BREAKSPEAR 5: CHECKUP, AND THE DANGERS OF SELF OBSESSION

I went back to the Breakspear clinic this week, five months after I had last been there. I last wrote about it here.

It has been a rollercoaster five months, with a severe relapse, recovery, and then a certain improvement in my overall health situation. All of the ups and downs of the last few months have been connected to the rebreathing mask that I got from the clinic, and so I was curious to see what the numbers said was happening with my system.

The mask, which I now wear for at least six hours every night in bed, is designed to increase my levels of carbon dioxide (CO2). Oxygen levels are key in energy production and the proper functioning of the autonomic nervous system, but O2 is in turn dependent on a certain amount of CO2 in the system as a buffer or support. In my initial examination I was shown to have low levels of CO2, which meant that when I exerted myself, my oxygen levels dropped instead of rose.

I flew over on Monday to Luton airport, just outside London. I had a follow up appointment with Dr Shah, who is a neurophysiologist there in Breakspear. He attached sensors to me which measured different aspects of my central nervous system functioning, including O2 and CO2. Then he gave me a "challenge", telling me to inhale and exhale rapidly, six times in a row.

The last time this is when my oxygen plummeted, when it should have risen. My CO2 levels also fell during my first exam. This time, the same thing happened, though less so. The oxygen fell but less, and the same happened with the CO2, it fell, but recovered more quickly. So the basic story is that my autonomic nervous system is still dysfunctional, just less so.

And in the world of ME/CFS, this is what is counted as a win, progress. Still dysfunctional, just less so. The doctor gave me some advice when I showed him how I was wearing the mask. He told me that I needed to pull the straps that fasten it to my head tighter when wearing it, to maximise the amount of CO2 that is trapped in the mask, and so increase the amount I "rebreathe".

He also said that he had to confer with his colleague, Dr Munro, about what other actions needed to be taken to get my O2 levels up. He suggested that I may need an oxygen concentrator, and also what he called an "endothelial cell repair programme." I'm not sure what this last thing is, but I have to talk to Dr Munro herself in a few weeks to find out.

And that was that. There wasn't really much to the appointment, a confirmation that I was slightly improving, some advice and a promise of future treatment.

One of the more interesting parts of my brief stay in England was that I spent that evening in the Breakspear guesthouse. They own a medium sized house a few miles from the clinic, which they allow visiting patients to stay in for a reasonable fee. The house has a kitchen and common area. Some of the people I met there were there for a whole week, others for a month or more.

Again, like last time that I stayed, I was the only man in the house. This time there was a French lady, three Italian women and a German girl in her twenties. They were all being treated for some form of Multiple Chemical Sensitivity, and one or two for electro sensitivity. Breakspear do a lot with this, allergies, environmental medicine, treating people with unusual reactions to things.

The experience of being with all of these sick people, even for just one evening, was a mixed one for me. It got kind of oppressive, hearing people's stories, being around people who are so intensely conscious of their environment, who are so consumed by their condition.

One lady there had a sensitivity to wifi, and to mobile phone signals, as well as to other things. She had a helper that came in to cook her dinner when I was there as she wasn't able to. However, she did seem able to go around the house with a little device that detected phone and wifi signals, and to go up to anyone she suspected of having a device, and ask them to turn it off. I had a laptop with me, and had connected to a wifi hotspot in my room. She obviously detected this with her little gadget, and threatened to go into my room and switch it off herself if I didn't. She was very insistent, almost threatening.

Another lady had a sensitivity to traffic fumes. Before going to bed she asked all of us to close our windows in our rooms, so as to keep out any trace of fumes from the house. My room was at one extreme of the house, and hers at the other. All doors to all rooms would be closed at night, the rooms only connected by a narrow corridor.

The two reactions to me seemed extreme. It seemed to be symptomatic of the atmosphere of the place, where people were really invested in their illnesses, and delighted in talking about them. The first lady who was sensitive to wifi didn't actually feel any worse when I had my computer connected, she wouldn't have known there was a signal if she didn't have her little gadget. What's more, her room was downstairs, and mine was way up at the end of the corridor upstairs.

And the request of the second lady seemed to me to be unreasonable. As it happened I closed my window anyway, but one of the girls there had other sensitivities and felt better with air circulating, and sometimes liked to have her window open. Besides, the rooms were obviously considerably separated, and the doors were going to be closed all night. The amount of traffic fumes that could reach her there in her room, behind her closed door, was miniscule.

To me this kind of obsessiveness is easily bred in a situation where you have this dysfunction assailing you that you don't really understand, and which you have no control over. The requests for no mobile phones or wifi, and for people to close their windows, were clearly (possibly exaggerated) attempts to get some feeling of control over their surroundings for these women.

I should be more understanding of these motivations, having been through what I have been through for sixteen years. I once thought that mobile phone signals and wifi made me feel worse, though I now suspect that this may have been a mistaken belief bred by the terrible insecurity inherent in an illness that I couldn't control. I have recently got wifi into my own home here, after having used mobile internet before that, and feel no change at all in my state of health.

I have no doubt that those people I briefly shared living quarters with in Breakspear were genuinely ill, and did have sensitivities that were not easily explainable. Most of them reported having been told that they were "pazzo", Italian for "crazy", at one stage or another, another thing that many with ME/CFS can relate to.

One lady, the one who asked us to close our windows, told me that she basically lives in her car, as she cannot generally stand the environment of her home, full as it is with chemicals and electrical currents.

These are all people who are suffering. And this suffering can cause a certain obsession with your state of health, something I have experienced too. This obsession itself can become unhealthy, though, and cause you to act in ways that alienate people and leave you even more isolated. One thing I did notice was that most of the patients there talked at length about their own condition, but showed little interest in my own particular situation, and asked me few questions about my experience.

I was glad to get out of the Breakspear guesthouse, the atmosphere had become a little oppressive. It confirmed, if nothing else, my own personal approach to the condition, - which I am fortunate enough to be well enough to carry out - which is to only talk about it to people I know well, and who already know a little of what I have been through.

The fact is that sick people who are consumed by their illness and can talk about nothing else, are tiring and alienating to talk to. Illness, if we are not careful, can make us self-obsessed and tedious. I have been one of those people in my time, and am thankful that I have, for now at least, reached a stage where my life is not so overwhelmingly effected that I can't think or talk about anything else.

Others are not so fortunate, and it is difficult for them to know how to approach the whole question of what to say to whom and when.  Being that ill is heart-breaking, having your life ruined by illness is hard to take, especially when no-one can tell you why it is happening.

It is difficult to achieve that perfect balance between not talking at all about your ailments, and becoming obsessive about them. The problem is that, if you're not crazy before becoming ill with conditions like MCS or ME, having to live with them can easily take a toll on your sanity.

SEVEN DAYS IN IBERIA

I flew to Portugal on the Monday of last week. I flew in to Faro and stayed in the city for a couple of days. From there I went to Cordoba in Spain, and then back to Seville, where I spent last weekend. I came back on the 23rd, stayed in Dublin for a night, and finally made it back to my home on Christmas Eve.

I was away for eight days in total. This is the longest trip away I have had since I first encountered CFS, more than sixteen years ago. It was, in many ways, an eye-opening experience.

I have written recently about the recent progress that I have made in my health and energy levels, and I was interested to see if it held up over the space of a week long holiday. And I think I can fairly firmly say that it did.

My first full day in Portugal, I went for a wander around Faro's old town. Faro is a fairly underrated part of the Algarve, and the old town is actually really pretty, with cobbles, narrow lanes and alleyways and a lot of the ancient walls of the city still preserved.

I spent about two hours out and about, walking, stopping, wandering around museums, stopping, having a brief look at the Cathedral, visiting the Capela dos Ossos (the Chapel of Bones) (right), then walking back to the hotel. I have done this much on previous trips away, walking slowly, stopping and starting, guarding my energy carefully.

I had a nap, and then an incredibly inexpensive Prato do dia that the Portuguese offer in restaurants at lunchtime (€6 for soup, a main course of duck with rice, a bottle of water and a desert), and decided to keep going. I took a bus to Estoi, a village about 10 kilometres outside of Faro, and looked for the Roman ruins that were supposed to be there. It turned out that they were at the far end of the village from the bus stop, and so I had to walk close to a
kilometre to get there. The ruins were open, but deserted, so I had the place to myself for about an hour until I could catch the bus back. They were interesting enough, though a little limited, but I was happy to be there, wandering around and then sitting in the sun, in seventeen degrees (63 degrees Fahrenheit) on December 17th, in a t-shirt, surrounded by the vestiges of Roman Portugal.

Later that day I came back to Faro, went for a walk to find a supermarket, came back to rest, and then went for a last walk around the city, which was dead on a Tuesday night in mid December. I came back to the hotel, and slept soundly.

This was probably the most active day I have had for years, and the pattern continued. I took a bus to Seville on the Wednesday, and then a train to Cordoba. On the Thursday I did a lot more walking around this city, the centre of which is fascinating, the highlight being the Mosque/Cathedral near the river.

I had miscalculated with the location of where I was staying in Cordoba, and found that it was a good fifteen minute walk to the interesting areas of the city. I did this walk twice on the Thursday, there and back, as well as wandering around the inevitable lanes and alleys, getting lost while looking for the art galleries, then walking back to the Filmoteca cinema near the mosque, as well as walking around the mosque itself, and then doing a little present shopping.

So I must have walked close to eight kilometres (five miles) in total on Thursday, an enormous amount for me. I was tired after this, naturally, though not exhausted, not sick, and not damaged for a day or more. In fact, the main problem was that my leg muscles were stiff, they are simply not used to doing the amount of work that I put them through during the first three days of the holiday.

Cordoba itself is charming and exotic, and the Mosque/Cathedral is truly extraordinary. It is called La Mezquita/Catedral in Spanish for a reason, it is in fact a functioning Catholic cathedral, though the majority of the enormous building looks just like an Islamic mosque.

This is because that is exactly what it was for hundreds of years. North African Muslims ruled most of Spain for centuries, from the seven hundreds until into the fifteenth century, until just before Columbus left Seville to discover the new world. This Moorish

influence can be seen in the architecture right through southern Spain, as well as in the people, many of whom are North-African in appearance, and also exists still in the language, which has a number of words of Arabic origin.

The Cordoba mosque was built over hundreds of years, slowly expanded by each successive Muslim ruler in the eight and nine hundreds. Cordoba, at this time, was the largest city in Europe, and the centre of Muslim Spain. The building itself is enormous, with hundreds of columns and arches, and very few windows and subdued lighting. Walking around the mosque, and keeping away from the centre, it is difficult to understand that this is a Christian cathedral, but it is.

In the fourteen hundreds, the Christian forces began to take back control of Spain from the Muslims, and Cordoba fell to them around then. The city was then under Christian control, though they left the mosque standing. Then in the fifteen hundreds, they decided to

gouge a space out of the centre of the building, and build a Cathedral there, while leaving the rest of the place intact.

So the Cathedral itself is a fair size, with a coro and a large altar. They also raised the roof of the mosque, which has fairly low roofs generally, and now the Cathedral part is towering, immensely tall and impressive, with Sistine Chapel-like paintings there.

The effect is disorientating and fascinating. You have this combination of Muslim and Christian, East and West, in the same gigantic, stunning edifice. It is really jaw-dropping, the most extraordinary building I have ever seen.

From Cordoba I went to Seville, and this turned out to be the highlight of the trip. I spoke to my sister yesterday, she has also been to the city, and she said that, even though she was only there for a day, it was probably the best city she has been to. And I think I agree with her.

It is a combination of things. The first thing for me is the juxtaposition of the massive and the tiny. The Cathedral in Seville (which also used to be a mosque, and which still retains the tower and the square from the original Muslim building) is apparently the largest in the world, and is where Columbus is buried. It is

impressive, though when travelling in Iberia you see so many churches and religious artefacts that - not having any religious belief myself - it all begins to get a little samey. Still Seville's Cathedral is overwhelming in its size and grandeur.

Then there is the Plaza de España, a wide open space built in a semi circle, surrounded on one side by this half moon shaped ornate building, with towers and arches and columns. There is even a moat around it, with gondolas, reminiscent of Venice. Beside this is a large park, filled with exotic plants and birds. I hired a bicycle in

the hostel I was staying in and, for the first time in fifteen years, got up on a saddle and cycled around the city and the park, slowly but steadily. It was sheer pleasure, in the Andalusian sun, weaving in and out of the paths in the Parque de Maria Luisa.

And then there are the labyrinth of little streets, alleys and cobbled paths in the old part of the city, that inevitably I got lost in more than once. They were built like this in all of these southern cities as protection from the intense summer sun, so you have mazes of these tight, small spaces that are the complete opposite of the gargantuan monuments in other parts of the city.

More than anything else, though, for me Seville was a kind of sensual assault. There was the food, which was patchy, but really good when it was good, rich lamb stew and roquefort tortilla and fried fish. There was the weather, and the pleasure of brightness and cloudless skies and sun in December.

There were the people, dark and Arab-looking as many of them are, and their natural friendliness and warmth. I was particularly struck by the women in Andalucía, some of whom were jaw-droppingly beautiful. More than once I was served by someone on a supermarket checkout who should have been on a catwalk somewhere in Milan or Paris.

There was the art in the Museo de Bellas Artes, and the beauty of the architecture of every part of the city. And the Andalusian accent in Spanish, which takes a lot of getting used to, all dropped consonants and hisses, very idiosyncratic. And then there is flamenco, which is truly one of the great art forms invented by human beings.

I went to a Flamenco bar on Saturday night, La Carbonería it was called. There was a performance by a group of artists, the classic Flamenco trio of guitarist, singer and dancer. These are the three branches of flamenco culture, el toque, el cante, and el baile. It
was spine-tingling to sit there in Seville, one of the homes of flamenco, and hear that intense singing, and to witness the sexy, proud, passionate dance. I cycled back to my hotel that night about half past one, happy, buzzing, thrilled.

I left Seville on Monday morning, and finally arrived home the afternoon of Christmas Eve, having had to go back to Faro to catch my flight. I was sad to leave, and happy to be going home. I felt like a new person, going home, as if something fundamental had changed.

And I suppose it has. The progress that I talked about in my last post, and which I was a little unsure of, is certainly holding, and is real. Comparing my last time in Spain - in March, when I went to Granada and Malaga - with this holiday, I was certainly able to do more this time, and was less exhausted doing it.

This obviously added to the intensity of my experience in the last week, the feeling of being able to do something approaching "normal" holiday activities, and to not have to restrict myself too much because of my condition, - for almost the first time in sixteen years - is profound and significant.

Again, it is important to emphasize that I have not recovered, not fully, but I have made a noticeable step forward, and I am still adapting. But it is wonderful, I think I can say that now, it feels like being let out from prison in a way, and gives me a feeling of freedom that I haven't had for years.

I haven't talked about it much with anyone really, I have mentioned it in passing to some of my family, but it still seems too soon, and I retain that superstitious feeling that if I talk too much about my improvement, it will go away. This makes no sense, of course, but it is a habit of mind bred from sixteen years of disappointments and let downs and wrong turnings.

I am not used to definite improvements in my health, so this is all new territory for me. Whatever about that, my seven days in Iberia are not something I am going to forget easily. 

PROGRESS

So it seems that I have made some progress. This is not something that I really know how to work with, to be honest, as it is such a rare occurrence, in my sixteen years of illness, but it does seem to be happening.

I have written ad nauseum in this blog about my rebreathing mask, and the extra carbon dioxide that it provides. Posts can be found here and here on this subject. Briefly, a doctor in Breakspear Clinic in the UK measured the state of my autonomic nervous system, and discovered that I have reduced levels of carbon dioxide (CO2) in my system.

CO2 and oxygen are both necessary for certain processes in the body, and they must exist in a correct balance, or else things go awry. I am simplifying here, but that's the gist. To correct this imbalance, I wear a mask every night in bed that traps the CO2 that I breathe out, thus allowing me to "rebreathe" this carbon dioxide and so boosting its level in my system.

To be honest, when I started, I didn't believe for a second that it was going to help. This was not because I had any particular medical knowledge that helped me form that opinion, it was simply because I am used to treatments and medications and approaches not working. I have tried a good range of treatments over my sixteen years with ME/CFS, and almost nothing has worked. I have kept going, but without much belief.

And so at first, back in August, I used it for a week, and stopped when I got a stomach bug, intending to start up again. Then I had a bad crash, which in retrospect was almost totally down to abruptly stopping using the mask. Once I started with it again, I picked up, and eventually got back to my usual self.

And just in the last two or three weeks there are even signs that I may be making some overall progress. I have experienced a surprising increase in stamina, I don't get as exhausted by doing simple tasks as I used to, I have been able to work more, feel more resilient.

In truth, though, I am uncomfortable talking about this. Partly this is superstitious, a fear of jinxing something that I have waited so long for. Talk about it too much and it will go away. I have had false dawns before, and it is unimaginably painful when it turns out that the improvement you thought you were making turns out to be an illusion.

Also, I am not sure how to react to the slight increase in energy and functionality that I am experiencing. The issue is that I have built my whole life around having to manage and save energy, every part of my existence has been controlled by my condition, practically every decision I have made in the last decade and a half, major and minor, has been influenced by the knowledge that I am operating at a reduced level compared to most people.

I have the mindset of someone who constantly has to take care. And though this has not changed overnight, it is less true. So it is an ongoing process for me to adapt to the increased possibilities that feeling better allows. Things that I have trained myself to not even think about, like having a relationship, getting a real job, living on my own, now come into view.

So what kind of improvement am I talking about? It is somewhere between 5% and 10%. This may not sound much, but it is more significant than it appears. One area that is certainly helped is my orthostatic intolerance, which is the problem many people with ME have of remaining standing, or even upright, for any length of time. This is still an issue for me, but it is measurably improved on what it was.

I can now be somewhat active for a morning and an afternoon - teaching or shopping or visiting friends or family - and still be able to consider doing something in the evening.

Just today I was out this morning running errands, had a nap, and then was going pretty much from 12.30 to 6.30, driving an hour down the country to meet friends for lunch, driving back, visiting someone in hospital. All without a rest or break. And now I am writing my blog, and preparing clothes for a trip that I am planning next week. I may have been able to do all of this before, but with much more difficulty and grief and exhaustion.

In sum I suppose I now feel, at least part of the time, the way most people feel all of the time. It seems like I am approaching that most mundane - but most elusive - of goals, "normality". I am not there yet, but I can at least see the outskirts of Normal City. The whole experience is so surprising, and different from what I am used to, that I don't know quite how to react.

The other point is that it is so long since I felt healthy and normal - a decade and a half, in fact - that I am not sure I would even recognise health and normality if I reached it. I am also in my early forties now, compared to the person in his mid-twenties who first entered this horrible labyrinth, so I assume entering early middle age will naturally reduce energy levels anyway.

There may be more improvement to come. I was told to use the mask for at least four hours a day, though six if possible, and I am now up to five hours nightly. I find if I increase the duration too quickly it makes me more tired, so it has to be a gradual increase. Still, perhaps when I get up to six hours, or more, I will feel even more benefit. My head is spinning at the thought.

The last four months have been a rollercoaster. From the pits of a relapse to the hope of a new me, I don't really know yet how to react. I am going to Spain and Portugal on Monday, for a week, on my own, travelling around. If nothing else, that will illustrate exactly how I am, and what I can now manage.

Though old habits of thought die hard. For now, one of my main priorities is simply to ensure that I don't get any worse. It has happened before that I have had my worst relapses just at the times when I was feeling the best. First protect the gains, and don't slip back. Then figure out what it all means, and what new possibilities are opened up to me, if any.

I just hope that I don't wake up one morning and realise that all that improvement that I thought I had made has just disappeared. After sixteen years of grief and disappointment and loss, it is hard to really believe in a genuine upturn, a real positive change. It is going to take time to know what this all really means.

SICKIVERSARY

Today is my sickiversary. As the name suggests, it is the anniversary of the day that I count as the beginning of my experience with ME/CFS. It was sixteen years ago today. Sixteen long years.

First of all I need to give credit to Jocelyn over at the excellent blog No Poster Girl, for coining the phrase "sickiversary". I think I read it first on her Facebook page though it may have been mentioned in a blog post. It struck me at the time as something worth stealing, and here I am, stealing it!

Usually, an anniversary is something to celebrate. A sickiversary is not. Many of us with ME may actually have trouble pinpointing the exact date of the beginning of our condition, and I know for me I could have chosen three or four dates. But November 30th seems appropriate because the day before November 30th, sixteen years ago, was the last day that I can say that I was more or less well. That seems as good a point as any to begin with.

So what happened on November 30th, 1997? I got a cold. Nothing more, just a head cold. The important point was, though, that I had had a year of constant infections prior to that, a lot of sore throats, chest infections, colds. The cold that began on November 30th was the culmination of twelve months of illness.

At the time I was living in Lisbon, Portugal, teaching English. I was twenty-six, just starting to think about what I was going to do with the rest of my life. Pretty much all of 1997 was taken up with being sick or recovering from illness, nothing serious but just these constant nagging infections.

Because of all of the sick days I had to take, I started to get pressure from work, and then began to go in to work when I really wasn't up to it. This exacerbated my health situation, and meant it took me weeks to get over a simple throat infection.

Of course I was living in a foreign country, and so was a bit isolated there, and also really didn't know what was going on. I was young and had high expectations from myself and from life, and when neither matched up to these expectations, I didn't know how to handle things.

Still, I did have periods of relative health during 1997. In fact, from the beginning of the school year in September until late November when I came down with my cold, I had been relatively illness free. Yet something happened with this winter cold I caught, the runny nose and cough went away within three days, yet this crushing, debilitating fatigue did not.

I went back to work, though I knew that I wasn't able, and actually managed to struggle through three weeks of teaching until I could go home for Christmas. I remember those weeks really well now, even sixteen years later. I suppose I felt then similar to how I feel now. I took a taxi into work each afternoon as I couldn't make it to the bus stop, crawled through my classes, and came home and collapsed at night.

Those few weeks are quite clear to me now. I remember one night in particular. I had recently bought the Radiohead album OK Computer, and this evening I again took a taxi home, shuffled up the stairs to my flat that I shared with two other teachers, and collapsed on to the bed. I put on the Radiohead album on low volume and simply lay there, unable to do anything else. The feeling of being utterly drained is still with me, I can still feel what it was like to be totally incapable of moving in any way, along with the questions I had regarding what was happening to me. I had no idea what was going on.

There have been, as you can imagine in sixteen years, a lot of twists and turns along the way since then. I've been asking myself recently, how much of that twenty six year old is still left? I'm not sure I can answer that.

What I am now is in large part what ME has made me. I have now been dealing with chronic illness for almost exactly two thirds of my adult years, and so I can barely remember what it is like to be able to face into a full day of activity, or spend a day without napping in the middle, or to go twenty four hours without a wave of exhaustion assaulting me. I was still in formation back then, still in the process of becoming, and this process never reached a completion.

So in a sense I feel a little stunted. Suffering from arrested development. While my friends and contemporaries were getting married, having kids, buying houses, building careers, being adults, I was living with my parents, working a couple of hours a week if I was lucky, stumbling through life from one crisis to another. ME/CFS has taken a huge bite out of the best years of my life, and I can never get them back.

How was it possible that I used to be a person that got up, and then started doing stuff for a whole day, until going to bed again? How does someone do that, work a full day, and then maybe go out, or to a night class, or go home and talk to their family, and not have to constantly rest just to make it through each twenty four hour period? I have been so conditioned by sixteen years of how I have to live, of the compromises I have to make, the things I have to turn down, the life events that I have missed, that picturing what it would be like to be healthy is almost beyond the scope of my imagination.

For a long time I suffered a lot of regret and sadness about how it has all turned out, though in the last few years - despite some crashes along the way - I have managed to move out of my folks' place, and to work a little more, to get back something of what I have lost.

I am relatively philosophical today, this day of my sickiversary. Part of that, I think, is from the experience of blogging about this condition. For one thing it is a form of therapy, a way to communicate some of the experience of living every day with this thing. A forum for letting off steam.

For another, I have had the opportunity to read about other people's experiences - many of them much worse than mine - through other ME blogs that I have begun to follow. This has put my own sixteen years into perspective, and has shown me some of the things that I should appreciate about what I have, rather than bemoaning what I have lost.

It also helps that I have just come through a recent relapse, one that knocked me back badly, and now seem to be at least back to my old self, or even actually making some progress. I have been using a rebreathing mask, which I feel is now having something of a positive effect, though it is subtle. Some days I have short periods when I feel the clouds clear a little, and feel the crushing fatigue lift, though I am a long way from being cured. However, the increased CO2 I am getting from the rebreathing mask does now feel like it is doing something.

I may write about this more in the future, when things have settled down a little and I am more sure about how I am. I also still have these debilitating periods pretty much every day when it's difficult to keep my eyes open, or when it feels like I am carrying a concrete block though life, though they are fewer, and don't last as long. For now I am trying to adapt to the slight increase in my energy and well-being, and not count my chickens.

Despite this recent subtle improvement, it still seems remarkable to me that I used to be well once. Sixteen years ago I had never even heard of CFS, or ME, and couldn't have imagined what my late twenties and thirties would bring me. I had what the Spanish call ilusión, a kind of mixture of ambition and desire and wonder about the world, a faith in the future.

This faith, this ilusión, has taken quite a battering in the last decade and a half. Sixteen years later I am still here, still fighting against this chronic situation, still trying to understand what has happened, and why. Sixteen fucking years. Happy sickiversary to me. 

DSYAUTONOMIA, THE AUTONOMIC NERVOUS SYSTEM AND ME/CFS

The question of the fundamental cause of  ME/CFS is an intriguing one. It's one that I find fascinating, mostly because it effects me personally, but also as it is something that medicine largely seems to have no answer for. It's like a puzzle, an intellectual challenge. I am only surprised that more scientists haven't shown more of an interest in working out the enigma.

From what we know, and from our experience, the immune system certainly seems to be implicated, but in my own case my symptoms appear to be more closely tied to dysautonomia. Dysautonomia is simply a malfunction of the autonomic nervous system, and something that most people with ME/CFS have, in one form or another.

The next question, of course, is What is the autonomic nervous system? The autonomic nervous system (ANS) is the system in our bodies that controls anything that is not conscious on our part. This includes heart rate, blood pressure, digestion, saliva production, breathing, sweating and temperature control. It's what happens automatically when we're doing something else. It's supposed to run like clockwork.

Most people with ME will recognise the above list, as they are all areas people suffer with. Personally I have problems - like most PWME - with regulation of blood pressure, I can't stand for long periods and feel drained if I have to, and being upright at all can be tiring.

I don't really sweat, even in my sauna at 50 degrees Celsius, I have had problems regulating temperature, I have low saliva production, some digestion problems, sometimes a tight chest, and a heart that occasionally pounds or beats too fast. This is all related to the autonomic nervous system.

I recently discovered the website of a group called Dysautonomia International, which represents people from a wide range of conditions that all suffer from elements of this problem with the nervous system. It makes reference to POTS (Postural Orthostatic Tachycardia Syndrome), which a lot of people with CFS/ME experience, as  a difficulty staying upright or standing, and a tendency to faint.

There is a certain amount of research being done on this area among scientists, and I know that in Breakspear, the clinic just outside London that I am attending, they put quite a lot of emphasis on treating the autonomic nervous system.

They do what they call an Baseline Autonomic Index. To do this they attach sensors to the chest, stomach and heart, and clips on the fingers to measure the blood gases, and also put a band around the chest. And they measure heart rate and pulse, as well as the levels of oxygen (O2) and carbon dioxide (CO2) in the blood, blood pressure and breaths per minute.

Also part of the test is a challenge to the central nervous system. In my case the doctor asked me to take six very deep breaths, one after another. Even though I was lying down I felt quite light headed quite quickly. This, he said, was due to a lack of CO2, which he could measure from the sensors. To counter this he gave me a rebreathing mask, which I have written about before.

The mask is worn basically to correct the lack of CO2 in the body. This in turn is supposed to help the levels of O2, which are necessary for producing energy in each cell in the body.

Another one of the therapies that I have been looking at recently is called Somatic Experience therapy. A friend of mine - also with ME - has had good results from it, she says. It aims to engage the parasympathetic nervous system (PNS) - the so-called "Rest and digest" part of the nervous system - and to turn down the sympathetic nervous system (SNS) which manages the "fight or flight" impulse. The difference can be seen here. The SNS is for emergency situations, though what happens in CFS sometimes, is that people get stuck in the "fight or flight" mode long term, thus causing many of the symptoms common to dysautonomia and also to ME.

It is something I may try in the future. Another thing on my list is H.O.T. This stands for Home Orthostatic Training. It was developed, as far as I know, by Professor Julia Newton, in Newcastle University, who has done a lot of work in this area.

The training is quite simple. The patient stands against a wall, with their feet 15cm from the bottom of the wall, and their head leaning against the wall. This creates a kind of tilt. The idea is to do this for thirty minutes, though the vast majority of people with ME will have to build up to this period of time slowly. I can imagine starting at 30 seconds, and increasing from there.

It is important to say that for people with ME/CFS - and especially for those who are more effected - this may not be possible, and may induce a faint, so should only be done with caution and probably with someone else there. They also advise that you discuss this with your doctor, and also have cushions around you in case you do pass out.

The general idea of HOT is to retrain the body to tolerate being upright, standing, maintaining blood pressure. I have actually been in touch with Professor Newton, I emailed her and she kindly responded within a few days. She says that for those who can tolerate the therapy, they have got good results with improvement in energy and greater tolerance of being upright. There is info on a preliminary study here. 

Again we can see that it is about retraining or resetting the autonomic nervous system. It is about correcting what has gone out of balance, getting the ANS to behave as it should.

This is the key, I think, resetting the autonomic nervous system. This is what these  therapies do, and what I feel I really need. It makes me think of my laptop, which at times begins to malfunction. Processes like opening a file or playing a video, that are normally almost instantaneous, become slow and sluggish. The connection to the internet drops, or it refuses to sleep when I close the top, or it doesn't recognise my printer when I connect it.

Whenever this happens, my first instinct is, naturally, to reboot it. Turn it off and turn it on again. Invariably, this simple action improves or resolves the problem. More often than not my laptop is working perfectly again after a chance to reset itself and start again, its central nervous system now in synch.

And that's what I wish someone could do for me, I feel that I need to be rebooted. I need to be switched off, and then switched back on again, to be able to reset. I feel profoundly out of synch, out of rhythm, unbalanced. I am sleepy during the day and sometimes can't sleep at night, my energy runs out way way before it should do, I can stand for a few minutes but then feel the blood draining from my head and brain, and lose basic functionality. I am stuck in this malfunctioning rhythm where things just don't quite work as they should, and where everything is slow and sluggish and out of phase.

And all of these approaches, the rebreathing mask, SE therapy and HOT - as well, no doubt, as many others - seek to help this rebooting process. They may or may not work for me, though I intend to try them all, but somewhere here I am convinced is a key to what has gone so wrong with my autonomic nervous system.

There is a running joke from the British Channel 4 sit-com, The IT

Crowd, about the slightly dysfunctional IT department in a London company. Any time anyone rings them up reporting problems with their computer they get the same reply from the techs there - "Have you tried turning it off and turning it back on again?" This is the full extent of their expertise. I just wish I could turn myself off, and then back on again, and see what happens. 

A MASK, A SAUNA, AND OTHER CFS PARAPHERNALIA

I often wonder what someone looking in the window of my bedroom would think if they watched for any length of time. And no, that's not some kind of kinky invitation to voyeurs, I'm talking more about the various treatments for my CFS that I have tried, and that may look a little unusual if seen from outside.

When I am at home, I spend most of my time in my room. The house I live in is in a housing estate with different streets backing on to one another and so, even though my room is at the back of the house, it is still facing the backs of other houses. The other houses are all in a row so there are probably four or five houses where their occupants could potentially see through my window and into the room, if the curtains are open.

In truth, even the windows nearest to me are about forty metres away, so for a good view a person would need binoculars or really good eyesight. Still, with the light on, at night, with the curtains open, a good view could be had of the goings on in my room.

I really like the orientation of my room, facing, as it does, to the south. If there is any sun at all it will come directly in through my window, and because the house is well insulated, the room will stay warm most of the day, even in November. I also really need brightness and sunlight, and really hate these short dark days of winter, so I tend to keep the curtains open as late as possible.

Anyway, I'm sure that there isn't anyone looking in, but if they did, they would see some unusual things. Last year I had treatment with the Perrin technique, and that involved a lot of self-massage. I had to put olive oil on my chest, neck and back, and massage the skin upwards towards the collar bone.

The trickiest part of course, was doing the back. On the Perrin website they actually sell implements for massaging the back, but I decided to improvise, and rigged up a large flat duster that had a handle, elastic-banded a smooth plastic bag to it and turned it into a back massager. I could reach right down to the base of my back with it, and sweep upwards towards the neck.

Usually when doing it I closed the curtains, but I had to do it three times a day, and so couldn't always be bothered. I can imagine that from outside it must have looked like some kind of bizarre ritual of self-punishment, flagellation with a red duster, maybe something kinky!

Then, three months ago I bought a Far Infra Red sauna. There were a number available, but I got the cocoon model, which is basically something that looks like a flat, sliver sleeping bag that you attach to an electrical control box. I am in here every second day now, all wrapped up in my alien-looking cocoon, with wires coming out of it, looking - to anyone who happened to have a handy telescope at their back window - for all the world like some kind of Frankenstein contraption, or an extra-terrestrial examination chamber!

And then there is The Mask. I have written about The Mask (the name itself suggesting some kind of horror movie) before, here. I was given it by the Breakspear clinic, and told to wear it for four hours a day, as a way of getting the levels of carbon dioxide in my blood up.

 

So now I mainly wear it in bed, but occasionally I have worn it during the day. It looks like something that the guys in Breaking Bad wear when cooking crystal meth, or like a gas mask they might have worn in London during the Blitz.

Once or twice I have had to go to the bathroom while wearing it, and couldn't be bothered to take it off, and so have ventured out to the landing and the bathroom, hoping not to bump into one of my housemates, and then have to explain everything. Once I even had to get up at night to go to the toilet, with the mask on and, though I didn't see anyone, I could only imagine the reaction of one of the people I live with if they had bumped into me coming out of my bedroom, looking like Walter White coming from his meth lab.

On many occasions I would have been visible for anyone across the gardens and in one of the upstairs rooms in the houses that back on to ours. It does make me smile to think of someone looking in and seeing me sitting in my armchair, breathing like Darth Vader through this big hunk of plastic, and wondering what the hell I was doing.

In general things have settled down a little, after my severe relapse, and then slow recovery. The mask, though it helped me to pick up in the worst days of my crash, doesn't seem to be helping much now. I am persevering, and hoping for the best.

I have stabilised though, and am a little closer to my old self, though still about ten percent down on my pre-crash levels. I have found that using the mask a lot during the day makes me sleepy, and so I am concentrating on using it more at night in bed. All of the measures that I mentioned above: the Perrin technique last year; the far infra-red sauna; the rebreathing mask; all of the money and effort and time that I have poured into these attempts at recovery, have resulted, so far, in precisely nothing. Zero, zilch, no progress at all. In fact, if anything, I am a little worse than I was twelve or eighteen months ago. It is necessary to keep going, but sometimes it really does feel like bashing your head against a brick wall. 

RELAPSE 3: SURVIVING

In his book The Selfish Gene, Richard Dawkins described living organisms as "survival machines". We are, his point was, basically machines whose function it is to procreate and get our genes into the next generation, thus insuring their survival. We are hosts for our genes, and they make us act in a way that makes sure they go on living.

That's pretty much how I feel, like a 'survival machine'. My goal, at the moment, is to survive, and little else. After a long time striving to get better, my objective now is to insure that I don't get any worse. My life is about getting through the days, and getting out the other side unscathed.

It is now eight weeks since I crashed, and it's been a bit of a rollercoaster. The first few weeks were hell, I stabilised a bit, and then started using my rebreathing mask, and began a recovery of sorts. I improved quite quickly over the space of a week, but now I have stalled, and am not, for the moment, getting any better.

The rebreathing mask, as I wrote about in the last post, was prescribed to me by the Breakspear clinic. I have low levels of carbon dioxide in the blood, and the mask is supposed to raise those levels. This happens because when I breathe out while wearing the mask, the mask traps the CO2, and then I 'rebreathe' this CO2 in again, thus bringing my carbon dioxide up to normal levels.

I was using it for a week before my crash. I stopped using it when I got a stomach bug, intending to start again when better, then crashed, and didn't go back to it for a month. When I did, I immediately felt better.

Yet this improvement has now stopped. I have stalled at about ten or fifteen percent less energy than pre-crash days. I was already pretty limited, now my limitations have been exacerbated.

Everything is just that little bit more of an effort, that little bit more difficult. I'm dragging myself around with extra struggle, as if someone had added a couple of kilos to this phantom backpack that I feel like I am carrying around. Standing and cooking dinner takes more out of me, I have now to sit down in the shower, I haven't been out of my home town since it happened, I have seen two of my friends, on two separate occasions, for half an hour each, in seven weeks, and hardly any of my family. Every day is just that ten or twenty percent more of a battle than it was just two months ago.

I have gone back to work, but at a reduced level. I taught two hours last week, and will do four this week. I anticipate maybe getting up to seven or eight a week, compared to twelve to fourteen hours a week pre-crash. I am still lucky enough to be able to work - I know many PWME do not have that ability - but everything will have to be reduced, for now.

Because of this, financial survival is now another necessary objective. I was never comfortable financially, but did manage to save a little to pay for treatment, but now it will be about being able to make rent and pay the bills every month, and little else. I am going to have to cut back on simple things, like going to the cinema, or buying that extra piece of expensive sheep's cheese.

So basically I work, buy food, rest, sleep, cook, eat.  This will be it for the time being. I spend a lot of time on my own, out of necessity, and do feel quite isolated, though in truth I have no desire at the moment to see anyone. A bit of solitude right now is probably all I can cope with, being with people involves either having to pretend that I am better than I really am, or else explaining why I am not well, and how I am feeling, and neither prospect is appealing.

I am continuing with the rebreathing mask, am sleeping in it for a few hours a night, which is awkward but doable, and am using it for a total of about four hours. Breakspear advised me to try it for at least eight weeks, so I'll keep going and see what happens. I have also started using my FIR sauna again, and am up to 40 degrees, and will continue to increase the temperature. No progress from anything yet, though hope springs eternal.

I continue taking the anti-depressants, which help keep me on an even keel and smooth out the bad times. Without them I would surely be a mess, so I am grateful for the balance that they provide. I find that they allow me to take things as they come a little more, to just accept what has happened and to try to deal with it, without melting down into self-recrimination, despair and regret.

It is a period of adjustment, and will take me a few months to work out exactly what I can and cannot do. Right now I am being cautious, and trying to take care. Right now I am thinking of little else but survival.