The trouble is, none of the words we use to express profound fatigue are good enough. Tired just means, tired. Go to bed and feel better in the morning. Exhausted suggests you've been doing things and your tiredness has an immediate cause and will go with rest. People have experience of these feelings so when you say "I'm tired," meaning "I'm so tired my whole body hurts and I'm miserable. Every part of me aches with tiredness that is so deep it bites like a constant, low-level pain that weighs so heavily all I want to do is lie on the floor and whimper for it to go away," that's not what others hear. They don't understand, and it's impossible to make them understand, unless they've felt it. They say they do, but then they say "Can't you do a bit more exercise to help?" and "Why don't you change your diet?"
Do they think I haven't tried that? It's not easy to exercise when your body is screaming "REST!" And it doesn't help. If you do too much it only hinders. Diet changes have worked for some, but they haven't helped me. Nor has "lying in the sun," or "going out to see friends." It's nice to see friends, and helps emotionally, but the effort doesn't help physically. if anything, it triggers more tiredness.
Any stress makes things worse, and most well-meaning suggestions, frankly, are simply stress.
I've been more tired than the tired I am right now. I've been so tired I couldn't sit up for an hour at a time without feeling dizzy and sick and needing to sleep. And while sleep was necessary, it didn't stop me from feeling tired. It didn't (and doesn't) get better with that sort of rest. That lasted months.
It did get better. I struggled with a short walk to the village and needed a rest when I got back. It took me all day to wash up dishes and cook supper. I needed a doze in the afternoon. Slowly, I went back to work. I took on another job that I could do from home. Things kept getting better, perhaps related to the thyroid medicine I was taking. Perhaps not. I don't know anymore.
It even got better to the point where I didn't feel tired every day. I don't think. I'm not sure I even know what normal is anymore, and I never jumped out of bed full of energy ready to attack the day. But I worked full-time and more, went for walks, had a life. It doesn't feel good to be feeling the need to cut down on that life right now. Fewer work hours, very little walking. Lots of fucking rest in the same bed I was thoroughly sick of in 2012. Lots of anger and wanting to break everything I can see.
I want this tiredness to have a direct physical cause that can be treated, because then there is at least hope that I won't have to struggle for the rest of my life. But perhaps it's time to accept that it's not going to happen, and that accepting and learning to live with it is the best I can do.
It could be worse, after all. I'm still here. I still have partner, work, friends, books, food, most of a life. It's enough. And things might be better tomorrow. :-)