Friday, April 18, 2014

SOLITUDE

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Sunday, March 30, 2014

CRASH

I have used the word "crash" in the past, both here on my blog and in real life, to mean an experience that any of us with ME will be familiar with.

A crash, in ME-World, is a period of time when we have done too much, or have had an overload of stress, or when we have been hit by allergy or infection. It is a shutting down of our normally functioning systems, and results in exhaustion, pain, sleeplessness, anxiety, illness.

A crash is a period of time when things come to a halt, when normal life is stopped. Many of us experience ME/CFS, at the outset, as a crash or series of crashes, where we move from functioning to malfunctioning. It can often be a quick process for many people, a real 'crash'.

Last week I had a 'crash' in two senses of the word. I was driving down a country road, somewhere that was not too narrow or rough, at about the speed limit, or a little above, when I turned a corner and realised that the road surface was covered in hail. There hadn't been any hailstones where I had just come from, but obviously in this section of the road there had been a localised hail shower.

It took me by surprise, I braked to slow down, skidded, lost control and flew into the ditch at one hundred kilometres (sixty miles) an hour. My car ploughed through a wire fence and turned on its side.

Inside it, I was dazed and shocked. I remember thinking, "is this really happening?" Kind of a stupid question, but it was a very surreal experience, to have lost control and turned on my side in my car, to have ended up in a field in the Irish countryside.

I cursed, and groaned, and cursed some more. I didn't realise at the time how lucky I had been, I was just angry at the bizarre turn of events. I had been driving for sixteen years, and had never had a real accident. I didn't know how to react.

I am very short-sighted and need glasses to see any thing well, and these flew off in the crash. I scrabbled around for them in the tilted car, without success, and finally decided to try and get out. I managed to open the driver's door vertically and get out that way, as if it were a hatch on a submarine.

By this time other cars had stopped. People helped me, I was dazed and didn't really know what was happening. I sat in someone's car, still trying to understand what had happened. An ambulance was called, and the fire brigade, and the police.

The police arrived, I described the accident, I was taken to the ambulance, and a fireman found my glasses for me, which was an enormous relief, and in fact was the thing that caused me most discomfort in those minutes after the accident. The glasses were mud caked, but in fact almost intact, amazingly. I was just glad I could see again.

In the ambulance, the paramedic gave me the choice of going to hospital or not. He said that the procedure was, if the car turned over, to take occupants to the hospital and to strap them into a spinal board that immobilises the back and neck. Though he said that the fact that I had gotten out of the car by myself suggested that I was probably alright, and may not need to.

I chose to play it safe, so they strapped me into a board and put a collar on my neck. I was taken to hospital, and in fact was seen within thirty or so minutes. They tested my spine, which seemed to be fine, took an x-ray, and discharged me before midnight. The accident happened at about nine pm.

In fact, the whole procedure was immensely impressive, looking back on it. This was all new territory for me, and so I didn't know what was normal. But the emergency services were incredibly efficient, helpful, professional and caring. I had a life-threatening car crash at 9.15, thirty minutes from my house, and was back home about 12.30, with the all clear.

Here in Ireland there is a lot of talk in the media, in the wake of the economic difficulties, of the poor state of our public services, about things not working properly, but my experience from last Saturday night could not have been better. I also still haven't received a bill for anything.

The next day I was fragile, a bit anxious, and aching around my neck and back. I quickly realised that I wasn't able for anything, and really haven't been up to much all week. My activity levels have increased in the last few months, in the wake of improvements in my condition, but this was all wiped out this week as everything was a struggle.

So the accident has caused a second type of crash, though it is a mini one in ME terms. I had to cancel most of my classes this week, though at the beginning of the week I tried to teach some of them and quickly realised that I wasn't able to. Today, Sunday, I feel very slightly better, but still a little shaky and fragile. My back is still sore, though it is, according to my GP, probably muscular and will clear up.

The fact is, I could have died. Multiple people afterwards told me how lucky I had been. It was pointed out to me that I flew off the road exactly half way between two telephone poles. The ambulance man - I suppose to make conversation as we travelled to the hospital - told me that he had seen quite a few accidents where a car had hit a tree or pole and the driver died instantly.

This has been on my mind this week, naturally. I got out and walked away, relatively unscathed, when others would not have been so fortunate. It has shaken me. The car is a write off, so badly damaged that it is not worth repairing, and yet I have a few aches in my back that will probably fade with time.

More than one person has said to me, "someone up there must be looking out for you," which is a natural thing to say in the situation. Though I don't see it that way, all I can think of - in a connection to my previous post actually - is that many others have not been so fortunate, many others have died in the same circumstances. Where was the "someone" for them? Why was no-one looking out for them?

The truth is that my fate in getting out alive from the crash has no greater significance, is not part of some plan, is not down to "someone" looking out for me. I am not special. It is simple, dumb luck, a random event that happened to work out for me. Many have not been so fortunate, not because "someone" wasn't looking out for them, but simply because they had rotten luck and crashed in the wrong place.

Still, it is important to recognise my good fortune, to be grateful for it, and to learn from the experience, I believe. To recognise the value of simply being able to walk around and continuing to be mobile and independent, something that would not have been true if I had been paralysed, as many other people in my situation have been.

It is also true that I need to learn to be more vigilant on the road. I have been driving for sixteen years, and that was my first accident, but it is true that there are times when I am not as careful as I should be, possibly with a false sense of security after so many years of accident free driving. I am not reckless, but I could do with being more patient.

It is also indicative, seeing how bad I felt this week, that the autonomic nervous system is key to my CFS/ME. During a trauma like the one that I experienced, the body goes into flight or fight mode, engages the sympathetic nervous system, floods the system with adrenaline. This happened on an extreme, intense scale in the space of a couple of seconds last Saturday, and so had a lasting effect for seven days now, as my body has attempted to get over the shock.

This is purely the ANS trying to regulate itself, and this takes time. It is a lesson in itself. Luckily, I know my body at this stage, and knew when to take time off work, and knew to reduce my activity. I have heard of people developing CFS after car crashes, and this is no surprise, a trauma can unbalance anyone in a situation like this and, if they don't give themselves time to get over it, the ANS can become chronically imbalanced, the sympathetic nervous system permanently engaged.


My anxiety, which was heavy and intense at the beginning of the week, has slowly dissipated as I have rested and tried to relax. I am unable to say yet if this near-death experience will change anything in my life or not. I do know, though, that it is not something I will forget in a hurry.

Monday, March 3, 2014

EVERYTHING HAPPENS FOR A REASON......REALLY?

Illness is something that makes people search for answers. This is especially true of something chronic like ME/CFS, which is both long-lasting and largely unexplained. This condition can have a profound effect on how one looks at life.

Since I started blogging I have begun reading other blogs, of sufferers of CFS/ME and of other conditions. And one phrase crops up reasonably frequently in people's accounts of their illness, "Everything happens for a reason."

It is an attempt to find some meaning in a seemingly meaningless experience. Being ill seems to have no point to it, it is just empty suffering, and when your life is passing you by it is perfectly natural to wonder why this horrible thing is happening to you. As human beings we need to see meaning in our lives, and so we assume that even though the experience is purely awful, it must have some significance somehow. And so, "everything happens for a reason."

Those of us brought up in a religious environment are especially prone to this belief. We are taught from a young age that God is in charge of the universe, that he is all-powerful and controls everything, He is omniscient and omnipotent. And He has a Plan. We as puny humans cannot expect to understand the Plan, but there is one and we just have to accept this.

Thus, "Everything Happens For a Reason" (EHFAR). There are variations on this expression, "What is destined for you will not pass you by", is an equivalent, used by many. It is a way of coping with setbacks and disasters and difficult times and tragedies, and I am sure can be of some comfort to people who have lost control of their lives, in whatever way that happens.

It is reassuring to believe that, even if things appear senseless, that there is a controlling force behind everything that is bigger than us, that knows better than us. I'm sure that it can be a relief to let go and just trust in the Plan, let destiny have its way.

Of course it is not just the conventionally religious that believe this, it is a common enough statement in the general culture. The controlling force may not be God, but is often "The Universe" or "Fate" or "Destiny." It doesn't matter what terminology is used, the basic belief is the same. EHFAR.

For me, though, EHRAR is nonsense. It doesn't bear up to the most basic examination or scrutiny. This mystical idea of The Plan simply makes no sense. To accept it would be to believe that we live in the best of all possible worlds, and that there is some kind of perfect happy ending that is going to inevitably appear, as if by magic.

A brief look at the world and what happens in it gives the lie to EHFAR. What can the 'reason' be for the multitude of small tragedies and disasters that happen on a daily basis? What is the 'reason' for the recent typhoon in the Philippines, that killed thousands and thousands of people, including small children?

What kind of Plan involves the Holocaust, the Rwandan genocide, the Tsunami in Japan, Fascism, Stalin's purges, the never-ending mess of the Middle East? The list of disasters and cataclysms throughout human history is literally endless.

And then there are all of the minor, everyday catastrophes that happen to people every day of the week. 

People die in workplace accidents that should never happen, helicopters crash out of the blue, killing soldiers on training missions that had escaped unscathed from six months of combat. Children get degenerative diseases and fall seriously ill, people catch rare infections and never recover, a three year old in the west of Ireland recently crawled into a lift shaft and fell to his death. What can be the "reason" for that?

Again, what kind of Great Plan involves all of this suffering? And to bring the question back closer to home, what kind of Great Plan involves millions of people world wide developing ME? What is the 'reason' for sufferers of this condition losing years and years of their lives to disability and illness?

Of course, there is no 'reason'. Everything does not happen for a reason. There is no great explanation, no overarching Plan, no destiny, no fate, no outside force controlling what happens on Earth. To quote a great modern philosopher, Homer (Simpson, that is), "It's just a bunch of stuff that happens."

Stuff happens, that's it. There is no useful purpose served by my losing most of my youth to ME. Those people with severe ME are not part of some great Plan, locked up as they are in their houses, unable to get out, unable to live even semi-normal lives.  None of this has any greater significance, besides the normal meaning that any human experience has.

So what is the significance of the fact that EHFAR is bogus and empty?

Firstly, our lives - and our illnesses - are not part of some wider narrative. We are not characters in a story, moving inexorably towards some kind of redemption and healing.

We may achieve some improvement or cure, but this will be down to perseverance, luck, probably money, and the hard work and innovation of the medical community.

And that leads on to the second point, the kind of magical thinking that EHFAR involves is not helpful in dealing with, and recovering from, a condition as complex as ME.

Psychologically, it is important to be realistic and rational, precisely because this condition is, on the face of things, completely counter-rational. It is poorly understood, badly explained, and involves so many and so varied a list of symptoms that it is easy to lose perspective and sometimes sanity in the face of so much uncertainty.

Magical thinking does no-one any favours in the long run. For years, at my worst, I indulged in many of these habits of thinking. At times I was incredibly negative, believing that I was cursed, that I was destined always to be sick, that there was a power greater than me dooming me to constant illness. This often left me paralysed and depressed. 

At other times, when I was doing relatively well, I developed a false sense of security, believing that it wouldn't be "fair" if I got worse, in some way believing myself immune to further setbacks. Of course I pushed myself too hard these times, and had relapses, some very severe.

The truth is that "fair" doesn't come into it. There is no great Balance in the sky, we don't get what we deserve, no matter how much we would like to believe the contrary. Life is hard, bad things happen to good people for no good reason. We do not get our just deserts.

The truth is that there is no great Plan moving us inexorably towards health. It is not "going to be alright in the end." It is down to us to keep going, keep trying to get better, to keep trying new treatments and encouraging the medical and scientific professions to move research forward.

There are no guardian angels, no seventh son of a seventh son will cure us, there is no silver bullet, no magic cure. Connected to this, of course, is that those "alternative" therapies that most of us spend hundreds or thousands of euros, dollars and pounds on in the desperate hope that we will somehow be one of the few lucky ones that benefit, are nothing more than placebos. As has been said many times, if they worked on a consistent basis they wouldn't be "alternative medicine," they would be just "medicine".

This may all seem like a bleak and brutal view of the world. That may be so, although I don't see it that way. For me it is about facing reality, and doing everything, absolutely everything in your power to change what you don't like.

It is about being realistic about your state of health, and not living within some kind of delusion that everything will automatically be alright. It is about not giving up, and somehow accepting your condition because "Everything happens for a reason."

There is no Great Plan, no fate, no destiny. We need to keep our minds clear, and not be distracted by woolly magical thinking that only leads us down blind alleys.


Saturday, February 1, 2014

BREATHING

My recent improvement in health and energy levels has come directly from a rebreathing mask that I got in the Breakspear clinic in London. It has boosted the levels of carbon dioxide in my system, which were unusually low, and this in turn has had a positive effect on my wellbeing.

I have written multiple posts about this. Despite this, I wasn't clear on the exact mechanism of how increasing CO2 improved health and energy. A few months ago I met a guy in a setting totally unconnected to ME or health. I was to get in touch with him about another matter and he gave me his card, which had the term "Breathing expert" on it.

Naturally I asked him what this was. He explained that he has asthma, and has done some research into ways of managing the condition and helping him breathe better. He has now helped other people, teaching them how to breathe and explaining about how you breathe effects every function of the body.

There is a link here to the Buteyko Method, which was developed as a coping mechanism for asthma sufferers. It is all centred on carbon dioxide levels. The problem many people have is that we "over-breathe", in other words we are breathing too shallowly and too often. This doesn't allow us to absorb the correct amount of CO2 for proper functioning of the body.

I went to see this guy, K, a few weeks ago. He hooked up a cannula
to my nose, in turn connecting this to a small box-shaped device, which he plugged into the side of his laptop. Here he was able to measure, using software he had, my CO2 levels as I breathed. It appeared on the screen as I watched.

The optimum level of CO2 is 35mmHg (I don't know what this stands for), and I was consistently reaching around 30, though when I came in first I was down at 25, a function, K said, of me being a bit stressed. This was true, I had gotten lost looking for his house and was a bit on edge.

K said that he could let me have one of the CO2 measurement devices, and a copy of the software, so that I could monitor my breathing over a number of months. There is also a training function on the software, which aims to basically teach you how to breathe correctly.

I tried this training aspect when I got home, and have done it every day for twenty minutes, as advised. It is quite simple, you watch a little ball on the screen going up then down then up again at a slow, steady pace, and you match your breathing to the movement of the little ball. You breathe in when the ball is going up, out when the ball is falling.


All the time your CO2 is being monitored. The ideal level is to get over 35. During the training part, when I am following the advised rate of breathing, I find I am somewhere between 29 and 32. Interestingly, you can also monitor your CO2 at normal breathing rates. Without following the rhythm on the training programme, I am generally at somewhere between 26 and 28. So it is obvious that the breathing exercise does increase carbon dioxide.

It is interesting that the breathing training programme is set so that I actually breathe six times a minute. This sounds like an incredibly small number of breaths, but it is apparently the optimum for someone at rest. A lot of us overbreathe, breathe too often, the key, apparently, is to finish each breath completely, allow all of the air out of the lungs after each slow exhale, pause on the bottom before inhaling again.

It is tough at first, though does get easier. The idea is that the muscles that we use for breathing, which according to K are "smooth muscles", have to be trained and worked out like any muscle. The breath training allows the process to become automatic, done for long enough you should see your breathing becoming slower and more relaxed, with the attendant rise in carbon dioxide.

He also explained the exact function of CO2 in the body. As we breathe in, the oxygen is absorbed through the lungs and into the bloodstream. As the haemoglobin travels around the body with its oxygen, it meets cells that need oxygen for energy. A biochemical process takes place where carbon dioxide in the cell is exchanged for oxygen in the haemoglobin. The oxygen is then used, along with other things, to make glucose, which is the basic fuel for energy in cells.

Without sufficient carbon dioxide, this process cannot take place, and so energy is not produced as efficiently. Thus, CO2 is vital in the energy producing process.

I found all of this fascinating, as it clarified the bits and pieces of information that I got from Breakspear, and it put my own experience in some context. Since I began using the rebreathing mask, my breathing has definitely changed. I no longer get out of breath as easily, something I never really thought about before, I just thought it was an inevitable part of my ME. My breathing is also more relaxed now, and noticeably slower. I'm not sure if the breath training has had any effect on it yet, but the mask certainly has.

I have been doing the breathing training for two weeks now. K advised me to do it for three months, it is a slow process, apparently. The goal is to get my CO2 level up to consistently around 35, or even higher, and this is supposed to happen through regular practice. We will see, I will keep at it anyway. It is not going to be the answer to all my problems, but may be another piece along the road to improvement.


If nothing else with ME, you do learn quite a lot about human biology!

Thursday, January 9, 2014

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.

Thursday, December 26, 2013

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. 

Saturday, December 14, 2013

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.