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.

Monday, June 16, 2014


For many of us with this condition, one of the great questions we have to answer is, how do we have some kind of life while dealing with this debilitating, corrosive disease?

In other words, how do we combine organizing our lives around our disability, while still being able to do some of the things that "healthy" people do. How do we have family, relationships, work, pastimes, a social life, - in any reduced version of these words - while living with something that makes normal life impossible?

I have been thinking about this question more in the last while, in light of my recent relapse. Relapses, for me, are usually products of a combination of an illness or infection of some kind, with not resting at the critical time. In other words, they are caused by my everyday life continuing more or less as normal at a time when I should be taking a time out.

This recent crash followed a familiar pattern. I didn't slow down when I should have, after a stomach bug. I tried to keep going, through a period of illness, when I should have stopped.

It isn't always easy to know exactly what to do in these situations. It was a busy time for me, five weeks ago when I crashed, and I didn't feel that bad with my stomach bug, a few cramps, nothing major. I didn't feel bad enough to believe that I had to take time off.

And the truth is, after having lost so much time already, and having missed so much in my life, the thought of retreating, of shutting things down again, even if it is only for a few days, is difficult to contemplate.

This is the central conflict in a life lived with ME, the conflict between trying to stay well and living a life. It is not easy to strike a balance. In many ways I have organised my whole existence around accommodating my condition, I work in bits and pieces so as I have enough time to rest during the day, I have changed my diet so I eat only healthy, fresh food, I try and insure that I sleep well and avoid stress, and try and not push myself too hard, with work or travel.

And yet I have the same ambitions and drives as anyone else. To me, a life lived within strict limits can be frustrating, sad, it can give a sense of loss. I have the same desire to investigate new possibilities as most people, a desire for newness and progress. I want to move forward, to try and live a life.

Of course, this desire, this drive, this ambition, can be lethal for living with ME/CFS. It is what stops me giving in to the condition when things get bad. And the point is, it is vital to give in when I am not feeling well.

To put it simply, if you have ME/CFS and are not prepared to give up everything you have, or everything you have planned at a given moment, at least temporarily, then you are in trouble. There is nothing that can be "unmissable", there can be no event, wedding, funeral, class, meeting, date, party or day at work that you simply "have to" attend. Everything has to be contingent on health, energy, on being up to it.  

In my case, infections are the critical time. This is when I really have to watch myself, to take huge care, even if I am not feeling that bad. One wrong move at the wrong time can cost me months of my life. I know all this, have missed a huge amount, and yet still continue to have relapses.

The thing is, I love life. I really love it, I do find the world fascinating. I am never bored, and in general simple, everyday things give me pleasure. And being able to work again after so long on the sidelines, is a great relief. And that is why having to check out for any length of time fills me with a strange kind of anxiety, as if I am missing something.

Yet this love of life can be, as I have said, dangerous. It is the unwillingness to rest, to step back - after I have missed so much time already - that can cause serious problems.

One solution to these relapses, would be to be paranoid about keeping myself safe, and not over doing it. To avoid any situation where I could pick up an infection of any kind. To work the bare minimum to survive financially and to avoid unnecessary travel or any kind of exercise. To develop a frame of mind where being well was the only priority, and the everything else - a social life, work, travel, relationships - was secondary.

But that is not in me. That is a life lived in fear and paranoia. I know people who don't challenge themselves in any way, don't push themselves to do anything new, or to take chances, and that is just not me. I have had a lot of the risk-taking beaten out of me by sixteen years of ME/CFS, but I am still a person who is driven towards life, newness, ambition, opportunity, progress.

Put it simply, I like doing things. And "doing" the wrong thing at the wrong time is what can cause the kind of collapse that I have recently experienced. It is activity, simply doing things, that makes us human, and yet this is what is potentially toxic to staying well with this condition.

The key, of course, is balance. Achieving a balance is the goal of a life lived with ME, and I know this, a balance between activity and rest, between drive and caution, between desire and safety. Living, and living well when I can, and resting when I need to. Being mature about it, accepting my limitations while trying to make the most of my limited life.

This is the goal, clearly. This is the goal for all of us, I am sure. But I keep failing at it. It doesn't happen that regularly, but every year or two I have a crash that was entirely avoidable if I had just rested at the right time. And a crash can last from six weeks to six months. They are corrosive and devastating to my efforts to build a life. And yet they arise from trying to live something close to a normal life. It is life itself that poses the great danger to those of us with ME/CFS.  

A lot of the time I cope well with this illness, but in the long term I do not know how to stay well and achieve that all-important balance. I cannot avoid these crashes, and cannot work out how, apart from sealing myself away, a la Howard Hughes, to keep myself safe while still living a life. I suppose that is just something I am going to have to work out, a problem to solve as I go along. 

Thursday, May 22, 2014


I knew that it was too good to last.

I have made some progress in my health situation in the last six months, a five or ten per cent increase in my energy and activity levels. It is not enormous, but is substantial enough to have made a difference in my everyday life.

Some weeks recently I have taught close to a full week, which is revolutionary for me. It hasn't been easy, but it hasn't been too difficult either, I am very organised and do organise my life around my work to a certain extent, and so know how to manage the increased work load. It is the most I have worked for about twelve years.

Yet two weeks ago I got a stomach bug. It wasn't much, to be honest, I think I probably picked it up from my three year old niece, some cramps, a little diarrhea, nothing too serious. I felt more tired than normal, though was able to keep going, and didn't take any time off.

By Sunday evening, though, I realised that I should have slowed down a bit. I had gone for a walk that morning, and then shopped that afternoon and by the night time my stomach was worse, I was exhausted and anxious. Monday morning I got up and taught a two hour class, and went home. By the afternoon I realised that I could hardly make it down the stairs, cancelled my classes for the rest of the day and went back to bed.

Since then, ten days ago, things have been tough. I tried to get back to some tiny amount of normal activity, and realised that I couldn't do it. I have been exhausted, shaky, anxious, depressed, dumbfounded that it could all go so wrong so quickly. I made it out to the local supermarket the other day, and spent ten shaky minutes gathering some supplies. Nothing is easy, everything is an effort, my previous activity level is a distant memory.

This is far from the first time that I have experienced this kind of crash. I wrote about my last one here. These relapses always happen after an infection of some kind, and usually occur at just the wrong moment, when I am busy and relatively well, health wise. If my energy levels are not too bad for a while, I develop a false confidence, an erroneous belief that I have become bullet proof, impervious to a further worsening of my condition.

So, in these moments of relative health, if I get sick with a cold or stomach bug, I keep going, or try to get back to activity too soon, and often crash. These crashes have been the worst times of my life, no question. They can last anything from a month to six months, and involve all of the worst elements of ME/CFS, magnified by the depression and anxiety that always accompany such an event.

And it has happened again. I will probably be alright, eventually, I have been through this many times before in my sixteen years, so am trying not to panic. Yet from the way I am feeling now, it could be a couple of months before I get back to where I was pre relapse. This is hard to take when I was doing so well, and beginning to be confident in my new levels of health.

I have been quite depressed by the whole experience. I feel like a failure. There is the natural depression that comes with not feeling well, and with facing weeks or longer of inactivity and struggle. I am also quite isolated, as I have not been working, and so spend practically all day on my own.

More than that, though, is the depression that comes from the realisation that I can never, ever, ever, ever, ever, ever, ever, ever drop my guard in the future. Never. Unless someone comes along with a cure, there will always exist the danger of crashing, the spectre of relapse is constantly just around the corner, only an innocuous cold or stomach infection away.

The threat of disaster is a constant, and that is hard to live with. It makes my whole existence insecure, uncertain, frightened. I have recently got some work teaching English to foreigners in the local adult education organisation, my first real actual "job" I have had in ten years. I haven't been in work for two weeks now, and it is unlikely I will get back before the course they have given me finishes, at the end of June.

This was something that was important to me, and is now likely destroyed.

It is of course true for anyone, in any walk of life, our lives can be sabotaged in an instant by bad luck, illness, accident. Yet for someone with ME/CFS this is especially true. It is a tenuous existence we live, no matter how ill or well we are at any given period there is always the possibility of something happening out of the blue that can cause our carefully organised lives to - at least temporarily - fall apart. This is the reality we live with every day. We are tightrope walkers, trying to stay balanced, desperately hoping not to fall.

And the truth is, if I had remembered this two weeks ago, I would have taken time off work immediately, rested for a few days, slowly built my activity levels up until I was fully sure that I was over my bug. Instead I kept going and crashed. This is not an attempt at recrimination or self-blame, simply a statement of fact, and possibly a reminder for the future.  

In truth it is completely understandable that I kept going. I was busy, occupied, involved in my life, not wanting to stop. It is a hard decision to make to drop out for a few days or a week, after I have lost so much time in the past. Unfortunately, not doing so has caused me to lose much much more time.

It may be understandable that I didn't stop and rest, but it cannot be acceptable in the future, if I want to have any kind of life. A couple of wrong decisions have put in jeopardy my financial security, the little work that I have and a potential of work in the future, as well as causing me the trauma of having to recover from this excruciating relapse.

One busy day at the wrong time has caused the bottom to fall out of my world.

This is another of the elements that is a weight on someone like me that is dealing with this complex, chronic illness. They are my actions that cause these horrendous experiences, the crashes I suffer are usually down to the combination of an infection and my not resting enough, not recovering well enough, of pushing myself too far at just the wrong time.

This is a hard piece of knowledge to bear. It puts a lot of pressure on the way I live my life, having to be safe, having to take care, having to avoid risks and manage myself and my life carefully. And generally I do, I am careful, I eat well, avoid stress, don't overdo it. And yet, one slip and disaster can occur. It is a lot to live with.

This knowledge - of how much danger there is in trying to live a normal existence with ME - does add a layer of insecurity to everyday life, and a sense of impermanence and shakiness. I have seen, over and over again, how easily it can all collapse. It happened just last week, and will likely take months to repair.

The truth is, I have begun to believe that it is simply beyond my power to manage this condition. One way to keep myself safe would be to only work a small amount, minimise any kind of stress or conflict, to not go out and to live a very quiet, unadventurous life. To say "no" to everything. And yet I am incapable of sitting still and denying my life. To me it is a form of death to turn down opportunities and shut myself off to possibilities in order to keep myself safe.

They say that the price of freedom is eternal vigilance. The same is true of health.

I have managed to scrape together some kind of life from the wreckage of the last sixteen years of illness, but without constant vigilance, with one slip, it can be gone in an instant. I am beginning to think that such vigilance is beyond me. It feels like I am simply not going to be able to keep myself well for any length of time while trying to live a life.

Friday, April 18, 2014


Once I was sure that my recent improvement in health and energy was real, I made two major changes in my life. The first was that I joined a gym and began exercising. After my recent car crash, I have had to put that on hold, I still have aches and pains in various places. I miss it a lot, and hope to get back to it again in the future.

The second thing was that I signed up for is a dating site, you put your profile up on the site and say what kind of person you are looking for, and what kind of person you are. The site then sends you suggestions of people you might be interested in. You can message them, or wait for them to message you.

I have had ME/CFS for over sixteen years now. In that time I have had two short relationships, neither of which went very far, and most of the time I haven't been in any kind of state to be able to meet someone and try to build something.

Before Christmas, though, I felt ready. I felt like seeing what it was like again to meet a woman I was interested in, to get back that excitement and passion and security that a relationship can bring.

I connected with someone on the site quite quickly, and went on a couple of dates. She lived an hour and a quarter's drive away though, so it wasn't very practical, but I was anxious to see where it led, and happy to be back in this world that most people take for granted. So I drove there and back twice. I enjoyed her company, we got on well, I think, though I wasn't sure how much potential there was for starting something between us.

Anyhow, after a couple of weeks it basically fizzled out. I wasn't too upset, to be honest, I was happy just to be back in the world of romance and dating, to be open to a normal human experience that I have been denied for so long.

That was a few months ago, and I haven't met anyone else in that time. I have messaged a few women, who have not replied, and have received a few messages from women that I in turn am not interested in. One problem is that most people on the site are a good drive away, there are not that many single women in my area.

Another issue, I have begun to realise, is that I don't know if I am really ready for a relationship, or if I really want one. The thing is that I have been on my own for so long, I have been managing my health, doing what I can, when I can, that I am not good at compromise. I have a need, like most PWMEs, to have control over my life as much as possible and not have to fit someone else into my world.

Solitude has been a fact of life for me for so long now, I can't remember another way of living. At the moment I am teaching quite a lot, for me, about sixty percent of a full week, and so don't spend a lot of time on my own. I have two, three or four classes a day, and am mixing with people all the time.

Outside of work I have some family that I see from time to time, and one or two friends, but I have developed a rhythm where I do what I want, when I want, when I feel able. I go to the cinema on my own, go to the gym on my own, go shopping on my own, just as I have been doing for years.

The thing about being with people is that they are tiring. Other people are exhausting. Just conversing at times is too much for me, and having to fit in with their demands and desires and habits is a lot to take. And so solitude is a prerequisite for someone with a condition that drains your energy and robs you of control over the basic things of your life.

I am, and have been, on my own so much because I cannot live any other way. Up until two years ago I lived with my parents, but even then I spent a lot of time in my bedroom and not a lot with them. I moved into shared accommodation then, but the other people in the house keep themselves to themselves a lot and so I rarely see them. Moving out of my folks' house was the best thing I have done in a decade, and has improved my quality of life hugely. It has made me a little more solitary, but has given me back more control and independence.

So I actually like my life now. I am about seventy or seventy-five percent recovered, enough to do a lot of things I thought I wouldn't be able to do again, though still in a limited fashion. I don't mind all of the time I spent on my own, I am usually busy, never bored, have been doing this so long now that it is second nature. I may be solitary but I am usually not lonely. Or else it is the case that I have been lonely for so long that I don't notice it anymore. Whatever I am, it is not a state that I find unbearable.

I am going to cancel my membership to this month. I suppose that I don't really believe that I will, at forty-two, meet someone I like enough, and who likes me enough, to make me want to change my life to absorb them into it. A relationship would be a huge upheaval in my life and would involve some major changes, and I don't really know if I am ready for that.

I don't rule out the prospect, but right now it doesn't seem very likely. And, for the moment, I'm fine with that.