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.