Recently I was asked once again why I was off work. When I mentioned I had ME/CFS the response I received was “is that just being tired?” I was a little taken aback, but I began to think – the answer is both yes and no. I am tired, as is everyone with ME/CFS. My ME/CFS is moderate, very occasionally severe, and this means, asides from many other symptoms, I feel tired almost all of the time.
But it isn’t your normal kind of tiredness. I have worked shifts for most of my adult life so I understand the effects of sleep deprivation. This is something else. The best way I can describe it is a similar feeling to when you have been out on the town and you have had too much to drink. Imagine is about 4am, you are drunk and have sat down somewhere nice and warm. That feeling of your body aching to fall asleep, a feeling that overwhelms you, that is what it is like. A lot of times when you just can’t fight it anymore you fall asleep so fast, almost as if you are passing out. No wonder we have cognitive difficulties when we are barely conscious!
The other aspect of tiredness is sleep. I can sleep for ages but I have terrible dreams and I never wake up refreshed or relaxed. The other day I dreamt I was in a serious car accident, not long ago I was living in Tudor times and had my head cut off, I’ve been chased through my house by giant spiders. For the most part, my dreams involve me coming to a violent death or being chased by something particularly nasty.
I don’t know if you have ever woken up suddenly from a deep sleep and found that your body is weak, that you have no muscle tone and simple things like making a fist is difficult. It’s as if your muscles won’t do as they are supposed to, like the messages from your brain to the muscles aren’t quite getting through. I have this sensation a lot but instead of lasting for a few moments it remains throughout the day.
Yet another factor in tiredness is insomnia, or for many of us painsomnia. Try as I might, there are some nights when I am just too sore to sleep. Other times my mind races, contemplating “what ifs” and permutations that I have no influence over. I try to remain grounded – what are the facts, what can I influence or do, what is just nonsense and the product of anxiety.
The irony is not lost on me that a disease that makes you need rest, and lots of it, won’t allow you to have any and will torment you as you do.