Thursday, December 26, 2013


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. 

Saturday, December 14, 2013


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.