THIS MUCH I HAVE LEARNED.

I have recently passed my eighteenth sickiversary (copyright nopostergirl.com), 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. 

INTROVERSION AND ME/CFS

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. 

BREATHING 2.

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.