Having lived with Chronic Fatigue Syndrome (CFS – or CFS/ME, as the medical profession now place Myalgic Encephalomyelitis under the same heading) for the past 5 years or so, and blogged about it on several occasions, it’s easy to forget there are people who either don’t know I have it, or don’t really know what it is.
So I thought I’d write a slightly more definitive post about CFS, with the hope that I can also refer others to it in the future when the subject is mentioned again.
The first thing to note about CFS is, it is a label to describe a miscellaneous condition, for which there is no proper diagnosis. Indeed, it is handed out precisely because all the usual tests haven’t shown anything wrong. If something had been revealed – e.g. sleep apnoea, iron deficiency, underactive thyroid or wheat intolerance – then that would be the diagnosed illness.
In brief, if the doctor says you have CFS, he or she really means “we accept the fact you are excessively tired, but don’t know why or what to do about it.”
So CFS is a description rather than a diagnosis
Let us break down this description then.
It doesn’t go away. It’s always there and the usual remedies don’t work.
The easiest analogy is Chronic Pain. We have all experienced aches and pains, but usually the body heals and eventually the pain goes away – or we have an operation, which removes or remedies the cause. But for people who have Chronic pain, it never goes away – it is always present.
So the Chronic aspect of this can have a serious, accumulated effect on your mental health.
Let’s face it, even something like a paper cut, would wear you down if the pain never, ever stopped, and was with you for years.
The Chronic part of this is the most underestimated aspect by those who don’t suffer from it.
Rather like chronic Depression – those who have never dealt with it assume it is cured in the same way as ordinary depression – going for a brisk walk, helping someone in a worse of position than yourself, or having a laugh with friends. But the problem with Depression, the illness, is these things don’t cure it. They might alleviate the symptoms for a few minutes, or hours, but then it comes back. It is relentless.
Likewise then, with Chronic Fatigue. A rest might help a bit, but it never actually goes away. At times it is worse, and at times it is less worse. But it is always present, and always impacting on your life to one degree or another.
We all know what tiredness feels like, but most only experience for a temporary period of time. Eventually you fall asleep. Either you wake up feeling refreshed, or you start off feeling groggy, but once you get going (with or without a caffeine boost), the tiredness drops away and you are able to cope with the day.
But when you are tired, everything becomes more difficult – not just physically, but mentally and emotionally too.
When we are tired, when we feel worn out, when all we want to do is curl up on the sofa and nap, then -
- the idea of going for a brisk walk feels insane;
- the thought of doing the accounts or dealing with the finances, makes us want to run away;
- the ability to stay calm and patient when kids are being noisy, or our partner is being grumpy, becomes nigh on impossible.
And we feel we have no reserves to cope if something goes wrong.
Now tie this in with the Chronic aspect – and understand that you will feel like this for days, for weeks, for months, for years. And there is no cure, because no one knows what is causing it.
A syndrome is a collection of symptoms, which vary from person to person in expression and intensity, at different times. So there isn’t a great deal of consistency.
Some people sleep far more hours than normal, while others sleep far less.
Some suffer from aching muscles, others from aching joints, while others are not bothered by physical pains.
Some first get CFS when they are in their 50s, others when teenagers.
Some get severe sugar and caffeine cravings in a desperate attempt to give the body some kind of energy boost, while others lose their appetite completely.
For some it might ease up after a few years, for others it never will, and for others it is degenerative and will only get worse.
In essence, Chronic Fatigue Syndrome is range of tiredness related symptoms that vary from person to person and don’t go away after rest, and the cause (and solution) is unknown.
Living with CFS
This is what I have to do – live with CFS.
To begin with I put my life on hold while I thought it was just a matter of time before we got to the bottom of it and sorted it all out. Then I was going to return to my life.
After a couple of years I went into survival mode, where I gave up thinking about the future and just concentrated on getting to the end of each day.
Eventually I realised I it wasn’t going to go away, and I didn’t want to just abandon life.
So now I manage the condition as best I can.
I try to pace myself.
I try not to overdo things.
I try to avoid overwhelming feelings of loss.
I try not to allow myself to feel the crushing sense of guilt at the inevitable extra strain and burden it places on those I love the most.
I try to focus on what I can do rather than what I can’t.
I try to involve myself in activities and projects that give my life a sense of purpose and meaning.
I am not looking for sympathy or platitudes. This post was written to hopefully expand understanding on why sometimes it takes longer to respond to emails, phone calls or blog comments than I would ideally like it to.
If this wasn’t enough and you are desperate for more writings about the experiences of CFS, then you might be interested in these posts:
That Sinking Feeling (gives a brief history of my illness)
Energy Levels (an example of changing energy)
Fatigued. Chronically (the experience of always wanting to rest)
Time and a half (how time plays tricks)