Sunday, March 30, 2014


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


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.