shouldn't, and make it difficult for me to just rest when I need to rest. I don't want to be this vulnerable, fragile creature, always taking time out, always crying off, constantly telling people that I can't. I want to be the guy that can. And I am not, and that conflict is difficult to get around, and has caused untold problems for me in trying to deal with this condition.

I have to stress that I am not suggesting that ME/CFS is caused by my personality, or by anyone else's. It is clearly a physiological illness, with underlying physical causes, not a personality disorder.

What I am saying is that ME/CFS - perhaps more than most conditions - has to be managed very carefully. Management is vital to being able to live with this thing, and how you adapt your life to your illness is central in managing to survive. And what your personality is like is key to this, to accepting the compromises that you have to make, to dealing with difficult times in your life, to being sensible when you need to.

And my personality, and the drive to succeed, and to appear to be strong, in control, responsible and competent, has often not been a help to staying well, in fact it has caused some major collapses along the way that could have been avoided.

I have gotten better over the years, I have had to. But just last week has shown me that I have a long way to go to get over my fear of missing out, my exaggerated sense of responsibility, my troublesome, restless, unquiet personality.

Thursday, November 6, 2014


A curious element of my particular experience with ME/CFS is all of the different kinds of inflammation and aching that I feel in my body from time to time.

I talk about "inflammation" in the broadest sense, this is not a medical diagnosis of what I go through, simply a way of describing feelings of discomfort in different parts of my body.

There is inflammation in the gut and stomach, of course. Many people with ME/CFS have irritable bowel syndrome (IBS), and while I don't think that is quite true in my case, I do have a lot of food intolerances that cause bloating, discomfort, tenderness in the stomach. If I eat a lot of a food that I can't usually take, like wheat or cow's milk products, it can feel like my gut is swollen and inflamed. Even small amounts of certain supplements or medications (D-ribose for example) can do this too.

I have also had prostate inflammation for years now, it started a couple of years into my ME experience, so it has now become an everyday part of my existence. I have discovered, through various ME forums, that this is quite common in men with ME/CFS. It can manifest itself as a dull ache in the prostate, and a strong desire to urinate, often frequently. It is, at times, literally a pain in the balls. At its worst it can be uncomfortable, even to sit down, and can wake me up at night, though this is rare.

Six months ago I had what could have been a very serious
car accident. I was told by multiple people that I was lucky to be alive, the car skidded and turned on its side in a ditch while I was going 100 kilometres per hour. I emerged with only some aches in the back and tingling in the feet. I have had some physiotherapy

recently, and this has improved, but it is still an issue, intermittently. The feeling is often that my lower back is stiff and sore and aching. It sometimes also feels like my neck and upper back too are jammed and locked up.

And the last main area is the chest. After a cold - something I had last month - I often get a cough or wheezy chest for a few weeks after, and I have been experiencing this recently. There are times when I have had difficulty breathing at night, or when I haven't
been able to speak because of the coughing. I am not sick anymore, but the heavy, irritated chest has stuck around. I also react to animal dander, especially cats, which just chokes me up.

There are a number of things related to all of these symptoms that I have discovered over the years that are quite curious. Firstly, the various forms of inflammation seem at times to be random, and are all intermittent. One day I may have an aching back, the next my prostate may be sore, this may last a few days, and then I may get a temporarily inflamed stomach. There isn't an easy way to predict what I will be experiencing from day to day.

Secondly, I rarely have more than one symptom at once. So for example, if my back is aching then my prostate is generally calm. If my chest is tight then it is unusual to have a disturbed, disrupted digestion.

This has had interesting implications. I have found that my chest and sinus are effected by something in my bedroom, it has been like this since I moved into this house, two years ago. I solved it initially by getting an air purifier, and so have been relatively fine recently.

Then, a couple of weeks ago the cartridge in the purifier ran out, and I haven't been able to get a new one as the company I usually buy them from is out of stock. So my chest has been heavier than normal, I've been wheezing, having trouble breathing at night.

What I have also found in this time, is that I am much less reactive to problematic foods than normal. I have eaten pasta, apple tart, cow's cheese, cream, bread, pastries, all with minimal reaction. I haven't eaten great quantities of these, but the fact that I have been able to eat them at all is remarkable.

Somehow it seems that my body can only react one way at a time to the environment. If my chest is reacting to whatever irritant is in my room, then my stomach is much less likely to have a bad reaction to problem foods. The same happened a few months back when my back was giving me trouble. I was aching and stiff for weeks, then I had a period of prostatitis which was particularly uncomfortable, and my back stopped hurting so much, pretty much immediately.

The final curious element in all this is that, during relapses, the various kinds of inflammation that I normally experience often disappear. In May of this year I had a relapse after a stomach bug, and again, my back, which had been giving me a lot of trouble for the previous two months, eased off pretty much immediately.

The same was true of the prostate, which was fairly calm, almost normal. I had few digestive problems also, and didn't tend to react too badly to problem foods. In fact, I knew I was getting better when I started to have more aching in the back, an achier prostate, and when the stomach started to react to things again.

I don't pretend to understand this, but the times when I have most energy, when I am most clearheaded and "normal", are when I have a stinging prostate, or an aching back, or an inflamed gut. It is perhaps that the inflammation, the stinging or irritation is a sign that the central nervous system has woken up, is kicked into action, is no longer dormant. The various forms of inflammation that I experience are possibly by-products of a dysfunctional nervous system overreacting while trying to return to a more normal state.

Though this is all speculation. As I said, I don't really get it. I would love to know a little more about human biology and physiology, to know how these various reactions come about, and what causes them. What is true though, is that I now welcome a certain amount of aching somewhere. It means that I am probably going to have some energy, that I am not going to be as lethargic or sleepy or drained as I am at my worst, that the occasional headaches or nausea that I get will be kept at bay.

This is what happens in a condition as messed up as ME/CFS. You can learn to welcome things that healthy people would see as annoyances. I live with my various inflammations, and, as long as they are only slight inconveniences, they are a bizarre sign of some rare, much needed energy that is not always available. I would love one day to feel good without feeling bad somewhere else, but for now the trade-off is the only thing available, and that is what I have to accept.

Tuesday, July 22, 2014


To me, the philosophy behind Mindfulness, is one of the only ones I have ever heard that makes real sense to me.

Mindfulness, as more and more people are discovering, is a way of looking at the world that focuses on the present moment. The idea is that the present is the only thing that really exists.

Both past and future take up a lot of our thoughts and attention, but the truth is that we only have the "now". The past is gone, it has happened, it is fixed and unchanging. No matter how much we wish it was different, no matter how hard we try to will it to change - and believe me, I have had periods where all I could think of was how I wished I could do things over again - this can never happen. We are left with no choice but to accept the past.

The future, of course, is something that takes up much of our lives. We plan, we worry, we anticipate, we frequently get anxious about things that never come about. It hasn't happened yet, and - despite what some psychics will tell you - no-one can tell what will occur. The future is always uncertain, for good and ill, and this too must be accepted.

So in a real sense, neither the past nor the future actually exists, though we all spend so much time in both. I know this has been a large issue for me throughout my life, the twin toxic emotions of regret and worry.

Regret is simply wishing that the past were different. And with ME/CFS, which has to be managed very carefully, it is all too easy to look back on things we could have done differently at particular times that would have save us a lot of misery and illness and loss. "If I had only known then....", "If I had only rested at that time,.....", "I wish I could do it all again."

I am very familiar with these thought patterns, extremely toxic and harmful as they are. They are torture when they get on a loop in your mind. Regret nearly always results in self-blame, with depression not too far behind.

Worry about the future too is something I have a lot of experience with. It is the other side of the coin from regret. I have improved in the last few years, mainly because I began to notice that ninety-five percent of things that I spent hours or days worrying about never happened. It began to be clear how wasteful worry is, especially if you only have a limited amount of emotional energy.

So mindfulness, with its emphasis on living in the present moment, is something that makes absolutely perfect sense to me. Yet, it is about retraining bad habits that have built up over a lifetime, and so needs a certain degree of commitment and persistence. The main way of practicing mindfulness is through various forms of meditation.

The meditation is built around breathing. You simply focus your attention on your in-breath, and then your out-breath, becoming aware of what happens in your body when you breathe in and then breathe out. And you keep doing this. Thoughts will come and go in your mind, but the idea is to just accept them and let them go again.

I use an app called Stop, Breathe and Think, which is pretty good for guiding you through a meditation. I have been trying to keep up regular meditation for years now, but have only recently taken it up again in the last few months.

I have said that the theory makes perfect sense to me, and has improved my general outlook on, and approach to life, but actually being mindful in everyday life is a struggle. Moving beyond these bad, life-long habits is not easy, and at times is beyond my abilities.

So I have recently started going to a meditation group, or "Sangha" in the local area. They meet once a week, and I find that being in a group, with the kind of support and joint practice that this entails, is a help.

Yet there are elements of the Sangha that I struggle with too. The group is based on the teachings of Buddhist monk Thich Nhat Hahn, and although you don't have to be of any particular religious belief to take part, there are vestiges of religiosity that I am uncomfortable with.

For example, there are "sharing" sessions where people can talk briefly about anything that they like, but before talking each person is supposed to put their hands together over their chest as if
praying, and bow slightly from the neck. Then, the rest of the group make the same gesture. This has to be done every time before someone speaks, and also when they finish speaking.

I find a lot of this ritual behaviour a little silly and tedious, if I was being honest. I grew up with Catholicism, and all of the kneeling and blessing myself of my childhood in the cause of a belief system I no longer believe in has made it difficult to take any of these rituals or gestures seriously. There are people in the group that really do sit cross legged on the floor, with the fingers together and pointing upwards, as in the classic guru pose, and I generally find it funny that people are so serious and intense about these kind of things.

The philosophy too, is something I have mixed opinions on. It is somewhere between a hippie view of the world that desires "happiness for all living things" (as the group leader wished for during our last meeting) and a kind of new-age, alternative health approach, that talks a lot about "healing" and "forgiveness."

Not that there is anything wrong with healing, happiness or forgiveness, it just that after nearly seventeen years with ME/CFS I have come across a lot of nonsense in the alternative health field, and am automatically suspicious of this type of rhetoric. I also am pretty sceptical in general, and do tend to find a lot of things like this funny.

Still, these are my issues. In general, there is no scam going on with meditation, like there is with religions or some alternative health practitioners. No-one is trying to make money out of you or control you or tell you how to live your life. The group is simply a collection of people who are trying to work out how to live a good life, and using meditation to try and find some balance.

And in the end, it is the only way for me to live. Mindfulness is really a requirement for me, I believe, just to be able to get up every day and face the challenges that life with a chronic condition presents. Damping down regrets, and repressing worries, attempting to live more in the present moment, is an essential approach for me.

It appeals to me on an emotional level, in the sense that I know how powerful just training your attention on the present can be, and what a relief it feels to be given a break from regret and worry.

And it appeals to me on an intellectual level too. It is a very profound truth that the past and future don't really exist. The effects of the past on the present are a fact, and no matter how much money you have or how powerful you are, you can never change that. And the future is yet to occur, it is truly uncertain.

The only thing we can be sure of is the present. That is all we have. Mindfulness, despite the difficulties I have with various aspects of it, is an essential tool for simple survival.