Does this resonate with you? For many of us 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 nigh 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. They can often keep themselves awake if they have to, however. They might even laugh, smile, chat, or even try to revise or write something. But everything is much harder at 3am. Your brain feels slower. You are emotionally drained and vulnerable. You might well get more irritable. People seem 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?
Hi @Adrian, what a brilliantly written post.
Yes, I remember working night shifts and that 3am feeling so well.
I am digressing but one day/night/day I worked 33hrs without a break, using machinery, oh, what it was to be pre blood cancer, young and before health and safety.
I have actually given up on trying to explain fatigue to people who have never experienced it.
After diagnosis in 2003 I worked full time for several years.
It was existence really as I just worked/slept/ran the home.
Luckily I had amassed banked leave and flexi time and I augmented my holiday to give me extra time to rest
Yes, I do live or actually manage fatigue on an everyday basis, I don’t do evenings full stop, my meaningful day ends with clearing up after dinner about 6pm.
Ideally and usually, since retirement I am lucky enough to have an hours nap in the afternoons to re-charge the old deflated batteries a bit.
My fatigue really kicks in when I overdo it emotionally, physically, practically or stressfully.
Since diagnosis I do not deal with what personally stresses me well.
My fatigue can come on immediately and suddenly I feel deflated, as if something has sucked all the energy out of me and everything is just all too much.
My husband says he can see it come on in my eyes, the lights go out.
However it can come on up to 48hrs after the cause.
I am lucky enough to usually sleep at night unless there is something really on my mind.
The darkest hour is just before dawn (The Mamas and Papas) and all that.
But I never wake up feeling refreshed, getting up is always a struggle.
I sometimes think that I have learnt to manage my fatigue too well and the smiley face mask covers up how I am feeling. My very pet hate is someone saying ‘oh, you do look well’ when I am feeling so fatigued, struggling, yukky and deflated inside.
Thank you @Adrian for suggesting that I put my fatigue into words.
Post keep posting how you are doing.
Hi Adrian. Thank you for a very well written post. 3yrs remission from high grade DLBCL i am starting to get my energy back and looking back I can see how bad my fatigue was. There’s still no way I could be as active as I was in the “before” times.
Hi @Irene a great big welcome to our forum, I am glad you have found us and I really related to you saying that I often cannot realise how bad I felt until I look back. I looked back at how I had written about how I felt at diagnosis and I had written quite graphically about it in my medical notes.
I know it is taking you a long time to get your energy levels back post treatment, but don’t forget it really takes it toll on you emotionally, physically and practically and unfortunately it takes me a lot longer to build my batteries back up than deplete them.
Be kind to yourself and have the odd treat.
I look forward to hearing more about you, take care.
Great to hear you are getting some energy back. its mysterious how it can do that years later…I had kind of given up on any more improvement. In fact at the moment I am getting worse but I have an autonomic dysfunction problem happening that is likely a secondary issue but is causing me major issues not just with fatigue.
Gosh @Adrian it sounds as if you are going through a really rough time at the moment, I don’t expect the hot weather and perhaps the relentlessness of shielding does not help either.
I am definitely feeling the latter 2 things.
Take care of yourself and this was a brilliant post to start, thanks so much.
How are others feeling?