CFS and ME

At a recent visit to my doctors, she raised the possibility that I might have CFS, Chronic Fatigue Syndrome, also known as ME or PVFS.  Which, I have to say, sucks big time.

So I have been exploring and considering what this might mean, what CFS might be caused by, at least in my case. I think I have come to an understanding that seems to work for me (and I am not offering any wider perspective, or any clinical perspective).

When I am ill, one of the things my body (and this is common to most people) does is goes to sleep. My mum says that I always used to do that, and I still do, because sleep is a natural healer. Often, when I am ill with a virus or similar, this works because the body has a chance to fight the problem, and I get better after a day or so.

The problem, as I understand it, is when this reaction goes out of control. In PVFS (Post Viral Fatigue Syndrome), the sleep response doesn't stop once the body is capable of handling the remaining infection. I have suffered with this before I think, and eventually I got over it - after three months.

The other time when it can kick in is when the body can tell that it is ill, but sleeping is not the solution. Depression is a case in point, when sleeping is unlikely to improve things. I suspect this is the case for me here, so I am hoping that this will lift given some time.

But this is not to dismiss the fact that ME can be, and often is, very long term - many years. I suspect this is still the same process, but where the response does not die away after time. the body continues to think that it needs to sleep to heal, but it doesn't.


So, that is how it feels. As I said, it is not a clinical assessment, just a representation of how it feels for me.

On a day when I have nothing else to do, I will sleep later than usual (9-9:30), enabling me to do a little bit, but nothing too strenuous. I will eat lunch around midday, and then need another snooze before being able to do a little bit in the afternoon. It is not unknown to be asleep or nearly asleep all afternoon. After tea, the evening is normally OK, but I am not a night owl, usually heading for bed for 10:00 - 11:00.

That has quite an effect on my life. I do manage to work, which is exhausting but satisfying. I know that I am fortunate to manage to work, despite the fact that this takes me out for the evening. What is more, it means that I cannot concentrate for a long period - this means that writing something like this blog is a struggle. Keeping the concentration to compose and type a piece of this is difficult.

"OK so it is just being tired then? I get that when I do too much". Once again, this is missing two of the three letters. The third word is "Syndrome", which just means that nobody really understands what it is about. The other two, that are so often missed are "Chronic" and "Fatigue".

"Chronic" means that it doesn't go away, it doesn't get better with sleep, it is always there, and there is no immediate chance of it going away. It is not just being really tired when you have been busy - it is being tired whether busy or not, whether you have had a good nights sleep or not.

"Fatigue" is not tiredness. It is the ache and struggle to move that comes with a body that wants to stay asleep, to recover, and not to have to move. And it is that ache that comes when you are so tired that your muscles are sore. And this doesn't go away with a bath and sleep.

So yes, it is real, and it is disabling.Over last weekend I was on a retreat, and I discovered what I could do, with no pressure. If I had a nap in the morning, and another one after lunch, I could cope and be gently sociable the rest of the time. I could do some writing and reading with this regime. One day I even managed to go out for a while (I would walk down the garden occasionally). That is about it. That is my ability without getting tired and incapable.

Against that it should be noted that I hold down a full time job. If you have understood that, you might realise just how much this costs me, how much it takes to achieve that and why I can do little else.