Does this resonate with you? For many of us with blood cancer fatigue is so far from being “just tired” it is hard to explain its debilitating crushing effects to others who have not experienced it. There are several illustrations people use. The spoon theory, feeling like you have the flu all the time, and the old mobile phone battery are just some. Recently I was wracking my tired brain for a different way of talking about this experience to others. And all of a sudden I thought of how I used to feel when I was working night shifts or for some other reason I had to be up at what is often called “The devil’s hour” or 3am.

At 3am healthy people typically feel an incredibly strong urge to go to bed, or just find anywhere nearby to sleep. This is true even if they are not drunk. They can often keep themselves awake if they have to, however. They might even laugh, smile, chat, or even try to revise for an exam or write something. But somehow everything is much harder at 3am. Your brain feels slower. You are emotionally drained and vulnerable. You might well get more irritable. People seem much more annoying than normal. Everything is just so much effort. Everything within you is telling you “STOP! REST!” And yet somehow you carry on. Maybe your limbs even feel heavy, perhaps you struggle to find words, you might even start talking nonsense.

At 3am even doing simple tasks feel impossible. Imagine trying to work, or do anything important. Imagine not really feeling you can trust your brain to work properly? Imagine now that everyone else around you is somehow not living at 3am. Maybe you have traveled the world and are experiencing jet lag. Your friends, family, or work colleagues as much as they know you have got off a plane, they do not really understand that for you it is 3am. To them it is the middle of their day. You might even try not to mention it. You might try to hide it. They might not even notice that there is anything wrong with you. But you feel at a huge disadvantage and you just want the world to stop so you can get off the treadmill and rest.

And yet, the nightmare of the patient experiencing severe fatigue is that their whole lives feel like they are living them at 3am. For me I can sleep 13 hours some nights, or have a sleepless night because of anxiety other nights, and it makes no difference. Every time I wake up I am still exhausted. Yes it can be slightly better or slightly worse at different times. Yes I have sudden bursts of mental energy which don’t last long when I can get something done, but even then I still feel like I used to only feel at 3am.

And I have felt this way for over four years now, without a single day of respite. Without ever once waking up feeling refreshed. Withough ever once not feeling tried.

How about you? Does this illustration explain how you feel or do others better fit your experience? Someone who read this article before it was published here said that they explain it is like having a permanent hangover.

Read more