HANGING ON BY A THREAD

I knew that it was too good to last.

I have made some progress in my health situation in the last six months, a five or ten per cent increase in my energy and activity levels. It is not enormous, but is substantial enough to have made a difference in my everyday life.

Some weeks recently I have taught close to a full week, which is revolutionary for me. It hasn't been easy, but it hasn't been too difficult either, I am very organised and do organise my life around my work to a certain extent, and so know how to manage the increased work load. It is the most I have worked for about twelve years.

Yet two weeks ago I got a stomach bug. It wasn't much, to be honest, I think I probably picked it up from my three year old niece, some cramps, a little diarrhea, nothing too serious. I felt more tired than normal, though was able to keep going, and didn't take any time off.

By Sunday evening, though, I realised that I should have slowed down a bit. I had gone for a walk that morning, and then shopped that afternoon and by the night time my stomach was worse, I was exhausted and anxious. Monday morning I got up and taught a two hour class, and went home. By the afternoon I realised that I could hardly make it down the stairs, cancelled my classes for the rest of the day and went back to bed.

Since then, ten days ago, things have been tough. I tried to get back to some tiny amount of normal activity, and realised that I couldn't do it. I have been exhausted, shaky, anxious, depressed, dumbfounded that it could all go so wrong so quickly. I made it out to the local supermarket the other day, and spent ten shaky minutes gathering some supplies. Nothing is easy, everything is an effort, my previous activity level is a distant memory.

This is far from the first time that I have experienced this kind of crash. I wrote about my last one here. These relapses always happen after an infection of some kind, and usually occur at just the wrong moment, when I am busy and relatively well, health wise. If my energy levels are not too bad for a while, I develop a false confidence, an erroneous belief that I have become bullet proof, impervious to a further worsening of my condition.

So, in these moments of relative health, if I get sick with a cold or stomach bug, I keep going, or try to get back to activity too soon, and often crash. These crashes have been the worst times of my life, no question. They can last anything from a month to six months, and involve all of the worst elements of ME/CFS, magnified by the depression and anxiety that always accompany such an event.

And it has happened again. I will probably be alright, eventually, I have been through this many times before in my sixteen years, so am trying not to panic. Yet from the way I am feeling now, it could be a couple of months before I get back to where I was pre relapse. This is hard to take when I was doing so well, and beginning to be confident in my new levels of health.

I have been quite depressed by the whole experience. I feel like a failure. There is the natural depression that comes with not feeling well, and with facing weeks or longer of inactivity and struggle. I am also quite isolated, as I have not been working, and so spend practically all day on my own.

More than that, though, is the depression that comes from the realisation that I can never, ever, ever, ever, ever, ever, ever, ever drop my guard in the future. Never. Unless someone comes along with a cure, there will always exist the danger of crashing, the spectre of relapse is constantly just around the corner, only an innocuous cold or stomach infection away.

The threat of disaster is a constant, and that is hard to live with. It makes my whole existence insecure, uncertain, frightened. I have recently got some work teaching English to foreigners in the local adult education organisation, my first real actual "job" I have had in ten years. I haven't been in work for two weeks now, and it is unlikely I will get back before the course they have given me finishes, at the end of June.

This was something that was important to me, and is now likely destroyed.

It is of course true for anyone, in any walk of life, our lives can be sabotaged in an instant by bad luck, illness, accident. Yet for someone with ME/CFS this is especially true. It is a tenuous existence we live, no matter how ill or well we are at any given period there is always the possibility of something happening out of the blue that can cause our carefully organised lives to - at least temporarily - fall apart. This is the reality we live with every day. We are tightrope walkers, trying to stay balanced, desperately hoping not to fall.

And the truth is, if I had remembered this two weeks ago, I would have taken time off work immediately, rested for a few days, slowly built my activity levels up until I was fully sure that I was over my bug. Instead I kept going and crashed. This is not an attempt at recrimination or self-blame, simply a statement of fact, and possibly a reminder for the future.  

In truth it is completely understandable that I kept going. I was busy, occupied, involved in my life, not wanting to stop. It is a hard decision to make to drop out for a few days or a week, after I have lost so much time in the past. Unfortunately, not doing so has caused me to lose much much more time.

It may be understandable that I didn't stop and rest, but it cannot be acceptable in the future, if I want to have any kind of life. A couple of wrong decisions have put in jeopardy my financial security, the little work that I have and a potential of work in the future, as well as causing me the trauma of having to recover from this excruciating relapse.

One busy day at the wrong time has caused the bottom to fall out of my world.

This is another of the elements that is a weight on someone like me that is dealing with this complex, chronic illness. They are my actions that cause these horrendous experiences, the crashes I suffer are usually down to the combination of an infection and my not resting enough, not recovering well enough, of pushing myself too far at just the wrong time.

This is a hard piece of knowledge to bear. It puts a lot of pressure on the way I live my life, having to be safe, having to take care, having to avoid risks and manage myself and my life carefully. And generally I do, I am careful, I eat well, avoid stress, don't overdo it. And yet, one slip and disaster can occur. It is a lot to live with.

This knowledge - of how much danger there is in trying to live a normal existence with ME - does add a layer of insecurity to everyday life, and a sense of impermanence and shakiness. I have seen, over and over again, how easily it can all collapse. It happened just last week, and will likely take months to repair.

The truth is, I have begun to believe that it is simply beyond my power to manage this condition. One way to keep myself safe would be to only work a small amount, minimise any kind of stress or conflict, to not go out and to live a very quiet, unadventurous life. To say "no" to everything. And yet I am incapable of sitting still and denying my life. To me it is a form of death to turn down opportunities and shut myself off to possibilities in order to keep myself safe.

They say that the price of freedom is eternal vigilance. The same is true of health.

I have managed to scrape together some kind of life from the wreckage of the last sixteen years of illness, but without constant vigilance, with one slip, it can be gone in an instant. I am beginning to think that such vigilance is beyond me. It feels like I am simply not going to be able to keep myself well for any length of time while trying to live a life.

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.

RELAPSE 2: SHRINKING

It is now six weeks since I crashed. I have made a partial recovery, but am still well below where I was pre-crash. Two steps back, one step forward. It has been a difficult time.

I have come more or less to understand what happened around the time of the relapse. To explain it fully I would have to go back a bit, to my last Breakspear appointment.

There, I had an autonomic nervous system test, which showed that I had low levels of carbon dioxide (CO2) in my blood. To rectify this the doctor, Dr Shah, gave me a rebreathing mask. I wrote about this here.

The mask is one that fits over my whole face, and has a tube attached. What happens is that when you breathe out while wearing the mask, the carbon dioxide that is breathed out is trapped in the mask and so when you breathe in again, you breathe in extra CO2. This is supposed to raise the levels of CO2 in your body.

The "blood gases" are carbon dioxide and oxygen, and for proper functioning of the body there has to be an adequate balance between the two. The autonomic nervous system (ANS) relies on this correct balance.

Anyway, I came back from Breakspear and started using the mask. I used it for a week, starting at an hour a day and building up to three or four a day. The instructions from Breakspear were to use it for at least four hours a day, and more if I could.

Then I visited a friend of mine, who has kids, and stayed over in their house. Everyone in the house progressively, over the weekend, came down with a nasty stomach bug. I escaped on Sunday evening, thinking I had gotten away with it, but by Monday morning felt horrible, went to bed for the afternoon. I didn't eat for about 30 hours.

When I was recovering from the stomach bug, which knocked me out, I stopped using the mask. It was unwieldy and uncomfortable, and I hadn't noticed any improvement, so I didn't think stopping would do any harm. I had intended to start up again soon.

A week later, while trying to slowly get back to some kind of activity, I crashed. The relapse bore a lot of the hallmarks of previous crashes, insomnia, anxiety, complete exhaustion, shakiness, weakness.

It was a bad crash. I was incapacitated for a few days, and slowly, over days and weeks, began being able to shower, make food, make it up and down the stairs. My limbs were incredibly weak, my voice, I noticed, was really weak, talking of any kind was an huge effort. I was frightened and sleepless and depressed.

I began taking some anti-depressants, which helped a little, and slowly managed to make it out of the house every day, briefly. Still, I was a million miles from where I had been pre-crash. The weakness, in the limbs and in the voice, hung on, and was quite scary. I had no power at all. I couldn't see how I was ever going to get out of it, to get back to work, what I was going to do.

And then I started using the mask again. I felt immediately a little better. I felt sleepy during the day for the first time in weeks, a pleasant, relaxed sleepiness. I started with an hour a day, broken up into fifteen minute sections, and slowly increased my usage of the mask. The weakness faded a little, and my sleep improved, I stopped waking up during the night for 40 or 50 or 60 minutes.

That was last week. I haven't had any more improvements since then. What I think happened now was that after using the mask for a week initially,  my body somehow got used to the extra carbon dioxide, even though I didn't feel any better during the time. And when I stopped, I got stuck somehow in even more of a deficit of CO2. This deficit, coupled with the aftermath of the stomach bug, weakened me, and when I tried to get back to normal life, I crashed.

Of course there is another element to the relapse, and it is a deadline. Deadlines have always been lethal for me in terms of worsening of my ME. By 'deadlines', I mean having to be well - or telling myself that I have to be well - by a certain date. This leads to pushing myself, doing too much at the wrong time, getting frustrated. A lethal mixture.

The deadline this time was a flight to Spain that I had booked for the following week. It occurred to me, while trying to get over my stomach bug, that I needed to start doing things now, a week before my flight, if I was going to be able to manage to make it to Spain, let alone last four days there. So I forced things, pushed when I shouldn't have, and the rest is history.

It almost doesn't matter how it happened now, though. The key thing is that it has happened, and I have to deal with it. As anyone who read my last post will discover, I haven't been dealing with it very well. I have been very depressed at times, despite all of the anti-depressants I have been taking.

Now, though, I am continuing to use the rebreathing mask, and hoping for a little more improvement, though as yet I've had nothing. The story with the mask is a little more unclear. I used it for a week, felt no benefit, and assume that my body reacted badly to being denied this extra CO2 when I stopped it. I don't do well with abrupt changes of any kind, and I assume that that's what happened. Then, after the crash, I suppose I got stuck in this extra cycle of CO2 lack, and spiralled even further down.

Whatever the truth, I am operating now on about 15/20% less energy than I had pre-crash, and it's not coming back. Things that were doable and not needing enormous effort just two months ago are now tough, like going to the supermarket, or meeting a friend. Everything is an effort, a struggle.

I have an intermittent tight chest, continued weakness in the limbs and in the voice, a shakiness and shortness of breath that wasn't there before, and a worsening of my digestion, with more gurgling and gas. I am shrunken, less than I was.

The implications of this are many. Having less energy means I will have to shrink my working time and increase my time resting. And of course my income has shrunk too, and so I will have to budget even more carefully. My social life has shrunk to almost nothing, and time spent with friends and family will have to be cut back.

What has increased is this dread and fear for the future. The truth is that another relapse like this, and I will be close to house-bound. My greatest fear is not being able to look after myself, and that is really one serious crash away.

I now see the world as a threatening place. Especially now, at the beginning of winter, the world is full of infections, and viruses, of stress and opportunities for over-exertion, a myriad of potential threats. This experience - sparked by a seemingly innocuous stomach infection - has shown me that there is no escape from ME, there is never an end to the danger, you can never, ever drop your guard.

ME is always there, waiting for a chance to pounce, a moment of weakness, waiting for an opportunity to increase disability, to add insult to injury. There are a few things that I intend to try, to attempt to make some progress, get back some of what has been lost. However, my life, my shrunken life, for the moment, is about survival, and little else.